UPDATE: I decided to put all the info about Benign Joint Hypermobility Syndrome up on it’s own blog. I’m going to leave this stuff here for now, but please go here to read updates and see more information on the disease, as I learn it. Thanks!!!!
OLD INFO:
Don’t worry, this isn’t about to become diseaseblog. As someone with a rare, chronic illness that does affect my cycling life (as well as all other areas), I figured it would be a good idea to post something about it here. That way I can both explain myself with a simple hyperlink, and help others who are looking for information on life with what I have.
Disclaimer: I am not a doctor, nor do I play one on TV. I’m only explaining things as I understand them, and to the best of my ability. I can’t give advice, beyond recommending stuff I already do or have tried. I may be wrong about some of this (it happens). This is just my experience.
Benign Joint Hypermobility Syndrome is the technical name of what I have.
Parsed: Benign meaning “it will not kill me,” not that it’s all fluffy-kittens-and-sunshine. Joint Hypermobility meaning my joints move too much in the wrong ways (yes, “double jointed,” though of course I have only a single set of each joint). Syndrome meaning that this problem creates a cascade of other issues throughout my body.
The Basics: essentially, BJHS is a connective tissue-based disorder. Somewhere along the line, my genetics have made it so that I don’t either produce enough of, or don’t process completely, the protein collagen. Collagen is like the scaffolding for every connective tissue in your body. Connective tissues include: skin, muscles, ligaments, tendons, hair, bones, eyes, blood vessels, spinal discs, cartilage, the intestines, the heart, the liver… basically, everywhere. In fact, I can’t actually name a part of the body that doesn’t contain it.
Loose muscles/tendons/etc. leads to loose joints, which leads to pain. But there’s so much more to this disease than that.
Part 1 – Loose Joints: Loose connective tissues mean joints that move too easily, which means pinched nerves and pain. Think about how it feels when you throw your back out, or get carpal tunnel syndrome. Now imagine this feeling all over your body.
The biggest problems for me lie in my spine. A loose spine means several things:
- My spinal cord is stressed or compressed, especially when I sleep. This compression triggers my autonomic nervous system to create a “fight/flight” response. This, in turn, creates anxiety, sleeplessness, and an amplified response to pain. Do not underestimate the sleeplessness part of this. It’s HUGE.
- My nerves get pinched, causing several types of pain. I get back pain, obviously. I get numbness and mild paralysis in my thighs and hands. I get weakness in my legs and arms, and sciatica/restless leg sensations if I sit too long. Worst of all, I get parasthesia in my fingers and toes (that’s the tingling, painful sensation you get when you sit funny and your foot goes numb, then starts to wake up). I have this sensation, in varying degrees, all the time.
- My immune system is hyper-active as well, mounting elaborate, full-scale mucus or lymph node or other responses to mild colds and viruses. I’m sick a lot longer than normal people, and a lot more seriously, yet it’s not due to a poor immune system, but rather one that’s too strong.
That’s not all, though! Those loose connective tissues aren’t just affecting my spine.
I have painful big toe joints, so no high heels for me. Walking long distances can be a disaster, so good shoes are very important. I suffer from plantar fasciitis, which means the bottoms of my feet hurt, especially in the morning. Depending on where my disease is in its cycles (I have flair ups, and flair downs, much like many diseases. These seem to be hormonal), I also randomly dislocate my fingers and toes. They pop forward, then back, leaving them bruised and painful for several days. This isn’t technically a true dislocation, as they pop right back, but I don’t know what else to call it.
Part 2 –10 Other Bad Things:
- Insomnia: did I mention the hyper-wired, jazzed-up, over-talkative, never-shuts-down nature of my brain? That I get more hyper the more exhausted I become? That I used to sleep so lightly that my roommate in college could wake me up by writing in her journal? Did I mention that, without the right meds, I probably get one or two nights of truly deep, restful sleep… a year?
- Liver metabolism: I have serious problems processing medications, as I have a liver that is slow to metabolize chemicals. I cannot take a very long list of drugs, including most pain killers. This also includes naturopathic treatments… even my own hormones! I get side effects (or no effects) with everything I take. As my naturopath likes to say: “You just walk by a chemical, and it affects you.”
- Complex PTSD and anxiety: like the stuff combat veterans get, only not quite. Caused by excessive exposure to stressful situations that one cannot escape, like, say… a bully at work (not saying that was my situation. Just as an example…). Though I received great treatment, people with BJHS are prone to stuff like this: fight or flight, remember?
- Heart palpitations: yucky, but harmless
- Irritable bowel syndrome
- Sinus problems and severe allergies (go immune system, go!)
- GERD (bad acid reflux)
- Poor balance and an inability to fully understand where my body is in relation to everything else.
- An inability to regulate body temperature, including both freezing extremities and excessive sweating, sometimes at the same time
- Hair that breaks easily and nails that are bent and curl off the tips of my fingers, as well as fingers that wrinkle like I’ve been in the tub for days
Everyone who has this disease suffers differently. Many people are hypermobile (my doc says 20% of the general population), but very few suffer from BJHS. Why is that? I’m not all that bendy. Remember the Presidential Physical Fitness Test back in the 80’s? I always flunked the flexibility part (my thigh muscles are short and tight: this turns out to be a blessing, as it keeps my hips in line!). So why did I get all the nasty side effects? No one really knows, but there’s clearly a genetic component, as well as other issues like scoliosis, that affect the progression of the disease as well.
Part 3 – Three Good Things
- Hypermobile people have fast neural connections (fight or flight, my brother, fight or flight). They think quickly. Very quickly. And easily. Bang-bang-bang go the neurons and understanding is born!
- Hypermobile people are good at yoga, until they hurt themselves by stretching too far. Before that moment, though, they are really impressive.
- Hypermobility appears to keep me from breaking my bones. I have had some very serious falls on my very hypermobile wrists that resulted in… nothing. I think I just bent instead of breaking. I can’t confirm that this is true (there were no double-blind tests done here).
Heredity: There’s some controversy over whether or not BJHS is hereditary. People who are heavily invested in studying BJHS’s more exotic cousin, Ehlers-Danlos Hypermobility Type, like to think that BJHS is just a crock made up by docs who want to profit off whiny folks whose joints hurt for no discernable reason. The few docs who treat BJHS believe fervently that there is a genetic marker for this disease, but science just hasn’t found it (or them) yet. I’m sure there is. My mother suffered from many, if not all, of the same complaints I have when she was my age. She was referred to a rheumatologist, who is the doctor who would deal with these types of diseases, but she never received a definitive diagnosis. Since she died of breast cancer over ten years ago, I can’t ask her about it now, but I’m sure it was the same disease. A set of diagnostic criteria for this disease was around in her day, but few rheumatologists were trained to spot it. Today, the criteria are more stringent, and pretty much all rheumatologists are trained to look for BJHS.
Diagnosis: The best way to get diagnosed, in terms of this disease, is to visit a qualified rheumatologist, but there’s just a word of caution here: there are almost no official specialists in this disease in the United States. Like, none, really. So while lots of folks can spot it, almost none can effectively treat it. I see a specialist in my area, but I got lucky: I had to badger literally every rheumatology department/group in the entire Northwest before I found my doctor, and he’s not technically taking new patients. Even the Mayo Clinic has no specialists.
In London, there are a few specialists and an actual Hypermobility Clinic. But it’s the British medical system, so take that information as you will, in terms of their easy accessibility to folks outside (or even inside) the UK.
Anyway, the standard for diagnosis is called the Brighton Score, and tests for both hypermobility in the joints and pain.
Treatment: Good BJHS treatment involves treating sleep disorders and rehabilitating the spine. So far, though I haven’t been in treatment for long, this seems to help me a bit, especially in terms of my over-active immune system. Getting enough deep, restful sleep is a critical component of staying well.
Sleep: I take a combination of Ambien and a low dose of an anti-anxiety medication called Lorazepam. In “normal” folks, this combo would actually reduce the amount of time spent in REM sleep, but things are different for us hypermobile types. Combined, these medications help me get into a deeper state of REM. I still have behavioral issues with sleep, though, as I find it very hard to go to bed (fight or flight). I am hoping that some Cognitive Behavioral Therapy will help with that. The good news is, having completed an extensive sleep study, I have confirmed that on this combination of medications, I sleep like a normal person! This means I’ve been sick much less since I started this treatment.
Pain: Pain meds are dicey treatments for any disease, so I use them sparingly. I take ibuprofen when things hurt, and never take opiates, even after surgery, if I can help it. I just don’t find they work well for me. I haven’t found the big guns pain meds work much on my daily aches and pains anyway. The most effective pain management treatment I have found is targeted massage therapy and chiropractic care. Combined, these help to keep me with a very low, manageable level of pain.
Update as of 7/8/11: My WONDERFUL massage therapist has been doing a new treatment for me, and after four treatments (1 month), I’m really feeling like this is helping tremendously with much of my pain. He is doing something involving pressure points and ligaments. Basically, he puts pressure on certain points and then has me move my body in counter to that. This helps the ligaments release, and the result is immediately noticeable. For example, when he works on my feet, the one he finishes first feels instantly looser and less painful than the other one. Not just a little, but a lot! He then stretches that area, and the difference in mobility between the two limbs (one worked, one not yet worked) is striking. Though my hands are still an issue, this treatment seems to be doing wonders for my feet and back. In fact, this week I asked him to do nothing but this treatment, skipping relaxation massage altogether! I think for my hands, we just haven’t found the sweet spot yet, but it’s coming. My pain is noticeably lower, and has remained that way longer than normal.
Update 8/14/11: The treatment still works better than anything else I’ve tried. We’ve found ways to reduce the pain in my hands as well as my feet, though the relief is not as thorough. My trip to Ireland was largely pain-free, which is a big change compared to the week I spent traveling in London just last year. The therapy is a form of myofascial release, focusing on ligaments. Training for this specific form of massage is available to most therapists. Give it a go!
Update 10/16/11: Remember that for anything to work, you have to take care of yourself! So I went to Ireland, and messed up my sleep schedule. Then I came back and spent three weeks knocked out with killer bronchitis. Then I fell, hard, onto my hands and knees and didn’t go see the doctor. Then I let my sleep problems get worse without revisiting my sleep doc. And I’ve been missing most of my massages due to scheduling issues. So here I am, a few weeks later, with severe pain in my hands, wrists and forearms that comes and goes, but that is pretty debilitating. I’m trying out voice recognition software next week, seeing a new primary care doc (to satisfy the needs of my new health plan), and heading back to the sleep doc once I have a new referral. I’ve been (mostly) going to my massages. But in the end: it’s a chronic illness. It will get worse if you slack off on what matters. Lesson learned (ouch).
Here’s an article on a study Group Health did (and my therapist participated in, I found out when I mentioned it today) on pain relief and massage. It really is the most effective treatment I’ve found. There are no side effects. Because of that, it’s cheaper than most medications (though not all health plans seem to have caught on to this yet) since pain meds often cause so many problems that more meds are required to counter the effects of the pain meds! I don’t understand why it isn’t the primary go-to treatment for chronic pain, at least before people are put on possibly addictive medications. If your health insurance covers any massage at all, the article suggests it’s well worth the effort to go and get a good work-over by a qualified therapist.
http://www.grouphealthresearch.org/newsroom/newsrel/2011/110704.html
All the other symptoms of this disease I either tolerate, or treat symptomatically if I need to. I’d love to figure out a way to really get my digestive system fixed! Probiotics help, but nothing has completely stablized it yet. My asthma has disappeared with proper sleep (no kidding, it really has!), but my allergies are worse, probably because my immune system is no long hyped-up.
Final Word: If you have BJHS, or think you do, there are many resources out there to help your doctor navigate treatment. The work of Dr. Grahame in England is critical. In the end, this isn’t a fun disease to have, but it isn’t the end of the world. Riding a bike works well for me as therapy. Something else may work best for you. Good luck!
Links:
The Hypermobility Syndrome Association
My favorite JAOA article explaining what this stuff is.
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Thanks so much for posting your experiences. My 10 yr old daughter Colleen was recently diagnosed with this and we are in the early stages of physical therapy and trying to get a good brand and dose of Melatonin. She has had multiple problems for 2 years but we just now got this diagnosis and everything fits. You are the first person to mention illness and that is a big concern of mine. During the last 2 school years she has been sick alot. Multiple strep throats, even after we had her tonsils out. Has anything worked for you to improve your impume system?
Thanks, Ann Gilfoyle
Hi Ann! I’m sorry to hear that your daughter has been having problems. I’m very hopeful that my son will escape this diagnosis.
For me, the illnesses DO seem to have gotten better since I started using different sleep medications. It’s hard to say, as it’s summer and I’m not at work anyway, but I haven’t been ill in the last four months since starting this therapy. Your daughter should have her sleep cycles carefully checked by someone who knows how to watch for her ability to go into deep REM sleep. Sleep disturbances can lead to immune system problems.
Hypermobility doesn’t give you a poor immune system: it gives you an over-active one. This wouldn’t lead to multiple strep throats, so I think it would be worth talking more to her doctors about this, in case she has more going on than just hypermobility.
Good luck!
thanks so much for your info, I’m investing hypermobility as a possible cause of my chronic pain and weak ligaments…I found this article helpful.
Do you know the name of the treatment your massage therapist is doing with you to help your ligaments? Thanks!
Hi curious! Thanks for the compliment.
He calls it ligament release massage, but I think it’s just another type of deep tissue/myofacial release massage. Because he’s been treating me for so long, he has a real interest in things he thinks will help. Anyway, he puts pressure on a ligament at specific points and then I push against that pressure. It works much better than simple massage, though it doesn’t leave me totally pain-free. Stress, in particular, and sitting too much (rideblogging :)) can cause flare-ups. Still, I’m much better than just a month or two ago. It’s quite impressive.
Hi There – I have to follow on and say thank you so so much at 27 years old and having a few issues I by pure chance saw a physio who diagnosed me with this – and I now know 4 females in my family – mother, grandmother and two cousins who have since been diagnosed to.
So we’re not a family of cranks it appears just genetically different!
I really cant thank you enough since some symptoms I have I haven’t mentioned to my physio but seeing that they are identical to yours I now will.
I guess now the next stage is to learn more about it and work with it rather than against it. I also have to say for me the aches/nerves/temperature/numbness and racing heart have been worth the bad falls I’ve bounced from, the fact I haven’t ever broken a bone, I didn’t have to have huge operations and rods in my legs and that I’m a great swimmer make it a good comprise. I just hope to dodge the inherited osteoarthritis that mother and grandmother have through it.
Hi Secretsmiler! My mother had osteoarthritis too, so I wonder if that is related. Don’t know…. I know that my only arthritic joints are in my big toes and my thumbs. Glad to hear you’ve been diagnosed and will hopefully find good care! Hang in there!
Hey, I read you blog but had never heard of BJHS before. Good to learn something.
It’s great to hear that massage is working for you. My boyfriend often has back pain (partly due to sever scoliosis). I got him a Groupon to a acupuncture/massage clinic for his birthday and hope that will help. It’s not a surprise for me that massage isn’t recommended more by health practitioners, as there is A LOT of money in prescribing pain medicine/pills. It’s very unfortunate that our health system works this way.
Also, not sure if this would help, but I’ve been reading The Green Pharmacy by James A Duke, which has a lot of different herbal/natural remedies for different ailments. I’ve found it too be a great resource, and I bet you could find something for your stomach problems/asthma in there, if not something you could ask your naturopath about. 🙂
Thanks Lauren! I think my massage guy mentioned this book to me. I have to really careful with herbal and natural remedies, as I process EVERYTHING strangely, even natural stuff. My naturopath doesn’t give me anything but probiotics anymore, without a great deal of forethought. The last suppliment she gave me had such nasty (and personal) side effects that she’s sworn off giving me anything unless I’m at death’s door! 🙂
I’m glad I stumbled upon your site! I had bilateral sacroiliac joint fixation surgery done three months ago to fix instability I had there, and have been told by one doctor that I have BJHS. He wasn’t one that I had a lot of trust in. I have many joints that are spontaneously painful (seems to be related to the position I sleep in), and then resolve in 1-2 weeks. The joints that get painful also are quite hypermobile, but not every joint in my body is hypermobile. Interesting you bring up the sleep stuff … I’ve never slept well and have taking Amitriptyline for the past 10+ years. I’m currently looking for someone who may be able to tell me if I do, indeed, have a connective tissue disorder (like BJHS), and may need to re-think my career, or if I just need to strengthen my whole body to meet the daily demands I place on my body as I work as a pediatric physical therapist.
Thank so much for writing, abeautifulcollision. It’s a hard diagnosis to get, as the disease is rare, yet it’s easy to diagnose and not treat. Before you rethink careers, I’d have your doctor order a sleep study. The last few days have been very stressful for me, and I haven’t slept well: boy do I notice the difference in my body! Just working on sleep issues may make a huge difference (well, as any insomniac knows: it will make a huge difference no matter what!). Hang in there, and keep me posted if you find new info that helps.
MishMash
Greetings! I know this is kinda off topic but I was wondering which weblog platform are you using for this website? I’m getting fed up of WordPress because I’ve had problems with hackers and I’m looking at options for another platform. I would be fantastic if you could point me in the direction of a good platform.
MishMash, this is WordPress. I do get a lot of spam, but I just delete it. No problems with hackers. I don’t know of another platform that’s as easy to use.
Hi there, I also found your blog very helpful, thank you.
I was first diagnosed with BJHS when I was 16. There is no similar symptoms in my immediate or distant relatives, so i must be a mutation :). Previously at age 12, i was diagnosed with hyperhydrosis due to my tense neck and shoulder muscles. My hands would literally saturate my papers in class. At age 15, I was diagnosed with mitral valve prolapse with moderate regurgitation. My cardiologist attributed my constant tiredness to my heart and poor circulation.
I ran track and of all the worst possible things, I was a pole vaulter. All the stretching and warm up activities worsened my already incredibly unstable joints to the point where my hips would pop out with every step I took. My rheumatologist didn’t give me much information, but gave me a strong useless anti-inflammatory and referred me to a physical therapist. I was told my BJHS was due my rapid growth spurt of 7 inches in 9 months at the age of 12( which now, i know is a load of crap). I did physical therapy for 3 months which seemed to help a decent amount. For the next few years, everything was on the upswing from when i was at my lowest point.
With in the last few months, i’ve found myself approaching that same low point again, at almost 21 years old. After doing much of my own research i’ve concluded that although my joints have been much better over the last few years, many other symptoms have popped up that i thought were unrelated. painful back and neck problems, stomach issues, anxiety, worsened sleeping in every aspect. I was seeing a chiropractor to deal with my neck and lower back pain, but decided that was more harmful than helpful because i’m so delicate. I’ve been getting massages for the past 6 months as well, which seem to help loosen my rock-hard, concrete slab of back muscles temporarily. i feel as if i’m constantly carrying around gallons of milk( although, my hands are empty) due to the constant pulling strain on my shoulders. The worst part is by far my elevated lack of sleep, which in turn leads to more pain, which leads to less sleep and i’m sure you’re all too familiar with the viscous cycle.
I can’t get through work with out taking a high dose of hydrocodone (tylenol, ibuprofen & aleve dont touch my pain) I’ve been seeing my GP since i found the rheumatologist quite useless. I had my adrenaline levels tested and they came back normal, so im just assuming my fight or flight responses just go off at all the wrong times. Could you please tell me what the dosages are for your ambien and lorazepam and approximately how long did it take you to find the right medications for yourself? There is very little on the web about treatment for BJHS medication wise and I wish I could find more info.
Hope all is well with you!
Hi Chloe, I’m so sorry to hear that you’re in so much pain at such a young age! I, too, went through a very painful period at about that point, with terrible migraines that nothing could touch, and severe back and neck pain. I wonder if it’s a hormonal thing, somehow? It eased after college. The level of joint dislocation you experienced suggests you might have a more severe form of this, like Ehlers-Danlos. I’d find a new rheumatologist to see if you can’t get better treatment.
I’m on a 10mg dose of Ambien, but that’s just because I’ve been using it so long. Most people start at 5mg, and it knocks them cold. Then I take just 1mg of the Lorezapam. It might be worth it to see a sleep specialist and see if trying a combo like this doesn’t help.
Chiropractic can be touch-and-go in terms of whether I can handle it, and I find it’s important to get the right chiropractor. You might try switching to see if a different chiro helped get you a gentler treatment. I will admit: seeing the chiropractor hurts me. It hurts me when I get the adjustment, and it hurts me for about 24 hours afterward. That said, if I don’t see him every couple weeks, the pain I experience the rest of the time is so severe that it’s worth the 24 hours of soreness. Sometimes I need to see him more often, and sometimes less. I can often go a month if I have regular massages.
Hang in there. You aren’t the only young woman with this (I had a student with it last year, and her pain was worse than mine as well). I would suggest you also think about seeing a pain specialist. Just relieving your pain could help you deal with all the other stuff that goes along with this.
Start with the sleep, then try a new chiro, then I’d go see a pain specialist. Keep slogging away. My diagnosis took three years, countless docs, and I’m still up and down in terms of pain. But I’m better, and I’m educated, and that makes a big difference.
I was reading this nodding and nodding and nodding. You did an excellent job explaining it. My docs can’t decide on BJHS vs. Ehlers Danlos due to my numerous crossover issues. Most just think it’ s BJHS with fibromyalgia. I’m in the EDS camp myself. Too much going on with my immune system and orgrans for it to just be BJHS in my opinion. IT’s really hard unless you have ruptures of the skins or EXTREME mobility and joint issues to get EDS taken seriously unless it’s anything but Type III- The issue for me unknown until recently was ALSO my spine which affects everything else. The cocktail of drugs they’ve tried for sleep pain was insane. Now I am down to just a few Tramadol for breakthrough pain, Lexapro for anxiety and “flight’ “fight” as you describe and sleep and muscle relaxants and now Arthrotec for the athritis in 4 spots in my spine. I also have epidural injections in my neck with a pain specialist for a misbehaving disc 3 times a year. But I consider myself lucky. People have things much worse. I can at least work if I keep my sleep and stress under control.
Laura, I’ve just switched sleeping meds, so I’ll have to update the blog in a few days to reflect that. It’s actually just a dosage change.
I can’t understand how all these diagnoses work, or how docs think, to be honest. It’s almost like there needs to be more specialization, not less. Sigh.
great post I’m a huge biking enthusiast from USA
Your blog is very interesting. I have been trying to figure out what is wrong w/ me. I have all the same probs as you have listed, except the sleep prob. Well, in addition I had severe stomache probs then took away milk and BOOM, no more stomache probs. This helped enormously w/ sinuses too. I never get hayfever anymore. When I pinch a nerve I immediately pop Advil and lay down w/ a gel icepack. I wont use a heating pad anymore bc they make me so comfy I fall asleep and that is absolutely the worst!!! I had no idea that the tingly/sleepy fingers, etc was related. I assumed I had poor circulation. Dr’s dont produce results for me so Ive learned to figure out my own. Thanks for your article. I appreciate it. Good luck in the future!
Thanks, Gigi. Many things can cause parasthesia, not just BJHS. Pinched nerves are definitely the primary cause. And I always thought I just had poor circulation, too!
Hi had to post. I have not been diagnosed with Ehlers Danlos but I have been diagnosed with Ankylosing Spondylitis I have some fused joints and I also have a form of Autism called Asperger’s. I have been very flexible most of my life….especially my hands, fingers and toes, hip and legs. I used to be able to sit on the floor with my legs apart and lay flat in between them. I always sat in a odd positions and could pop one of my fingers out (dislocate it) but I stopped doing that because it hurt….I mainly did and bend my fingers around to impress other kids. I also would answer my foot like a phone and could put both feet behind my head and walk on my hands. I have found that it is very common for people and kids with various forms of Autism have very flexible joints and its common for them to have small fractures and dislocations. I have three kids with Autism out of my five. I have dislocated my right hip several times mainly when I was pregnant and I learned just to have someone yank on it until it popped back in. I also dislocated my little toe several times….ive lost count. My son woke up one morning in severe pain when he was about 3 years old, he could not walk or move his right arm. The doctors never knew what was wrong but that elbow is hyper flexible and the pain and inability to move did not go away for a couple weeks. We all four (me and my autistic kids) have the soft, stretchy and prone to stretch mark skin. My youngest daughter has so far cracked her elbow, she has classic autism and typically holds things with her feet but they say she has low muscle tone in her large muscles. She tires easily and the doctor has ok’ed her for a big kid stroller due to it. She falls easily and spends most of her time in her ball pit or on her back reading or playing with her iPad holding everything with her feet.
My 19 year old who has Aspergers and flexable joints and can dislocate her shoulder now has all the symptoms of POTS syndrome which I have read is connected to Ehlers Danlos Syndrome.
I have been in serious chronic pain and have nerve damage and my AS, as I mentioned, but the doctors think there is something else going on…..I think I know what it is. I go to the spinal clinic in a few weeks to be assessed by different doctors so I will mention my hyper flexible joints to her and also how that and Autism and Ankylosing spondylits and other auto immune diseases run in the family. I fortunate to live in France where I get a lot of help. I have two aides and my kids have free transportation and I have a lady who comes to make my kids lunch and clean a bit as well. I have to use a reclining wheel chair as my spine is bending inward (lordisis) due to a artificial disk replacement that my ortho surgeon says should not have been put in my back….my spine is very fragile and the disk replacement is too large. I started having serious issues with my AS at age 27 and Im now 44 so my nerve damage is permanent so I will probably always have difficulty walking but I hope that the doctor can help me to sit again. I have to lay down most of the time….even my wheel chair (its rented till I get my own) I am not comfortable in…..it tilts back somewhat but I still have serious pain in my tailbone and hips. I dont know if there is a connection between Ankylosing spondylitis and Ehlers Danlos but there certainly seems to be a connection between Autism and hyper flexible joints.
I also forgot to mention that mitro valve prolapse runs in my Dad’s family as well.
“My spinal cord is stressed or compressed, especially when I sleep. This compression triggers my autonomic nervous system to create a “fight/flight” response. This, in turn, creates anxiety, sleeplessness, and an amplified response to pain. Do not underestimate the sleeplessness part of this. It’s HUGE.”
I just noticed this part and I should mention it to my older daughter as she has woken up attacking her boyfriend…..biting him or punching him and she is a very passive person. I have a lot of pain but so do most people with AS from sleeping as laying in one position is very bad when you have this disease. Your joints freeze up if you do not move.
April, that’s so fascinating! Thanks for sharing. I am a teacher, and I work with many autistic kids and kids with Asbergers, plus I have family members on the spectrum. Those in my family with Asbergers aren’t flexible, so I’m not sure about how that works! I’ve also known several people with Ehlers-Danlos who weren’t autistic. But since both diseases are inherited, I wonder if your family didn’t just get a double-whammy of both coming through at once? We know so little about the root causes of autism, but I know they’ve just discovered that brain changes can be seen in infants at risk for autism (with affected siblings, in other words) as young as six months. Those changes are rooted in the nervous system, so ultimately, yes, I suppose having one could put you at risk for the other, but I don’t know exactly how that would work from person to person.
I also read that of people reporting to emergency rooms with panic attacks, a huge percentage test positive for hypermobility. According to the study I read (google “hypermobility and anxiety” and you’ll get several versions), it’s close to 70%, as opposed to around 10% of the general population. And of course, those with autism are much more prone to anxiety as well.
I sincerely hope you find some answers to help with your pain. Your level of disease is much more severe than my own, but I can imagine how hard it is! You’re very lucky to live somewhere where you can receive such excellent health care.
I was initially diagnosed with AS, and it was a scarier diagnosis than BJHS has been. Your daughter should get a sleep study, and see if she’s waking repeatedly (for that matter, so should you!). Sleep studies are fantastic diagnostic tools that are under-used, I think. If you’re not sleeping soundly, all sorts of bad things happen!
hi my name is lorraine my youngest brother has hypermobility if there is anyway u can email me some advice on how to get him help with this he is only nine and suffers bad my parents have tried everyting to get him help so we would be grateful for your advice we are from ireland i found your blog very helpful thank you
Hi Lorraine. I’m so sorry to hear about your brother! Nine is very young, but I have heard of kids being diagnosed now that early. I would be hesitant, unless he’s exceptionally “bendy,” to say this isn’t going to be something that gets better over time, or that it isn’t something like Ehlers-Danlos. Were you diagnosed by your family doctor, or an expert? That just seems like a very young age to receive this diagnosis. I have heard that it’s hard to pin down in small children, as all kids are hypermobile compared to adults.
I would suggest you see a specialist, and you can check with the BJHS blogs in the UK to see lists of doctors (they’re very good over there) to visit. I don’t know if there are many in Ireland, but there are clinics in England, so you might be able to take him there. Good luck!
hi lorraaine here tanks for your reply he was diagnosed with it he sees a pysio therapists and occupational therapists hes very bemdy hes hands are very bad he has it everywere hes like a rubber doll he suffers bad pain and hes body locks up hes back and legs are bad he cant walk far as he gets sore its very hard to make people see the pain he is in he was diagnosed by dr orla kileen in our ladys hospital in crumblin if u could give any advice my parents would be grateful your blog is great and was a great help in understanding it thank you
Lorraine, as I’m not a doctor, I would suggest you might need to take him to a specialist, but I can’t really say more. He sounds like he’s got something more serious than typical BJHS, and would benefit from another round of tests. Perhaps start with a rheumatologist?
rideblog, I want to send this to my boyfriend of four years who has witnessed the before and after diagnosis of BJHS. It’s so informative and really lets someone in on it and what really happens! Thanks so much for writing it!
You’re welcome! Hope he’s doing well.
heh, no, no, I’m the one with BJHS.. My boyfriend just struggles to understand it. XD Though I want to ask you, since my rheumatologist knew nothing of BJHS I did my own homework. Many collagen experts believe EDS Type 3 and BJHS are the same.. I was wondering your take on that. What do you think?
Jess, I think that they are one-and-the-same, but I think that EDS Type-3 is a simpler disease, with just a few components, whereas BJHS is a less-serious variant plus several other contributors. I don’t know if that makes sense. FWIW, my BJHS doc thinks they are variants of the same disease. The only person I’ve ever met who didn’t was the EDS researcher, who is widely admired, but whom everyone I’ve ever met says is a total wanker of a human being :).
My boyfriend is gently understanding. My ex-husband, on the other hand…
I think I see what you’re saying – my rheumatologist unfortunately didn’t know much about either EDS or BJHS, and I’m having some trouble figuring out what I really have to be honest. Pretty much I’m a mix of both BJHS symptoms, like the little things you listed above (the added little “quirks”), and the EDS 3 symptoms (mostly the iconic things of EDS). So at the moment I’m pretty confused. 😛
Thanks again for the reply!
Wow ! I have very similar issues to rideblogs & I have much info to share later . I have to limit my Pc use and hope to get software that will type the text I speak .Thanks for your skills in making this clear for others !
Thanks Lara! I’m supposed to try out Dragonspeak this week. We’ll see…
Thank you soooooo very much for posting this!!! I was diagnosed with this crappy disease last summer and since then have only experienced increased symptomology. 😦 I am definitely going to try some of your remedies because I needs some relief as pain meds don’t really do anything for me either….but I am a little skittish of using massage due to pressure sensitivity issues (another blessed aspect of this disease) that I now have on several parts of my body. And you are right…..the insomnia is the worst….
Anyway, thank you for reminding me that I am not alone in this personal hell that nobody understands (not even the medical professionals).
There is so much I’d like to share about BJHS …for starters here are my top 2 favorite info sites>
http://www.medscape.com/viewarticle/537938
http://www.dynakids.org/Documents/hypermobility.pdf
Well hi there and it is nice to see everyone’s stories and experience on Bjhs I was daignosed april 2012 by Neurologist after being ping ponged (neurologists words) to Rheumis and Pain Management, but i was like cannot blame Dr’s because I had MRI as my neck went and it was the symptoms that obviously triggered for concern, resulting Discs indenting on spinal cord causing compression on nerves (both sides of body) which on MRI i should only experience on one side, so I guess this is the only reason i been passed around so much, then had MRI on lower body and now waiting Brain Scan 18th May 2012 due to lots of symptoms i have experienced. I just believe that from the Operation i had in May 2010 and knew straight away something was wrong! i was bed bound for over 2 wks i would of needed a wheelchair! i was rushed into hospital and scans, xrays and nothing! then taken eventually back to theatre and a nerve was wrapped around the screw yes you read rite a screw, so 5 were removed as i have titanium in ) it has triggered everything as i was so ‘super fit’ even if i sufferd with back problems (painkillers) I was told when really ill at 19 with a Rare form of Glanduler fever hospitilised for months that i had such a ‘high tolerence’ to pain! WOW i dont mind really. Just that now at 43yrs old i am now paying the price 😦 I am self-employed and of course that is it physically for me so i got some help just incase i improve, but infact i think i am weaker and arms, shoulders, neck, spine, base of back, spine, legs and feet can be such a problem ..when there is a ‘flare up’ by god do i know i cannot even make a cup of tea or do anything around the house just have to sit alll day doing nothing, but the worse thing sometimes is ..it is not even the pain it is like there is nothing in my body to beable to do anything no strenghths just nothing there is so har to kind of explain.. (i used to move beds, wardrobes, decorate, do the gardening, go to work see to my 4 kids) nothing ever phased me, but now i feel i am throwing in the towel lol i have to actually ‘ask’ for help at times this is so dificult when it was only 2 yrs prior i was fit ! Climbing the stairs can be a chore , and he diagnosed me with this horrible thing BHMS which i guess answers to the problems . Why my leg used to drop in the gym or could not ride a bike as leg would give in and of course talked about me wiht sleep deperavation which has gone on since it started too but with so much other stuff going on i have no idea whether coming or going lol plus like you i have Gastro problems (lansoperole) and Beta blockers for rapid pulse, IBS and completely agree over the years when i suffer with something it has been easy it has always been months or wks!!! never a wk. I believe i have MS but cannot technicaly say or tell everyone because i am still ongoing the tests and even if the MRI comes back ok i will see a brain specialist, so they obviously taking me seriously! My history over the 20yrs plus just says it all .sorry if i sent you all to sleep just a little miniscule tiny bit of my problem at moment lol xxxx all the best to all of you and hope that your days are not overwhelmed with too many problems
Thanks Caroline. I have my ups and downs. Last night my feet kept me awake through the sleeping pills. But overall right now, I’m okay. sorry to hear how hard it’s been for you.
Thank you! I stumbled upon this page looking for other things. Reading it made me cry because you perfectly described me! I am not diagnosed, but have been searching for answers for years and this caught me by surprise. I have never heard of this illness before today, but I will be asking my doctor!
I developed arthritis at 14 and have severe anxiety at 23. For years doctors have brushed off my ailments and made me feel like u was imaging it all but this gave me hope that there may be an answer.
Spot on!!!You are describing my condition from A-Z…except from colds and such nasty stuff.Even the picture of your hands:)just like mine-weird !
Thank you so much-will bookmark this blog.
Gudrun in Iceland
Katie, let us know if you find out anything that helps!
Glad to hear I’m not alone with the hand-thing!!!
thanks for posting this. I have hypermobility too, and I’ve done tons of research about it but I still learned something new. my reflexes have always been lightning fast, I’ve compared myself to a cat before.
my mom has it too, and when she was mugged, instead of her neck breaking from the assault, it only bent. her vertebrae are compromised forever, but they moved back in place enough to shock all her doctors, who had been recommending spinal surgery. they changed their minds.
I once landed on my hand from a fall, and UN the X-rays the techs could not figure out how I had damaged the inside of my hand without the outside being broken. when I told them I was hypermobile they laughed, because it was clear that my bones had just moved out of place when my butt bone landed on my hand. jeez. I bet we all have stories!
Hello!!
Thanks for this – I was diagnosed with this 2 weeks ago and have done a lot of reading since – it basically describes my entire medical history back to when I was 7 yearsold.. I’m actually in a lot happier space now since being diagnosed as I’m not just a weirdo who wakes up in pain every morning and am constantly tired.
My shoulder pops out once to twice everyweek(have been told they cant operate as it probably wont work), and I have ‘triple flex’ ankles and my knee caps point the other way – I also have IBS and had a horrible pregnancy because of this – I had massive muscle seperation in my stomach which resulted in a very loose pelvis and I couldnt walk for half the pregnancy – I also had an incredible quick labour. People think i’m crazy but we’re going to be trying for number 2! we’re just gonna do it with alot of support this time.
Thanks for writing this, I find there is not actually much details out there about it apart from a couple pages, and as you say no many people know about it. I have been put in casts numeruos amount of times because they ‘thought’ I had a hairline fracture but couldn’t see it on the xray, but because of the pain they put me in casts – And lately prior to being diagnosed I had docs asking me If I wanted to go see a psychiatrist about it because they thought it was all in my head!
I’m tempted to make a page soon that everyone can talk on as its nice to know you’re not alone 🙂
Thanks in anycase 🙂
Hi, on top of a few syptoms we share, I also have health anxiety exacerbated by increased hyper vigilance and acute awareness of bodily sensations and normal body functioning and processes. After a few really tough months, I asked to be referred to a psychologist and am due to go on a course in October exploring ‘calming an anxious mind’.I also have pudendal nerve entrapment, which causes painful pelvic symptoms. I am hoping that I can learn more effective ways of dealing with anxiety as I recognise that whilst I do have diagosed conditions and legitimate health concerns, my level of anxiety causes a raft of other physical symptoms, such as dry mouth, palpitations etc which can really get me down.
I’m there with you, K. I have had on-and-off severe anxiety for years. My mother, who I’m sure had this disease as well, suffered from crippling depression. The only thing I find helps is to remove 90% of the stressors in my life. That, of course, is why I quit my job to start my own business (sarcasm). But actually, I find dealing with a corporate structure very stressful. Removing that has lowered my anxiety a lot. I also find that taking the Lorazapam helps with anxiety as well.
Palpitations are normal with this condition. I get them frequently, sometimes they’re horrifyingly long and scary. Taking a deep breath and counting to ten helps, as my doc pointed out that the “fluttering” of my heart always stops before I get to ten, which is true. The only time I’ve had dry mouth, it was caused by my medications. It SUCKED. Beyond SUCKED. See if it’s a side effect of anything you’re taking. You might be able to get rid of it that way. Good luck!
You’ve just described Ehlers-Danlos Syndrome Type III (Hypermobility Type) to a T. Further, all the leading EDS specialists around the world (including some in US) are in a campaign to start calling it that too and have been since 2003. It’s just slow going. See here for more: http://oreds.org
Hi Jandroid. I believe EDS is what I have, but I’ve been learning more recently about possible other issues, including a narrowed base of my skull and vein compression near my brain. Interesting as all this is, I’m not sure there’s anyway yet to pin down an exact diagnosis. All the more frustrating!
Thanks for writing this! I feel like you wrote my story, but no one has been able to figure out my issues! My sons may have this, too!
I hear this a lot, Meghan. I think there are many folks out there with this disease. I sincerely hope your sons (and my boy) can avoid it!
EDS III is diagnosed in the US most often by trained medical geneticists in a very thorough clinical exam combined with thorough family history. (There is no single tissue marker for Type III yet, though there is for most of the others, but especially Types IV and VI, Vascular and Kyphoscoliotic). However, the Brighton Diagnostic Criteria for Type III are very clear, shown here:
http://www.hypermobility.org/dianosis.php
Again, HMS is the same as BJHS and both = EDS III. Nothing unclear about it. Cheers – Jandroid
Oops – misspelled link, sorry, it’s: http://www.hypermobility.org/diagnosis.php
Actually, Jandroid, I saw one of the premier genetic researchers in the world for EDS III, and he told me I didn’t have it and to go home and get on with my life because BJHS was a myth and I’d never find out what was actually wrong with me. The guy was an unmitigated ass, not gonna lie :).
Oh really? Which one? I can’t believe they wouldn’t recognize all the signs of EDS III when they saw them. Unless you somehow accidentally left some key complaints out. (Doubtful). Sounds like a true jerk, which is really a tragedy. By the way, you also exhibit many of the classic signs of Mast Cell Activation Syndrome (MCAS), part of the MCAD (MCA Disorder or Disease) umbrella or spectrum, which includes at its worst, the (thankfully) quite rare Mast Cell Leukemia, then slightly less rare Mastocytosis, then the very common and equally under-diagnosed (as EDS III IMHO) Mast Cell Activation Syndrome, or MCAS which I’m finding fairly commonly co-morbid with EDS lately (not all, but many seem to have it). See the Canadian Masto site for more – it’s one of the clearest:
http://www.mastocytosis.ca
And also click on the blue “Patients” button in middle of the US Masto site:
http://tmsforacure.org
Textbook or “classic” signs of MCAS: Easy flushing, dermatographia (ability to write on skin with a light “scratch” that turns into a bright red “wheal” quickly), anaphylaxis to wasps or bees or contrast dyes in hospital scans, increasing food and drug sensitivities or allergies (even if test neg on traditional allopathic IGe test – try IGg instead with an ND), sensitivity to alcohol (stomach irritant), hives, urticaria pigmentosa, pruritis (itching), rashes of seeming unknown origin, stomach and esophageal cramps, gas, bloating and or diarrhea and/or constipation (or both, even), headaches, fatigue, brain fog. All come and go seemingly randomly, as some reactions take hours to days to occur after a food was ingested so it’s hard to ID the trigger. At some point your serum tryptase will be elevated, but it’s very hard to catch, even in a flare. This is one of the very hardest conditions to diagnose out there, as symptoms and lab markers vary so frequently and widely, the experts have seen just about every variation on the theme you can possibly imagine.
I say this having just attended part of this year’s National Mastocytosis Society’s annual conference in Bellevue, WA where I heard it from the experts’ mouths. That said, best therapy is H1 (anti-histamines) and H2 (ant-acid) blockers (esp Ranitidine, aka Zantac), as I just learned acid production is one of the responses to mast cell activation in the stomach. Combine that with a loose hiatal sphincter from EDS and whee – no wonder we have GERD. Don’t be surprised or upset if your doctors don’t believe you on this one either;). It’s hard even for the experts to diagnose, much less your average GP or allergist. Good luck if you try.
One of the sources noting lack of clinical distinction between BJHS and EDS III (Keer and Grahame, 2003):
http://www.hypermobile.co.uk/index.php?option=com_content&view=article&id=157&Itemid=37
I also have an article by Dr. Jaime Bravo of Chile from his old website (he just revamped, so it’s missing there now) if you email me at my nickname here at geemale (spelled phonetically, so I don’t get spam botted) dotco m I’ll send it to you. It’s called “When to Suspect EDS III”. Dr. Bravo’s site is:
http://reumatologia-dr-bravo.cl
Fascinating stuff, Jan. The problem, I find, with all of this is twofold: the first is that these diseases cause syndromes, which makes it hard to differentiate things that are wrong because of the illness from things that are wrong just because you ended up with a bum rap! Do I have Mastocytosis? Maybe. It sounds like a lot of the symptoms are shared with BJHS and EDS, so it would be hard to know. I do know that I’m sensitive to acid-reducers and can’t take them, like most meds. Unfortunately, they really helped with my digestive issues when I did take them, but the side-effects weren’t worth it. Mostly, I just live with it all.
Right now, my hands hurt like hell (so I’m typing, of course), my feet are on fire, and I’m crabby as all get out. The problems are real. What to do about them? I don’t have the answer to that.
And yeah, he was a real EDS genetics expert. One of the top in the world (at the U of Washington, which should help you narrow it down without me saying). My specialist says he’s a jerk anyway :). Most experts are, I’ve found.
He said I wasn’t bendy enough to have EDS 3. Probably true, in some senses. My hypermobility is primarily in my spine, near my neck, so it’s hard to see.
I don’t doubt that Rodney Grahame knows his s**t, actually. My specialist learned everything he knows about this disease from him. Do I have EDS 3? Yeah, I think I have a type of it. It seems to me that these are really complex diseases, with multiple factors that affect their progression, not just a simple genetic profile.
It’s not the diagnosis that bugs me right now: it’s the reality of the pain. Sigh.
Also, Jan, I updated some new info about my condition on my BJHS blog that might interest you. http://bjhsblog.wordpress.com/
Ah, that is one of my pet peeves: the myth of bendiness being a requirement for EDS III (or any form, for that matter). I’m quickly approaching a 0 (zero) on the Beighton “bendy” scale due to age and increasing onset of arthritis. The Beighton scale is is merely an old African field test for hypermobility *without checking for symptoms*. Hypermobility (bendiness) is just a trait, like red hair color. Like red hair color, some have brighter red hair than others. And some go grey (think arthritic), early, like me. That is precisely why BRIGHTON criteria were adopted – to catch the rest of us. You can be a 2 or even a 0 if over 50 years old and still pass the BRIGHTON DIAGNOSTIC CRITERIA which you wisely posted in your blog and I re-posted above before realizing that. It picks up all those other symptoms.
I’m sorry you’re feeling so crappy and in pain – I totally understand, having just re-emerged from bed myself recovering from the road trip to the Masto Conference. Took it out of me. It can really color our coping abilities. Rest up as can and feel better soon. You’re brilliant to be staying as active as you can, and biking is a great way to do so. Sadly, I can’t use my mountain bike anymore though, as the handle bars take my thoracics out now, sigh. It was great for my legs. So I’m now seeking a stationary bike and may look into a recumbent next spring. (Won’t use in winter in my frail condition, thank you).
Yes, I know exactly whom you are speaking of at UW, and I’m sorry to hear this – he is a specialist in the Vascular type of EDS, but should still know enough not to write you off as not bendy enough. It is SOOO much more than being bendy, trust me. Toss in skin signs (scarring, stretchiness or thin skin), bulging veins and herniated or prolapsed inner bits, soft tissue rheumatisms (tennis elbow, trigger finger, tendonitis), weak eyes (both focus – myopia, and muscles – wandering or crossed eyes are common along with double vision), and some have Marfanoid (tall, thin, statuesque) habitus (body shape, even tho you may not have actual Marfan’s). Along with subluxing and dislocating joints and joint pain – hello, he should have dxed you easily. I’m sorry to hear it. That is why I respond to posts like this, to help save others the aggravation of mis or under-diagnosis. I’ve frankly not found a single fibro patient at my therapy pool who does not end up passing the BRIGHTON (not Beighton Scale) Diagnostic Criteria:
http://www.hypermobility.org/diagnosis.php
…after some gentle prodding or explanation. (Most passed the Beighton scale too still, even with arthritis in some cases.) They all asked me how I knew they had easy bruising, got sick when tip heads back, have headaches, bad teeth and feet – lots of flat feet in this crowd, trick knees and necks, bad backs and shoulders and hips, etc.). Ahh… it’s so easy to spot once you know what to look for.
No, not all who have EDS will have MCAS. And not all who have MCAS (not Masto) will have EDS. (Masto is quite rare, thankfully, MCAS is not, IMHO, just under-recognised like EDS III). But there seems to be a pretty high co-incidence of both, and yes, there is a lot of overlap in the symptoms adding to the confusion. (I personally think the MCAS can add to POTS troubles for some EDSers. Not all have all symptoms and it’s as individual as fingerprints in both conditions. I sussed out a fair number of EDSers at the Masto conference when I mentioned common EDS symptoms, much to the doctors’ surprise. (Several patients thanked me after). One of the board members seemed to have noticed the same, and someone back East is doing a study on it I’m going to try to hook up with. But no, there’s no scientific data on this co-morbidity rate yet.
Another great website explaining how widely varying Ehlers can present is here:
http://cedsa.org/what_is_eds.html
Don’t sweat it now – feel better, and rock on. You’re helping many at least get started down the right path. As Dr. Afrin said at the conference, he highly doubts his masto patients are so lucky and rare as to just happen to have 57 different comorbid conditions causing all their symptoms. It’s more likely (as Occams’s Razor posits: http://math.ucr.edu/home/baez/physics/General/occam.html ) that there is just one or two underlying defects or conditions causing all the myriad of symptoms, as we find with both MCAS and EDS. Hang in there, and thanks for sharing your painful experience. I’m sure many are identifying with it, as some already have above. I like to say, we’re not losing our minds – just our bodies, smile. (Small comfort, I know).
Ah yes, just caught your note about possible Chiari malformation – yes, this is also relatively common in the EDS population unfortunately (frown). I’m sorry to hear this is a possibility for you. Meanwhile, do all you can to keep the back of your neck stretched and your chin tucked. Tiring, huh? (I don’t think I have this, but know others who have had/do. I do have a floppy neck though). Sometimes a cervical collar helps when you’re tired of holding your head up as high as you can to stop squishing your brain stem and spinal column (why to not tip head back!). Thoracic outlet syndrome is also common, and basically any other variation on having ones hind brain and spinal column impinged at any number of points in our spines, due to our lax joints throughout. I’m just glad someone back East has your case and knows about it. I would try looking into neck strengthening exercises meanwhile if you can find an understanding PT (not chiropractor! – they can do more harm than good inadvertently, natch, not realizing how easily we sublux, sigh). I trust you’ve found this great site too:
http://medicalzebras.com
All the more reason to stop calling this condition benign IMHO. Cuz aside from not dying, there’s really not much very benign about it, is there?
Another EDSer points out how common Cranial Cervical Instability is in us (she learned at 2012 ENDF conference), especially at C1-C2. Apparently all EDSers have some to some extent, but some more than others, as poor Danielle does:
http://danielledaviseds.blogspot.com/2012/10/my-heads-about-to-fall-offliterally.html
We really win the bad health lottery, sigh. So many variables, so little time and money….
I never ever would have connected my anxiety and PTSD issues with my HMS. Your description of the fight or flight and the constant stress just made it click in my brain, and that realization brought tears of relief to my eyes. The more I read of your blog and the Living Bendy blog, the more I feel like I can really tackle this and get control over my life and my health again. The sleep issues are a real eye opener as well. I’ve long been aware of how much more my sleeping habits affect me than most people I know. If I am just short an hour or two I will be as disoriented, stupid, and drowsy as a drunk and if I carry a sleep deficit for very long I’m guaranteed a nice long sinus infection. Luckily for me, I don’t seem to need any sleep meds – just adequate exercise and a tidy room…Both things that are not always easy to accomplish, especially when I have flare-ups, and now that I’m working and going to school full time.
Thanks so much for putting so much info out here. When I get out of school and am able to work more again, I will be seeing a rheumatologist. In the meantime, I have my very knowledgeable and friendly physical therapist on speed dial.
Good luck, Anna! I find that I have weeks on end where the disease is all I think about, and then weeks where I barely notice its existence. The fight or flight thing for me has really calmed down since a: I started on the Lorazepam and b: I quit my shitty, stressful job where I worked for mean people. I know that sounds obvious, but seriously, we have a responsibility to ourselves, I think, to cut down on stress or this disease will overwhelm us. I was stupid to wait as long as I did.
Is this different then Ehlers danlos syndrome ? I seem to fit so many of the symptoms for either of these conditions. It actually in some crazy way makes me relieved to know I’m not crazy. I’m hyper mobile and all of my joints sublet especially my hips and shoulders and other joints. I have elastic skin and I have a very high tolerance to local and general anistethics including pain killers. I had Osgood slaughters disease and diagnosed in my teen years, IBS, Acid reflux, missed two years of high school due to mono and have had pario carditist and viral meningitis and every other bug that comes around I also have over a dozen allergies. I have been working for the last ten years at my current career and have missed over 2 years do to illness. My most recent set back is that I tore my soleus tendon completely off. I’m constantly tired and in pain and have other symptoms I can even think of right now because after dealing with them every day it starts to feel like the norm. What specialists do I see for diagnosis for both or either of these things?
Nick, it is pretty much the same as Ehlers Danlos, though EDS is easier to diagnose because it’s actually better known by many docs and has more specialists in the US. A rheumatologist would the first place to start for a diagnosis, but beyond that, you’ll have to do some reading up to find the best therapies. They are mostly coming from England at this point and there are few, if any docs who work on this in the US. If you get an EDS diagnosis, you have a better shot at finding a specialist than if you get a BJHS diagnosis. Good luck!
Recently told that I’m hypermobile and it could be causing me issues. Seems like you might have lived in PNW. Did you find any good docs in Seattle area? PT and exercises is just not working….
I am in the PNW, but my doc doesn’t accept new folks, Nancy. I’m not sure how to find someone who does. I badgered the UW faculty in the rheumatology department until I got a referral :). But this might not work for everyone! Good luck.
Your hands look so much like my hands. I need to look into this. I feel enlightened – I have always wondered what was wrong. Thank you so much for the information.
You’re welcome, Kimberly!
Thank you so much for writing this. I’ve been diagnosed with fibromyalgia, CFS, hypermobility, anxiety, IBS, constant sinusitis, RLS.
I have so many of the symptoms you mention. It’s like someone suddenly switched on a light. I’m in the UK but have a very understanding GP. I’m going to mention this blog when I see him next, and mention that I seem to tick all the boxes.
I have found this most interesting. I have just been diagnosed with BJHS. Looking back over my earlier years the things I have had to deal with and the issues I have had this makes so much sense. I just wish they had discovered this and diagnosed it earlier. I am 41 and I am trying to loose weight but most exercises seem to hurt or virtually kill me after. I was wondering what experience you have had with exercise and what seems to work for you?. My main areas of pain are my feet, knees and wrists. My hips occasionally. I am currently working on the sleep thing with no luck and that may just be habit.(long story there). I am living in NZ so things move a little slower here. I am waiting to see physio but it will be a long wait. Anyway thank you
A dislocation that ‘pops’ back in is called subluxation. It’s a partial dislocation, even though its all the way out, it has the ability to slide back. I have this is many areas of my body however my jaw is the worst as I have scarring. This means it locks out of place as the scarred tissue prevent easy fluid sliding back and forth.
Yep, Lisa, I get this stuff too. But my susceptibility to subluxations seems to come and go. I haven’t had a serious one in while, but I get “rashes” of them where I’ll get three or four in a month. I think it’s all partially hormonal. The jaw thing sounds horrid!
Lisa that doesnt sound so fun at all, Im terrible sorry you have to do thru that.
Thank you so much for this blog, rideblog. And thank you to all the contributors–you have made me feel so much better at a very low point in my life. Lisa, it sounds like you have had it worse than I do and I really feel for you.
I had never heard of EDS before my orthopedist handed me a brochure last year. I have so much to say, and will try to restrain myself, but, on a minor note, I am AMAZED to finally see someone with fingernails like mine. My toenails bend, too.
I just had shoulder surgery for a labral and a rotator cuff tear, and the surgeon was an unbelievable BASTARD to me. I tried to destroy him with my laser-beam eyes, but realized soon enough that he’s just a human being with no way of relating to other human beings except by cutting on them, so I extinguished the lasers. Mistake. He started off our post-surgical visit with an angry 20-minute lecture on how excessive my pain was for the extent of my shoulder problems. He said that the Drug Enforcement Agency certainly has its eye on me as potentially dealing Percocet, and said that I was too focused on pain and that I wasn’t asking the normal questions a shoulder-surgery patient usually ask. With the next breath he said my shoulder labrum/capsule is loose 360 degrees around and that if I were A-Rod (yes, I know who that is, Dr. Bromance) it would be worth fixing, but since I’m not an elite athlete he has no interest in me. I am not stiff, Dr. Douche, because my labrum is floppy. DR. B., YOU IMBECILE, YOU JUST TOLD ME THAT MY LABRUM IS COMPLETELY LOOSE! I do not care if the D.E.A. makes a house call on me, Dr. B. I’ll make them a spaghetti dinner and watch an episode of Breaking Bad. You are just a coward about prescribing these drugs. Oops–I’m ranting at him. Sorry. BUT He’s pissed off, as well, that he thinks that my neck is a bigger problem and that’s not his baIliwick. He owns the surgical center, so perhaps there is a financial interest. I’ve had hip instability most of my life. At age 20 it started to get painful, and it has slowly gotten worse. I’m 58 now, and can’t walk on concrete or brick more than 50 feet without intense pain. I have been diagnosed with a hip labral tear, but no surgeon where I live (Tucson, AZ) will touch it. Again–the disdain of surgeons when something’s not surgically fixable. Oh, yeah, if I were an ice-hockey player, I’ve been told, I would be young and hardy enough for the surgery to work. My physical therapist is excellent (she diagnosed the hip labral tear by touch, before it was picked up on an MRI with contrast). She told me that if I don’t get the tear fixed she can’t do much with my ilio-sacral syndrome, which destabilizes my hips. So, I’m on a mobility device to get around the campus where I work, and am going to Phoenix (2 hours away) to be evaluated for hip surgery by physicians who have more expertise in hip arthroscopy. The visit with Dr. B. was devastating. My husband witnessed it, and was furious that the doctor sought to make eye contact with him instead of me throughout the visit. He is a very quiet guy, and didn’t say anything, but he was a support nonetheless. It’s awful how the toxins the surgeons spew out do damage no matter how hard I (we?) try to put their words in the context of the pathological medical industrial complex in the U.S. Can you tell I’m an academic? That’s an awful world, too, but I like fighting the power. 🙂
Lots of love to all of you,
Susan in Tucson
Thanks, Susan. I’m sorry to hear things have been so hard for you! I’m lucky in that my thigh muscles are extra short, so I don’t have the issue with hip stability, though my massage guy says I’m hypermobile in my hips, too, I just can’t tell. I also can’t take opiates, so I don’t have any trouble with those :(. In fact, I’ve now done surgical recoveries with Ibuprofen, which works really well for me. Hang in there!
Yeah–that was a real rant I wrote. Thanks for being open to reading it! It did make me feel better to get it off my chest, and I can now refrain from yelling at the doctors.
I am making strides toward getting various specialists who can help me manage pain without narcotics, and give me good advice about injections, and, as a last resort, surgeries. Ibuprofen is good. It can really help you cut down the use of opiates. Be careful, though, because it can cause kidney damage–as you, of course, know.
Take care
Thank you, thank you so much for your blog! I discovered it after an Internet search for “bendy nails”, and saw the photograph of your hands..which could be mine, as they are so similar! It was weird how the bendy fingernails lead me to your blog, which made everything else make sense! I am suffering with a very painful back and hips at the moment, and have given up on pain meds as nothing improves the pain! I am using a tens machine at the moment which is the only thing that helps slightly!
I am amazed to read your symptoms and learn about hypermobility, as I had not even heard of this disorder before! I have ached pretty much for most of my life and can hear my joints pop in and out, and reading this makes me feel less crazy ( I often wondered if I was imagining a lot of it!). I have been seeing a chiropractor since Jan, but gave up about a month ago as I wasn’t improving any. Originally the chiropractor thought I had an SI joint problem, as sitting is the worst thing that I can do, and following an xray, possibly a prolapsed disc too. He had not picked up on the hypermobility! I didn’t know that you aren’t supposed to be able to easily put hands flat on the floor with straight legs, and touch thumbs to forearms etc, otherwise I would have mentioned it! He gave me some exercises to try and strenghthen my core, but I am not sure if they aggrivated me more! I have most of the symptoms you have listed apart from the anxiety, which I used to have badly growing up and through my teens. I did seem to outgrow that (I just turned 40). I rarely visit my doctor, but have an appointment in August to see what can be done about my back and hips. I was hoping for an MRI, but am not sure now if that will even show anything! I am hoping she won’t look at me as a rambling British idiot when I visit as I barely know where to start! Lol! We moved to the USA almost 5 years ago, and from what I understand, not all doctors are familiar with this disorder.
Thank you again to all the bloggers who have made me feel like I am not crazy, and that most of the symptoms I have had throughout my life, fit together! I am at my wits end with my back and hips and hope the doc can help me! I am not sure if it is some form of EDS that I have, or if I will ever know!
Hi Lorra! Thanks for writing in. Try talking to a rheumatologist. They’re the ones who can officially diagnose you (though few know how to treat you). You’d have lots of treatment options in England, ironically. But start with a good rheumy. If you do have EDS proper, it’s easier to get treatment than it is for BJHS. I haven’t found that pain meds do much for me. I’ve had better luck with chiropractic care and massage. You might give that a try. Good luck and keep us posted!
both shoulders pop out when carrying milk or laying down
hips slip out of line when laying down and hurt after long walks
elbows bend WAY too far backwards
toes and fingers bend backwards and can be manually dislocated
“curly” nails that must be kept short to prevent ripping off
thumb and big toe pain
RLS
IBS
sciatica with burning and stabbing pain
neck “flair ups” that leave my arms weak and numb patches on my body
NUMB weak arms in the morning
long history of ankle/wrist sprains, but no breaks (even when a horse kicked my ribs)
serious jaw issues including popping, locking and pain
knee pain
hip pain
shoulder pain
ankle pain
body aches
migraines
The list goes on…..
Yep… that’s me 🙂 I love every minute of it because if makes me unique. My husbands understands my physical weaknesses and loves my spirit. Yeah, I have days when I can barely walk, but thinking of painful days get me off my feet on good days. My “bendy” joints allow me to reach higher than other short people can, so I don’t have to ask for help. My kids love my fingers! Every mother knows a laughing child is happy, and every mother wants happy kids. I love my quirky joints, even when I’m writhing in pain. PEACE!
oops… types LOL. I only have ONE husband.
Ha! You’re me, in terms of symptoms, though it sounds like your pain is higher than mine, and your attitude is better :). Do you take anything for the pain? I find that nothing much works in terms of pills, but medical massage and chiropractic do wonders.
Well, you never know… it is the internet :).
Everyone who has posted above looks like a suspect zebra (EDS patient) to me ;). Some updates since I last posted last year:
a) I’m back to biking again too, whee! After a year of water therapy and lots of vitamin C, I’m back on my mountain bike despite my knees and thoracic ribs going out easily still. I’m just pushing through the pain better and slowly strengthening in spite of it. My next goal: to be able to walk with only 1 crutch, and further than 4 blocks. (I bike and swim better than I walk now, heh). For those who don’t know me, I thought I had “just” Chronic Fatigue Syndrome and low level Fibro since my 20’s until i went down hard with a “storm” (or cascade, as they said they prefer to say) of onset of EDS III symptoms that took me from walking to wheelchair in 2 weeks in Feb 2012 at age 45. Phew! Blew all our hair back including my doctor’s, who now listens to me a bit better, smile. (There *was* something wrong all these years… it was just subclinical to him). Most doctors have been told all EDS patients will be fully dislocating and in the ER, whence the failure to diagnose the milder or untriggered patients. (Please rest assured – havign a “storm” of onset like I did IS still pretty rare – most just have long slow downward “slides” or one or two problem joints along the way with the other attendant issues, and yes, it “flares” – especially for women, and yes, monthly – progesterone makes you more lax). Although I had no clear triggering event, many go down after a major trauma or stress such as a car accident, job loss, spouse death, gnarly virus, etc. (All the things the fibro folks say too, smile). As already mentioned, I’ve yet to meet a fibro paitent who doesn’t pass the Brighton (with an “R”, not Beighton 9 pt bendy scale only) Diagnostic Criteria for HEDS (formerly EDS III) now. (See my old comments above).
b) There is an increasing consensus among all the leading EDS doctors that it is NOT rare, it is rarely diagnosed. I made it to the annual EDNF Conference this year for my first time in Providence, Rhode Island, and Dr. Heidi Collins even quoted a paper by Castori saying as high as 1 in 50 may have it, we’re just not seeing the lighter cases. Almost no one refers to BJHS or JHS anymore. Even Dr. Grahame. And neck man Dr. Henderson has been quoted several times dropping a figure as high as 10% of the population. I frankly agree – once you stop splitting hairs and recognize that we put the “Syn” in “Syndrome” and win the flipping jackpot for comorbidities (things you have at the same time with different ICD-9 insurance billing codes, basically), you will see it everywhere. (We’re 80% collagen, so all systems are affected).
c) Several of us are anecdotally finding at least 1/2 to 2/3 of the EDS patient population seems to experience MCAD (either Masto or MCAS) issues and symptoms as described in my comments above. (Or at the website below too). And I keep smoking out likely zebras in the Masto group I’m in online in reverse. (It’s fun to watch them try to attribute subluxations, tendonitis and spinal stenosis to masto which is also a big syndrome, alas.) I ended up in the NIH study that’s trying to determine why this is so (find any genetic connection if any). Not to be confused with the recent article in TIME magazine associating all allergies with TGFBeta, the genetic defect behind another (truly rare) connective tissue disease: Loeys-Dietz Syndrome. (Dr. Milner pointed out to me that both a) that wasn’t a proper or large study, and b) it only shows that all LDS patients seem to come down with allergies – not the whole population. The author took a little license with it in the article. Take it with a grain of Himalyan pink salt, smile).
d) rideblog: I hope you’re sitting down, because yours truly went head to head with your favorite (not) doctor from UW this last May during the first ever Oregon Area EDS Group’s (not-so) “Mini” Conference, where we had him speak. And… while he tried to blow all kinds of holes in the Brighton Diagnositc Criteria saying they are too broad, and so are picking up too many people, I had a roomful of (over 185) people crying because we finally recognized them and their families with it. But, he left us with nothing better to go on. Further, I still feel if you read the Criteria very carefully, the fine print requires a sufficient combo of issues along with sufficient duration of same issues (4 of which have NOTHING to do with your joints at all!), that we’re not likely picking up anyone who doesn’t have this. And if he doesn’t like it, then either find all the tissue markers for HEDS, or come up with something better. But until then… it’s a darn sight better than JUST the 9 pt Beighton Scale which DOES pick up way too many folks who do NOT have EDS, like the good doctor himself who was way bendier than even myself in an ironinc twist. (Again, I’m all stove up with arthritis now).
Lastly, I’ll submit that technically he would have diagnosed me with “just” BJHS pre 2012, but HEDS (easily!) after. So what gives? I”m the same Jandroid I always was (well, mostly). It’s just a matter of degree IMHO. Thirty years ago they only diagnosed Mastocytosis on autopsy. Then they spotted it in the ICU’s and ER’s (often as idiopathic anaphylaxis). Now more doctors and patients are spotting it and it’s cousin MCAS (Mast Cell Activation Syndrome) much sooner, but it’s taking time for the medical field to catch up. Thankfully we have tools like this great blog to help get the word out sooner and easier now.
Remember, the last person in the graduating class at medical school is still called a doctor, and narcissism is rampant in the group as a whole. (Bullies make it through that meatgrinder better than nice folks if I had to guess). We’re all going to bump up into stubborn ones here and there. It’s just really too bad when it’s your first diagnostic encounter for a challenging condition like this.
You can learn more about all of this and the many more comorbidities (thyroid issues, autism spectrum, POTS, CCSVI, CVID, MCAD, malabsorption, bad feet, bad teeth, and so much more, sigh) here now: http://oreds.org/about-eds.html
Hang in there everyone, keep your nutrition and fitness up, get your sleep any way you can (well in a healthy way, smile), and trust your gut(s). You’re more likely right about your health than not, and are part of the under-diagnosed. We just have to patiently but persistently help bring the doctors along with us. (If the one you have won’t listen, try to find another if you can. They don’t have to know all about EDS – just be willing to learn and listen). To your health –
Jandroid
PS THe Brighton Criteria pasted in for speed of reverence for those who hate links. JHS=BJHS=HMS=EDS III=HEDS per the leading EDS doctors now:
“Revised diagnostic criteria for the Joint Hypermobility Syndrome (JHS)
Major Criteria
– A Beighton score of 4/9 or greater (either currently or historically)
– Arthralgia for longer than 3 months in 4 or more joints
Minor Criteria
– A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+)
– Arthralgia (> 3 months) in one to three joints or back pain (> 3 months), spondylosis, spondylolysis/spondylolisthesis.
– Dislocation/subluxation in more than one joint, or in one joint on more than one occasion.
-Soft tissue rheumatism. > 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis).
– Marfanoid habitus (tall, slim, span/height ratio >1.03, upper: lower segment ratio less than 0.89, arachnodactyly [positive Steinberg/wrist signs].
-Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring.
– Eye signs: drooping eyelids or myopia or antimongoloid slant.
– Varicose veins or hernia or uterine/rectal prolapse.
JHS is diagnosed in the presence two major criteria, or one major and two minor criteria, or four minor criteria. Two minor criteria will suffice where there is an unequivocally affected first-degree relative.
JHS is excluded by presence of Marfan or Ehlers-Danlos syndromes. Criteria Major 1 and Minor 1 are mutually exclusive as are Major 2 and Minor 2.”
The source for the Brighton Criteria I just pasted above is here btw:
http://hypermobility.org/help-advice/hypermobility-syndromes/the-brighton-score/
Hi hav ms n nw have been diagnosed with bjhd am confused so many symptoms r common.wat shld I do
Thank you so much for your blog. I also was bendy in my youth and did all the tricks–until I started tearing ligaments, etc. Now I am over 60 and loaded with arthritis. I also have POTS, a form of dysautonomia(can’t go to theater because I scream at every loud noise, etc.) and low thyroid. The discussion on signs and symptoms, triggering events, and possible underlying genetics has been very helpful. I have been through it all and finally realized–IT WAS NOT IN MY HEAD! I knew I had “something”. ACLs in both knees snapped. Most surgeons probably have narcissistic personality disorder, so don’t expect any sympathy from them. They can cut, that’s all. Other M.D.S are also probably pretty high on the narcissistic scale. Then they are brainwashed in med school, which is dominated by Big Pharma. It will take a while for them to get out-of-the-box..These blogs have helped me more than any M.D. There must, indeed, be an underlying genetic potential, triggered by some event(virus, surgery, accident, childbirth, etc.) as most people don’t have it bad in grade school. Regardless of the etiology, categories, etc., there is a dearth of treatment. Currently, I am intrigued by the inflammation type theories. I have been taking MSM for two months, starting with 1 gm 3x daily, now up to 5 gms, 3x daily. It takes weeks to months to realize the full effects. I think it is helping! I have also corrected my low D3 with sublingual tabs; hormones with creams; thyroid with sublingual Naturethroid. Take 1 gm of melatonin, sublingual. (Accidently took 10 grams of melatonin instead of 1 and ended up in ER. Started “forgetting” to breath). Slowly adding other supplements so I can observe result. My liver is also enlarged, so have to be careful. I started going to a Naturopath, who is trying to help and not interfere or judge. Don’t want to take prescription drugs as my body overreacts to everything synthetic. Also, I now stand up for myself; research before I talk to an M.D. I don’t hesitate to look them in the eye and tell them that their knowledge is out of date. I rehearse what I am going to say so I don”t rant–but they probably still think that I am a whack job. However, the Medical/Pharmaceutical Industry will only change if we demand it and vote with our $. Thank you again.
Hi im 28 years ol and I have been diagnosed with joint hypermobility syndrome I have read your blog and your symptoms are the same as mine such a shame we can’t wear high heels any more. I have had so many test my last one was an mri scan done on my wrist as they are my constant never goes away pain I am constantly getting new symptoms I feel like im pestering the docs but im not getting much help im on the waiting list to see the pain management team at the hospital but otherwise just given more and more pain killers to take but they dont work one of the pain killers nocked my hubby out for two days I take three on top of two codidramol and im still awake through the night. Its drive me mad when im try to sleep I get this really annoying sensation at the bottom of my spine I just jump up and want to scream do you get this and if so what is it people think im mad when I tell them lol thankyou for listening go on. Take care kiri …
hi,your blog was helpful to read and i felt at last that hypermobility was being taken seriously.it wasnt up to 7 yrs ago i had pain.before that i was over energetic and bent like rubber.then bang my back went and having a mri was told i had L5/S1 herniated disc,since then my life feels it has spiralled,and not spiralled good.it was 3yrs ago at 42yrs old i was diagnosed with joint hypermobility with a beighton score 4/9.my fingers all turn up at the end,which i thought was normal as always had this.my joints are in pain every day.my hands hurt,my feet hurt.my knees and elbows not forgetting my back.i have tried numerous medications,pain killers,opiates,steroid injections and so far im none the better.its hard to plod on daily and i want to finish college and become an interior designer,but i am absent a lot with pain and severe fatigue that lasts a few days.ive been to see my doc today and as my norm doc was delayed and running behind,i was seen by another.he kindly told me that it was all in my head and to exercise and walk more than i was doing.believe me i try my hardest to keep active but i end up over pushing myself.leaving surgery confused me,i didnt know whether to laugh or cry.has anybody else ever had a doctor or any medical practitioner speak to them like this?
Thank you so much for your explanation. I too have the same thing and your explanation is better than ANY medical website!!!!!!!!!
From my research, those who are experienced with this are coming to believe Benign Joint Hypermobility Syndrome isn’t a separate thing, but a variation of Ehlers-Danlos Syndrome specifically Type III/Hypermobility Type. I was diagnosed with Joint Hypermobility first and then EDS and I still get medical and regular folks who think it really can’t be all that bad by looking at me. Finally found a podiatrist who explained my foot pain (loose ligaments don’t hold bones in place so crush/compress things when I stand or walk). Like carpal tunnel syndrome, but instead it’s tarsal tunnel syndrome. He called my pain tolerance scary high.
The best web site I’ve found is (I’m pretty sure I’m remembering correctly) http://www.ednf.org. Think it stands for Ehlers-Danlos National Foundation. It’s US based, before I found it, Dr. Graham and others in Europe and Dr. Bravo (; love his name) in South America was where I found the best info.
The front page of EDNF seems a bit confusing but once you get to the normal pages there are topics listed down the left side of the page. The best info is from the lecture information/handouts/ from the EDS specialists who spoke at their yearly conference. There have been about four conferences, the last one was around end of summer. If memory is correct, Dr. Graham has been a speaker at at least two conferences.
Another thing you may want to look into is something called dry needling. I really lucked out with my physical therapist who is trained in it and the rest of her practice is based on Pilates, muscle energy work, anatomy trains, myofascial release, etc. This type of treatment is hard to find because I’m in Kansas and it’s hard to find anyone medically who isn’t more harmful than helpful. Dry needling is sort of an off shoot acupuncture but not. The same needles are used but put into trigger points and messed up areas to “reset” and help healing. She will also use electro stim with needles in sort of like a TENS or NMES machine with needles instead of electrodes. It can hurt, but with my hypermobility, afterwards it instant gratification in that much of my pain disappears. Especially with the electro stim, it resets/realigns muscles and helps in healing.
Before I knew anything was wrong, my body tried to stabilize my joints on its own, which long term really caused more damage. I’ve had some muscles, most obviously glutes and biceps, that have been in constant contraction for decades. When my PT released them with dry needling it was amazing, literally reshaped my body. My tight pants weren’t tight anymore. On the flip side, I’m having to teach my body how to move correctly (neuromuscular retraining) and find other better ways to stabilize my joints. It isn’t a cure, but it’s at least a way to relieve and even prevent some of the pain.
Totally understand what you where saying about sleep and the fight/flight response. I’d add freeze too. Dr. Alan ¿Pocinci? has some really good info about sleep and fight/flight adrenalin info written in English as opposed to doctor speak. He has been a speaker at the EDNF Conference several times. After reading his info, it was . . . well, a relief. I can and have been able to keep going despite a lot of joint and other related problems. However if I know why things are the way they are . . . it’s a relief and by understanding I can work on fixing or preventing some of it.
: )
Hi Gretchen. I haven’t been visiting as much as I probably should be right now (soooo busy!), but might I suggest you try asking the folks over at r/ehlersdanlos on reddit.com? It’s a nice community, and they’d be a larger sample for you.
your writing is impressive,ill give you that. you wrote seriously about it,but also making it seem light on the way. i have it. and to make it worse,im short,with huge cup sizes,if you know what i mean. and to top that i m a nurse,so manual labour is my job. over the years i lived with it,now its getting worse. im not taking any meds,as more meds just worsens the threshhold of sleep and pain. in few years,i know ill start dislocating parts of my body. till that time, im gonna work and save money,to pay for the worse times. of all the diseases i could have had, i had the one with no cure…
Thank you so much for this blog. I today was diagnosed with BJHS after 2 years of seeing various specialists about a facial nerve problem. Being diagnosed with this condition has left me confused, relieved and surprised all at the same time. Reading your blog and about your symptoms (and also from speaking to my physiotherapist) has made me realise that BJHS could have been the underlying cause of so many other things.
Thank you for this frank and honest blog. I hope that others gain as much clarity from it as I have.
link to the Beighton score is here http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/
Hi there! Thanks sharing your experience. As a physical therapist I have my muscular skeletal system pain free (took a few years!). My nervous system still flares up once in a while (even my teeth get sensitive!), but seems to respond well to supplements. Blood test show that I am low iron, b12, B6, folic, and Vit D so I take those along with biotin & a mult vitamin. Bonus: my warped fingernails have straightened out!
I wanted to address your digestive system probs. Have you come across info about gluten free and hyper-mobility? Its very common with those with celiac to have BJHS or EDS. I have celiac and the diet has helped my entire body. It even has been helpful for those who don’t have celiac, but do have BJHS, EDS, lupus, RA, and other inflammatory probs. taking it a step further, paleo has the best results but is very difficult to maintain.
Next, I thought I’d mention a few other conditions that are more common with people such as ourselves. Hashimotos hypothyroid – i always had “normal” thyroid test results even though I swore I had some of the symptoms. Well I finally asked to see a great endocrinologist who did a fully thyroid & parathyroid panel. That is when I finally showed abnormal tests. When my thyroid is off my nerves get sensitive and I get pain that feels like carpal tunnel, I get insomnia, tired, I feel cold, get dry skin, and she’d a lot if hair. There are more symptoms, but I notice those 1st. I have a great endo that doses the meds by my blood tests AND my symptoms. As long as I’m somewhere in “the norm” range she is happy. I feel best closer to hyperthyroid, but again still in the norm range (some people feel better at the other end of the range).
Another common prob for us is hormones. Is is common for us to have PCOS (polycystic ovarian syndrome). In which we have lower female hormones and/or elevated testosterone. Btw, you don’t have to actually have cysts on your ovaries to have this. blood tests will show hormone levels are off. Cysts are just a common symptom. You prob know many of the hormone symptoms so I wont go into detail. Personally I did not want to take birth control (the standard treatment) because I have tried many kinds in the past and don’t like how I feel on them. My OBGYN gave me a different option. Metformin – a diabetes med that effects insulin levels. Most People with PCOS have some type of insulin resistance or elevated insulin levels. It does not mean they have diabetes or will test + for diabetes, but there is a higher chance it may turn into diabetes in the future. Also, they are more likely to get gestational diabetes (which I had last year) which goes away after giving birth. Anyway, metformin has been life changing when it comes to my hormones. It has straightened it out completely.
I thought I would share this info because people with BJHS are very complicated. Medicine is only starting barely understand this complicated problem that has many layers to it. Hope that helps.
Feel free to contact me with any questions etc.
itybity0420@hotmail.com
I forgot to mention that metformin is made from a natural root and been around for MANY years. The only know long term side effects are decreased chances of breast cancer and decreased chances of pancreatic cancer. So that’s a mega plus!
The thyroid med has also been around for many years with no negative long term side effects as well.
Hi. I have the exact same symptoms with the curving of the nails and the wrinkled skin. They could be my hands in your photos!! I also suffer from tiredness and poor circulation. My joints are popping and clicking more recently than they ever have. I wouldn’t say I’m very flexible. Wonder if I have what you have. What test(s) did you get done by your doctor, initially.
Hi my daughter has been dagnosed with BJHS . So many things that she has ie facial milia, anxiety that plagues her since the age of 7, dislocating shoulders, stomach pains, a fear of vomiting, painful periods to name a few, all we see now are symptoms of hypermobility. I just wish I had a helpful knowledgable gp earlier who could have helped us.She has a few aches and pains but luckily doesnt suffer to much at the moment. Its good to read this to remind myself thats why she is experiencing these symptoms and to know we can get more help from this type of info .Thanks
Hi just stumbled upon your blog whilst looking up my newly diagnosed hms… I am 26 and have had a bad back for a year and a half until this diagnosis, in the days before my visit to rheumatologist my hands became painful too and knew it was a similar thing to my back and not a regular ‘injury’… Previous to this I have had no dislocations, breaks, I wouldn’t even say I’ve been symptomatic until my back issue arose…
My question to you is would you class me as a mild sufferer or am I just at the start of the journey? Will I get worse? I know everyone is different and you can’t tell me definitively but I would appreciate your opinion greatly.
Many thanks,
Joe
Hi there, i am 33 years old and have been diagnosed with BJHS and i think that i have a secondary condition of POTS too (that is getting tested for soon) but i have spent years with the wrong diagnosis and everyone saying that the pain is all in my head and that there is nothing wrong with me. its irritating and soul crushing. Has any of the females on this page had issues with taking hormonal contraceptives that are Progesterone dominant. cause that stuff just floors me. I have now just had a Copper IUD put in cause copper is good for inflammation so i am hoping that this could have a dual purpose for me. Has anyone else got any feed back from their experiences from such.
And Exercises that dont cause dizziness issues if anyone can suggest some that would be great cause going nuts not doing anything but walking around the block (which i do slowly and i pay a little for it afterwards)
Any feed back would be great, this is the first site i have found regarding this condition.
Thanks
My body is weird. I can crack my back (like cracking knuckles) when I twist, I can dislocate my arms, shoulder blades, and knees. I can crack my knees, elbows, fingers, and the joints that connect my legs to my body, as well as my ankle. Only one ankle. I can get stomach acid from my stomach into the back of my throat. I can make my face go extremely red at will. I can flex a muscle in my eardrum to create a low rumbling noise. I have ADD and a learning disorder. I don’t know about you, but this seems like an awful lot of conditions to occur coincidentally. I have spent the last week surfing the web for a condition that unifies all of these, but I haven’t found any. It’s very frustrating.
Hi Joe, I can’t really help classify you, as I can’t feel your pain. Have you tried a support group? I’ve been over at r/ehlersdanlos on reddit.com, and there’s lots of folks there.
Hi vampcraftire, I don’t know much about POTS, except that I don’t have it. Have you talked to a neurologist specializing in autonomic issues yet?
Have you tried talking to a rheumatologist?
Nah I haven’t tried neurologist, I think it would make me feel like it is all in my head, these multi system conditions have the problem that each field doesn’t know what the other field is doing, they were just discounting any problem that could be chased by their field of “expertise” and having the rely on the public health system too is insane and becoming worse. We need to find out the why rather than chase our tails in just testing symptoms
Have you looked at the connection between diseases like yours and mast cell disorders? http://www.prettyill.com
My symptoms sound similar to yours, particularly hands and forearms. Although really it feels like my muscles are also hurting. How do you know it is bjhs and not Ehlers Danlos? I haven’t been diagnosed but have been living with dread that that is what it is.
Thanks so much for this! As someone with suspected Ehlers Danlos hypermobility type, it’s really helpful. Never thought my sleep problems were related — i developed them after I had mono and/or whiplash. DUH. Spine pressure makes a lot of sense. I’m taking trazodone for sleep and it too works well for me. What a difference, right?
I’m going to check out that ligament release therapy.
To trade tips: And in case you haven’t had it checked out, cervical instability (easy to develop w collagen disorders) can cause tons of problems, that can be alleviated with bracing.
Thanks again ❤
Found your blog while looking up what the heck is wrong with my fingernails. Mine look just like yours! Maybe a little more curve sometimes, but not much. I don’t really have any of these other symptoms though. Except GERD, and occasional joint pain. My sister has a condition that causes “double jointedness”, which sounds similar to yours but not quite the same. I wonder what other similar conditions there are out there?
In any case, I also love bicycling so this has been a cool find! Thanks!
Sounds like Fluoroquinolone Toxicity. Many people that have ever taken Cipro, Avelox, Levaquin, etc, for a simple infection, end up with these exact same symptoms. Search on Google. There are 10’s of thousands that have been affected by these drugs.
Thank you so much for posting this! I saw a picture of your fingernails after searching for alternative treatments for Neurocardiogenic Syncope/POTS, and recognized my own. Clicking on your photo to see why my fingernails are bent at the tips led me here, and I also realized my fingertips are wrinkled. After years of dislocating various joints, I’ve always suspected I have EDS hypermobility type. I’ve never seen a rheumy, but I have limited my activities quite a bit, so I don’t risk injury.
I see a cardiologist to treat my NCS, and visit a massage therapist regularly to help with back pain, ciculation, and muscle knots.
BJHS seems to go in line with the general autonomic dysfunction I’ve had my entire life. I just cannot cope with the poor sleep I get, and often find it difficult to get out of bed in the morning. Thank goodness my husband is always there to help me pick up the slack. I don’t know what I’d do without him.
I was recently at the doctor for a checkup and measured very low on Vitamin D and sodium, so am supplementing, which has helped me feel a little better and more alert.
Anyway, my goal now in my 40s is to try and stay as healthy as possible for as long as I can. I stopped exercising about 10 years ago because of general exercise intolerance and fear of injury, but plan to start a very low-risk plan to see if it helps me feel better.
Sounds like Humira would be a good medicine for you. I have R/A and other symptoms like yours. Good luck with treatment. :o)
This article may be the answer to my prayers – I just hope I can find a doctor that will help me confirm or rule this out. All of my symptoms began after a toxic dose of Cipro and Levaquin 11 years ago – I wonder if this can be antibiotic induced. I have everything – actually I lost nearly two inches of my height in the first year and I have suffered beyond imagine. Carpal tunnel, tarsal tunnel, mitral valve prolapse, premature cataracts, dry eyes – dry everything! My fingertips are deflated my fingernails are clubbed… thank you so much for this information – I feel hope once again. 11 years of suffering without treatment has been too long. Thank you.
I was so happy to find your blog! My daughter has JHS and has been through a multitude of treatments that have not helped her pain. She is a freshman in college and is currently in great pain. I would like to find a massage therapist to try the treatment you had. I didn’t get much info when I googled ” ligament release massage .” If you’re still checking in to see the comments, could you please let me know what fe of massage therapist he is? I’m looking for someone in the Washington DC area.
Thanks!
Wow! Feel as if I could have written this myself. Both discouraging & encouraging at the same time. I’ve only been on this journey for the last ~4 years or so, starting when my lifelong issues finally overwhelmed me and began to rob me of most of my comfort and joys. The lack of knowledge/understanding in the medical community is very troubling., especially given how many first-person accounts like yours one can find online. Clearly there is a (growing) body of evidence & research but it seems largely ignored.
Even in New England, it has taken me 4 years to find a primary doctor who has even heard of BJHS, (let alone accepts it). It was a diagnosis I had to make myself after hundreds of hours of my own research (reading accounts like yours.) Even my “top doc” rheumatologist at a preeminent Boston research hospital, and the pain management specialist pooh-poohed me when I tentatively asked each of them about it.
Absolutely shameful.
Like you, I’ve had the markers my whole life – all of them. And like yours, my deceased mother (and grandmother) most certainly had it as well, suffering in relative silence their entire adult lives. My current PT, though he is familiar with BJHS and he means well, is a little flummoxed and is not sure how to treat my seemingly intractable problems. Nothing so far has helped. Massage seems to bring some temporary help, along with heat therapy. Beyond that, no substantial relief.
I’m hopeful that we afflicted can combine our voices and open some minds among the medical and especially the health insurance communities. This is a very real problem and we who suffer shouldn’t be swept aside.
Thanks for sharing your story. Keep the faith.
Thank you for sharing your story. I am currently involved in a study to develop a new variation of Ehler-Danlos Syndrome defined by joint laxity and recurring pinched nerve in the upper extremities only. In a span of 19 years I have had 15 arm surgeries (finger, wrists, elbows – 8 on my Right wrist alone) with the first when I was 12, although my pain started when I was 8 (now 31).
Some of my surgeries were due to torn ligaments from getting rear-ended by a car going 55 when I was stopped – never had a broken or fractured bone even though I consider myself pretty clumsy!
When my healthcare denies me physical therapy I have more problems. I go to 6 hours of PT/ week (for my hands, neck, and a massage.)
I am meeting with a neck surgeon in 2 weeks for a disc bulge pinching the nerve at C5/C6 and am freaking out. I was wondering if anyone out there, who has BJHS or any variant of EDS has had any surgeries related to their disease? When I have a surgery for a pinched nerve, I INSTANTLY feel better upon waking. All of my pre-surgery test results have ALWAYS been normal yet the surgeons ALWAYS see excessive scarring, nerve entrapment, adhesions, etc.
Sigh. Even my parents, who are physicians, get frustrated with me when I have another medical problem. It is hard having no support or people to talk to. I feel like I am the girl who is “always complaining” and try not to mention my problems so as not to lose friends over being a broken record.
For the most part, I am a positive and upbeat person… But some days it really drags me down.
I, too, have the issues with sleep. My “combo” is ambien, melatonin, and sometimes a benedryll if I haven’t had deep sleep in a few weeks.
Wow, Thank you for this, its the first thing I have found since being diagnosed with BJHS in Aug last year that literally describes my symptoms!! Unfortunately I also have Fibromyalgia which affects pretty much every area that BJHS doesn’t Lol!!
I have just read the blog to my husband as it’s very difficult to try and explain to people what you are feeling and as nothing is visible people look at you strangely when you do try to explain that your in constant pain!!
I am due to go back to work in March after being off for nearly a year on maternity leave after having my second child. My rheumatologist thinks that both my conditions have been caused/aggravated by pregnancy and the trauma this causes on the body. I am looking forward to returning to work but as I am a police Officer I am also hesitant as to whether I will cope long term! I have taken measures like reducing my hours to part time, I have been steadily losing weight since giving birth and have been regularly walking my dogs, swimming, light gym work and Pilates to slowly build my stamina, fingers crossed all will go smoothly!
Thank you again it’s always nice to know your not alone!
You did a real good job posting this out, think we might be sharing the same condition, thank you so much.
Recently Im experiencing symptoms I have not had in the past, like heart palpitations, wrinkly fingers, falling hair and even increased sensitivity to cold (I feel comfortable in poor air circulated rooms too). I had a recent tonsil infection too which I had no idea how it got to me. I am only 24, thinking my body is aging early, but when I read your blog, I realized this could all relate to my hypermobility joint problem too! Could it be that I have BJHS? There was a doctor who told me I have looser joints than normal people, I went to him because I had some issues walking properly (my feet leans to the sides when I walk) that was the time when I suspected myself to suffer from this condition. Since puberty, I find it hard to sleep at night, and I hardly get any good sleep too, but I am not sure whether this relates to your condition as I don’t really feel any pain.
I am 23 and have been searching for answers to my fatigue, dizziness, anxiety, ect, for so many years. Finally, I started having joint pains (this is not my primary symptom, actually), and my primary doc sent me to a rheumatologist who informed me I have benign joint hypermobility ehlers danlos type? Reading your article blows my mind a little. Earlier this year a chiropracter did some scan of my back and let me know theres slight scoliosis and is loose at the atlas, saying that I am always in fight or flight due to this. Which, due to the constant nightmares and anxiety at every point of the day makes total sense. I wake up scared to any sound, thinking someones broken in or is out to get me. Very PTSD ish, yet I have never had anyone break in a house or hurt me like that. I have always had heart palpitations, sensitivities to foods, and have pretty horrible depth perception. Reading this makes me feel much less crazy. My ovary twisted into a knot and killed itself a couple years ago, I have had rectal prolapse my whole life too not realizing that was not normal.
thank you for sharing so much in your article.
Is there anything you do for the fatigue? Because that is such a killer.
I’ve been reading a lot of comments from people suffering a lot of symptoms and they all sound like the same thing. Symptoms that have underlying cause, brought on by Lyme Disease, Chronic Lyme or Congenital Lyme. Various sensitivities, chronic Strep throat, PTSD, birth defects, heart palpitations and the list is long.
I add my thanks. I have MANY of the “issues| you mention here, but I will never be given a diagnosis… cuz it’s just not on anyone’s (read the medical folks”) radar. Knowing I am not crazy helps a tad. (Knowing I will never jog again and God knows how fast my scoliosis will get bad… not so great.)
Insomnia and PTSD? Check.
Abreaction to meds? Check.
Hypermobilty? Check.
Fast brain? Check.
Killer fatigue? Check.
Massage helps? Check.
Mother probably had it? Check.
Anyway, thanks. Sigh.
I think you just saved my life
everything you are describing here I have experienced due to anti anxiety (benzo) withdrawal and tolerance . I’ve been dealing with this for 12 months now, if it’s prolonged withdrawal it can last a very long time. I suggest looking up benzo buddies support forum. I had no idea benzos could do these things a to me. I was on benzos for a good 8 years on a low dose and the withdrawal is hell. (It’s getting better though) if ya have any questions you can email me at dasdeeboot@aol.com
I came here from Pinterest after seeing the picture of your nails. I have that same issue and have been trying to figure out what the reason behind it is…if it is serious or otherwise. I happen to be extremely hypermobile and found your information very helpful. Thanks!! Btw….the dislocation and relocation of your joints is called a subluxation….where it comes out and goes back in right away 🙂
I have no idea how you stole my life story, but you did! I guess I fall into the recent unofficial diagnosed category. I was referred to a PT for some neck pain, and she turned out to be a god-send. The first meeting with her she pegged me as having hyperlaxity, and the more I look into it the more a lot of my health issues have been validated and actually make sense. Thanks for all of the great info. Us “chronic” badasses have to stick together and help each other.
I have BJHS/HMS and some other stuff. Just wanted to say BJHS isn’t rare. Not for nit-picking, but because if someone suspects they have it, they should probably bother to see their doctor. So, BJHS= not rare disease.
Have you looked into mast cell activation syndrome and pots? Some of those symptoms sound like those on top of the eds stuff