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.