August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

Ehlers Danlos Type 3 Hypermobility - Do you have it?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Eeyore, May 9, 2015.

  1. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,438
    New Zealand
    Maybe more women have hypermobility and more women have ME. Hmm.
    But still potentially a significant difference in frequency of hypermobility between people with ME and those without.
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,255
    Likes:
    32,062
    The trouble is that all sorts of factors can skew those figures - as Amolak will very readily admit. We need a proper population based study with people being assessed 'blind' for hypermobility by people who do not know whether or not they have ME.
     
    Hutan likes this.
  3. Eeyore

    Eeyore Senior Member

    Messages:
    595
    Likes:
    815
    There certainly could be some bias regarding physician and/or patient expectations of hypermobility / ME comorbidity. However, the fundamental problem with ME is there is so rarely high quality research to work with. One is given the choice of either doing nothing, or working off relatively low quality data, with a few high quality studies thrown in from time to time. It's not working in the world of heart disease, breast cancer, or even RA where there is a plethora of new, high quality research on an ongoing basis.

    Scientists are taught to be skeptics - which is not bad in itself. The problem is that we create a self perpetuating cycle where skepticism leads to a lack of action because there is no good quality research to back something up, so as a result, no good quality research gets done!

    I think this is why so many of us hope the Rituximab trials change this - if in fact we can get some interest by the scientific community based on some high quality, double blinded, placebo controlled studies, then there will be enough evidence that there is a problem to actually look for some evidence of a problem...
     
    Skycloud, Valentijn and Hutan like this.
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,255
    Likes:
    32,062
    Fair enough but one has to be very sceptical about claims that look as if they may be self-fulfilling. Clinics are now full of people with hypermobility and ME because there is supposed to be a link and so people with both get referred. In the hypermobility clinic in 1977 nobody had anything like ME as far as I remember.

    Scepticism need not lead to lack of action. Scepticism is leading to European collaborations that should generate the sort of population based data we need. Various people are pushing for the studies we need and people are applying for grants. I would be more sanguine.
     
    Eeyore likes this.
  5. Eeyore

    Eeyore Senior Member

    Messages:
    595
    Likes:
    815
    @Jonathan Edwards - I'm not disagreeing with you at all and share your skepticism about the EDS connection until it is shown with a solid epidemiological study of sound design. Just pointing out how this can be a self-propagating cycle - essentially a flaw in the basic design of the way we allocate finite resources to medical problems.

    Part of the flaw is just what you mention - by failing to allocate a relatively small amount of funding up front to determine if in fact there is even a problem, we waste quite a lot of (often other people's) money and time pursuing dead ends - which is also unproductive and bad science. We are so often penny wise and pound foolish.

    Your insider viewpoint that ME research really is changing from this awful world of pseudoscience and hand-waving is very encouraging. You would be in a position to see it before I would. I really hope it comes to fruition. One of the most trying aspects of the illness for me is finding that turning to science gets me ignored and turning to those who would "help" gets me unproven treatments or even snake oil. I continue to hold the view that it is not science that has failed us but rather its flawed human practitioners (and those who control the purse strings) - but I can understand why so many ME patients abandon the scientific pursuit of truth and turn to "alternative medicine." The amount of money wasted in useless treatments and pointless, poorly designed studies could not only fund the studies we need to understand ME, but also much of the cost of treatment! That doesn't even start to look at the lost productivity and human suffering.

    I also feel extremely hopeful and encouraged by the work of the Norwegians. They don't seem to have found the cause, but went at the problem from a different angle entirely. Efficacy of treatments that work in other autoimmune diseases in well controlled ME trials - which I believe is what we are seeing - is very strong evidence for an autoimmune/autoinflammatory or at least immune dysregulatory mechanism of some sort. I noted they are now starting phase 2 trials with cyclophosphamide, which apparently has shown efficacy in some patients who did not respond to rituximab. While I personally would not be in a rush to take alkylating agents, I can see why some patients would make that choice, and I would not rule it out - but what is more interesting to me is what it says of the mechanism. Again it suggests autoimmunity or something similar.
     
    Last edited: Jun 25, 2015
  6. NilaJones

    NilaJones Senior Member

    Messages:
    636
    Likes:
    347
    Here's a paper by KDM (second author) from 2006 finding 58.5% of ME/CFS patients have hypermobility:

    http://www.ncbi.nlm.nih.gov/m/pubmed/16396727/?i=17&from=De Meirleir K[Author]

    (NB, I only read the abstract.)
     
    justy, PattyPlum, Helen and 3 others like this.
  7. PattyPlum

    PattyPlum

    Messages:
    9
    Likes:
    11
    Yes I have EDS 3. I was diagnosed last year at the age of 54!

    I had normal childhood. I dislocated my knee at 13, 17 and 23. When I was 24 I had Epstein Barr which gave me ME/CFS. Now I know I have EDS and having chronic fatigue from the autonomic dysfunction which goes hand-in-hand with EDS and this all makes sense. I have just been diagnosed with Postural Tachycardia Syndrome, too. I have painful neuropathic pain all over my body and head and that is also part of the package. At last I know what is wrong with me. Took too long to get a diagnosis of each part of this condition.
     
    justy, SDSue and Hutan like this.
  8. PattyPlum

    PattyPlum

    Messages:
    9
    Likes:
    11
    EDS is genetic and the ME/CFS symptoms come later.
     
    Cats and Hutan like this.
  9. TrixieStix

    TrixieStix Senior Member

    Messages:
    539
    Likes:
    894
    @Jonathan Edwards I just found out today that my primary doctor thinks I may have Relapsing Polychondritis!! :( I had never even heard of the disease until earlier this week, but that's not surprising given how rare the disease is (affects only 3 in every million persons). Earlier this year I began to experience episodes where one of my ears gets super red, hot and painful (sparing the lobe). I started taking photos of my ears every time it happened but had not mentioned it to my doctors until last week. After reading up on RP I realized it really does sound like what I'm experiencing. I don't ususally get scared, but this possibility has me a tad scared.

    3 weeks ago I developed what we now realize was episcleritis in my right eye (it was wrongly assumed to be an infection at first), then a few days later I had one of my "red ear" episodes, then days later my right cheek turned bright red, hot and very painful for a day, and finally 1 week ago I woke up to find the right side of the bridge of my nose swollen, slightly red and extremely painful (like someone had hit me in the nose with a pipe). The "red ear" thing started back up at the same time as well.

    The nose swelling and pain has just started to simmer down. An MRI of my face was done a few days ago and the results came back showing absolutely no signs of infection and blood work came back showing a mildly elevated WBC and mildly elevated ESR. My doctor says things are pointing very strongly in the direction of Relapsing Polychondritis and it would explain other symptoms I've developed over this past year (episode where my breathing becomes restricted and feels like my wind pipe/throat area is half closed up, tightness/soreness in my throat structures when I swallow (feels like I have to work extra hard to swallow), episodes of hoarseness, severe joint pain & tenderness of the small bones of my fingers and wrist and toes, ear canal pain.

    I was already scheduled to see a new doctor who specializes in both immunodeficiency & rheumatology (Dr. Karr at University of Washington in Seattle) in 3 weeks to delve deeper into my genetic complement deficiency (my C3 is 30% of normal, CH50 is low, C4 normal, AH50 normal) and do more testing to figure out if I have a Factor I or Factor H deficiency thus resulting in the low C3 or if it's a deficiency of C3 itself, etc. So now on top of that I might have RP! Any advice in regards to RP diagnosis?
     
    ScottTriGuy likes this.
  10. waif

    waif Senior Member

    Messages:
    104
    Likes:
    32
    i'm so braindead i didnt see this thread
    i have h-eds. hi all

    n=1 my dad has FREAKISIHLY soft hands and when he was a kid he could make his shoulders touch each other. i've never had genetic testing but there is absolutely a genetic competent with me. because he is a man, his symptoms are less pronounced. and apparently his dad watched tv with mirror glasses on because his neck hurt so much, red alert red alert.

    a problem with being labeled is an edser as you/doctors etc tend to blame quite literally everything on eds when it could be caused by something entirely unrelated. saying i have eds has only been extremely useful with physical therapy, because i could severely injure myself. everything else is meh.
     
    Last edited: Oct 22, 2017
  11. Eiren

    Eiren

    Messages:
    52
    Likes:
    35
    Okay, reading all this through,and mulling it over. Very interesting.

    I think Rowe's research explains a good bit of the underlying pathology for my condition. Which is something I've been puzzling over for a while now, so thanks all.

    As background, I never considered myself very bendy as a kid. But, I was a bit clumsy, and sometimes things would go goofy. Like, I'd roll my ankles a lot (without meaning too). I can touch my nose with my tongue. I thought everyone could hyperflex their elbows like I did. My hips would click a lot. My wrists became easily fatigued and sore in gymnastics. But no super weird-looking stuff. I never really tried.

    I was also always a bit "delicate." Fainting easily, hypersensitive, easily fatigued. Stuff like that.

    I was also active, and did gymnastics and dance for 10+ years. I was never able to do the splits. But I did sprain my ankle twice (on relatively simple dance moves). I also started doing some exercise with free weights and some jogging as a teen. I was never especially good at any of these things, but hey, it was good and healthy.

    Joint hypermobility DOES NOT equal muscle flexibility. I think a lot of people confuse these two things. They can go together, yes, especially in children, but they don't have to. This is very important.

    So, I grew up. Two normal pregnancies. I thought myself an average, though a bit more fit and healthy, person. But then I got a tick bite with EM, and a few months before that probably EBV (not confirmed at the time). Went downhill with strange pain in my hand, then in my whole body. Initial thought was tendonitis in my hand, so ended up at hospital PT where the doctor found hypermobility in my finger joints and mild hypermobility in the rest of my joints. I brushed this all off at the time, because of the pain of the tendinitis and other weird pain I had and went for more Lyme research.

    Well, more Lyme research was a dead end. PT went badly. Ended up at a rheumy who diagnosed fibromyalgia, noting that all my muscles were super stiff and cramped.

    Fibromyalgia is.....well, ok, it's a name. But why are my muscles all stiff and tense? And now I'm thinking about the joint hypermobility the PT doctor noticed. Now, looking at me now hypermobile is the last adjective you'd use. In fact, I've been having problems with my fingers actually not being able to extend to straight.

    So, based on what Rowe is saying, I think what's going on with me is that I was always on the joint hypermobility spectrum. However, after infection (bacterial and viral) the myo-fascial stabilization of my joints became damaged. In response, my body has increased the spascity of my muscles to try to keep my joints together.

    I tried the elbow exercise in the video, and yeah, OW! That really hurts. Tingles down to the fingers and up my neck.

    When this all started peripheral neuropathy was researched, but my nerve conduction test, and the skin wrinkle test, came back normal. But I still have tingles, and I have cold numbness in my fingers while typing this. So his theory would also perhaps explain why I have nerve issues, while there's nothing detectably physically wrong with my nerves.

    Now, I'm here on PR not sure if I have CFS. I have fatigue, and exertion induced fatigue, but it seems a bit more minor than what I read a lot of you struggle with. So I don't know. But the overlap between all these diagnoses is interesting.


    So, yes, I totally understand what Rowe is saying with limited ROM with hypermobility. But I'm not sure if this is CFS specific. Or maybe it is. I don't know. Maybe he is uncovering the underlying pathology of a condition, which presents as painful muscle spascitiy (fibro) or muscular-PEM (cfs) in the subset who have hypermobility + infection. That's interesting.


    I'm going to try a different PT place once I get referral from my GP. Maybe I'll see if I can squeeze in the sort of PT Rowe talks about. I've already started Tai Chi, and yes, it does seem to be pretty helpful.
     
  12. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    16,060
    Likes:
    24,935
    Albuquerque
    Starsister, I moved your question to an EDS thread with Multiquote so as not to derail the other thread.

    We don't really know the full implications of EDS. There seems to be a genetic crossover that links it to some of us with ME/CFS. So it is hard to know which symptoms arise from which condition. Some things are clearly EDS like the collagen problems that lead to subluxations, perhaps other spinal problems and perhaps a tie-in with OI through the vein valves bending in both directions. Also perhaps floppy heart valves--basically anything that depends on collagen. So for me, I can pin most of my pain to EDS as my SI joints go out if a butterfly passes by. Also, Other than that, it is pretty hard to pin down the source of my symptoms as many are listed both under EDS and ME/CFS. What are your ideas and experience?
     
    NilaJones likes this.
  13. Starsister

    Starsister Senior Member

    Messages:
    747
    Likes:
    1,984
    US
    @Sushi Thanks for moving this...i didn't know of this thread or wouldn't have thought it applied to me since the things I looked up online looked like I fall somewhere in the mild hypermobility range. Id heard if EDS before but never thought it applied to me since i didn't have problems walking unless my back is out. I only recently had a chiropractor pick up on my question about hypermobility and he agreed with the term.I was told by a body work therapist years ago that I was more flexible than most people and it could be a problem.

    Only in recent years have a had a few occasions where my knee slipped completely out (never anything else other that back although I feel my elbows get close at times) when I was careless and moved a certain way..I try to be careful and not over extend my joints like Ive been used to doing my whole life. In my mid 20s I was told by an osteopathic dr that I had too many back problems for someone my age and to quit my stressful job. I did, but the back problems continued to worsen. But back didn't completely slip out where I couldn't walk until early 90s when I was also very sick with what I self diagnosed as CFS and Candida. The term Fibromyalgia was not one I found in any books or from drs at the time.

    I have had recent xrays dont that show a scary looking S scoliosis upper and lower in my spine. My MRIs in the past mainly focused on bulging discs in lumbar. I often have to have weekly chiropractic adjustments jsut to stay functioning. I've had about every kind of alternative treatments i the last 35 years...chinese medicine, magnets, herbs, acupuncture, sacral cranial, other forms of chiropractic, etc. Im very scared the last few weeks because something has gotten worse with my hip or leg joint, or lower back slipping out with just standing for a few minutes. Ive been to a Spine Center in a hospital and he looked at two xrays and said there was nothing he could see that could be corrected with surgery and sent me to the pain clinic but all they could do was steroid injections which I was not trusting. I asked then why cant I stand, he said maybe blood pressure. I do get faint and have to lay down in public floors a few times, but feels more like nerves pinched or something not getting to my brain.

    I'm dismayed to see that the POTS is comorbid with the EDS or hypermobility. I know I must have some kind of Dysautonomia, (sorry for the spelling, all these words are completely new to me) OI or POTS and relate to the symptoms on the online groups. But again, it is not so severe as many or most I hear about. Mostly doesn't keep me from functioning, except this year started to have the rapid heart beat, chest pain daily, and now large parts of the day. My BP tends to run low but not necessarily during the HR episodes. Ive had two episodes of extreme vertigo the last year for the first time as well.

    None of the specialists seem interested in following up on any of it, shrug shoulders and refer me elsewhere,although a neurologist wanted to do an EMG but Id have to pay out of pocket and if there is nothing they can do anyway than i can't bear adding more pain to my body. Labs did show positive ANA but follow up test for autoimmune were negative. But i feel it is both autoimmune and viral but can't figure out the connection to my spine unless it is the connective tissue link.

    Ive had neuropathy in my feet starting in mid 80s but didn't know it had a name till 10 years ago, now it is in my legs, hands, some arm. Not seem to progress except last three winters Ive had the Raynauds symptoms as well where I can't bear to have my hands cold at all. Sorry this is so long, but after being on PR for about a year now, I'm realizing that so many things I experience may be related, and Im getting worried about my future. The spinal issues are far more debilitating than the pain or fatigue. I'm trying to strengthen my muscles to see if that can help with the standing.

    Between the CFS symptoms, and bronchitis lasting months, I practically lived in bed for a year and see that I may have become hopelessly deconditioned to where I can not come back from now.... which apparently means being unable to stand or walk for the rest of my life, which is not an option. I would end my life if if it comes to that, not due to depression but rather than be a ward of the state as I have no friends or family left to handle my affairs. So, after all of that, my question is........Do you know of a specialist other than chiropractic that could be helpful for my spine. Someone more likely to connect dots? Did I just happen to see a "dud" at the Spine Center? I don't mind being miserable with everything else, my energy for many years has been good, but I can't live without my back. Just ignore this post if too much, I do understand our limited energy. :)
     
    Mel9 likes this.
  14. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    16,060
    Likes:
    24,935
    Albuquerque
    If I am not careful something in my knee slips out too--perhaps the knee cap? It is painful until I move my leg in a way to pop it back.
    I didn't know that I was hypermobile so overstretched with yoga. Now I have learned the lesson and in recent years machine assisted pilates (done lying down) has been my exercise choice when I was able to.
    That used to be me, but the adjustments never lasted.
    I had that until about 10 years ago when it disappeared after taking meds for dysautonomia. I don't know which drugs affected the Raynauds like symptoms though but they haven't come back.
    I bet you can come back with the right type of therapy. I have, in the past, been able to re-condition through extremely incremental anaerobic exercise--like increasing by a minute every two weeks.
    I have tried just about all types of therapy including osteopathy but have found the most help with a very experienced physical therapist who is familiar with Ehlers-Danlos Syndrome. She not only "puts me back in alignment" but has shown me how to work on myself at home both through gentle strengthening exercises and use of props. I now see her every 3 weeks and work on myself in between. Insurance pays for it.
     
    Mel9 and Starsister like this.
  15. Starsister

    Starsister Senior Member

    Messages:
    747
    Likes:
    1,984
    US
    @Sushi thanks so much for your responses, and that cool quoting. :cool: It brought tears to my eyes to hear someone say "I bet you can come back...." Just what I needed to hear to give me hope and pull me away from the edge. All I get from the only real humans I talk to ,the doctors, (although that could be debated) is shrugs of indifference and " you'll just have to learn to Iive with it".

    I have tried physical therapy a few times ..was last year..but it seemed to aggravate my allodynia skin pain and couldnt function so dropped it. It was also very expensive since it is out of pocket for me and I couldn't afford to go as often as they wanted me to. But I'll call around and see if I can locate someone within a short driving distance who works with EDS. If I can shift my money from my chiropractic care to the PT, it would be doable! :thumbsup: I'm so glad you found something and someone that really helped you.
     
    Mel9 likes this.
  16. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    16,060
    Likes:
    24,935
    Albuquerque
    My PT has about 35 years experience and works a lot with ballet dancers so she had seen a lot of people with EDS as being a ballerina sort of self selects for EDS. She also thinks outside the box and devises techniques that will work for someone with both EDS and OI. She got the message on the first appointment when I suddenly had to sit on the floor. I am covered through Medicare.
     
    Mel9 likes this.
  17. Starsister

    Starsister Senior Member

    Messages:
    747
    Likes:
    1,984
    US
    @Sushi I think my odds of finding someone very experienced is low but I'm giving it a try. Most of our good providers have moved out to the far suburbs outside of reach. But the last two years has taught me how it is really true that we can survive on hope, when there is nothing else to work with. All of my social security goes to paying my monthly insurance premium and I never am able to meet my super high deductible so I can get benefit, but only one more year to qualify for Medicare and then I can get some actual treatment. :D

    I'd read that about the ballet dancers and hypermobility. Interesting that I wanted to be a ballet dancer when I was 4, so much that my mom put me in ballet lessons for a few years when I was 5. It was more than just wanting to be a ballet dancer, but anything where I could move and stretch, run and jump. Like my limbs just really needing that stretching and to use that flexibility somehow. I can still fold up like a pretzel, sometimes not on purpose, but these days I don't have the muscle to " un pretzel". People nicknamed me Grace because they said they'd never seen anyone so graceful. Ha, now I'm a klutz! I'm tall and thin for my age, and topple over because my feet are so narrow....and bendable.
     
    Sushi likes this.
  18. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    16,060
    Likes:
    24,935
    Albuquerque
    :thumbsup:
    You sound like an EDS poster child. Check this: is your "wingspan" greater than your height? EDSers have certain typical body proportions. I am also tall and thin and my feet are really long and narrow. When I have been in a yoga or pilates class I can easily pick out the students who look like they have EDS. Dr. Blair Grubb (perhaps the most famous autonomic specialist) used to say that when a patient walked through his door he could spot the EDS patients immediately (the majority of his patients).
     
  19. Starsister

    Starsister Senior Member

    Messages:
    747
    Likes:
    1,984
    US
    @Sushi I'm on my computer so we'll see if this quoted correctly. but OMG! I was about to write back that I don't fit any of the criteria for EDS, as I've always seemed to be normal proportions, just normally long.... I just measured my arm span and it is 5'9", about an inch longer than my height, except I think when younger I was 5 8 1/2. My feet are size 9 and used to be AAA before some spread.

    Someone pointed out some years back that my ears are unusually long as well. Are your ears long? Now I'm self conscious of my ears! My brother even more so, but I'm not aware of any extra flexibility issues with my parents...none sought chiropractic care, although my mother had scoliosis and chronic pain and eventual spinal fusion when I was a kid, so not sure about the hereditary discussion on this thread..and too medically illiterate to understand most of it.

    I did that Beighton? test online, awhile back but didn't seem I rated much on that.Not finding any docs to have the discusison with so never got dx with anything. I just read through this entire thread and am overwhelmed at all the technical medical terms and knowledge. I think I got the gist of some of it though. Still think im essentially mild on the hypermobility scale as it was never a problem until recently. It is a convenience to be able to put much needed skin lotion on my back, but I have to be very conscious when moving joints to not mess up something. I feel like with practice I could be Houdini, as I know what I have to do in my brain to make my joints move, and what I have to relax to get my knee to pop back in place. but ouch.

    Ive never been able to do anything weird or fancy..its just that with that I can fold up easily for example getting into someones back seat of a two door car, but now someone else has to pull be out because I can't push enough with my legs. My joints are hurting all the time now, which I usually haven't had a problem with pain there, although the MRI's for years have shown osteoarthritis, stenosis, etc, and the xrays show the scoliosis has gotten worse. Just my darn vertabrae move constantly. I hope if I can learn some strengthening excersizes, that will help.

    My shoulder and neck pain is back after only two days out from the chiropractic adjustment, although not as bad yet. Seems the culprit was laying down on bed last eve, holding the IPAD in my left hand so I can use my right hand to navigate. Hard to hold the IPAD up to eye level, plus the weight of it on my arm and shoulder, or what it does to my posture when sitting in bed, but sitting on sofa is harder as Id have to lift the Ipad even closer to my face to read etc.

    Computer is still frustrating due to eyesight and hand tremor. Thanks for your feedback, at least I feel like I'm narrowing down the cause of some problems. Im getting convinced that even though no medical staff will validate it, that my spine problems are resulting from collagen issues, or autoimmune issues causing attack on connective tissue in general.
     
    Sushi likes this.

See more popular forum discussions.

Share This Page