Hypermobility and me

Some friends and family know that I have hypermobility problems, but it’s not something that I’ve been able to explain very well – I think my parents are the only ones who really know much about it. So I’m posting this so that I’ve got a record and I have something to point to the next time people ask things.

I was diagnosed with loose ligaments when I was six or seven. I’d been having joint injuries – sprains and dislocations – at frequent intervals for a long time, my first being a dislocated shoulder at the age of two. My parents were apparently concerned and got the doctors to investigate, finally going privately to see an orthopedic surgeon who diagnosed me with  loose ligaments (now it would be called hypermobile joints). He advised us not to let me play contact sports or sports that required a lot of twisting and said that the symptoms would improve as I got older and stiffened up. After a few years, we also did some physio to strengthen the muscles around my joints so that they would hold me together better.

You may ask why my mum was so determined to find out what was wrong and why the frequent injuries worried her. The reason is simple and somewhat connected to my problems. Her family has a hereditary condition called osteogenesis imperfecta, brittle bones, that affects two of her brothers. The bones are brittle and fracture very easily – the stories she can tell about their breaks would be unbelievable if I didn’t know them. Although genetic counselling reassured her that the risk of her having children with OI was low, having a daughter with frequent joint injuries can’t have been fun so she wanted some kind of explanation.

The doctor’s reassurances that I would grow out of it have sadly proven not to be quite correct. The incidences of injuries have gone down to a couple a year rather than a couple a month, but now there are other problems appearing. A few years ago I started to get pain on and off in my left hip. Eighteen months ago, this severity and frequency of the pain increased a lot so that I now need a walking stick at times and there is always a bit of twinge in that hip. At the start of 2006, I also started to get lower back pain that increased in severity until I was struggling to do much of anything by April.

I saw various consultants and physios and my rheumatologist has now concluded that the pain has its root in my hypermobile joints. I’m on daily strong anti-inflammatories and a TENS machine, which keeps the pain at a level that allows to me to function provided I’m careful about what I do. Some days I feel worse, need top-up painkillers and really look awful. Sometimes I have good days. I can’t predict what today will be, although I usually get a fairly good idea if I’m really stiff and sore when I get out of bed! Being in pain most days makes me quite tired, which is why I occasionally look like a really sore zombie. It’s all good fun.

My rheumatologist has now referred me to a clinic at UCLH in London run by Professor Graham, who is the country’s leading guy in hypermobility conditions so I should start to get some answers about what’s really going on and possible what to expect next. The appointment will be in August. Edited to add: You can read the results of the appointment at A bit of a blog catch-up and Death of a star.

The bit that most people ask is what hypermobility is. Essentially it’s when your joints have a larger range of movement than normal because the ligaments holding joints together are longer and stretchier than they should be. There are various reasons for it happening, for example dancers train their joints into a degree of hypermobility. In my case, it appears to be genetic. My mother has hypermobile joints as do several of her cousins and it appears to be getting passed down the generations. Hypermobile joints is also a symptom of OI so both my uncles have rather bendy joints in addition to all the broken bones.

The genetic versions of hypermobility are caused by defects in the formation of certain types of collagen. Co-incidentally, OI is also caused by defects in the formation of certain types of collagen. For me, it seems quite odd that we have two collagen-related diseases running in the family so I now wonder whether there is some kind of link.

Hypermobility and OI are both classed as hereditary connective tissue diseases (HCTD) and this covers a variety of disorders, many of which include hypermobile joints as symptoms. The condition that I probably have is Benign Joint Hypermobility Syndrome (BJHS), although the benign is a bit of a misnomer because it can cause real problems for patients.

Another such condition is Ehrlers-Danlos Syndrome (EDS). There are various types of EDS of which one, EDS type III, is called the hypermobile form (although all have hypermobility as a symptom) and Professor Graham has said in several papers that he believes BJHS and EDS type III three are probably the same condition. One of the questions his team should be able to answer in August is whether I have BJHS or Hypermobile ESD and what this will mean for me. It’s information that I think the whole family could benefit from. Edited to add: Prof G has diagnosed me with BJHS, equivalent to Hypermobile EDS (according to his report on me).

I was diagnosed with fibromyalgia a few years ago, which at the time seemed a reasonable explanation for the joint pain was I getting and the tiredness I often had. My rhuematologist thinks it’s unlikely that I have FM now and I am inclined to agree – the BJHS or EDS explain all the symptoms that my GP used to diagnose the fibromyalgia and it seems much more likely to blame an existing thing!

The hard part for people just looking at me from day to day is that it’s not a visible problem and some days I look pretty normal. Other days, I just look really sore, stiff and exhausted. The days when I’m needing to use a walking stick are easier for people to deal with, but even then it causes problems from people who haven’t seen me using one and don’t know why I need one. All of this makes it hard for colleagues, and even friends sometimes, to understand what’s going on. Believe me, I’d rather have you ask me what’s happening than stare and wonder! It’s frustrating for me, too, to always be saying “No, I can’t, my back” or “Oh, no, my hips won’t let me”, particularly when I’m having a pretty good patch. If I’m looking good and still don’t joint in with activities, it’s because I want my good patch to last for a little longer. There are things that I miss that I used to do, things that I’ve never been able to do and a few things that I’ll even risk a really bad patch just to be able to take part in.

That doesn’t mean I’ve refused your thing because I just didn’t want to do it, though. It’s a weighing act in my mind – how much am I going to enjoy that thing and for how long am I likely to suffer? And also, what else am I doing in the next few days that I’ll have to back out of if your thing thoroughly does me in? Are those things that I could potentially get out of or will my backing out of plans cause a lot of problems for other people?

There are dozens of links around the web to help people understand so-called invisible disabilities. Check out butyoudontlooksick.com to find a site with some great explanations. If you want to read more information specifically about people like me, try out the Hypermobility Association or the Ehlers-Danlos Syndrome Foundation.

22 Comments (+add yours?)

  1. ckamuchey
    Aug 25, 2007 @ 21:23:35

    Hi there. I also have EDS Type III, but the MDs here in the US keep insisting is has nothing to do with BJHS. In fact, the MDs here say BJHS is not a problem and needs no treatment and is not disabling. (snort). Luckily my primary MD is not so narrow minded.

    Inn addition to your link, there is a EDS Alert Newsletter that comes out weekly: http://edsalert.greatestjournal.com/

    I found this to be very helpul in explaining EDS/hypermobility to family and friends. http://edsalert.greatestjournal.com/649.html

    Reply

  2. archerygirl
    Aug 26, 2007 @ 12:46:17

    Heh, I think one of the big problems here is that there are so many opinions on what BJHS is, what EDS III is and their relationship. I’m firmly on my doctor’s side with the BJHS=EDS III opinion because the differences everyone quotes at me are so minor and, sometimes, cross-over anyway. I have skin involvement so if I were being treated over the pond then I’d hope they’d decide it’s EDS III. The docs on your side of the Pond do seem to take more notice of EDS and actually have some understanding that the pain and associated problems can be quite disabling.

    I’m moving to Canada at some point in the future so I’ll have to hope that I can find a primary MD who is, at least, willing to be educated on it all.

    I’d forgotten about the EDS Alert Newsletter. There is a feed of it on LiveJournal as well: http://syndicated.livejournal.com/edsalert_gj/

    Reply

  3. Trackback: EDS Alert Newsletter No. 18 « EDA Alert Newsletter
  4. melissa
    Feb 07, 2008 @ 04:08:12

    Hi my name is Melissa. I’m also having some similar problems in the US, and I’m a registered nurse. I’m surprised that my ortho MD has never heard of this before. I’ve had repeated injuries over the years. My knees have been problematic since high school. I recently injured my shoulder which is why I was referred to him. They took an x ray which showed tendonitis, and a calcium build up on the tendons in that joint. He hasn’t bothered to do a gen. work up, but did state after a physical and ROM (range of motion) checks that I seem to have very hyper mobile joints. He seemed surprised that all my joints “pop” when I move them. I’m in therapy 2-3 days a week for 2 hours each with ultra sound therapy, and on mobic. Seems to be helping some. I just figured it was normal to be really tired and stiff, I just thought I was a wimp. I’m frustrated with the fact the my doc is reluctant to diagnose this and further educate himself. My Phys Therapist is on board with the diagnosis, and will speak to him about this. I’m fairly certain my mom has this. She delivered my sis and I both in less than 2 hours (labor included). I don’t think her’s was quite as severe though. My sis was born with bi lateral hip dysplasia, but is nolonger hypermobile. What is my next step in dealing with a stubborn doc???… He has the “but you don’t look sick” “you’re young and healthy, why are you here?” attitude. It makes getting my point across difficult. Any suggested literature? Please e-mail me at ##### Thanks for you help. ~Mel

    Reply

  5. archerygirl
    Feb 07, 2008 @ 21:21:00

    Melissa: I don’t know much about medical services in the USA, but probably the best place for you to try is the Ehlers-Danlos National Foundation. They have lots of information available for medical professionals so you could push your doctor in their direction or ask them for their literature to pass onto him. They also have a list of professionals with an interest in EDS. There are also services for people like us such as message boards and local support groups that you could contact for support and advice. It’s definitely worth getting this investigated further so that you can get the right treatment and set your mind at rest with a diagnosis.

    Another site that you might like to check out is ButYouDontLookSick.com. This isn’t a site for any particular medical problem but rather for all of us who have things that don’t manifest with huge, visible symptoms: the so-called invisible illnesses. The name comes from your doctor’s “but you don’t look sick” attitude! They have message forums available for all kinds of things (including a dedicated EDS board) and help and advice for dealing with invisible illnesses and people’s attitudes towards them.

    I really hope that you’re able to get your doctor to see some sense.

    Reply

  6. Julie Higgins
    Aug 06, 2008 @ 13:47:56

    Where in the US particulaly the Dallas area can you find a Dr. that knows about hypermobility?

    Reply

  7. archerygirl
    Aug 10, 2008 @ 19:58:32

    Hi Julie,

    I was based in the UK until recently so I have no idea about doctors in the US who might have an interest in hypermobility. If your rheumy has been no good so far, I would suggest getting in contact with the Hypermobility Association or the Ehlers Danlos National Foundation (both have links above). The members on their forums come from all over the world so if you ask around on their boards, hopefully someone will have some suggestions or recommendations. Another place to look is ButYouDontLookSick.com (again, links is above). They aren’t specifically about EDS/HMS but they have a section on their forums dedicated to us bendy bods and the members are always very helpful.

    My suggestion if you don’t know where to look would always been to ask one of these organisations because their members tend to come from all over the world and they always want to help people find the right treatment and help.

    AG

    Reply

  8. Carol
    Dec 22, 2008 @ 16:41:49

    I’ve had joint problems since elem. school. My mom has had minor symptoms but sets it up to being lazy and clumsy. The doctors tell me I’m hypermobile, but it shouldn’t be causing problems. They were ok with putting me on pain meds because they are also antidepressants, and they think it’s in my head. I found one physical therapist, who was from Canada, where she said they had a lot of information about it. She taught me a lot. The Rheumatologist said I could take some ibuprofin if I needed it, and finally made a diagnosis after I insisted she read information I put together and gave to her. They all insist I need to exercise, but every kind I’ve tried has left me with long-lasting injuries, except swimming. I’ve always loved swimming but have now developed an allergy to the chlorine, and can only go in the water about 3x a month. I keep trying to find a helpful doctor, but it’s very difficult in Idaho. No one knows what I’m talking about! I’ve looked through several websites, and even compiled a lot of information, but you’ve added a couple of resources. Thank you, I’m going to check them out.

    Reply

  9. archerygirl
    Dec 23, 2008 @ 09:18:02

    I’m glad that my links could help. The various support organisations out there are really great and the members can be very helpful. Check out the forums, particularly on the HMSA site, because there are often some great suggestions for physio and exercise that can help us. They may also be able to recommend doctors in Idaho that have some clue! Rheumatologists are your best bet for finding someone who has at least heard of HMS/EDS.

    Have you tried pilates? A lot of that is about gentle exercise to for core and joint stability that shouldn’t cause injuries (if done correctly with supervision) but will help to strengthen your muscles so they can hold you together a bit better. It’s helped a lot of us bendy bods who can’t do all the highly energetic, bouncy exercises that clueless physios try to encourage.

    Swimming is always terrific for us, but chlorine allergies are much less fun 😦 Just keep going and don’t let anyone tell you that you’re mad. Any doctor who says that hypermobility never causes problems doesn’t know what he’s talking about. Some people are hypermobile without issues, some people are crippled and there are people experiencing everything in the spectrum in between those extremes. It’s definitely not in your head.

    AG

    Reply

  10. Fliss
    Sep 05, 2009 @ 15:26:55

    Hi
    I’ve got HMS, I was diagnosed about a year ago when I went to see Prof Bird in Leeds. I’ve just read you blog andyou’ve described my feelings totally! I love travelling around the coulntry seeing my old friends but I just can’t any more. It hurts so much the week after it floors me. Like you said, Its not that we dont want to its just that we have to choose between fun and pain!
    any way, keep up the good work, I love your blog, it’s very well written!
    Best Wishes
    Fliss

    Reply

    • archerygirl
      Sep 14, 2009 @ 12:15:44

      Thank you! It’s so hard sometimes to get people to understand the difference between “I can’t” and “I don’t want to”. And even the difference between “I can’t today, but next week may be different”. I hope that my blog continues to be informative. I’ve heard great things about Prof Bird.

      Reply

  11. Tina
    Oct 14, 2009 @ 07:21:24

    Hi, I have just been diagnosed with Hypermobility, and from reading information on the web, and your blog, i suspect that I have Type III E.D.S. although this has not yet been confirmed, I have not yet had my blood tests back.

    I would like to thank you for publishing this blog, as most of what you suffer mirrors my life, and helps me to understand that i am not a wimp, or weak, THERE IS A REASON I ALWAYS HAVE SOMETHING WRONG WITH ME! as my Husband keeps pointing out.

    Thank you
    xx

    Reply

  12. jamie
    Oct 18, 2009 @ 11:37:43

    I too have been suffering hyper-mobility syndrome. I am 34 and am in chronic pain. This was gradual. I have had problems all my life that now I can say “oh, it is because of this”. I am on dicloflenac and tizanidine. It helps. But it isn’t everything. I am still in a lot of pain and unable to work. Everyday is a surprise. I never know when I will wake up in pain and unable to leave the house. My PT says that the pain isn’t indicative of damage and if I can re-train my brain to better organize the pain messages then I could be better. It’s hard when you have wobble because the pain is so intense in your ankles and feet and they feel like you are really doing damage.
    I am doing whole body vibration therapy. It is my new work-out. I am able to keep my muscle tone and stay fit. This is the only way. I can’t really go to the gym anymore.
    I live in NYC and do have a good Dr. that knew right away what was wrong with me. That was a relief. It took me a year to find him tough!!

    Reply

    • Jen
      Oct 31, 2010 @ 18:54:51

      Jamie, I sympathize! I have the same problems and have been trying to find a decent, kind doc who will diagnose me here in NYC. Rheumatologist and neuro, perhaps.. Do you recommend someone? I’m suffering something fierce. Thank you… Jen jkosarin@gmail.com

      PS SydK – did you find anyone?

      Reply

  13. SydK
    Feb 11, 2010 @ 18:45:00

    Jamie,

    I was recently diagnosed with Type III Ehlers Danlos Syndrome after years of misdiagnosis. Now that I have a reason for my years of pain, clumsiness, hypermobility this is a relief. However, all I have is a name for what is wrong with me but no guidance on how to deal with it! The geneticist can not help and my primary care doctor is clueless as he thought I was depressed and a hypochondriac. I also live in NYC but have had a hard time finding Doctors and professionals who can help manage my condition. Can you help and share your contacts? I’ve also contemplated buying my own vibration machine but not sure if I have the space in my small NYC apartment.

    Any help would be greatly appreciated!

    Thank you.

    Sydk

    Reply

  14. HBA
    Jun 11, 2010 @ 05:10:38

    Hi – thank you for such an informative site! My 4 year old has just been diagnosed with hypermobile feet and I was searching the web for information of the condition when I found your blog – I’ll check out the links you have provided and no doubt I’ll be asking a few questions in the near future 🙂

    Reply

  15. harish
    Oct 05, 2010 @ 14:10:34

    Hi I am harish The info was useful
    Doc diagnosed Hypermobility
    I am suffering from Osteoarthritis of both knee just like my mother
    But tilll date i had not met with any fracture.Is there any chance of me getting fracture due to Hyper mobility

    Reply

  16. harish
    Oct 05, 2010 @ 14:12:09

    Hi I am harish The info was useful
    Doc diagnosed Hypermobility
    I am suffering from Osteoarthritis of both knee just like my mother
    But tilll date i had not met with any fracture.Is there any chance of me getting fracture due to Hyper mobility.reply via mail

    Reply

  17. Mindy
    Nov 08, 2010 @ 01:36:08

    I came across your site while doing some research on hypermobility and OI. I have a 13 month old son who can bend his wrists and ankles farther than what I feel is normal, and his back and all of his joints pop and crack constantly when he is picked up or lifting him by the ankles while having his diaper changed. He also is not walking yet. His pediatrician has not officially diagnosed him with anything yet, but has sent us to an occupational therapist for the walking delay thinking it may be due to his ligaments and loose joints.
    I am writing this because of your statement that said you think there may be a link between your hypermobility and OI. I have a 1/2 sister who has type I osteogenesis imperfecta! My father is a confirmed carrier of the recessive gene, which means I have a 50/50 chance of being a carrier. Because there is a family history of OI I, like your mother want to fink out if there is something more to his hypermobility issues. My son’s pediatrician is sending him to see a genetic counselor and a pediatric orthopedic doctor. The odds are slim that he has OI, just like the odds of your mother having a child with OI was low according to the genetic counselor. He has not broken any bones (but my sister didn’t until she was about 2 y/o).
    I pray that he does not have OI. My sister is now 15 and is nearly deaf from OI, and also has to wear a back brace 16 hours a day because of her spine curvature. After reading your story, I have a better understanding of what he could me in for if he has hypermobility without OI (and it now doesn’t sound any better). I will let you know if and when we get a diagnosis. Your doctors may be interested if he has the same diagnosis as you since he also has a family history of OI. Maybe there is a link between the two disorders! God bless you!

    Reply

  18. Bethany
    Jun 05, 2011 @ 15:36:44

    I was messing around at school because we were playing a game called mercy where you hold hands with somebody else and twist their wrists until they say mercy and nobody could beat me because my wrists would just keep twisting and I could bend my thumb to my forearm and I showed my cousin yesterday and she has the same thing, hypermobility, do she tested me for my symptoms and we both have the same ones. I tested us on the Beighton scale and we both have 9/9 some of my symptoms are

    Bend fingers back 90 degrees

    Dislocate fingers

    Fold hand in half

    Bend thumb to forearm

    Over extend elbow

    Push arm past vertical

    Put hands flat on floor with knees straight

    Over extend knee

    It also means that I have to do a lot of stretches a lot further than others to feel anything

    I get back and neck pain for no reason and my muscles ache easily after exersize

    P.S.I’m only 12 and my cousin’s 19

    Reply

  19. macoafi
    May 11, 2012 @ 14:07:13

    I’m wondering about the EDS + archery. My brother and I are both pretty hypermobile in a bunch of joints (at some point I’ll go see Dr F…). Most of my issues are in the lower half, while my brother’s someone whose shoulders fall out of socket for no good reason. His doctor told him to exercise his shoulder muscles to prevent dislocations. I have chronic upper back pain, which other bendy friends suspect is my muscles trying to prevent my shoulders from behaving like my brother’s shoulders. I just started doing archery last week, and now I’m wondering if archery will exercise the right muscles for that, and maybe having the muscles actually be stronger from archery might make them hurt less.

    Any ideas?

    Reply

    • archerygirl
      May 11, 2012 @ 14:16:58

      Once you’ve been shooting for a while, you will notice that the muscles in your arms and particularly your upper back and across your shoulders will get stronger. I found that my shoulders felt a lot more comfortable when I was shooting regularly. As it stands currently, I haven’t shot for three years but I have finally got a lead on a local club that I can join in the fall. I notice that when I haven’t done any kind of upper body work then my shoulders feel less stable and they ache a lot.

      In lieu of being able to actually shoot regularly I have bands that I use to exercise as though I’m shooting and there are also some poses from my yoga practice that strengthen the same muscles. It seems to help me. YMMV, but I’d be hopeful that it might help.

      Reply

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