Friday, September 25, 2009

Hypermobility Myths Dispelled

There is so much material out there detailing every possible facet of Hypermobility Syndrome, so why, one may ask, have most Doctor's not heard of it and/or continue to ignore it? There are four major reasons why HMS is not taken seriously, but as you will see, all of these reasons can be easily dismissed. There is no excuse to be ignorant of HMS, it is a real threat affecting the lives of hundreds of thousands of individuals, so its time to do something about it – lets start spreading awareness and hope!

1) Myth - Hypermobility is a benign condition, so there is no incentive to diagnose it.
Truth - When it was first identified in medical literature in the late 1960s, Hypermobility Syndrome was named 'Benign Joint Hypermobility,' because it was first noticed in patients who were 'double-jointed' but otherwise appeared to be perfectly healthy. Numerous studies in more recent years have linked HMS to very serious disorders such as fibromyalgia and osteoarthritis in addition to its threat of debilitating joint pain. Despite all the evidence to the contrary, Hypermobility is still considered as more of an oddity, a parlor trick, than a serious medical condition.
When I was struggling with finding a diagnosis, I visited the Emory Hospital Pain Management Center in Atlanta, GA which is one of the most prestigious pain management centers in the south east. I was seen by Dr. Baumann, who was named one of Atlanta's Top Doctors for pain management in the August, 2001 edition of Atlanta Magazine. When I arrived I had already received a positive diagnosis of hypermobility, but when I mentioned this, the doctor immediately dismissed it. She told me that I had 'myofacial pain syndrome' (which is just a medical descriptive term, rather than diagnosis, of generalized muscle pain). She told me that there was nothing that could be done, and that I would 'just have to learn to deal with my condition, like the way a person with diabetes or obesity manages their condition.' This comment illustrates that even medical professionals at the top of their fields can be ignorant of the fact that Hypermobility severely affects the health and lives of many individuals. If Dr. Baumann, an award winning doctor, is misbelieving of the significance of HMS, what can be expected of the average family doctor, pain management specialist or rheumatologist?

2) Myth - Since Hypermobility Syndrome is a genetic disorder and therefore cannot be ‘cured’ either through surgery or pharmaceutical treatments, there is no money to be made in researching or treating the disorder.
Fact – The misdiagnosis of patients with Hypermobility Syndrome costs hospitals, doctors, and insurance companies countless dollars due to unnecessary tests and being sent to superfluous specialists. Most Hypermobile patients are bounced from doctor to doctor, and specialist to specialist for months, and sometimes years on end in search of relief. In the process they often miss work and have very costly yet unnecessary tests done, draining the money and time from an already overloaded medical system. If doctors and specialists were to diagnose HMS proactively, they could save their patients from pain and save themselves money in the process. In just five minutes, with a simple test of a patient’s flexibility and family as well as personal health histories, a definitive diagnosis can be made without costing a dime!

3) Myth – Hypermobility Syndrome is just a Women’s Issue. These healthy young girls complaining of inexplicable pain just need to toughen up and stop whining!
Truth – while HMS affects 5% of the female population, it affects men as well. Patients should be respected and trusted, it takes courage to ask for help and terrifying to be admonished by the very people who are supposed to help you. Also, another problem is that many girls with Hypermobility perceive the disorder as an asset rather than a liability. Hypermobility causes certain ‘feminine’ body characteristics, such as silky-smooth porcelain skin, elongated and dainty limbs and digits, and tiny wrists and ankles. Also, the natural flexibility that Hypermobility causes makes many girls highly desired by gymnastics, cheerleading, and dancing coaches, activities in which they excel do to the competitive edge their inherent flexibility and range gives them.

4) Myth – Hypermobility is so rare, one could not really be expected to have heard of it, let alone be able to recognize it in others.
Truth – HMS is extremely common, Ehlers-Danlos Syndrome Type III Hypermobility Syndrome alone affects 5% of all women! Almost all of us has at least one ‘double-jointed’ friend who has freaked us out or entertained us with their abnormal flexibility and contortions. Also, many models and actors/actresses are Hypermobile too – two of the affects of the collagen imbalance that causes HMS are silky-smooth skin and long, lean, dainty limbs, which gives them a natural advantage on the red carpet. See the pictures below of celebrities who are hypermobile and may not even know it!

Below - Allison Harvard (Runner-up America's Next Top Model Cycle 12), Jessica Stroup (Actress 90210), Demi Lovato (Actress Camp Rock, Singer), Meaghan Jette-Martin (Actress 10 Things I Hate About You TV), Kevin Jonas (Musician The Jonas Brothers), Taylor Mommsen (Actress Gossip Girl), Mary-Louis Parker (Actress Weeds), Jennette McCurdy (Actress iCarly), Ashley Argota (Actress True Jackson), David Caruso (Actor CSI:Miami)




12 comments:

  1. Hi Chelsea,
    Have you checked out Phillip Chbeeb from last season's So You Think You Can Dance?!!! It's painfully obvious he is extremely hypermobile and is encouraged to continue his "party tricks".
    ~elise

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  2. I've been dealing with debilitating chronic pain for years. Even when I was a kid people kept telling me "it's just growing pains"...except the growing pains never went away. The biggest stigma is that on the outside most people treat you like a normal person, because you look normal. When I was younger I was in Track and Field for 8 years or more and played basketball all the time. It still hurt a lot but I was trying to keep up with my dad who is very physically fit. I'm male and was diagnosed with EDS Type III Hyermobility...in Arizona I've bounced from Doc to Doc and just about all of them said 'they read about EDS in medical school' and that's about it. One of my recent primary care docs said he's been a doc for 35 years and only saw one person who was diagnosed with EDS and it was a young child so there was no comparison for me. My recent physical exam given by Social Security Administration to try and get disability was by a doctor who says he's seen 300,000 patients and never heard of my condition. I was rejected for disability and trying to appeal, they also said my condition is benign...which apparently means I'm not doing to die from it. I've fallen in grocery stories because of hip subluxation/dislocation and people these days don't try and help me up because I'm 34 and look young. Chronic pain and joint instability are the two main issues I'm dealing with and headaches.

    That's the biggest stigma with this condition...on the outside you look fine, but internally your body is waging war against you.
    I've been through the gamut of pain medications and I hate taking them, my latest med is morphine 15mg immediate release. I wish there was another way to get rid of my pain. Massages and hot baths seem to help but not for long, sex also helps to be honest but limited in what I'm able to do. I can't imagine what things will be like when I'm in my 60's if I'm dealing with this stuff already at a young age. Just have to stay positive. Dr Brad Tinkle's book was VERY helpful, I just wish some of my doc's and the SSA would READ it!

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    1. i havent seen a doctor yet,I'm 15,a girl, but according to the research i've been doing on the internet i have the hypermobility syndrome. When i was younger I'd complain to my parents saying i have pains and achings all over my body but they would just say it's growing pain and it's because I'm weak and unfit. Yes,I'm weak but this is a different pain. So by curiosity i started searching on the internet. After a while of searching i found out about this. If i tell them now,they still would not believe me and only say that I'm weak. What do you recommend me to do? And is this a threat to my life?

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    2. I recently asked my doctor about the possibility of disability, and her answer was very discouraging. She basically told me not to waste my time or money because she's never known any patient to receive disability for hypermobility and that my efforts would be better spent on working harder on physical therapy and agreeing to continue trying NSAID's (which never have worked for me). I live in the mountains and loved running and hiking and I even did boxing for a while, my body was always covered in these huge and small bruises everywhere and I kept at it until it just seemed like everything fell apart, I started not being able to sleep because of the pain, feeling weaker and eventually it got to a point where after a day at school carrying around books, sitting in a desk and walking across the campus I ended up just lying on the floor as soon as I got through my door and crying.
      I've since suffered severe anxiety as a result of my limitations causing me fear for my future and immediate situation, my parents have started to accept I need their help, but I'm constantly distressed by needing their help. My shoulder now easily completely dislocates causing my arm to go completely numb and I've gone to University Hospital in Denver to see a GI doctor for 2 procedures because it's now starting to greatly effect my digestive system. They can't do anything for me.
      It's hard because this is not how I pictured my life at this age, and, like you said, considering how I'll feel when I'm 60 just seems daunting, I've already been on a lot of the medications they have my grandma on for her knee replacements.
      For me, it's a lot like a mourning process, I feel robbed of a life, yet I still have a life and I can accomplish something with it, I just don't know what to do yet and am rather paralyzed by my frustrations and fears at this point.

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  3. Great site Chelsea. You're right it goes undiagnosed due to 'growing pains' for kids. Once an adult you might get used to living with the pain. My mother had it, her mother had it, my daughters both have it, I have it and my husband has it. We all know what it's like and someone mentioned what happens when I'm 60. Well I'm 42 and the joint pain gets worse. Its hard to sit down and hard to cross your legs. You cannot claim disability and they think it's in your head. My husband is dealing with heart problems now as his issue is vascular Ehlers and he's past the expected lifespan at 52. We're in Canada and can tell you with the free healthcare here, there are not specialists and not likely to be for a long while.
    Maybe the next generation will get the help we all deserved.

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  4. There is some good-ish news, if you live in the UK. The condition is mentioned in the disabilities ledger which means that you CAN get government benefits for it. The bad news is the extent to which it must effect you. If you can walk, even if it's only about 15-20 feet, WITH help, it means you don't qualify for their terms and aren't disabled enough for the walking part of the criteria. If you can make yourself a cup of tea/coffee and cook a simple meal, you don't qualify there either.
    I first showed symptoms of HMS when I was 14 but, not knowing what it was, I saw a chiropractor and he helped. I actually grew by 2 whole inches after that first treatment! Unfortunately it was a private treatment and so they didn't want to know the cause, just treat the symptoms. I now know better, do NOT treat HMS with chiropractic. It tends to worsen the condition in the long run. It frequently manifests around the start of puberty or early 20's (There's some interesting thesis that the body regenerates in seven year cycles. Apparently HMS has read them and believes it!)
    When I first got ill, I was told it was psychological. In fact, at one point I was actually called a liar outright because all I could do was explain how the pain felt and where it was! After that they refused to do much else, except for pain killers (and even that was a fight!). It was 6 years later, after changing doctors, that I found out what I had. Even then, I was told "Well, there's no cure or any treatment really, physio may help..." (getting there did more damage than being there could help!) "Especially now the condition has been left for so long." (Argh!) I've no idea what form of HMS I have. I have very pale skin which seems to be less wrinkled than it should. My joints are hypermobile pretty much throughout my body. (The only ones that could be tested and seemed not to be were my Achilles Tendon. Which are too tight. As a child my feet would be bound into set casts every night to try and stretch them. The Universe's little joke, I suppose.) Reading your list of primary and secondary symptoms here http://hypermobilityhope.blogspot.co.uk/p/what-is-hms.html I have all of the primary symptoms. My husband says I can suffer up to six or seven dislocations a day because people just wouldn't believe the truth. Lifting a pillow can be sufficient to cause dislocation, although the surrounding muscle is very strong.
    Of the Secondary Symptoms there are also quite a few I have. Various GI problems, irregular periods, occasional incontinence, my son was born prematurely and I have been unable to carry again. I have suffered pleurisy, which I was told was associated with the HMS, very fine veins which are hard to find and which collapse when the needle is inserted. I have slow healing wounds, atrophic and keloid scarring and bad stretch marks, even though, oddly, I almost NEVER bruise. I also have the dizziness, lightheadedness and fainting (this is from sitting upright, in my wheelchair, unassisted. I can't stand up any more.) I have had my blurred vision checked to be sure it isn't anything serious. I suffer from some mental disorders, ranging from anxiety and panic attacks and have to take medication for bipolar depression. I also have chronic fatigue (which my family refused to believe) AND insomnia! Someone, somewhere is definitely having a good laugh about that one! I've also started having fits this year and severe chest pain. On the plus side, this means I have finally been referred to another specialist who works with a local hospital which is only the UK's leading hospital in this sort of condition! Yet it's taken 7 years for someone to put two and two together and refer me there. So hopefully thinks are looking up! So anyway, that's me, now you know pretty much everything about me, at least illness wise. Phew!

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    1. Hi, having read your account I find multiple striking similarities to you. I was wondering if you could tell me which UK hospital you mention your new specialist works with please? I live in South Wales and am yet to find anywhere that can really help me, I visited a consultant in the Bath Hypermobility Clinic last year. However, I found the consultant to be highly inappropriate, argumentative, chauvinistic, egotistical and among many other things more interested in my father's background in the RAF than anything to do with my condition. I'm desperate to find someone who can help me get some kind of life back. Just before I turned 22 HMS hit hard and turned my life upside down, at the time I didn't know what it was. I was forced to withdraw from my final year of University so have huge debt and no qualification, I lost my job, 98% of my "friends" disappeared, I lost the ability to look after myself in even the most basic of ways and so many other things within the space of just 1 month. I'm coming up to 24 now and I've realised that things just get worse, I'm desperate now more than ever to find a specialist to take me seriously and who can give me the right advise and tools to move forward.

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  5. I'm recently diagnosed, long-time sufferer. I ALSO had the most horrible "growing pains" as a kid, and would regularly collapse in shopping malls and grocery stores, and once at school due to my knee giving out. My family (unaware of the cause) used to laugh at the way I ran during soccer practice and games. I "ran like an ostrich" they said, kicking my legs out in weird ways (which I now understand is probably due to a combination of my terrible proprioception and lax joints). There are so many ways in which I've lived around this condition, thinking it was just some idiosyncrasy of mine - I can't run on tredmills, but ellipticals are ok; no bicycles, but recumbant can be ok sometimes; sleep on my side, left knee (the one that gives out) slightly bent; carry as few books as possible to school, take the elevators (even up one flight, even when people call me lazy for it). I get tired halfway through doing laundry and can barely walk the next day after all that bending and going up and down stairs. I'm basically trapped in my second floor bedroom and never go outside anymore (which I guess is good for my insanely pale, transparent skin). I want so badly to get in shape because I know the extra weight I've gained isn't helping (although even when I was 105lbs I wasn't much better off), but after just 15 minutes on an elliptical, it's like someone took a baseball bat to me knee. I don't know how much of my pain is real or just anticipation, and sometimes I want to believe it really is psychosomatic like doctors sometimes insist. I'm so tired of feeling like I'm 80 years old. I am 25 fucking years old, I'm tired of having to weigh the dangers of going on a jog or skating at a graduation party. I'm tired of having weird rashes that seem to be caused by nothing, endless sinus infections, constipation and hemorrhoids - another thing that my doctor insists I don't have, but I definitely do.

    I'm so desperate for someone to take me seriously, I may just move to England. I'm seeing my doctor again Thursday, maybe my hysterical crying and knee that won't straighten will convince him I need more than a half-hearted referral to a physical therapist.

    Sorry for that rant. I'm having kind of a rough day and just really needed to get that out.

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  6. My daughter started having joint pains in her feet at the age of 2yrs and 2 months. She couldn't, at that age exactly tell me where the pain were and what it felt like. I took her to the paediatrician which did blood tests and diagnosed her with rheumatoid arthritis. We were referred to a rheumatologist, who couldn't find anything wrong with her. I left it there and decided to focus on her eating habits and trying to make it better that way. It went away for a few months, but then it started again. Last year November I took her to another paediatrician for a second opinion. To my horror she was miss-diagnosed the first time around. The blood tests and x-rays didn't show anything, so we were referred to a specialist that deals with specialised sonars and scans. They then diagnosed her with HMS (being the youngest patient they have diagnosed with it). We went on to go to a physiotherapist, who worked out an exercise plan for her, including fun games to play.

    My daughter is a little better since we started the exercises and does not cry every night anymore. For about 9 months I gave her pain medication every night. She is off of it now and when she has discomfort I rub her feet with heat rub.

    I pray every day that my baby (now almost 4 years old) will lead a normal life. It was horrible to see her in so much pain every day and I am relieved that some of the discomfort has subsided.

    To all of you out there with HMS - I've read every single post and my heart bleeds for you. It is horrible to go through it and all the tests were not very nice for my angel to go through. Keep the faith. I will definitely.

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    1. You should be proud of yourself for being able to really listen to your child and believe her. So many people ignore the little ones... bless you.

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  7. Has anyone had prolotherapy? My daughter was diagnosed with HMS about 6 yrs ago, shes 39 now. She had prolo about 4 yrs ago and did help. She was getting better with physiotherapy, pilates and daily exercises. She got married 3 yrs ago and had a little girl 2 yrs ago, she was borne by Caesarean section and because she couldn't do exercises this has made her symptoms worse.
    She was anorexic for about 6 yrs during her teens and wonder if this has had something to do with her, She was nevergood at sports, but didn't have any symptoms until her 30s. I also wonder if in the near future stem cell therapy could be a treatment hor HMS.

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