4 Joint Replacements later .. I have HMS

[Fuzzy]

Hi! At 48 had both hips replaced, at 51 both knees replaced (end of 2008). Well I'm still disabled after the knee surgeries and with newly experienced body pain almost everywhere....yikes....scared and befuddled -- all RA and autoimmune things ruled out .. I go to my second Rheumatologist in 2 months and this new one thinks I may have HMS...she gave me stuff to read and oh my! I have to say that it makes sense 100%. I went through my entire medical history and did an hours long research binge on it and yes this all makes sense. I will see her again in 2 weeks for even fancier lab test results and some results of hand, wrist, finger films. But I have to say that this makes so much sense .... to have the joints fail because of joint laxity, and all my other symptoms additionally. I was so scared being cut up to pieces and new bionics and no reason for it all. Other than OA. Now I believe I have the answers -- also answers as to why the rest of me hurts......

So while there is no magic cure...and I'm still hurting and don't know what to do at this point to make a living again......I'm delighted that there seems to be a logical explanation and course of events that has me where I am today. I hope to now get doc's input into her ideas for exercise, meds etc... so I can hopefully avoid further joint replacment. Bone scan shows my back and shoulders are lighting up -- probably more degenerative changes...

But just wanted to post to share -- maybe this will resonate with someone and they can get checked for hypermobile joints and the concurring syndrome with all it's crazy fatigue, pain, depression relatiing etc....

Thanks!

[Silkncardcrafts]

Hi Fuzzy,

I am so sorry to hear that it has taken so long to diagnose your hypermobility syndrome.

When I was referred to my knee surgeon more than 15 years ago I was diagnosed with it straight away. They don't need to do any fancy blood tests to confirm this condition. I have been seeing a great sports physician for about 7 years now and understands hypermobility really well. In the US I think they are often called physiatrists. I am a bit sceptical about rheumatologists with this condition as many just want to medicate patients, which is not the whole picture. Doing regular gentle exercise is really important with this condition.

Surgery can work for hypermobility syndrome sufferers if the surgeon understands the condition. Often it means not progressing the rehab too quickly.

I have had 5 operations on my left knee, 2 on my right, 1 on each shoulder and 2 on my left ankle due to instability. My knees have taken a lot longer to fix, but at least I know I have the right people treating me.

It has taken a while to find the right things to treat my condition, but found that doing regular gentle exercise is essential to manage the pain. I do regular gym sessions, clinical pilates, walking and go to a hydro pool. I find that clinical pilates has been the best for me. My gym program basically focuses on my legs as I am still recovering from a shoulder operation and car accident that I had last year. I also regularly take anti-inflammatories and Panadol Osteo which really helps.

Hope this gives some food for thought.

I am presently thinking about writing a book about the condition as there still isn't a lot of information out there.

[Fuzzy]

That would be amazing if you wrote a book.........sometimes I think I need to search for another answer for this rather sudden crippling condition. I was doing relatively well prior to the knee replacements (and after the hip replacements) -- then after the knees.........every single joint/muscle is painful. I can no longer work. I tried but they let me go because I couldn't keep up ....... What a depressing lonely thing to endure. I will go to a major university hospital and see their neurology dept. and also their genetics clinic to make sure no one missed anything......but HMS might be exactly the problem ........ Please do write a book......I'd be happy to contribute!

[Silkncardcrafts]

Hi Fuzzy,

That is very unfortunate that you can't work. I am able to work, but only part-time. My situation has been compounded by two car accidents and has taken a lot longer to recover because of my hypermobility. I can no longer do a desk job as I am in too much pain. So, I work as an Allied Health Assistant. I plan to do further study to become a pilates instructor and also do physiotherapy or medicine. I really want to help people with hypermobility, especially patella instability.

The key with hypermobility is to do regular exercise. It is a matter of finding a form of exercise which is pain free. For me I have found going to a hydrotherapy pool, pilates, walking and going to the gym to be really good forms of exercise. I often have to modify my exercise depending on how I am. I have a dog called Rusty and try walking him every few days. I can't go longer than about 30 minutes as I get a lot of pain in my right knee. Am waiting to see my OS next Monday to talk about having a trochleoplasty on my right knee. Hopefully then the pain will be a lot better and will be able to do more.

I see a psychologist that specialises in hypermobility which is just fantastic. She has been giving me strategies to try and pace myself better and conserve energy. It has helped me a lot.

Totally agree with you, this condition really sucks. Many of my Mum's cousins children have it, but I seem to be the one hardest hit by it. So far I have surgery on both knees, both shoulders and my left ankle. My hips seems to be ok, which is good.

I really want to write a book about it with some case studies and some text written by my treating practitioners.

Have you got an email address I could email you with some ideas about my book ?

[watersci]

Thanks for sharing your story. I am 99% sure I have this-- now I need to find a specialist. I live in San Francisco area... does anyone know a good specialist for this in my area?