Hi chick, im thinking selma has a wealth of knowledge on this as she thinks I may have symptoms of this and or eds it very closely linked and selma has done lots of research into it as she has eds,tc and cm they all link and cross over one another!!!! PM selma im sure she will be able to help!!!!!
I've recently been diagnosed with this as well and you may find www.hms.org.uk a useful
website. Symptoms & severity of seem to vary and there seems to be a lack of research in
this area and it frequently goes undiagnosed.
It was only picked up for me when I consulted my dr about jaw pain fr grinding my teeth, apparently a symptom of tmjd, which is common with hms.
It is worth raising with your dr although you may not be lucky enough to find one familiar with the condition.
Also worth baring in mind is the fact that it is hereditary
Well through my rounds with rehab clinic it seems that they feel that I do fit in the category of having "Benign Hypermobility Disorder". Does anyone know if that is the same thing? Funny b/c I went to a Rheumy about 7 months ago who said I didn't fit the criteria yet she never even looked at the ROM of my joints!!
Apparently, a lot of my joint pain can be related to the fact that my joints are moving past the point they are supposed to thereby injuring my muscles, tendons and ligaments. Do you have a lot of joint pain with this?
Definitely a topic that we should all dig into a little deeper.
I was diagnosed with BJHS one year ago and it's the best thing that's happened to me in a long time. Before I knew what was really happening to me I would workout and suffer the next day...now scared I would back off. This exercise yo-yoing did nothing for me mentally or physically because I truely believed I could damage my body by exercising. Luckily I had been to a Rheumatologist in the past and when I was discouraged about my myofascial pain syndrome from my back doctor; visited our Rheumatology office again. This doctor tested me for everything and all my bloodwork was great. However, I figured I would not get an answer for these aches and pains that make me give up on exercising. When I went in to hear my bloodwork results, my Rhuemmy said everything looked good but I know what you got! You will one day need knees and hip replaced if you don't protect them now. And as he said these things he grapped my knees and grabbed my hips and made them hurt. They will wear out unless you strenghten the muscles around them and learn how to articulate. I was amazed to learn he knew why I have pain and will always have pain. This info. and his attitude released me from being scared to exercise; the pain may hurt but I can learn to control my movements. And if I do hurt myself he is there to fix it and actually did give me a shot in my elbow. My elbow still hurts but not as bad and I took his advice and started lifting weight to stablize the joint area. I HAVE FREEDOM now with confidence and can continue getting in better shape. Also, for you bendies like me with low back pain (I have DDD in S1, L5, L4 with a buldging disc in S1-L5 and a ruptured disc in L5-L4 with hemangiomata & sciatica) use an inversion table. I have the assurance I can take my prednisolone and get a trigger point injection and/or a cortisone shot. I no longer take neurontin, klonopin, and nsaids because I am back in shape and taken it easy. I can now ignore the pain and push on :)
Best Advice as a patient, nurse, workout addic is:
Be careful with your joints- strengthen them with weights and PILATES. PILATES' BENDIES BEST FRIEND.
I have the PlilatesPerformer from OVC, I have orthotics made for my walking shoes, and I lift light weights .....I have lost 50lbs and looking good :) yee haw...such a great motivator and now I know I can continue forever.
BIGGEST BLESSING FOR MY BACK AND NUEROPATHY: INVERSION TABLE 3x's/day
What you describe is what I experience everyday...ever since the Chiari symptoms began I have been scared to exercise b/c it seemed to make everything worse. Like you said, every time I do do something, I suffer for days afterward. Just a few weeks ago, I went up the mountain so the kids could go tobogganing and I was walking in deep snow. I realized afterward that the uneven surface and repeatedly getting my foot stuck in deep snow...was overextending my joints. The pain for days after was unreal and very frustrating. I have very flexible joints especially in my knees, ankles and hips. My gait is very affected..though I don't know whether that is more from the joint weakness or still nerve damage (or cerebellum damage- who knows?)
I have heard Dr's throw around the possibility of me having a "benign hypermobility disorder" but it hasn't been actually dx'd. Good news is that I am working now with a PT in neuro-rehab and he has been doing low non-stressing joint activities in which I am starting to see a result in my gait. But still...I have to deal with the constant joint pain.
Thanks for the recommendation of pilates..I have thought about trying it for awhile but wasn't sure if it would be good or bad for me.
Did the major joint issues you have start after you had the Chiari symptoms? I am asking this b/c although I was always flexible, I never had the joint pain before like I do now.
Also, what exactly do you do (or what is) an inversion table? I am wondering if this would be something I could ask about doing.
I have pain in my back all the time and I feel it is b/c everything keeps slipping out of place, I can actually feel it sometimes.
I have also been told that I need to strengthen the ligaments, tendons, muscles around my joints to protect it. I get painful muscle swelling from it too when I stress a joint, the muscle inflames and I can feel it roll under my skin.
Sorry this is a bit jumbled but I am excited about the info you can give me:)
The joint issues were first (chiropractor at age 3) and as I aged I started becoming tender in my skin and bones in certain areas of my body (usually from dance, gymnastics, HS cheerleading) then during pregnancy the allergies kicked in (I have weekly allergy shots for food and environmental allergies) and following the pregnancies did I develope OA in my lower back and fingers.
The Inversion Table (looke up Teeter Inversion table online) pulls my back into alignment and I can safely do upside down lunges and situps as well. I love it...it feels so good to snap, crackle and pop :) My doctors (ALL of them) like the inversion therapy.
Keep exercising...when I got the dx I was encouraged by my doctor's to go ahead and push through the pain b/c my muscles needed to be strengthed and just don't overpronate. I found that NO PAIN; NO GAIN is true for me. I can now bend over and pick something up w/o pain or dizziness. I did give my treadmill away b/c of the way my feet strike- it aggrevates the OA in my back....so, you will learn what works for you.
You have to try many things to find the right combo...even personality comes into play.....but most importantly is the professional reassurance that you can and should push yourself into an exercise regimen. Ask your doctor about that...just don't overpronate but stretch and strenghten those muscles. Knowing I wasn't going to destroy my body is what got me to the exercise regimen I'm in today.
Something for inspiration:
My Rheumatologist weighed me a couple of days ago and said I'm 12 lbs. lighter; the woody induration on my right leg is slight and he said ALL of that was a direct result of losing weight; not the Inversion table, so you don't even need any apparatuses to get you started. However; I strongly recommend the Inversion table b/c of the "instant" pressure release after workouts. Ahhhhhhhhhhhhhh :)
Oh, a word of caution about the Inversion table...nothing bad but if you're to sciatica then you do not want to forcefully pull on your lower back b/c it has now been shown that ppl with hypermobile joints can actually cause neuropathies ie. scaitica and cts due to positioning. I no longer pull myself for a forceful pop when hanging upside down but now just relax, deep breath until I get that lovely pop. Did I mention it has helped me with syncope? It's either weightloss, inversion, or both but I don't hardly experience syncope anymore; only if I jump up too quickly.
I feel your pain, and excitement! I find that balance with exercise and rest is SUPER important. If you go to www.*** it has been the most helpful site for me thus far. Also, ongoing physio, and an SI belt have been my life savers! hope u are well :)
That's interesting, I have been told to get a SI belt too and I haven't got around to it yet. You find that it really helps?? I think I better get going on getting one. I am hoping that it will help my gait as well.
Sacroiliac belt, basically it is a belt that you tighten around your hip area to keep everything stable. For hip weakness, it provides strength that area. M problem is that once I apply it, I will have to walk differently and strengthen muscles that I haven't been using...
I am also newly dignosed with joint hypermobility syndrome. I think it depends where abouts you live to what the doctor calls it to be honest...thas what im finding anyway! I found my information on the below link take a look:
and this amazing book:
A Guide to Living with Hypermobility Syndrome
Hope this helps and please feel free if you need any info, or advice help with coping or just a chat...i will be glad to hear from you!
Just a quick message, i have found that with HMS Pilates and swimming is the best form of exercise but as and when you can~ try not to pressure yourself to do it as from day to day your pain and the serverity of it may change. If you do go then make sure you tell the instructor and make sure she is awear that, yes you are very flexible but that doesnt mean you should push it and it does mean you hurt! Know your limitations and listen to your body, if its hurting rest. Rest unfortunately as annoying as it may be, is the best...REST IS BEST...
POST BACK TO ME IF YOU NEED ANYTHING OR JUST A CHAT ALWAYS HAPPY YO CHAT AND HELP IF POSS XX
P.S I wear a belt daily, it has metal bones around the back of it so it really does support you and help with the posture. My main pain is around my lower back and hip area and i find it really helps when i need that lil extra support. Also knee supports i wear as my knees really swell up if i do anything. Hope that helps ;) xx
Thanks Selma since it is in the chiari forum I was concerned...as you know I have chiari and EDS and was told traction is a no. I would not want a newbie who had not been told to get on the table and worsen the situation. It is scary since the 2 are linked at times.
I hear u and too many times people look up old threads and post regardless what forum it is on and post not really being aware they r posting in the chiari forum nor do they take into account that we may not be able to take their advice bcuz they do not have it and r not giving advice for those with chiari.
We have to read these threads and be mindful of who is posting.,
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