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Ehlers-Danlos Syndrome User Group
damage from crutches
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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damage from crutches

I am diagnosed with MS and hypermobility syndrome, and working on an official EDS diagnosis.  I recently had an MS flare that is affecting my walking. I have been using forearm crutches to get around, but they are definitely causing problems and pain in my hands, wrists, elbows, and shoulders. Because of this I have been using my wheelchair more and more. I was just wondering if anyone had any info or experience regarding this situation. I should add that I am a professional violinist, so protecting my arms is vital. I guess I'm just looking for reassurance that I'm not just being a wimp about the crutches :-)
9 Comments
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620923_tn?1416285879

Hi and welcome to the EDS group.

I am a former violin player..from age 7 or 8 till approx 13 or 14...I had issues in 3 and 4th position getting my fingers on the frets correctly...3 yrs  ago I was dx'd with Chiari malformation and EDS...and after learning more about EDS I understand the issues I had with my fingering and I am amazed at ur ability to play professionally.

As got the crutches, I have not used them long term only after surgery. but I have used a cane for over 10 yrs and my left wrist is deformed as a result and I am convinced it is the EDS that caused it...the wrist still works fine, just looks wonky.

Not sure if that helps : )

  "selma"
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1748105_tn?1314476806
Thank you for your response. Actually, it's believed that Paganini had eds and that this aided his playing, so it can go either way. I guess my biggest concerc, sadly, is trying to explain to explain my situation to the doctors, as in the past I have had them discourage the use of the wheelchair, but this was before the hms dx. It seems to me that crutches and canes could be risky for weak joints, and your answer seems to agree with that!

Bright Blessings,
April
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620923_tn?1416285879

  AS I mentioned I had no idea I had this condition b4 the use of the cane and the "damage" was already done and my wrist moves fine, doesn't hurt...so I keep using the cane as I still need it for  longer walks and uneven ground.

As for my fingering, my joints collapse... I do  or can not keep them in the right position...I actually noticed it playing the piano....the harder I press down, the more the joint falls...so I am sure this was also my issue playing the guitar....except I kept using my violin fingering...lmao

I will blame it on my chiari brain and leave it at that.

  Oh and to Paganini, I am sure EDS can help playing when it allows u to stretch the fingers in ways others may not be able to do...lucky for him, his joints did not collapse on him like mine....but I can see where it can have it 's advantages.

  "selma"
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1748105_tn?1314476806
I avoid my fourth finger as much as possible because the joint collapses, so if at all possible I shift to avoid it or, sin of sins, play an open string :-o Although my joints haven't prevented my playing, they have definitely not helped me the way they helped Paganini ;-)

When I first started using canes and crutches I was only diagnosed with MS, the hms was only diagnosed in the past year and this is my first relapse since then. I always knew using canes or crutches caused me discomfort, but I'm now more aware of needing to protect my joints.
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620923_tn?1416285879

  May I ask how ur MS was dx'd?....the symptoms u have with MS r sooooo similar to what I have with Chiari I wondered.

  Now that I know what is going on, I might have been able to do the same, and in many cases I also played an open string to avoid the 4th finger as well....but again I had no idea about EDS or what was going on, just that I was having issues and my teacher kept yelling at me....it makes sense now...hindsight is great!!

  "selma"
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1748105_tn?1314476806
My MS was diagnosed because of optic neuritis. They did an MRI and it was full of lesions. Ironically, I have wondered if I have an undiagnosed chiari malformation :-\ Sometimes it can be so hard trying to figure out what comes from what. In my case they assume everything comes from the MS. If you don't mind, what are your chiari symptoms?

I have had teachers yell about it too. One in particular used to go into fits regularly because the middle joint on the pinky of my bow hand would collapse. She would get so upset that I wouldn't be surprised if she had to seek therapy over the trauma, LOL.
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620923_tn?1416285879

  I had all the typical symptoms...from drop attacks, dizzy spells, balance issues,stiff neck...vertigo,vision issues, depth perception problems...memory issues...heart palps.....

And I am sure there is more...but I went to so many drs over the yrs and never got a dx, when I had a drop attack in May of '07...that fall resulted in a injuries that required surgery...I had surgery on my ankle in Aug of "07 and then my knee in Nov of '07 ...my knee surgeon suspected lupus and sent me to a rheumatoid dr for testing and they tested for MS, lymes , lupus which I am always borderline for, but they did find the chiari.I got the dx in Feb '08.


My violin teacher would hit me with the bow....I had no idea what the problem was and thought I was doing it right, I was trying neway....lol...same with my teacher , he would get so mad, and I was so confused....oh well, not much I could do, but a brace of some kind under the knuckles would keep them from falling...is there such a device?...hmmmm

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1748105_tn?1314476806
I just let it collapse. After all this time and all the angry teachers it really hasn't been the end of the world. Its only my pinkies that do it, usually. So I avoid them when I can, and when I can't it collapses. Its always collapsed on my bow hand if I use any pressure at all, but I have yet to see it make the difference some of my teachers insisted it would. Not surprisingly, the teachers who focused the most on it were the ones who taught me the least, overall. ;-) A brace might be a thought, but might compromise flexibility and speed? Hmm, its something to think about though.
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620923_tn?1416285879

  I am just glad I know understand what my issues were, I thought at the time I was not able to understand how to play those positions, and was so frustrated...now that I know it was more than me understanding what I was playing it was my body not allowing me to do certain things.....

I am so glad u were able to enjoy playing.....do u know who Scarlet Riveria is? I loved listening to her in the '70's...and a friend of mine Ted Falcon plays electric violin too, and I turned him on to her as well, he made copies of my old albums and still listens to them.He lives in Brazil now, ...and he is one talented guy.

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