Please Help- Muscles are all going,,:(
 

I am in such despair...as I have written before my muscles are all atrophying. Arms. legs and now my back. I just got back from a party and had such trouble sitting in a chair. I had to use 2 chairs and a pillow and I was still in pain...I have tried all the muscle relaxers and they don't work. I don't see how I can go on like this..my arms are getting tired just typing this! If anyone has any suggestions it would be so appreciated.

Thanks

Debbie

Stop going to parties ?

I hope that you know, that was just in jest.....you should be able to have a life without feeling miserable !

I'm coming up on a similar issue. My mom, sister, and I are heading to Foxwoods Casino tomorrow for an overnight. I love to gamble. I love to spend time with mom and sis......yet I can predict in advance that I will have to double or triple up on my pain meds and I will still be in horrible pain. The walking, using my arms to press slots or play cards, sitting in chairs that don't offer full neck and arm support will all take their inevitable toll.

It's awful to have to pay the pain price for trying to go out and have a little fun.....even though with arranging your chairs and pillows, you still didn't get the true party experience :(

Maybe a nice bath with epsom salts ?

I am sorry. I can relate to the limits,pain,and drain. Takes such a toll. For the atrophy are you able to do any type of exercise for these areas? For myself at the start of this I was in bed full days. I went to Cleveland Clinic and they were concerned about atrophy and so I had to start moving. Now of course this is a catch 22 cause the pain is out of control. So I would start with 5 minutes and each week even add 1 min extra. It would allow my body to adjust to a degree. I know too when I am in a lot of pain I do thing to protect the rsd area at the time or comfort it as much as I can. At the time I just have to do what I can to get by the pain is so bad. I do feel though in the long run it does not help me. Now everyone is different of course but do you feel the pillow etc is helping? When my leg gets so bad I have tried putting a pillow under but it flares worse. I don't like anything touching me at all extra. I wish I had more answers I am in a flare that won't quit too.
On a side note I give you so much credit for going to the party. I have become so isolated. Feel better

Deb,

My heart really hurts for you. I have read all of you post as they come up and you are obviously very on top of you care, have some great doctors but something is not working. Atrophy means to me the muscles are not there anymore, so you would need to work those muscles to get it back. I can relate to the arms I have the same problem but it's easiers to type then to write with a pen. Have you ever thought of seeing a physicatrist? A pyhsicatrist is a ortho. doctor that deals with non-surgerical treatments. I will check the spelling and get a name and more of a defination after I post.

Gabbycakes

The spelling is "Physiatry". There's a doctor out of HSS Dr. Rock Positano. Check the site out you never know.

TY
 

Thanks for your responses...I do exercise..I swim about 3 x a week. But DESPITE exercising they are still getting weak. and not just my biceps but my whole arm (on both sides) are losing the padding so it is just bone and skin (if that make sense). If I hold my arm up I can see the skin drooping a little. Now the padding is leaving my back and I am getting stiffer by the day. I just feel like giving up. I have tried everything but a pump-and now I am thinking of that before giving up...

Thanks for your replies...

Debbie

Dear Debbie -

This sounds awful. Don't know if this will help, but I just came across an abstact you might want to share with your internist:

Mitochondrial dysfunction in muscle tissue of complex regional pain syndrome type I patients, Tan EC, Janssen AJ, Roestenberg P, van den Heuvel LP, Goris RJ, Rodenburg RJ, Eur J Pain. 2011 Jan 22. [Epub ahead of print]

Departments of Surgery, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands.

Abstract
Reactive oxygen species (ROS) are known to be involved in the pathophysiology of complex regional pain syndrome type I (CRPS I). Since the mitochondrial respiratory chain is a major source of ROS, we hypothesized that mitochondria play a role in the pathophysiology of CRPS I. The hypothesis was tested by studying mitochondrial energy metabolism in muscle tissue from amputated limbs of CRPS I patients. We observed that mitochondria obtained from CRPS I muscle tissue displayed reduced mitochondrial ATP production and substrate oxidation rates in comparison to control muscle tissue. Moreover, we observed reactive oxygen species evoked damage to mitochondrial proteins and reduced MnSOD levels. It remains to be established if the mitochondrial dysfunction that is apparent at the end-stage of CRPS I is also present in earlier stages of the disease, or are secondary to CRPS I. The observation of a reduced mitochondrial energy production combined with reactive oxygen species induced damage in muscle tissue from CRPS I patients warrants further studies into the involvement of mitochondrial dysfunctioning in the pathophysiology of CRPS I.

PMID: 21262583 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/21262583

Good luck and :grouphug:
Mike

Thanks Mike
 

Thanks Mike,

But what can I do with this information

Debbie

There's no spinal or direct nerve issues that would cause the wasting?
Have you had a MRI recently just to check for any new things?

Your drs don't have any idea on this?
could it be a blood flow issue? can someone give you massages regularly to keep blood flowing?
I don't know how sensitive to touch you are though...

I wonder if something like a Chi machine would be of help for you or if it would be too painful.

Here's the Amazon link if you want to read more about them- when you select one - you can scroll down for ratings & reviews.
http://www.amazon.com/s/ref=nb_sb_ss...x=chi+machines

epinions -
http://www.epinions.com/well-Persona...~chi%20machine

Debbie -

I'll try to get you the full article, then you forward it to your internist (cc to the pain doctor) telling him or her that a friend just past this on to you and you were wondering if it had anything to do with your muscle atrophy. (I'll try to be more helpful one I've read it myself.) Then you set an appointment for a week thereafter, describe what you are going through and ask if the article suggests any possible treatments to him or her: assuming your internist is a smart person you trust.

Mike

I have this situation going on also. I was told early on that RSD is a 'Use it or Lose it' affliction, which as has been said, is a double edged sword.
You (We) need to move! Start by walking, at least around a block, and build up to more! Start at whatever level doesn't hurt too much, and build up from there. If you can get to a gym, or a warm pool that's the best! But, Don't just sit and watch tv, or be at the computer. You've got to use it!
As I said, I'm in the same situation after 27 yrs of this, (with TOS).
The weather is so awful, it's impossible but, sometimes, getting out and walking can do a lot for your mood / depression too!
(I'm not suggesting a walk to the bar) Hah!

But, I hope you can move around. A walk around the block will get your blood circulating, your lungs working, and will help with chores like doing the wash, vacuming etc.

Be Well!

p

Maybe some gentle yoga style moves or even ti chi?? - you can find samples or types on you tube & Google videos - for beginners, seniors or arthritis would be the easiest to try.

I read somewhere that swimming is good for fluidity & movement -and if you can't bear weight on your legs or joints, but because the water buoys you up some of the weight bearing & muscle fitness benefits are not there. So you'd have to do more swimming to get equal benefits.

Hi Debbie,
 

I don't know if your insurance would pay for PT but I do agree with Jo and Daniella that you do need exercise and massages.

I spent 4 years in PT for the RSD, Fibro, TOS, and other things and when I finally got the right therapist, they helped me a lot. They didn't make me do any lifting or tugging or treadmills. They did massages and stretched my fingers and hands and they did teach me some exercise to do at home. I am doing better these days. I have my setbacks but I do consider that it's been like a miracle that I found the right help in the right places.

Find you some exercises to do on line or as I said a PT. I will say I can't join gyms due to the machinery they have although I'd love to. Now I do some exercises at home and I am able to get out a lot more. You have got to get some movement going in your body by loosening things up.

I hope you find some good help soon. Party sounds like fun, I had a great Christmas even though I was sick and this weekend I have to drive 150 miles one way to a funeral for someone we spent Christmas with. I dread the trip and I cry for the loss of a good person.

Feel better soon.
Ada

TY
 

Thanks Mike...Any translation would be appreciated!

TY
 

Thanks for all your replies,, I do go swimming 3x weekly and massage 1-2x weekly. My muscles are atrophying despite using then and I think the only way it will stop is by breaking the cycle...I just wish we knew how to do that!!

Walking is awesome...you may need to wait for the ice to melt! But really, I think my daily walks with my dog have helped keep me sane.

Good luck...xoxo. Sandy

Oh, Sandy. I so miss walking. That was my stress outlet. I would walk it off. No walking now. I was just wondering today, how to replace that. I guess I've switched to more meditating on scripture, but there are some days when I just want to feel the physical release from getting some exercise. Soon I hope doc will let me do water exercise. For now he is against any unnecessary movement. He is hoping this will reduce the inflammation around the nerve and reverse the effects, but I kinda think we are past that now. Enjoy your walks for both of us. No more Smokey Mt Cades Cove walks for me, no trail hiking. I'm making new choices for escape.

pat e

walking
 

I can only walk about 1/2 a block before my foot and leg give out :(. The only physical exercise I can still do is swim and that is slowly fading with my back muscles going and my left leg muscles too.

Thanks for the suggestion though!

Debbie

so sorry guys....RSD is an awful condition that affects each of us so differently. Ugh....

Please take care, Sandy

here's the article
 

It was just pointed out to me that Mitochondrial dysfunction in muscle tissue of complex regional pain syndrome type I patients, Tan EC, Janssen AJ, Roestenberg P, van den Heuvel LP, Goris RJ, Rodenburg RJ, Eur J Pain 2011 Jan 22. [Epub ahead of print], is already in the online RSDSA library @ http://www.rsds.org/2/library/articl...0Pain_2011.pdf

The significance of the article is that it provides evidence that there is apparently more to muscle atrophy in CRPS than "neurogenic-vasoconstriction" (constriction of blood vessels due to the nerves that control the blood vessel's "tone"). Specifically, there is a metabolic disorder in play.

This disease just keeps on getting more interesting all the time, doesn't it?

Mike