As I have written before I am having full body muscle wasting,,,lost 10 lbs in the last few months and getting weaker each day. Losing my ability to get up,,I think this is being caused by my small fiber neuropathy ,,,, any thought on putting on muscle mass? I do water exs about 3-4 xs a week, I'm so scared of withering away!

Deb

I'm so sorry Deb! I don't have any advice unfortunately since it's not a problem I have had yet...but I hope some people chime in with some experience on this. What does your doctor say about this?

Very scary. Take care of yourself.

I am so sorry Deb! I have muscle wasting in my RSD areas, but not the whole body. Have your drs looked into other conditions other then RSD?

Debbie,
I too have muscle wasting in my CRPS left leg. I also have bone demineralization. Mine is from having CRPS for years before it was diagnosed. Without treatment, I got into the habit of not using my leg because of the pain. I have Dystonia and spasticity. Literally, the muscle spasims caused permanent contracture. The CRPS has now spread to my pelvis on down both legs. I do not have full body CRPS ... yet. I am sorry to hear that yours has spread that far.

I dont have the answer. You do need to contact your doctor and physical therapist. If CRPS is caught early, physical therapy can help. Regardless, it is important that you keep trying to use your muscles. Personally I opt for aquatic therapy too because it allows you to use your muscles without over stressing them. I can walk in the pool; outside of the pool I usually use a wheelchair. The only other thing I can think of is perhaps you need to add more protein to your diet. Of course, I am pulling at strings here.

I hope you find the answer and quickly. Please take care of yourself.

I have muscle wasting, but only on my RSD limb. It is getting more noticeable. I'm sorry this is happening to you. Hopefully your doctor will have some answers.

Thanks for your responses,,,the thing is no doc has. Been able to figure out why this is happening, I have had every tx and blood test imaginable.. Iif no one can get to the bottom of this I am doomed!..I have an appointment w dr chopra the end of July,,,


Thanks,
Debbie

It would seem like it would be awfully fast for the RSD to be wasting at that rate. Maybe I'm wrong. I know for my limb that is wasting it seems to be a slower process. Originally it seemed only to be in the hand and lower arm. I am now noticing it in the upper arm, but more like the hanging skin.

I really hope they figure it out!

I'm sorry that the docs haven't been able to figure out the cause...but do they have any suggestions as far as what to do for it? I mean...I get that if it's caused by some underlying thing then you need to get treatment for that...but the fact of the matter is that it IS happening and what should you be doing NOW to fix it or at least slow down the process. If it is caused by the RSD (a definite possibility) then there's no cure for that and the question still remains the same: what do you do about the muscle wasting?

Have you spoken to a physical therapist or even a personal trainer about what would be some good options for putting on muscle mass? If a doctor can't help you then maybe a consultation with someone in those fields could at least give you some options. I recently started working with a personal trainer to get some exercises tailored to my specific needs and limitations to help me regain some strength. The woman I am working with has experience working with people who have disabilities so she's really good at working with me around my needs. The key being that these exercises are all tailored to my specific goals of developing more muscle and strength...as opposed to me doing things on my own which may or may not be helping me actually achieve what I want. Does that make sense? Not sure if it would help in your situation or not but it might be worth checking in to. Many personal trainers will do free consultations where you could just go talk with them and see if they might be able to help or not. If not...then nothing lost except some time.

Hi Debbie, my name is also Debbie and I too am experiencing muscle wasting along with the neuropathy. I used to weigh 130lbs and since September 2014 I am at 88 lbs. Still more docs to see, but so far I have been tested for just about everything and nothing has turned up. I even lost the muscles that help me to sneeze and cough, which is very scary. I too am wondering how to put on some weight and muscle, but nothing seems to work. I see a GI doctor in a couple of weeks, maybe he will have something new to say. Please keep in touch with any new news, and I will do the same. Good luck to you and God bless. You are not alone.

Hi Debbie,

I read an interesting case some time ago of a woman with weight loss, weakness and nerve symptoms who was an undiagnosed celiac. Got better with diet change and steroids to address leaky gut. Doctors had had her push carbs trying to gain weight lots of pasta, etc. Obviously backfired.
I have contended with muscle and weight loss over 1.5 years of surgery land and non-weight bearing. It has taken a boatload of work and lots of Muscle Milk to improve. My foot and calf were especially bad and I was at one point using a TENS unit ala Bruce Lee to fire the muscles. I think it actually helped, a little unpleasant but if tolerable it seemed for me to help my nerves and muscles remember to say hello to each other. Getting in the water is great but Gravity is your friend for muscle mass. I had to start really low and for months felt like I was getting nowhere, but eventually gained mass. If all you can do on a stationary bike is two to five minutes then do that. If all the weight you can budge with your calf is it's own weight while sitting, then do that too. Don't give up, the work is at least slowing loss. I find a flexible tape measure helpful, Gains and losses are more tangible. Got 3/4 of an inch to go on the calf still to match the other leg if I can. Hang in there and I hope your doctors figure this out soon!
I am Sending Healing Love, Littlepaw.