Hi all ,,not sure if u remember me but for some unknown reasons my rsd, which started in my foot has lead to full body muscle dystrophy, I can no longer get up by myself or do adls, i have had every test ,,the only pos was a3phase bone scan for rsd and a skin biopsy for small fiber neuropathy in my rsd leg ,,the latest muscles to weaken r my neck including my larynx,
If anyone has any ideas please speak now!

Ty
Debbie

I know you've tried just about everything, but has anything ever given you any amount of relief? Do you feel better in warm water? Or in warm salt water? Does climate make a difference for you?

I know you're sensitive to meds, but have you tried low dose naltrexone? Or even something like basic morphine or methadone? I find that the newer meds tend to come with more side effects.

Having my insurance meds with approval on my meds for almost an entire year taught me that the only reason I haven't experienced spread is because of my prescriptions.

just thinking out loud, electrolytes, mag, cal, phosphorus, iodide salt...

My heart goes out to you so much! I sure wish i knew what to say.
I don't have a clue.
I guess I'd be pleading with my Pain Mgt. Dr.?
Have you tried a lidocaine IV infusion? That goes through entire body.
I just tried it without much noticible effect, but everyone is different.
Some people get profound relief.

Ty repliies.. i am trying ivig again ib the past i haad lidocain ketemine calmere, tdcs. hbo2 ,, dr rhodes, nerve blocks etc,, i havehad mmy calcium and all that stuff is normal.. I was going to ymca pool but I Have gotten too weak,,,

Help!

Debbie

Have you discussed the option of an inpatient program with your docs?

What type of help do you have at this point?

Debbie, I'm so sorry, that's a terrible thing to happen

I will hope that this is not a permanent thing and that something out there can help at least a little.

I can't suggest anything major outside of whats been mentioned except (I think someone at the top mentioned this) a full look at your diet and environment to see if anything can be changed to benefit you. It might seem like the last thing you want to think about when everything has gone so wrong at the moment, but diet is such a big thing - it is what we eat, the vitamins and minerals we ingest with our food, the chemicals and toxins we ingest through cleaning products, body products etc that all affect our systems. And your sudden full body dystrophy with so much loss of function sounds like your whole body is in crisis for some reason. Of course it could be simply the CRPS rampaging away with no pity or sense , but there's always the chance that something else old have triggered it, or at least be making it worse than it needs to be.

It's just an idea. Might be worth talking to a whole body doctor (naturopath?) and/or getting a full blood workup done to check all your mineral levels. Sometimes the excess or deficiency of a single thing can cause havoc. If you can bear to, I would certainly try eating as natural and unprocessed a diet as you can, with plenty of nuts and olive oil, fruit and veg, and oily fish. Cut out processed sugars and salts, most red meat and processed foods including bacon and sausage (they have all sorts added them).

Environmentally, it's a tricky thing I know. I found I was so much better when we were away by the sea, but we can't afford to move so it's not really a serious choice. I'm sure it's the same for you - we all have to make the best of so much...

Maybe try keeping a diary of food/pain/events for now (you could maybe use a voice recorder on your phone if it's easier) and see if you can spot any triggers of worsening symptoms.

Sorry I can't think of anything useful. I do so hope this situation gets a little better, it must be frightening and heartbreaking. I'll be thinking of you.

Bram

Hi,

Debbie, I am so sorry to hear you are not doing well. My heart goes out
to you. Try to hang in there and don't give up hope

Hey Deb.. sorry to hear about this.. If you ever need to talk you have my Number.. Im always a good ear.. even if we don't see each other often we are still part of the same group/family and are here for you..

Thanks for all your thoughts,'Monday I start ivig,,let's hope'',