I don't know when or how, but I can no longer wiggle my big toe. I asked my Doc about it and he said that happens with RSD. When I asked him if I will ever be able to move it again, he just raised his eye brows. He went on with the exam and asked about other things.

I asked the PT guy about it and he said well, it's not good. I asked if I will be able to move it again, and he said let's hope. Now what does this mean?

Have any of you lost the ability to move a toe, finger, body part and then have it return?

I have had it for 9 months.

Hi Star, its awful I know. I lost the use of my left thumb for over a year. the brachial plexus is one of the first places my rsd spread from my legs. it was dx there a year later. about a year after that I lost use of my thumb. it did come back but it took a long time and a great deal of pain. Hot soaks in Epsom salt , hot therapy pools did the most to help and not using my arm unless it was in water. hope this helps you . good luck CZ

I would think use that arm CZ.. things tend to atrophy and get very weak if we do not use them.
Star hi, I would sugest that you use that leg and foot as normaly as possible, though I am not a doc or PT. Every thing I have read and heard says this and so does my gut instincts and my personal experiences, although I have not lost the use of an appendage as CZ has.

Epsome salt baths are a great idea, and elevate the foot alot incase neurgenic inflammation is the culpret, up your antioxidents and vitamin C, cause that will help with the inflammation too. I have heard of this happening as well and it usualy does go away.. sometimes it can cover alot more of the body too I think if it is the same thing I am thinking of.. I will be back with research it may tell you what to do to help.


Sandra

I'm always battling with this issue. I work hard to keep moving my foot but the protective nature of RSD is getting the better of me lately. I often exercise everything else but my foot the one area I need to focus on. I've gone back to PT and they are helping me with this again.

I always have an immediate release of my atrophy following my lidocaine infusions. I seemed to hop off the stretcher and feel like I could go dancing on my toes. I don't because I know I could flare myself up prematurely, but lately the lidocaine has not been doing it's usual magic. My PM doc gave me a lumbar sympathetic block and the relief lasted for 10 glorious days. It's worn off now so I'm right back to the hard work trying to work through the pain of of managing the atrophy and the other neuropathic pain symptoms.

What treatments are you getting stardustkid?

MsL

Utilize your PT to the fullest extent. Move, move, move, breathe, breathe, breath. Themore we move the better off our circulation/blood supply will get down to the weakest links.

I do walk all the time, I refuse crutches or aides. I hate them. I cannot do much with the ball of my foot however. Some reason my toe just won't bend, my others do, but not my big toe. I had it in a cast for 8 weeks in the pointed up position and I wonder if thats what caused this. I can move it manually but there is no feeling. It's like it is not a part of my body, it won't listen.

I have been getting nerve blocks ever two weeks, injections in the foot every two weeks (steriods and pain relievers) And now PT.

It took 9 months for them to figure this out, a surgery and a cast (8 weeks) and shots directly in the RSD zone..before they realized they needed to LISTEN to me. It was amazing 7 doctors looking at my blue, swollen, painful hyper to touch foot and none of them knew what it was they never listened to me. I kept telling them my foot was blue, my toe nail was milky, I had these weird hairs growing They could SEE it but slapped casts on and did surgery anyways. I had never heard of RSD before until last month when they said thats what it is.

Stardust,

Hang in there! There is always something you can do (verses the doctors) that might help.
Take a deep breath and say to yourself: I will move my toe again. I also lost the ability to move my toe: started with the one next to the big one and now also my pinky toe. When it happened I went into a shear panic (cried for hours) and called the doctors right away. Turns out that the doctors couldn’t help and it sounds like you are going through a similar experience. A few days later (After I was done being angry and sad) I began working on moving my toes while watching TV.
At first it was so frustrating because I would be looking at my toe and telling myself over and over that I could move it and the stupid toe would not budge.
Over time, I did regain some motions back (still not full range but some range is progress).
Unfortunately, the same thing is now going on with my little toe (pinky toe only started 2 weeks ago). I have not regained any motion in that one but I will work on it every day and hopefully I the motion will come back. I look at it like retraining the toe to work again.

I hope you dont mind me asking, but what are lidocaine fusions? I currently looking for a new treatment option and I want it to be non-invasive. I have tried the lidocaine patches and I had some success with that but then my body got used to them and they stopped working. Just hoping you could give me some information on the process and background on your opinon in relation to the treatment.

Dear Swatgen,

Lidocaine is a sodium channel blocker (Mexiletine is the oral version of lidocaine). Many RSD patients seem to do very well with sodium channel blockers. Ketamine is also a sodium channel blocker.

There are 2 types of lidocaine infusions that I'm aware of.

My preference is for the straight goods. It consists of is 800 mg of lidocaine delivered intravenously using a pump over 2 hours. I get 100 mg as a bolus over 5 minutes and the rest, 700mg is given in a the bag. The protocols require that the patient is monitored with a heart monitor for the whole infusion, therefore it is a more expensive treatment. I just seem to have better results with this method.

The alternative is to have the same amount of lidocaine delivered subcutaneously using a small disposable pump. It looks much like a baby bottle, made by Baxter. Typically they would insert the needle under your skin in your abdomen area instead of directly into the vein. They can do this for patients on an outpatient basis. They send you home with the pump and after a few hours when the pump is empty you remove the needle yourself. It is my understanding that most patients here are now getting this type of infusion.

Aside form being sleppy during the infusion I have few side effects from it. A bit of gas and sometimes my blood preasure is raised during the infusion but that returns to normal when the infusion is stopped. I've had good results from this, getting them on avarage every 3 weeks for the past few years. It seems to keep most of the RSD patients that I know stable.

I hope that answers your questions.

Good luck.

MsL

Don't stop by just writing it off as another RSD-thing! Could be, but it also could be someting like an L5 nerve root or peripheral nerve issue, unrelated to RSD. You need to press your docs more on this!