Thought I’d pop in and share a bit of what’s going on with me recently.

So I’ve been dealing with spread for a few years now. RSD started in my right leg, mirrored to my left then randomly on up the torso and finally into hands and arms. It started slow in my hands with tingling in my finger tips and then electric shocks, and now they are swelling. I know that swelling is indicative with RSD, but most of the time I don’t swell. I am classified as cold RSD / CRPS II. Hypothermia is more of what I deal with. So this whole swelling thing in my hands is new and sucks. I am dropping things like crazy. ****** me off actually. My hands are going numb, falling asleep, can hardly open and close them and bonus they’re swelling. They also turn blood red. I mean lobster red. Like a sun burn at times.

I just finished six weeks of PT. I have now some new, very sexy, leg braces that will reteach my half dead right foot and leg how it should be walking. I said to my husband “Just in time for summer! Won’t these look great with shorts?” Easing into them by adding an hour of usage daily. Kind of wild when I first put them on. I definitely needed my cane for a few minutes to get acclimated to my new center of gravity. It is truly like learning to walk again while wearing them. Stairs are awesome. Although I guess I finally have some sort of outward visible sign, that identify to others, that something is amiss with me.

The PT got me up and moving again. Motivated to move and get a few Neurontin pounds off of me, I know I over did it on several occasions. And I’m wondering.. did all that movement just start swelling everything? If so, why?

I have a new neuro doc. Got a much needed adjustment in meds. Among other PRN pain killers (that I was starting to need and take more often due to increased pain levels), he amped up on my Neurontin, doubled it in fact, added an antidepressant to help with pain, and I could probably use it to help with my mental capacity of dealing with my ever evolving, disabling and painful condition anyway. I’ve done 10 years. One would think I would have this mentally under control by now, and most days I do, however, today is not one of them.

I have had to rest at least half of the day today, took a bath because it’s all I could think to do for the swelling. I would love to grab some Ibu, but I wore my stomach out on that taking high doses for too long. That truly was my drug of choice. Sucks that I can’t use it any more. I have had to resort to adding a tramadol tonight along with Voltraren Gel, and the hands have calmed down enough to type this.

I start OT next Monday. I pray they can help me with my hands. The dropping things and this swelling .. ugh!

I think I needed to just vent. I am worried about the way things are going, and quickly I might add, with my hands. They so are weak.

Thanks you guys / gals for reading. I hate that anyone else has this, and yet grateful to have somewhere to go when all things RSD just gets to be too much. To have a venue to share with those, who at the end of the day, really do get it. [/FONT]

I can't imagine the feeling you have . I only have a mild case only in my foot and it's starting to drag me down (pretty much literally). This stuff sucks....no other way to put it

Oh how I hate this danged condition.... I'm sorry you're having to deal with spread to your hands, it's frightening enough when it spreads anywhere, but your hands are something you just use all the time and it must affect everything. I hope you're feeling a bit better today

Mine started in my left knee, spread to my foot and up my thigh, and then across to my right foot as well. In the last six months I've had some symptoms in my left arm including days where my finger pads are numb and sore, my arm has been darker and swollen, or just every movement of clothing on it feels like sandpaper. At the moment it's ok and my arm feels pretty normal, but I feel it's just there waiting...madness I know, but it just feels like if I stop then there it is.

It frightens me because I am very musical, and I play the piano and cello neary every day. I have lost so much of what I can do physically in terms of work and sport and social activities....I don't know what I'd do if I couldn't play, but I suspect I would feel that it had robbed me of everything.

So for now I keep going and try to ignore it when my hand or arm feel odd, but having had this two years now I know it's not going any time soon, and I know that the CRPS is active at the moment. It's funny, writing about it, I'm aware of the coldness in my upper arm, and the pads on my fingers are buzzing strangely.

Oh dear, sorry didn't mean to go on! I'm just trying to say that I understand the bizarre mix of fear and hope and frustration, and I really hope that you feel a little better now. It always make me feel a little better reading someone else's story and knowing they understand this thing, but also sad too because I hate what CRPS does to us. Hang on in there

Bram.

I'm sorry you are going through this. It really does suck. Hold in there.

Letting you know I read your post and thanks for venting b/c we all need to do it. My CRPS IS in my left hand and wrist and mine is BAD! So, I relate to how frustating it is. I'm thankful at least there is no spread so far.
Probably a dumb question, but are you taking large doses (1,000 mg.) vitamin C every day? I take it to help prevent spreading. Of course I have all the other usual meds. as well and I hate the side effects too.
P.S. I love your sense of humor through all your adversity.

Hi I am sorry but can relate a lot. Some days are easier then others to cope too. I give you credit for all the hard work you are doing in OT and PT. Have you tried pool therapy? You stated a bath helps and same for me.
I wish I had words of comfort or advice. Sometimes my head spins because out of the blue basically a new limb or area flares. I try to stay in the day and focus on what I can do to get through it in the best way possible. This is easier said then done of course.
Hope you feel better

Thanks you guys for the words of comfort and support! I truly appreciate it. Having a heck of a day again today. Will respond more later. Thanks again!!

Piano is one of my favorite instruments. I love music!! Love it so much that I learned to produce movies for my love of music... strange hu? but true. When I woke up from surgery and was paralyzed from the waist down for a week I had family bring my headphones and music so I could listen and try to make my foot move. Music has been one of my best coping mechanisms through all of this. I hope you will be able to continue playing.

I am not doing Vit C daily. Maybe I should be. So sorry that its so bad in your hand. And good deal that it's not spreading!! Hang in there & thanks for the post!

I did try the pool before my meds changed and I would end up in so much pain when it was over, and pool temp was an issue.. too cold! I am a fish at heart. Love the water. Perhaps I should try again now that I have better control since my increase in meds. Thanks for your post hon! It is words of comfort more than you know.