Hey Vrae,

Have you ever tried Baclofen? I've been having visible muscle spasms in my original site of CRPS II since the day it all began (like you upon waking on the recovery room table) and then over the past few months they became more progressive in other parts of my body (diaphragm, opposite thigh, shoulders & arms) after ruling out medications as the cause (some meds do cause spasms/tremors) we realized it was in fact the CRPS spreading/progressing and so I started taking Baclofen 1-2 10mg tablets 3 times per day. That has really helped even though they haven't completely disappeared they aren't as jerky now. The first real bad one happened while I was driving and literally scared the freakn' daylights out of me because it literally pulled my foot of the peddle and the pain was so intense I wasn't even paying attention to my driving for a few seconds.. not good. Thankfully with the Baclofen I haven't had another jerking episode like that, so I can still drive short distances.. until that no longer works

The epsom salt soaks help also and if you can massage in the areas where touch sensitivity is tolerable. Lactic acid builds up in our muscles when we stop using them which causes pain to increase so anything you can do to help rid (like with Vitamin C & regular movement as hard as that is) your muscles of this should help lessen the pain some anyhow. Wish there was more.. I so do!

Keep posting you are crackn' me up with all your gif's

Vrae,
Sorry about the new "gig.
I have only had those spasms in my left foot (we think it's spreading there).
I stretch my foot & it cramps and my toes "stick" some curled, some straight and pulled at weird angles. The cramp gradually lets up and sometimes I can very painfully walk it off.
My hand (original site) has stayed contracted since surgery. Now, a year later and too many proceedures & P.T.'s to count I have partial movement. But what little grip I have I get mini spasms where I drop things or go to pick something up and reflex "drop it like it's hot". That's w/o pain so I'm not sure what that even is.
I have Baclofen, but I haven't been taking it lately. I will again if spasms get chronic.

I get the stuck cramped down fingers in the RSD hand. It is horrifically painful and worse forcing them back out. They stayed in a tucked, non straight position naturally since my 2nd surgery. My spasms are generally in the upper arm bicep area. They come and go. I take flexeril at night and Valium in the day to try and keep things loose.

fbodgrl, I am so sorry hon that you have this so severe. How frustrating. I wish, oh how I wish, they would come up with something that really, really works!! Like cures it. Not just band aides. Good for you that you keep trying. I believe this is all that we can really do.

AZ-Di, me too… wasn’t the gig I was hoping for. “I stretch my foot & it cramps and my toes "stick" some curled, some straight and pulled at weird angles. The cramp gradually lets up and sometimes I can very painfully walk it off”. THAT’s it exactly!

I am so sorry that your hand contracted and you’ve had to work so hard to regain some function. I drop things ALL T-H-E T-I-M-E!! That is frustrating as all hell! Now, if my feet were my hands, it would be worse, but since this crap has moved all over, my hands are definitely a problem now and this dropping things, I mean like… I dropped “it”, then I immediately dropped “it” again, and sometimes even one more time for good measure. I yi yi!

Hello,did you get my message about your stomache issue,I sent you yesterday ,I have full body rsd stage 3,I have major issues with. Stomache.thers a drug my syke gave me it's an anti depression with some kind of stomache factor in it.you should go on this drug"Remeron"it will stop all the pain ,cramps ,nausea.i tried everything befor this,nexium ,gull bladder removed,gull stones removed.this changed my life,from being bed Reddin in agony with stomache issues.okus all the other problems my rsd gives me.goid luck and let me know how you make out

I have been very fortunate to find a wonderful massage therapist. I originally met her when she was working as a physical therapy aide at the office I went to for physical therapy and she was in massage school while working as an aide. Now, she is practicing full time and she is is terrific! She is in remission from multiple sclerosis and understands some of the "wierd" nerve symptoms that I get. If you do not find the right person initially, keep looking, ask for references, don't settle for poor treatment. It can be expensive, so I tend to go when my spasms are worst, usually in the winter months.

TESSA!! There you are! So great to hear from you!!

Oh yeah, I did try Baclofen and it was a terrible experience for me and I couldn’t wait for it to be out of my system. And I am the one who ask to try it. It was my idea with the doc, and I so regretted it. I will try to explain what it felt like. So I take gabapentin (which I will be talking to the doc in jan about changing) which helps or makes life worth waking up for by helping to control the electric shock and tremors.

My tremors, much like the shocks were, without this drug, VERY severe. The tremors would also turn into full on violent jerks. My tremors often give off warning feelings before they become visible. I can feel a vibration of sorts, or tremble inside and without some treatment it will escalate from there. I can also have what feels like restless leg.

Anyway, so when I took baclofen I felt the vibrations, trembling and SEVERE restless leg (but all over my body) feeling. It was maddening and I couldn’t wait for it to be over. I’m so dumb that I tried it again, thinking well what if it was just a bad night. NO! it was indeed the drug. That sucks because I had heard so many that felt like it really helped them and I was hoping it would help me too.

Soaks/Massage: yep, I do both.. often. My daughter is in massage therapy school. She’s trying to learn how to fix me, bless her heart. She’s only done one real, full body massage on me. She’s concerned to touch me until she has all the knowledge. She doesn’t want to hurt me. I tell her, heck, you’re not gonna hurt me, you would massage lightly on me before you were in school. I respect her and I am waiting. I think around May-ish I will be a regular client lol. Until then, yes I rub the areas that I can reach. I worked hard for the first few years of CRPS and continue to try and desensitize my foot/toes as much as possible. This usually happens in a bath. Funny how the more stressed out my leg/foot, the more sensitive my toes will be. They can regress quickly and then dissipate if I quit doing whatever is aggravating them, like walking too much, etc.

And another quick note on massage. I’ve paid for such bliss and have had great experiences with it. I have also had terrible therapists, who like some doctors, just didn’t listen to me before or during a treatment. I will always tell them; don’t lightly touch my foot, ESPECIALLY my toes on my right limb. As relaxation is what I’m after, not pain, and that would send me through the roof. If you do touch that area, be profound, definite in your touch. Most will just avoid it. Cool that.

I do move and get around more often and more vigorously than I probably should. I am the queen of over doing it. Then I pay the toll for a day, two or three… Balance… I must find balance in my life with this stuff.

So great to hear from you! Sorry to just be rambling on and on. Hope you’re having a good day! And HAPPY NEW YEAR!