Hello, and welcome! I, too suffer from constant spasms and muscle cramps (left buttock and both hamstrings). It seems that TONS of water, bananas and Potassium supplements and help. I take 40mg of Baclofen each day, and just started on CoQ10, which I buy at the local drug store. (My P.T. said that it helps your cells absorb oxygen, but it takes about three weeks to feel the benefits...) When I have a really bad set of spasms, I drink Odwella pomegranate juice. It's about $4.00 for a small bottle, but very much worth it. I have learned that lots of water and juice and lots of agonizing stretching seem to work the best. Good luck and welcome home!

I've had RSD for around 5 years, started in my left arm/hand, but has recently spread to my ankle and foot on left side. I've had the twitching and jerking for a long time now, at first it was quite subtle but now I couldn't hide it if I tried. I think someone else mentioned hot cups of tea/coffee - I've burned myself on a few occasions. A few weeks ago my leg was twitching and my slipper actually came off and hit my husband. No bad thing maybe!

Vanessa, I wonder if your pain doctor has ever mentioned Vitamin C to you? I was recently advised to start taking this in addition to my other pain medication. So far I can't say I've noticed a difference in my pain, but it's early days yet.

I'm pretty new to Neurotalk, but I know there are lots of helpful and very knowledgeable people here for you to talk to.

Take care

If your insurance will cover it, ask your Dr. about Hyperbaric Oxygen Therapy. I have had RSD in my Rt. ankle/leg and my lower spine for almost 5 years now. In September, I did 20 HBOT treatments, and my sensitivity is SOOOOOO much better. The deep, stabbing pains never went away, but the color and temperature are almost normal and my skin can tolerate normal stimuli like shower spray, my covers, and even my pant legs. This is a BIG improvement for me. Since yours was caught so soon, you might get even better results than I did. Lots of people have gone into remission after HBOT. Good luck, and hope you get some relief soon.

Vanessa, I've experienced both, and still do. My rsd is in both hands, my right arm, and the chest area on the right. I get muscle spasms in both hands that are so bad I literally SCREAM in pain. The jerking, well, lets just say I best not get too comfy with anything hot in my hands. Those come on when I relax. It's kind of similar to those jerks you get just before you fall asleep at night, only they happen when I'm AWAKE fully, but relaxed, and it happens in my arms and sometimes all over. I could do some major damage if someone is sitting too close. In fact, I HONEST TO GOD woke myself up last week cuz I punched myself in the face TWICE during a bout of those twitches. SERIOUSLY! No matter...it was time to get up anyway

I am a new member here. Just to tell a bit about myself, I am 13 years old. I have had RSD for about 5 years now. Once when I had a nerve block done, my leg was twitching so badly that I couldn't sleep. I couldn't even sit down because I would fall out of my chair! My ankle would also twitch a lot. This was actually a good thing, even though it hurt a lot, because shortly after I started to get better.

Welcome, Becca! Can you post a NEW post up top so everyone can see you, and welcome you? We are so happy you found us...though we are sorry it had to be under these circumstances. You've had rsd since you were 8? Oh my goodness, hon! That's awful! How did you get it, where is it, and how are you faring these days? How are you faring in school and with friends, and family, etc. We do have a few members who are in school also with RSD so you've come to the right place.

Great to see you sweetie!

I am not sure, but I think I got RSD from a spider bite on my right ankle. I have it in my right ankle, my right wrist, and now possibly my left ankle. I am doing well in school, mainly because I have teachers and friends who are understanding and helpful. I sprained my left ankle about 3 1/2 weeks ago. It doesn't feel like RSD, but it is showing all regular signs of it (color changes, temperature changes, swelling). It is getting better quickly, and I hope to be off crutches within another week or so.

Thank you for the warm welcome!

Yup, I get the twitching too. Seems to come in phases. When I get towards the end of the "high" of the stellate blocks, I start to get the spontaneous twitching of my deltoid. Uncontrollable and pronounced it is, doesn't hurt, just is totally independant of my control. I have had CRPS II since a shoulder surgery 1 1/2 yrs ago. Things are relatively better after 6 SGB (compared to the pre-SGB days), but no. 7 is around the corner.

I got the air and fan thing going too. Really a bummer b/c I LOVE air conditioning, or used to anyway! Can't really hold a cold can of soda or Starbucks coffee cup too long. Anyone else experience that?

So sorry to read your post but you are obviously in great company and amongst friends here!

I too have the cold and hot thing.... all I can feel is PAIN!!! I haven't been able to tell if something is cold or hot in a long time.

I have to have the air running to keep the humidity down in the house...plus I can't handle the heat.... but it's a vicious circle.... I can't stand the cold either.... Most comfortable for me is above 72 but below 75. It's nearly impossible to keep between those temps.

Right now I have a small (6 inch) fan sitting on the floor running but not pointed at me.... it's just to keep the air in my bedroom from getting to hot over night.... if it get's too cold... it's just close enough to me so that I can reach and turn it off.

As far as muscle twitches... YEP have those too... Sometimes they are visable to the eye... other times they are deep against the bone. I think I have had every muscle in my body twitch, spasm, or cramp at one time or another. Most times they are painful, sometimes just annoying....but ALWAYS twitching, spasming, or cramping some where in my body. It's really weird when my face does this and it hurts too!!!!

I'm at the 5+ year mark... full body with facial, scalp, and internal organ involvement.

I sincerely wish you the best and pray for low to no pain days for everyone!!!

Abbie

hello everyone (((( hugs ))) to u all. i just want to say what a fantastic website this is.It helps so much when you need support and are in pain. so thank you . olga xx