Hey fellow Spoonies,

I am new to this whole chronic pain thing and so far I can tell that this is going to be an interesting experience in my life. The question I have for you guys is how do you not get terrified over the possiblity of your rsd\crps spreading? I got crps about a year ago and originally it was only in my right arm, but now I can feel it in my right shoulder and hand. I have read in multiple places that CRPS can spread to other extremities. Are there any tips that any of you can give me as to how to deal with it starting to spread? the fact that its spread to my shoulder and hand is really scaring me. Thank you for your help.

Hello Spoonie,

Sorry you are having new symptoms. When you say now you can feel it in your shoulder and hand can you give an example of what exactly you are feeling? Did you have any kind of new trauma or can you think of anything that seemed to initiate this? I have not had to deal with spread and am new to this well. Just wondering if more detail might help with an answer....

Sending Healing Love, Littlepaw.

Hi Spoonie,
Welcome but I'm for your reason for being here. At least you're in good company.
I had my CRPS spread to full body. Don't freak out! Some folks never suffer spreading or just a little. It's like this monster has a mind of its' own.
My ortho doc said something to me once that has tuck in my head and helped me deal with it all. He said "It is what it is".
All we can do at the moment is except what it is and fight the symptoms as best as possible.
You'll have more questions, sometimes just want to talk, rant, or just visit.
Just remember we are here and someone will always lend an ear.
Best of luck...

Hey littlepaw,

My RSD feels more like electrical shocks, stabbing, crushing and throbbing than burning, so now that felling has spread to my shoulder and hand on my right side. I don't really know what might have triggered it. Last Dec, something happened, it may have been that the pressure band I was wearing smooshed something more in my arm, I don't really know. Anywhos, after wearing the band ( at the time the doctors thought I hand tendinitis or something close to it) my pain spiked to the most unbearable pain I have ever felt and I had to go to the ER. They were the first people that actually saw it for what it was, RSD. After going to the ER, my flares have been more constant and now go into my hand and shoulder. I don't know what triggered the original onset of RSD, my best friend who has since recovered from RSD all over her body thinks it may have been from a blood draw, since my usually is most constant in my elbow. Thanks for your reply!

Thanks Russell! Just wondering, did yours spread slowly, fast, after another trama or just seemly randomly?

Welcome to the forum! Sorry for the circumstances.

Sure CRPS can spread. But it doesn't always spread. It does seem to have a mind of it's own.

I've been taking 500 MG of vitamin C daily. Some people in the know have recommended this and as the body processes vitamin C quickly, this amount is certainly safe. Others take more, but I take 500 mg.

Are you keeping your affected areas moving? What meds are you taking?

I firmly believe that a "multi-disciplinary" approach to CRPS is absolutely necessary. I use my podiatrist (CRPS is in my foot), my GP, my pain management doctor, my chiropractor and I practice meditation and yoga to help with pain. Just got a TENS unit, which I am giving a 2 month trial.

Good luck to you and keep us posted!

Hi Spoonie,

Did you have much work up done? I am always harping about nerve entrapment because of personal experience and because it mimics and is sometimes confused with CRPS. I hate to think of people suffering over a nerve entrapment that can be treated. I get suspicious of stabbing, electrical pains as being nerve related in a different way than CRPS. So classic. The elbow area is a common site of entrapment or damage to the ulnar nerve. I can say with the authority of experience that the pain of entrapment can travel both up and down no matter what doctors tell you. I had pain shoot both ways. My father in law also went through a similar thing. Ulnar nerve actually! Compressed during a surgery. I always say new symptoms deserve a new look-see. We cannot sell ourselves short because of the diagnosis given to us. See about a nerve conduction test if you haven't had one or even if you have....Before you worry about spread make sure there's not something else going on. Case in point, I recently had buzzing going up my leg and was really scared symptoms were spreading past my foot and ankle. Turns out I was aggravating my saphenous nerve at the adductor canal of the thigh (a common site for this) riding the recumbent bike at the gym. I only figured this out after months of worry because I took ten days off my workout, had symptoms disappear then return when I went back to the gym. Doh! That problem totally resolved within 3 weeks of my not being such an idiot.
If nothing else is causing your symptoms then hit the Vit C and n-acetyl cysteine. Try not to panic, stress hormones won't help. Mirror therapy is good for addressing central sensitization which may be related to spread. Keep movin' if you can and hang in there!
Sending Healing Love, Littlepaw

Hello birchlake,

I havent heard yhe vitamin c thing before, i will definitely try that. I am definitely keeping my affected areas moving. So far I'm not on any meds. After I went to the ER I was on oxicodon for a little bit, but now I am not on that anymore. My doctor has recommended to try this medical marijuana patch thingy. I want to research it a bit more before trying it. I just started seeing doctors for this recently because no one really knew what it was until about 2 months ago, even though I've had it for a little over a year. What is a TENS unit? I don't really like yoga, it frustrates me haha. But I am taking ballet right now. As far as meditative stuff I usually listen to music, usually classical when it is a bad flare day, but sometimes the vibrations of the music can hurt. I also try to read to get my mind off of it.

Thanks for the support!

Hey littlepaw,

I have some blood work done as well as x-rays and just yesterday had thermography imaging done. They said it looked like RSD. That is an interesting point though, I may look into that more. However, I did originally look into that type of thing and it didn't fit everything as I recall. With my pain, it will turn ice cold on my right arm and be normal on the left, it also has mottling of the skin as well as swelling. Also, it is very affected by my moods, meaning there are more flares when I'm upset, stressed, etc. Also, I have had burning pain before in my arm, especially when it is a very bad flare, it is just more commonly what I think of as an electric feeling. What do you mean by mirror therapy?

info- videos about it -
https://www.google.com/search?q=RSD+...herapy&tbm=vid