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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I visited this board full of such helpful people well over a year ago. That was the first time that a doctor had suspected that I may have RSD. Of course after researching the disease, I quickly learned that there was no way that this is what I had.

A few months later, another doctor discovered another tumor and I had my third surgery on my left dominant arm to remove it. That was over a year ago, the pain in my arm is now far worse then how it felt prior to my most recent surgery and some things (such as the scar) have yet to heal.

I was sent to a pain specialist (anesthesiologist) and after hearing my symptoms and testing the temperature of my arm (almost 2 degrees colder then my right) he diagnosed me with CRPS.

I went for my first nerve block last Tuesday and for the first time in years, I was pain free for 3 days. So I'm willing to bet that I do indeed have CRPS, but I simply don't understand something and I was hoping that someone here would be able to answer my question.

The thing is, my symptoms just don't appear to be as bad as what I've read here on this board (and on other places on the web) regarding RSD. So what I'm asking is could it possible to have a 'less case of RSD' or have I simply been misdiagnosed?

Thanks in advance for your help. :)
Hi Miss Megara and welcome to the boards again. All these posts add truth to the disease and about why some people have it worse than others! I especially like what Laura said about keeping the affected limb moving. This I feel is crucial to manageing the pain that RSD can cause you. Another point that I would like to bring up is STRESS! :eek: When my teenagers stress me out, or a situation, My RSD can be 10 times as bad in the pain levels. The other is the temperature changes can really cause flare ups. It is a disease with a mind of it's own. I'm glad for you that the blocks worked for you. That is a good sign that maybe they caught it early enough, and DO have as many as you can. Whatever works to keep your pain levels down. I use a STS machine 5 times a week, and it manages my pain where I can move the limbs with less pain, just as the meds do. The trick is finding what works best for you & adjusting your meds along with activity to be somewhat functional. I still have bad days--anyone else? On rainy cold days, I wear layers to keep the body temp at a comfortable temp, and I avoid outside as much as possible, and I live in Hawaii!
You said you had a third tumour removed in your non-dominate hand, when the pain got worse. What were the tumours from? Did you have cancer before RSD? What kind? Reason I ask, is I just had my 5th MRI on my neck, and now the MRI's are showing a possible tumour in my neck where the RSD originated at. I'm in a quagmire as to do a biopsy of the neck or not to see what organ is effected or if it is bone cancer. My RSD is also in my non dominate side. The other ? I have is how old are you?
I pray that the blocks keep workling for you, and even you have hopefully a lesser case of RSD! But over time it can change. I''m glad that you found this site, because it is the best site out here, an no ? is too stupid to ask.
Hope you alll have a pain free day--Aloha Skooze :)
Thanks for the responses everyone. I am SO pleased to have found this site.

[QUOTE]Unfortunately, the people who hit boards such as this are people who have it bad.[/QUOTE]

That's what I had thought. I told my pain specialist straight out "I don't think I have RSD based on what I've read on the net about it" to which he responded "you will only find worse case scenario's out there."

As for the nerve block working, yes it did but only temporarily. I shudder at the thought of having to go through another one, seeing as this is all a guessing game right now.

Skooze - I noticed the stress problem for my arm quite some time ago, along with noise and weather changes. (I live in Toronto so we get a lot of those)

[QUOTE]You said you had a third tumour removed in your non-dominate hand, when the pain got worse. [/QUOTE]

First off - the RSD is in my dominant (left) hand, not my non-dominate. Secondly, the pain got worse following a surgery to remove the tumor, not as a result of the tumor.

[QUOTE]Did you have cancer before RSD?[/QUOTE]

Thankfully, no. All three tumors were benign.

[QUOTE]The other ? I have is how old are you? [/QUOTE]

I'm 31.

Thank you everyone, I too am hoping and praying that the blocks continue to work. I'm well aware of how much worse this could get and will continue to keep it moving because of that.

Wishing you all a pain free day!! :)





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