Wednesday, December 15, 2010

Diagnosed with RSD/CRPS, what's next?

Let me say this much... I'm so very sorry that you've been diagnosed with RSDS. It's not like anything anyone of your friends or family have ever experienced! There is nothing that the docs can do for you that is guaranteed to help! Everything is on a trial and error basis.
You need to try the drugs the doctors offer and if you find ANY relief at all, put up with the side effects for a while to see if you can get used to them. Of course, there are some side effects that you don't put up with!  Hives, extreme swelling, hallucinations, etc are symptoms you dont want to put up with and should quit the drug after calling your doctor.  Never just stop taking a drug as the symptoms from abruptly dropping said drug can be worse than what you are experiencing on the drug. Call the dr.  I tried a couple of sleep aid drugs.  After taking one of the first one, I got hives. I didn't take any more of them!  Then, I tried another one and I was hallucinating the first pill!  I never took another one!  If you have trouble with your breathing, call the doc.  Start with one drug, add another one, maybe two months later, maybe wait longer to add another one.  
I only change an Rxed drug if needed if it's been six months since the last time I've changed one. You also must see what if any side effects you are getting from your OTC meds. I have found that I have to be very careful with the Allergy/Sinus meds I am on.
You might get a series of nerve blocks. These are not to be looked upon as something that is optional. If you are going to a doctor who offers you blocks, you can be pretty well assured that this doc knows and understands how to treat RSD.

Blocks can be to RSD as Surgery or Chemo or Radiation is to Cancer. There were times when I wished I had Cancer. At least then there is usually a 'prescribed plan of attack' that most cancer docs know.

With RSDS, you have to first find a doc that understands. A PT (if needed) that understands. No Pain No Gain does NOT apply to RSDS! Except maybe in the case of young children who I've heard can be helped by pushing past the pain.

For those who don't go into remission, either spontaneously, or through blocks or Ketamine coma your goal should be to become STABLE.

If you can become stable, you can get the pain to the point where the pain meds can help control the pain. Then, you can start to walk the fine line

No comments: