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Originally Posted by jmcclellan
Hello every one mine name is Judy I was told I have RSD almost a year ago it was caused from a simple knee surg. they place a donjoy ice machine on my knee and told us not to take it off only to use the bathroom and to keep ice in it they had set the temp where the Dr wanted it and told us not to touch it that was on a Thursday I was to see my Dr on Tuesday for follow up we were told I would not feel anything for many days well on sunday I was in so much pain I called the dr she said oh my I hope you don't have frost bite come see me in the office Monday Ihad my husband take the machine off me. when we got to the Dr I had 3rd degree frost bite which set up the RSD I first went to my derm.thinking it was a skin issue and she sent me to a Pm I have had the blocks been on everything you can think of.I live outside of Jacksonville Fl and Im looking for a PM in the Chicago area.
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Hello Judy,
First wanted to say how terrible it was that the advice given about the use of donjoy ice machine! I have never heard of someone being told to ice for that long.. whomever gave you that instruction should NOT be treating patients!!
I sure wish I could offer advice on who to see in Chicago but I'm on the opposite coast so I can't help there. I can however share a few things about what I've learned during my journey with CRPS II that may help you find a little relief from your pain.
The most important thing you can do is stay positive/optimistic despite what you read, hear or learn from anyone about this disease. BELIEVE that your outcome and future will be YOURS and YOURS alone, as this will help drive your inner strength to overcome the pain and limitations this may cause. Try not to worry about what "may" happen tomorrow.. sure we all research this horrible disease but try, as hard as you can not to let depression or fear consume you. I wake up every morning and tell myself I won't become another CRPS statistic.. that in my fight against this something amazing will come of it. Promote healthy thoughts of getting over and around every mountain CRPS throws in front of you.. never give up.. BELIEVE in YOURSELF and your ability to cope/overcome. If you feel you are in a low/dark place or heading there.. reach out to someone so that they can help pull you up/out so you don't get stuck there. We all have moments.. and that is okay as long as they don't suck us in for long.
What helps me:
Watching/reading inspiring stories of others who have survived or overcame "against all odds". Whenever I am down I find a book/netflix documentary about someone else's journey.. it almost always refuels my will to fight!
Epsom Salt soaks!! Sometimes I take a couple of warm bath soaks a day.
Recumbent Bike - I ride my recumbent 2-3 times per day. Whatever you can do walking, riding stationary bike, walk in a pool etc., keeping your body moving (especially the CRPS part) will help you fight back pain and keep the muscles from atrophy. The more we ignore the CRPS part the worse it gets.
Massage.. I get a massage on all areas that are not affected by CRPS 2x per week and is a great way to rid compensation pain or other trigger spots.
Mirror therapy & Desensitization therapy are very helpful and should be done daily for several months or more.
Regarding medications or other invasive treatments like injections etc., Not all work and everyone has a different opinion on whether or not they are worth trying. I personally am willing to try most anything with the hope that it will help me.. "leave no stone unturned" is my thinking but always remember what works for one may not work for another. Some medications like Lyrica, Gabapentin or Cymbalta take some time to show any benefits. In fact most medications don't show "instant" pain relief and need time or dosage adjustments before one can really determine if they are at all effective. Lidoderm patches, Voltaren gel and specially formulated compound cream are generally more effective after just a few applications and can be used without many issues with side effects and can also be used together. Some pain medications can help some.. nothing is 100% but with a good PM you can with some time find a combo that helps you. At a certain point sympathetic blocks are no longer effective but for those they help it is wonderful. Again.. it might take more than one.
I do hope you find a good doctor soon!! If you have any questions I am happy to share whatever I can that may help you keep fightn'.
Hang in there,
Tessa