Quote:
Originally Posted by Kymmie67
Angelina....I haven't really noticed the cold spots happen like the hot spots do. I do, however, notice that the one side most affected by CRPS does get colder than usual every now and then.
Reluctant...I initially was sent to pt by my ortho doc who is the one who diagnosed me in the first place. He told me that if that did not significantly reduce the symptoms or rather, the severity of the symptoms, then I was to immediately go see the pain doc. Pt did absolutely zilch so off to pain management. The dr put me on gabapentin to start with, and started me on the road with my idiotic insurance co for a sympathetic nerve block.
Insurance denied the block stating that I had not met all the requirements for "medical necessity". So, I paid out of pocket for that one. Started imipramine, then after I'd been on that for the required four weeks (per insurance), I had another block done. Switched to Cymbalta, had a third block.
These blocks would help for a couple of days, if that, and then pain was back full force. We decided to try a femoral nerve block. The first one was accidentally pulled out of place after a few hours, so we did another a week later. That's when I fell (christmas Eve) and injured the muscle in my thigh and things have been going downhill ever since.
I've been taking ambien for several years, so that has helped with the sleep problem, but I also take Percocet for pain. It didn't seem as though that was helping all that much until I was running low and had to ration myself. My Rx said one 7.5/325 every six hours. Well, I had to take every four. Not good, so I was running out before I could get another Rx. So, I found out that the Percocet was doing at least something to help.
So, that's what we've done. What do you think?
Thanks.
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I also take ambien for sleep, but I take it only sometimes. I mostly take trazadone for sleep and it usually helps. Except for days like tonight when I wake up from too much pain. For me narcotics work alot! I know that some doctors say they don't help our pain but they do for me. I am on Lyrica and just started Gababapentin. I also started taking lots of certain types of vitamins and I can see a big difference!
I was getting Lumbar sympathetic blocks and they would help. I would have to get them in threes though. Then for some reason I got one and everything went downhill fast! It spread to my entire leg and symptoms got worse. So they have stopped that for now. I need to find a neurologist. One doctor to 'oversee' my 'case'. Right now everything seems like chaos, having three doctors all telling you what to do, handling your meds, and treatments, is so confusing.
I do know that Physical Therapy is so important for us. It is not meant to take the pain away. It is so that we don't become immobilized. We have to make sure we keep our joints and body parts moving and strengthened.
I haven't tried Cymbalta, because I get really bad mood swings on it. It reacts with my previous depression. But I have heard from others that they love it.
This disease is so difficult on us becuase mostly everything is trial and error. You just research and talk on forums like this one to hear from others, and then start your own trial and error until you find what works for you. This is your journey though so take control. Keep a book of everything. Write down what works and what doesn't, keep a pain diary or a diary of just how you are feeling every day, keep track of your blood work and test results so you can see what is happening with yourself.
I hope this helps! I wish you luck and may you find what you need soon!
Angelina