Originally Posted by SweetPeainSF
Thanks, Sherlock! I am among those newly diagnosed, so I am working very, very hard to get this condition in remission. Husband and I want to have kids, so I am taking the stupid drugs for now.
Was there any one thing you did (apart from finding the right doctor) that you would recommend to others? Incidentally, my boss worked with several folks with CRPS in a previous job, and he said that those who stopped using the affected limbs were the worst off. However, I am not sure whether his non-medical observation is a chicken or an egg deal.
I'm glad if I can help. What would I recommend? Well, I'm a scientist, so I read everything in the medical literature that I could find. Somehow I cope better when I know the worst that could happen, as well as the best.
I don't think any of the lyrica/ topamax/various antidepressants did a thing for me. I had massive migraines every time I took them. I refused to take a drug that just didn't seem to me to help, after giving it a decent try of 2 weeks.
Neutonin was a nightmare-- it helped, but it put 60 lbs on me, destroying my self-confidence, as well as my personality. Thank God my oncologist told me I seems zombi-ish. I made the decision to quit it then. I'm still struggling with the weight.
Oxycontin controlled the pain...until it didn't. I was switched to a patch, which almost sedated me to death. That's when I changed docs.
I honestly don't think blocks helped. I think physical therapy to keep the arm and hand active did, as did heat and pressure on the side where part of my hand was amputated.
My new doc introduced Cymballta, which was as effective as morphine for me. I take it, and longacting morphine 2x a day, along with about 60 mg of short-acting morphine when I need it. And klonipen, which really does help.
The pain is never gone, but rises and falls. I have to type to do my research, and I finally got a secretary to help me with that.
When I was first symptomatic, my doc said I HAD to work out an hour a day. I was so scared that I did it. I've never been so fit, and it helped me stear clear of depression. It made me feel functional, you know?
I don't think not using the limb is a good idea-- the more strength I've had, the better. But, after more than 10 years, it has atrophied-- that's normal.
Loving my work helped. I was NOT going to be disabled, no matter what. Now, I have the pain, diabetes, hypothyroidism, asthma (serious stuff), and HTN. But going on disability isn't an option for me. I want to show those kids that they have reason to respect me.
I decided a long time ago that it was unreasonable to expect this to go away, and I refocused on keeping it managable. I use relaxation methods. I pace my use of my bad hand (it would be my dominant one). Sometimes I just go hom and sleep... knowing that it will be better when I wake up.
I urge you to look at the medical literature. I have found little about some of the associated symptoms patients report, and I know it's very difficult to know what is CRPS and what is some other illness or reaction to meds. I don't know about it spreading, only that mine didn't.
Life is increadible precious to me. I just refuse to let this illness take it away.
Which is not
to say that those with destroyed lives didn't have enough "will power." I have no special will power, and will power won't cure this. I'm fortunate to have a doctor who believes me when I say I'm in pain.
I am just so very lucky.
Hope this helps!