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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 05-12-2012, 10:22 PM   #1
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Smile On the positive side

I'm posting this for those who are newly diagnosed, and see only really terrible situations reported here. It isn't always so bad.

I developed RSD in 99 after a planned hand surgery that had some complications. I was released from the hospital and didn't realize until I tried weaning off the pain meds that I was in incredible pain...like walking the floor all night weeping pain. I understand now why animals will chew an injured paw off.

I referred myself to a local pain clinic and got fairly good treatment for five years. The doc tried me on every combination of drugs and blocks known to mankind. It didn't help that my husband had left me. That's another story.

This one has a better ending. I was willing to do anything to be present in my children's lives. I took the stupid meds and went back to work. I needed accommodations for my job, and after 5 years of fighting, I got them. I also got a better pain doctor, someone who respects the work I do and the way I mother.

The pain is never gone. I take a fair amount of long acting morphone, cymbalta, and klonopin every day, with extra morphine for break through pain.
I push it to the back of my head, focusing on what I love in life. I try to stay as active as I can, because I need endorphines.

One child is now in college, and the other one will be soon. I love the work I do, and I'm grateful that I get to continue it.

The illness isn't always disabling. Maybe I was lucky, or stubborn. If you are newly diagnosed, I hope you get excellent medical care and surround yourself with reasons to live.

Much love to you all,

Sherlock

 
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Old 05-12-2012, 11:00 PM   #2
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Re: On the positive side

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.

 
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Old 05-13-2012, 10:29 AM   #3
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Re: On the positive side

It's good to hear someone with such positive engery going for you. When we put our childern first and vow to be there for them will help you a long way. Mine are what keep me going everyday as well.

 
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Old 05-13-2012, 02:20 PM   #4
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Smile Re: On the positive side

Quote:
Originally Posted by SweetPeainSF View Post
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!

Sherlock

 
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