Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 12-31-2008, 12:55 PM #1
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Tracy, My current meds are Lyrica 100 mg three times a day, MSContin (morphine) 30 mg twice a day, MSIR (immediate release morphine) 15 mg for breakthrough pain, and Klonopin 2 mg at bedtime. I failed Neurontin because it made me too tired and never really did anything as I never got to a substantial dose. I failed Cymbalta because it gave me TRUE double vision-running into walls, actually seeing two of everything, not just blurry-I had to see with only one eye. Initially, the doc tried me on Ultram (Tramadol) 50 mg and that was useless and constipating as cement. No real pain relief whatsoever. I can't do tricyclic antidepressants (amitryptyline) because I am already on Wellbutrin and Lexapro for depression and they don't mix. My doc was also concerned about giving tricyclics to me because I have a history of depression and you can fairly effectively kill yourself with them (to be blunt.)
Unsure if this helps or not, but keep an open mind-what works for one may not work for another. The goal is finding what relieves your pain.
One piece of advice-take daily laxatives and stool softeners until you see how any of the meds effect you. I need a ton just to go every couple of days and I waited too long initially and almost had a bowel obstruction. All of these are constipating.
Let me know if I can help
Lori Lee
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loretta jewell (01-01-2009)
Old 12-31-2008, 08:52 PM #2
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I only take 2 meds, baclofen for the jerking and muscle spasms,10mg 3 x's a day and vicodin 10mg 4 x's a day. It does well enough most of the time. I took 7.5mg for just over 2 years and will stay on 10mg as long as I can. If I switch to percocet then I'll have to go to the doc every month and I really can't afford that. Right now it's only once every 3 months.

I tried neurontin and it turned me into a monster,quite literally. I tried cymbalta and it gave me sharp,stabbing,shooting pain in my stomach. I just quit taking lyrica because the only reason I took it was to help or stop the numbness in my legs and instead it made it 10 x's worse!! Thankfully the worse part wasn't permanent and I've now gone back to my "normal" numbness. When I was on wc the neuro I saw put me on the duragesic patch for awhile and it made me feel as though I didn't even have rsd at all. It worked great, but I also felt very sick all the time and I couldn't take that,plus I was going to settle out and there's no way on earth I could afford to buy them on my own.

Everyone is different when it comes to how they perceive pain. My 3 or 4 could be your 8 or 9. So, the meds we take that "help" our pain a bit will be all over the map as well. As Lori Lee said, you have to find the combo that works for you. It really is a trial and error thing. I wish you lots of luck in getting some pain relief very soon!! This is a big reason I think that docs don't want to treat us. It takes too much meds and nothing they do will make us "better", they don't want the hassle. I sincerely hope your doc will listen and try to find the ones that will give you peace.

Hugs,

Karen
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screwballpookie (01-01-2009)
Old 01-01-2009, 12:52 PM #3
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Hi Lori Lee,
Thanks for the help. I am just trying to get some pain relief which my pain doc doesn't seem to think he can help me with anymore. I just know I am in a lot of pain and just want some help and in order to get it I now have to go through my attorney because as I said my attorney and I think my pain doc has given up on me. Thank you and as I said to ali12 I will not use your name. Thank you so much for your help. You are so sweet and kind.

Sincerely,
Tracy(screwballpookie)
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Old 01-01-2009, 07:32 PM #4
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For me most of pain control is getting a good night's sleep and avoiding the triggers. The biggest trigger is overdoing things especially with the affected hand.

I take depakote that is supposed to suppress the emotional ups and downs but it really helps with pain.

Gabapentin is the same as neurontin I believe and this was like a miracle drug when I first took it but I was able to ween myself off for a few years and when I tried it again there was almost no help at first but the longer I stay on it the more effective it seems to be.

If you aren't sleeping well then get something for it; probably something like tizanidine.

Ultram helps a little with pain and I take one or another forms of it as needed. Tylenol 3 is great for all pain except the RSD and will often help with sleep. Try not to let yourself get into a panic. Tranquilizers or something like valium can stop panics.

You might consider getting a second opinion. It took years to find the right combination for me. The doctor who diagnosed me told me to be very leery of taking things that didn't help or that caused problems. He said RSD patients can end up on too many meds and that their interactions could complicate everything.

Try to keep an even keel.

Good luck.
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screwballpookie (01-02-2009)
Old 01-02-2009, 12:09 PM #5
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I want to thank you all for all the help as I see my attorney at 2pm central to see what he has to say. You don't know what this really means to me. I appreciate this more than anything. i really need this help. YOu all have been so kind and so generous. I will keep you all updated on my condition. Thank you!

Sincerely,
Tracy(screwballpookie)
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