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Old 04-10-2012, 11:31 PM
Imahotep Imahotep is offline
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Join Date: Feb 2007
Posts: 606
15 yr Member
Imahotep Imahotep is offline
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Join Date: Feb 2007
Posts: 606
15 yr Member
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Quote:
Originally Posted by crpsisnofun View Post
Thanks for sharing Nanc! I appreciate your time and caring to respond. It seems that it complicates things that there is no commonality for everyone in symptoms or in treatment. I am happy to hear that you found what works for you. I can't wait to get to that point. I have had more bad days in the past two weeks than good. It almost is as if meds aren't helping at all now. It's nice to be able to hear from people like yourself that really do understand. BTW, I cannot imagine living with this for 20 years! You deserve some sorta of a metal of honor! I am not even at one year mark and I just can't see how I can do this much longer. Many thanks and lot's of well wishes to you!
For now work on getting cured and secondarily getting relief. I know this sounds quaint but you can control the pain a lot by not thinking about it. It's like a little piece of your mind is always dedicated to actively not thinking about it.

Try to start medications one at a time. A few will have bad side effects or conflict with other medications. Some are best to take at night and some in the morning. Always ask the doctor before changing but generally they won't care. Some like gabapentin/ neurontin might keep you awake so don't take it late. Some promote sleep so take them at bedtime. You have to find what works and we're each different. There are likely a few different diseases which are all called RSD and individuals and cases vary.

Be careful with medications too. The doc won't always warn you before Rx'ing something. One doc putme on 5mg of methadone but when I told another doc that I was going to start with a half he suggested a quarter and a laxative. It's a good thing I delayed. I prefer to avoid reading the precautions and side effects since that seems to influence me a little but do talk to people or google it first. Some of the medications can be disaster. There was one that made me feel like I was about to fall all the time and falls were a major side effect so I stopped it.

Find your triggers and try to avoid them. This sounds quaint as well like the old joke "doctor, doctor, it hurts when I click my fingers". Doctor: "Don't click your fingers". There are many things that can affect pain levels and getting control over them takes pressure off your poor overtaxed nervous system. Loud noises, bright light, stong odors, heat, cold, and raucous noise generally hurt us. Avoid noise, wear sunglasses iff necessary, wear extra clothing on affect area if it's cold. Watch your diet. Sodium nitrite is very hard on me. Too much salt or too little can affect me. Most people find eating smaller meals more often helps. Eliminate or cut back on caffeine. Avoid stimulants of all sorts. Control is key for me. So long as I feel like I can control my enviroment and stress is low I can function fairly well.

Sleep is critical. Every night we heal while we're sleeping and start the new day in better shape. There are several things that can keep you awake but talk to the doctor. Tizanidine stops my tremors which keep me awake. Buit then I have various other medications I can use when needed. Tramadol APAP is one of the few pain killers that has any effect at all. This is the problem with this disease; pain killers usually have no effect. I woke up from a hernia operation screaming bloody murder because my hand hurt and it took 20 mg of morphine just to shut me up and it had little effect on the actual hand pain.

Don't give up. I confess I do get bored sometimes but there's still lots to keep me occupied. I work as much as I can and this seems the best thing I can do for my condition and my state of mind. Work just makes the pain float away as long as it's not overdone.

There's usually considered a two year window during which cures are fairly common so you just might kick this completely. Don't forget it can come back though. Good luck.
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