← Return to CRPS - What to expect? How to cope / quell my worries?

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@karel

Nothing sounds stupid. It sounds like crps. I caught mine from shingles having it for 6 years. Its basically an automimmune. For me its burning, I also dont heal, doctors dont like to do anything invasive if you need surgery anywhere because it would activate it, and make the pain and burning worse. Some pain management doctors give Ketamin iv, which some people say helps greatly, but for me, it made me psychotic, and did nothing. Lidocaine patches do help. You might try voltarin gel, which is also good. Also aloe vera gel sometimes soothes the burning. You should also consider a lot of vitamin c to boost your immune system, some pain doctors may give a monthly infusion of vitamin c and lidocaine. If you take the vitamin C orally the best one is Drs best vitamin c. 1000mg. One only needs 50, but that wont do a thing. I take 2000mg a day. Yes you pee right out, but dr. best is the one they use and researched extensively for chemo pts. to up their immune system to fight off side effects and pain. ask your doctor. a good pain management doctor is I find the best way to go.
there are days that you will be able to function but not like you used to. Unfortunately until it gets better under control. you have to try everything. For me ice helped greatly but too much can make it come back stronger which is why the aloe vera get is great. There is one ointment that literally changed my life in a months time.TERRASIL OINTMENT. THEY MAKE MANY , I USED THE ONE FOR SHINGLES, BECAUSE OF THE BURNING, HOWEVER THEY HAVE ONES FOR BURN PAIN, ETC. WHAT I DID WAS PUT IT ON THE ARE ALL OVER RUB IT IN THEN ABOUT 4 HRS LATER PUT THE ALOE VERA GREEN GEL. WALMART HAS THEIR BRAND CALLED EQUATE YOU CAN A BIG BOTTLE FOR 4. 95. LAST FOR A YEAR, PUT THAT ON ALL OVER. I DID THIS AT LEAST 3 TIMES A DAY AND ALWAYS DURING BEDTIME. ITS ALL NATURAL, A FORMULA OF BEESWAX WHICH HELPS ON THE BURNING. YOU MIGHT WANT TO GIVE THAT A TRY. GOOD LUCK, THE TERRASIL TOOK AWAY MY BURNING FOR YEARS. I DO GET PERIODIC SPELLS, BUT NO WHERE AS PAINFUL. ALTHOUGH NOW I HAVE SPINAL CORD INJURY SO ITS BASICALLY LIDOCAINE PATCHES, AND THE VOLTARIN GEL, WHICH ALSO COMES PRESCRIPTION ONLY PENNSAID OIL. ITS VERY EXPENSIVE ITS THE ROOT OF THE VOLTARIN BUT STRONGER. YOU WOULD NEED A PRESCRIPTION FOR THIS AND HAVE THEM PRIOR AUTHORIZATION THRU YOUR PAIN DOCTOR.BECAUSE IT RUNS ABOUT $600 A BOTTLE IF INSURANCE DONT COVER, BUT MOST DO IF OVERRIDDEN GET AT LEAST 2 BOTTLES A MONTH. THAT ALSO HELPED WITH THE PAIN. GOOD LUCK HANG IN THERE, YOUR YOUNG AND YOUR IMMUNE SYSTEM CHANGES AS YOU GET OLDER. SO IT MAY JUST WORK ITS WAY OUT OR AT LEAST LESSON GREATLY.. BUT FOR NOW DONT PUSH IT. JUST TAKE IT SLOW.. I KNOW ITS HARD BUT PAIN IS TERRIBLE HOPEFULLY SOME OF THESE WILL GIVE YOU GREAT RELIEF. GOOD LUCK. THE TERRASIL YOU ALSO MAY FIND CHEAPER ON EBAY.HERE IS THE LINK.https://www.google.com/search?q=terrasil+shingles+burning+pain&oq=&gs_lcrp=EgZjaHJvbWUqCQgAECMYJxjqAjIJCAAQIxgnGOoCMgkIARAjGCcY6gIyCQgCECMYJxjqAjIJCAMQIxgnGOoCMgkIBBAjGCcY6gIyCQgFECMYJxjqAjIJCAYQIxgnGOoCMgkIBxAjGCcY6gLSAQ4xNjI0MTYzNDU3ajBqN6gCCLACAfEFchwL6f5AM2Q&sourceid=chrome&ie=UTF-8

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Replies to "Nothing sounds stupid. It sounds like crps. I caught mine from shingles having it for 6..."

Wow! You seem to have a lot of experience with this stuff. Thank you for all the tips, I’ve not tried a lot of these yet so I’ll definitely look into it. I do know things like ice and heat make my pain a lot worse like it makes it burn really bad (which was always strange to me but nothing about CRPS makes sense to me haha), but I’m not sure about the stuff you mentioned so I’ll look into it! I know medicine wise they gave me Amitryptiline and Nortryptiline which helped me anxiety and depression wise but not pain wise at all, so right now I’m unmedicated but they might put me back on something when I see a pain specialist. Thank you so much for the advice and kind words, I really appreciate it.

ALSO WITH THE ICE. I WAS ON ICE PACKS 24/7 ONLY TO FIND OUT IT MADE IT WORSE BUT IT ALLEVIATED MY PAIN WHEN I WAS ON IT. HOWEVER I AFTER 8 YRS. WITH LARGE AMOUNTS OF CRPS, TERRASIL SHINGLE OINTMENT AND ALOE VERA GEL. I STOPPED THE ICE, AND WITHIN 1 MONTH, WAS SO MUCH BETTER.