Rsd/crps Since 1993

Is there anyone who has had RSD/CRPS FOR A LONG ENUFF TIME TO WHERE IT WAS UNDER CONTROL WITH MEDS AND MAINTAINABLE AND THEN ALMOST 20 YEARS LATER IT GOT JUST AS BAD IF NOT WORSE AS WHEN I FIRST HOT IT IN 1993..I NOW HAVE TO TREAT IT LIKE I DID BACK ALL THOSE YEARS AGO WITH THE HEAVY MEDS AND ALL THE PAIN N POLITICAL BS THAT IS GOING ON WITH MEDS AND DOC'S NOW...ANY SUGGESTIONS ON DIFFERENT DOSAGES OF MEDS THAT MIGHT WORK BETTER THAN BEFORE THAT I CAN BRING UP WITH MY NEW DOC.

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Ketamine. Also, Gabapentin and Lyrica are facing litigation and may soon disappear.

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Conditions such as RSD/CRPS tend to be degenerative, so it can be normal for things to worsen, as you age, and for you to require more aggressive treatment options. Your body also gets used to medications, as time passes, and they can stop working as well for you.

What medications are you currently taking to treat your issues?

What new symptoms are you experiencing?

RSD/CRPS is covered pretty well in this article.

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I had it from extensive dental work in the same spot a good 12-14 years ago. Luckily it began with what seemed to be Trigeminal neuralgia, and went down my throat and into my stomach. But it stayed only there and was intermittent with many ER visits where they had no clue what that even was! I would feel a sudden explosive feeling in my stomach, go to my head, I would burn terribly, turn colors and stagger terribly! I was told by neurologist I had to ride the attack out. It was caught by him within weeks and gabapentin and cymbals were my only treatments. He said I had a textbooks case! After 1-1/2 years it finally left and never came back... but all these years I have severe fibromyalgia and CFS so severe it is one point off narcolepsy on paper. Since treatment is same, pulmonologist, after 3 negative apnea tests said he would classify it as EDS and I’ve been on Armodafanil for years. I actually fell asleep driving and always kept to back country roads but still went into many ditches even with a very short drive home. If at a red light, I bumped a good 20 cars till I got treated. Thank God my SUV has a huge rubber! Now at lights I put car in park, and I take lot of “unscheduled“ naps all day and all night if I sit down and read, go on iPhone or watch TV. I don’t even know it. I just go out! I do have a big lack of REM sleep. But the unGodly 24/7 365 pain which is unbearable in the morning that I cry for an hour or two praying and reading my Bible wondering how I can go on. No pain relief at all because only Oxy or Vicodin work and they are forbidden in my area! Kratom does help somewhat. My daughter thinks I may have whole body RSD because it’s so rare that it left, and when I was on narcotics I did get a one year remission from fibromyalgia which again is extremely rare! I went off narcotics after 9 months in 2016. But is back with vengeance!!! Interestingly, the beginning of fibromyalgia was exactly when I had a tetanus shot, 5 vials of immunoglobulin, and a rabies series within a week! Then I had a bad reaction to Shingrix shot #1. My rheumatologist told no more vaccines! Go to the website HealthRising for great breaking research. Research is beginning to connect dots... SNFN. And magnetic brain stimulation treatments that sound promising for chronic pain. And my rheumatologist had already told me a ton of misdiagnosis today. But in my heart, living thus nightmare, I believe it’s all connected. Viruses, Shjogrens? Etc. EBV. Other syndromes all may be involved. So happy reading because they have new stuff everyday. Also all of Barby Ingles books! She was treated by Schwartznan who pioneered Ketamine infusions. My daughters doc studied under him and gave her all her Ketamine infusions. Not much help.

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