Hi everyone❣️I'm Xindi and I'm self diagnosed PN. I've been suffering with it on and off with it moving around my body, for 3 years...but the past 4 months...it has gotten incredibly worse...pain 24/7. Tried chiropractors, Chinese medicine...no pain relief. Had lots of test (CT, MRI, Gastric and Colon Endoscopy, Nerve test, etc) The doctors tell me anything..."it's from old age", "bad posture" to "There's nothing wrong with you." They even took blood test to see if I'm really having pain....Doctor said "the test shows you have a lot of pain". Duh! So, next came the drugs; every Nonsteroidal Anti-inflammatory Drug on the market, a variety of anti- depressives and Lyrica.
None of them relieved the pain, so, no sleep, and pretending to be "Ok" at work... which lead to canceling my classes (I'm a fitness instructor), and losing money! Then a week long stay at an University Hospital with more test, ineffective drugs, no sleep and the same old diagnosis..."There's nothing wrong with you". So I tried Chinese herbal medicine, grounding, yoga, magnetic therapy, acupuncture.. I even tried MMS, CBD oil, Oregano oil, ....but this burning, buzzing, pulsing, electrical pain is still kickin' my butt everyday. I'm using my own detective skills to find a way out of this pain. And I think I found it! My younger sister (58 years old) recently had to be hospitalized for a shingle outbreak. And I just remembered that we both had chicken pox at the same time back when we were in Elementary School. So using the internet, I discovered that there is a herpatic PN! Maybe that's what's kicking my butt. But I have no skin issues!? Anyway, the best treatment for it (internet info) is vitamin C and B12 overload. I found a Health & Beauty clinic that offers vitamins (C, B complex), ALA, Gultatione intravenous treatment for PN! I went two days ago and I'm starting to feel better! The pain decreased in intensity, from level 9 to 3, on a pain scale 1 to 10) I dashed to the drugstore and got the oral versions and I'm taking 2,500mg B complex and 2,500mg C a day, plus a general multi-vitamins and mineral, and a body builder supplement called "Aminoguts" which includes arginine, creatine, valine, leucine and isoleucine and 1 dropper of oregano and coconut oil mix (3X/day). And I'm going to do another intravenous treatment next week and every week until the pain is gone. I'm sleeping thru the night now too! So, I'll keep posting my progress.
Anybody living with ankylosing spondylitis pain? Need coping advice.