See profile for most of my information. My last rheumatologist treating was treating me for Rheumatoid Arthritis and Ankylosing Spondylarthritis with Lyrica, Celebrex, Sulfasalazine for 3 years, and the pain has totally escalated out of control as Dallas heats up. I saw a new rheumatologist today who discussed Fibromyalgia with me today for first time by any doctor. She stated that she has never dealt with an HIV+ person, POSSIBLY misdiagnosed with RA/AS, and she is going to have to research. I am hoping there is someone out there like me.
My med list includes Soma (muscle relaxer), Ambien & Temazepam (alternated nightly for sleep), Lomotil (chronic diarrhea), Viramune & Truvada (HIV meds), Marinol (appetite), Valium (stress from the pain), and Percocet (started for peripheral neuropathy). My percocet use over the past few years has dramatically increased due to the non specific body pain I feel in most of my major joint areas, including in order of pain are: back, neck, knees, shoulders, hips, hands, feet over the past few years. Pain is soothed with heating pad, but at time it feels like I am being stabbed especially in behind my knees. I have these "flares" that are unpredictable and at time bring me to a complete standstill.
Due to my HIV, I am unable to take arthritis medications like Enbrel and Humira, so we cant 100% confirm or deny the RA/AS diagnoses. However the more reading I do on Fibromyalgia, I can relate to it so much more.
Does anyone know if RA/AS type symptoms interact with HIV to instead create symptom list that fits more in line with Fibromyalgia. Has anyone been incorrectly diagnosed with RA and/or AS only to find out you have Fibromyalgia? Does anyone have a dual diagnosis of Fibromyalgia and HIV that can point me to some layman termed studiies? Any help would be greatly appreciated. Open to questions.
Additionally, despite my low weight and height/frame size, I also have sleep apnea for which I use a nasal CPAP at a pressure of 12 to 14, as I used to actually stop sleeping during the night. I rarely get a "good nights sleep" unless I sleep for like 14 hours, and I am currently being evaluated for RLS.
Friend, you are not alone in this supposedly modern world where the unexplained is supposed to be explained and understood, medically speaking. Your description of pain is very close to what I experience and have for years, heat and warm water soaking does bring some relief to me too. As for medications I remain uncertain about taking narcotics because of addictive potential and side effects (constipation) and I do not take a liken to withdraw symptoms very well. If you’re taking Percocet for years then I wonder the dosage and if mixed with Acetaminophen as I believe this helps to prevent drug abuse. If straight Percocet, (Oxycodone) for years then I hope you are not suffering from drug addiction.
There is a specific test in determining if someone has RA, so there should be no confusion whether one has RA or not. Same with HIV. Unless there are exceptions and based off what you describe, there are.
I wish you to find healthy solutions in ridding the pains and be able to live a wholesome life.
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