Hello everyone. Im 33 and diagnosed with fibromyalgia end of last year. However I have been struggling with the symptoms since 2022. My GP has been great helping me figure this out and was even the one to first diagnosed me and get me started on some of the medications before my rheumatology appointment so maybe I could manage the pain. Everything ive tried only gets me relief for only about 3 months before we are upping the dose or stopping/changing meds all together. And the only thing that has ever worked is prednisone but cant stay on that long term. (Tried duloxeitine, savella, gabapentin, meloxicam, alpha lopic acid, coq10)
Today i had another terrible rheumatology appointment (only seen by the office 4 times and the actual rheumatologist 2 times) which basically ended with me getting dismissed from their office and told to follow up with pain management since I've already tried the 3 medication approved to treat fibro even though I asked about other off label things others in some of the groups ive seen has tried. She immediately dismissed them and me when I asked her to look into them before dismissing the options cause they arent on the "approved list" cause my body never follows the "rule book.".
And now im in a spiral cause of course this had to happen on a flare day and I needed to use a cane to walk. I just want to be pain free our at a manageable level of pain.
Id appreciate some words of advice or just some encouragement cause I truly left that appointment today at a new low (like I need a grippy sock vacation bad).