Hi Nell! Welcome. I've found that this forum reminds me I'm not alone. Some posts have really inspirational thoughts or some funny joke to make me smile. I, too, have the pain in my shoulder/upper back and lumbar region as well. I was getting PT but didn't feel much improvement (which makes me think the pain is fibro related, not actual muscle dysfunction). The stretching definitely eases the tension and the strengthening releases endorphins that help mood and energy, so I recommend any movement you can tolerate. Yoga and tai chi have been studied with positive results on relief of fibro symptoms. I live on my heat and ice packs. It's just now starting to get to the point of impacting my work. Tomorrow I have my 8 hour shift which I always dread bc my body can't handle 8 hours. Last weekend I went in 2 hours late because I just knew I couldn't handle 8 hours. I cant do that 2 weeks in a row so I need to just push myself through the best I can.
I'd say the majority of people I talk to about my fibro don't "believe in it". Honestly, I didn't either until I felt it. And I don't think my family and bf believed it at first either. But now that I'm having another flare, they realize it wasn't just a one time thing, me making more out of something than it was... that this is real and I am uncomfortable. I'm not just being a baby! When I told my neuro (for epilepsy) that I was diagnosed with fibro a few months ago he rolled his eyes. the response was so.... disbelieving that I didn't know what to say after that. He said he has no idea whats causing my pain but based on all tests, it must be benign so don't worry about it, as long as meds are controlling it to a tolerable level. So funny that he can't explain widespread pain but refuses to believe that a condition like fibro actually exists. Funny.
My brain fog has never been so bad as it is this week. I've been walking in circles, get up to get something and forget what I was doing, put something down and forgot where, and I'm that type of overly organized person so it drives me nuts! I often feel like people just think I'm a hypochondriac, but those who matter, those who know me better and SEE how its affecting my life (my therapist of 3 years just suggested I think about antidepressants), they know it's real.
Sorry this turned into a bit of a vent session! Bottom line, you are not alone. I wish you better days ahead and peace of mind!