@jabrown0407
I've been struggling with severe pain, high pain level comes in spurts and I call them "flare ups" and not sure if it's from my Hashimotos or I'm pretty convinced I may also have PMR. I've also had had the same crashing headaches my Mom had when she was diagnosed with PMR & GCR (GCR biopsy was good for her, so she was ok with that and no blindness occured).

My SED rate has fluctuated up slightly now and then, not anything "significant" according to my primary and my Rhuemy (thanks for that, great shortened term for them!). My Rhuemy is the one who found the Hashimotos when she was testing for RA, Lupus and other AI's. She listened to me and now we're scheduling ultra sounds of my shoulders and hands (shoulders are the WORST) pain area for me. To check for PMR and RA.

What complicates or I could say "muddy's" the waters with a diagnosis is the fact I have multiple herniated discs in my C-spine as well as my Lumbar, plus pretty significant degeneration. My Spine doc agreed with me when I said I have a feeling my disc is pinching the Ulnar nerve because the pain radiates down to my elbows and pinkies, the pain jumps from one shoulder to the other, from one hip to the other, both hands and both feet typically hurt on the regular. Always the worst in the morning and at night after I've been sedentary for longer than normal during the day.

Movement 100% helps gradually reduce the pain level, hard to move a lot when the pain level is high but I'll force myself. When it's moderate, which can go on for weeks at a time, I can move easier to reduce the pain level since I've become kind of used to it.

I've been Gluten Free and almost completely dairy free (maybe couple tablespoons of creamer if my gut allows for coffee or tea, often it does not). Today I had to kick my daughter out of the bathroom to throw up, comes on quickly. I'm visiting her in Florida, noticed my pain level has been better, I have a feeling its the warmer weather. I love the cold and skiing, it's my passion in life, besides cooking and being outdoors in general. I sound like I'm creating a dating profile, lol, I'm not!

This has been a 3 year journey, first diagnosed with SIBO in 2022, then with Blood cancer in early 2023, my Hemoglobin shot up to 18. Had the BMBX done about 9 months after my PV diagnosis and my hunch was right, I do NOT have blood cancer. We still do not know why my HG went up or why I consistently have rather high levels of pain in various joints. I suspect it may be connected with the Covid vaccine, possibly?

So I'll see what my ultrasounds tell, if there's significant inflammation and I can get back on a dose of steroids to help nip it, I'll be happy. I can't take ibuprofen for a week before the tests, going to be a rough week since that's my pain med of choice besides the Tramadol (I'm ok to take that thank god since it has acetaminophen and not ibuprofen, with codeine), I just don't like to take stronger pain meds if at all possible. They actually hype me up and I don't sleep well, I've got wicked ADHD so I think that contributes to them hyping me up. Opposite of what opiates do to most people and I thank God I don't have the "addictive" gene in my brain. If that makes sense.

Thanks for listening if you had the patience to read all this, it's been a very frustrating 3+ years for me and feeling like my family thinks I'm faking everything for attention. I've distanced myself from them for a bit and rely on my best friend and cousin to keep my sanity. Nearly constant pain kind of gets to you after awhile and with no diagnosis for the levels of pain and my hemoglobin ticking up out of normal range, is frustrating beyond anything I've experienced.

The Mayo forum has been invaluable to me, thank you to everyone who contributes. I have always believed in, it takes a tribe, you're all my tribe - thank you.

-Wendy