Well kind of progress. I actually went to my GP today and talked about my symptoms and she actually was the one that wondered if I might have axial spondyloarthritis she did not say "axial spondyloarthropathy" due to the migrating pain (I didn't even have to suggest it, she did). She then said it's time to be referred to a rheumatologist. And to be honest I forgot to tell her what specific blood tests I needed, but thankfully she has requested HLA-B27! Pheeewww! Thanks so much, Ryan for letting me know my GP is on the right track. I also realize I also get jaw pain, which I should add to my list when seeing rheumatologist. Do you get jaw pain just behind ear? I mainly get it when I touch that area, rather than feeling it all the time. Occasionally I will get it cramping or sharp pain there too.
Oh I noticed you said you have thumb and spine pain. In the last month or so I have been waking up with thumb pain (in both thumbs - no swelling) and this is what made me think I need to go back to GP (plus increased pain in body and increased fatigued) as it didn't feel normal to have this pain when I wake-up. Thumb pain dies down after I wake-up and isn't really noticeable during most of the day.
Sorry one more thing, do you get IBS and food intolerances issues (which I suffer from)? I noticed this doesn't seem to be one of the symptoms with axial spondyloarthritis.
I'd really love to know which dietitian you saw! Having heaps of trouble finding people who know anything about CFS or who can point me in the right direction with my cognitive symptoms. Don't want to spend a fortune on supplements that are non-specific, but have had a lot of success with turmeric so I'm thinking maybe more anti-inflammatories. Hard to keep on top of all of it to try new things. Hope you're feeling better than when you last posted!
I have pains a bit like what you mention, coming and going, but the rheumy I saw in Melbs wasn't very helpful about any of it. Only found tissue swelling (which she dismissed) and the inflammatory markers haven't shown anything, just the odd strange bloodwork. But pains come and go in the muscle groups and also joints - especially hands.
Have you tried going completely gluten free for 2-3 months? And that includes any derivatives that are often found in packaged products, condiments etc. Do you keep a food and drink diary to help find possible correlations between flare-ups and diet?
Have you checked for any food sensitivities or allergies? How about any malabsorption issues, e.g. SIBO, Candida, EPI, Chrohn's, celiac's?
And another area that is often overlooked is the sheer amount of carbs that are in the diet, which can cause systemic inflammation, pain, swelling, glycation of cells, oxidative stress, etc. Have you calculated how many daily carbs you are consuming? Have you tried getting into nutritional ketosis (0.5-3 mmol/L) and checked your A1c level to be 5.2% or lower?
Have you had a urine metabolite test done, such as the Genova FMV ONE or similar? Any nutrient deficiency testing been done?
Back pain is often a signal for issues that are not necessarily spine related. (In my case it was pancreas damage.)