Hi White Rose & Quercus,
Hope u don't mind if I respond to both at once. I am feeling a little overwhelmed at the moment as my moments of bravado are starting to wane, as my first psych appt in 2 months approaches on Thursday ( usually fortnightly)
Anyway just had to respond as it seems we three have so much in common. White Rose Fibromyalgia is hard to diagnose as u would know, and hard to treat with probably the best outcome being managing the symptoms during the worst stages and taking advantage of the better days.
At one time it was thought I had that too but it was later found I had Complex Regional Pain Syndrome. This is usually as a result of trauma and as it is primarily related to nerve damage also very hard to diagnose. At my worse I couldn't tolerate the feeling of a cotton sheet on my body such was the intensity of pain. In short the pain signals going to my brain were a bit haywire, and were not in direct response to actual pain.
Again as it was not something you can see as such , even though I did have rashes and swelling of limb, it was hard to be taken seriously until I went to a Pain Management Specialist. This was really the start of a very long road to relieving my physical and ultimately mental pain. I wonder if this may be an option for you ?
In my case it was a process of elimination. I tried implants, nerve blocks, tens machines , hydro therapy, medications, pretty much anything there was. Eventually in tandem with these treatments was the necessity to understanding my pain. There are some very good books out there about managing and/ or understanding pain.
Quercus like you I have had food issues not as serious as yours but I think White Rose's suggestion of a dietician may be of help to you in understanding food in relation to your condition. Again the mind plays such an important role in our response to things. If we think we have to deprive our self of certain things we immediately approach with a negative mind set.
If we look at the changes we have to make as a challenge or new experience , we have a chance to embrace it and not dread it. Easier said than done I know.
Sorry I'm rambling but I am trying to distract myself too as I feel I 'm beginning to unravel a bit . Totally lacking in sleep - maybe 2-3hrs a night since stopping meds, and don't want to start on sleeping tabs. Losing objectivity about what I'm trying to do here.
Hope u ladies feeling better