Hi Alan - No reason at all to stay away; we're all happy to have you here. It's normal for us to try to see fibro-my-algia as pain-centred, after all it's called that and it's vague enough for us all as it is. But if you are interested in the idea that it still seems something like fibromyalgia we often (have to!) discuss similar issues like central sensitization, small fibre neuropathy etc. on the neurological end and autoimmune stuff too.
theory that there is some sort of continuum of auto-immune illnesses and that I fall somewhere in that category if not clearly in one or the other.
Quite a few of us think that finding subgroups might in future explain our differences and co-morbidities, at least I do. And the other day I actually had exactly the same thought as you here, that there is possibly a continuum from neurological to autoimmune diseases causing invisible chronic pain for a variety of reasons which may be interacting. So if were controversial here - it isn't - I'd be "on your side", apart from me not "believing"
anything, it's just a question of opening possibilities and probabilities to be able to act upon them to find things which improve our lives.
The only thing is that most of us do have a lot of pain, so we will of course be talking about that too, but it's not our job to dispute your diagnosis, but to share and help with everyone who feels they belong here and can gain something from it and perhaps give something too.
We'll try not to stress you, but please accept our apologies if it does happen and try just to accept that we aren't doing this on purpose, but from our point of view, which is very pain-centred. It will help us & you if you remind us, esp. when asking a pain-question like this one.
In that sense for me it's still intriguing how your rheumatologist came to make your diagnosis and why you feel it's right.
Now I know where you're coming from, I'll reformulate what I said above: I've got all my pains pretty much under control, with a lot of regular treatments, the Ache still remains, but if I pace well, with lots of rest, not too much either. For this reason someone elsewhere has disputed that I have been in a full flare for 1.5 years. Until she realized that it is only because I lead a very fibro-centred life, 2-3h of self- and expert treatments per day, and that still isn't enough, and still 10h/w of work is a bit too much (50h/w 2 years ago). Now that cdve been frustrating for me to see how my efforts to keep the pain down without meds were not seen. But I argue and try to convince, and if not then I try to adapt my language so I'm understood, i.e. I wdnt any longer say I'm in a full flare. It doesn't really matter. It's communication. In your case you can perhaps help us to understand why you feel you have fibro and how we can help you, but it's not necessary. Just be patient with us. We're all in one big boat.
The rheumatologist who diagnosed me with Fibro is certainly not who I want to speak to.
Me neither with any of mine (2 + 4 in the clinic). ;-) My sleep lab psychiatrist will probably be the right one for you, he's the only one I know who can think outside the box, which is what I need, and you praps too. He even thought about if I might be able to influence my bladder pain, by telling me how the muscles there work (involuntary), which gave me clues how to get it down.
On the other hand if I had brain fog and tingling, plus some pain, I'd be off to at least 2 neurologists to check if they can find anything.
Whether brain fog, which I may be suffering a bit more from now, is fibro or not doesn't interest me in the least, because that doesn't help me cope with it. I compare it with ADHD (some slightly silly researchers even "discovered" "40%" of fibromites have ADHD
) which means all their coping skills may help me, like using tokens etc. for focusing. And like Jemima says brain supps, whatever the condition...
