Oh Bram!
Hey, what do they say, no pain no......pain lol. I think you did ace, even though I'm totally sympathetic with how crap you felt after. It's totally naff that. It's the down time that bothers me the most. I am still laid up now! I've been tootling around the house but I feel totally and systemically sh*te.
God knows what is to blame, but yesterday afternoon that all over ache (with the horrid crick in the neck and aching muscles everywhere) got added to with the worst migraine of my life. I've had the worst stomach cramps too, those slow waves where you can feel it tightening and it hurts. I was sick in my sleep too, more of a minor reflux than anything but I seriously thought I would end up in hospital last night. I am sat in bed now with sunglasses on as it hasn't gone away yet, although it's a lot better than last night.
The title of this thread wasn't really a "My life is over, woe is me" thing, it was more a query, which I failed to word in the post. What do I do next? I have talked with Baz this morning and we both think I should see a rheumatologist as we feel there's something bigger going on behind the CRPS and back/IBS/migraine/memory problems that's getting overlooked by the CRPS and "lower back pain" diagnosis. My pain doc won't even look at a list of my symptoms as he says diagnosis isn't important in pain. Well it is if you're frightened to death lol.
My big sister has been seeing a rheumatologist for her aches and pains and she has been diagnosed initially with palindromic rheumatism and now is under investigation for hypermobility and an underlying connective tissue/autoimmune disorder. Three close relatives (mum, dad, twin sister) have been diagnosed with type 2 diabetes (not weight related) in the last year, something I definitely don't have but another autoimmune issue. My other sister has Raynaud's. I tested positive for smooth muscle antibodies, which from what I've read links mainly to autoimmune hepatitis, which I don't have, but links say it relates to other issues too, they just don't say what they are lol.
Putting the autoimmune side of things aside, I think some sort of ANS problems are a big possibility too. The problem is so many of these issues overlap with others. One doc said I would have a diagnosis of fibromyalgia as well as CRPS if I'd had more widespread issues, well I do, they just haven't taken them into account as everyone, me included, has been more focused on controlling the pain. I am scared to death of this fainting and these days where I just feel so bloomin' unwell all over, not just sore. My dad had a stroke at 40 and nearly died so I am getting myself worried about stuff - high cholesterol and blood pressure run on both parents' sides despite them being very fit, healthy eaters and active - not smokers, etc. I am big, a smoker and because of the pain I'm not as active as I want to be. My blood pressure had been generally low for years until recently when it has gone up to the higher end of normal. I have slightly raised cholesterol. I find it really hard to lose weight because even though I eat well I don't get enough exercise. I gave up smoking for four years and plan to again but keep putting it off out of weakness!
Maybe I just need a toe up the backside. Boot camp perhaps lol!
The plan is to see the GP this Friday, see if he will consider putting me back on my migraine meds (propranolol) and possibly amitriptylene for sleep/pain. I know it didn't work wonders for pain last time but it did work for sleep. The benefit of the propranolol works twofold as it would prevent my migraines again, and it would lower my blood pressure a bit as it's a beta blocker. I also want to get a referral to the wheelchair service (seeing as OT haven't rung back) and a rheumatologist, perhaps the same one as my big sister sees. Does that sound like a plan? If he won't touch the pain meds he has to surely sort the rest at least?