I have medications that help most of the time – most – but they usually leave me fuzzy, especially since I’m supposed to take at least one of the three pills in the morning. The “reverse arthritis” thing still works – standing and walking alleviate the problem as long as I’m… well, standing or walking.
And there are some things that pretty predictably set it off. For example, alcohol – specifically margaritas, wine, and some beers – will often get it going within a half-hour.
But probably the worst is changes in barometric pressure. Like the graph I pulled up fifteen minutes ago. The initial spike at one am was the first time I got woken up. I putzed around for a while, then got back to sleep.
Only to have steadily increasing pain from four onward, not only in my ankles, but also in my wrists. Yay.
I’ve not had the pure presence of mind to do completely meticulous record-keeping on this; that said, there seems to be a correlation between the delta of barometric pressure (not direction or absolute value) and how much pain I’m in.
Fun fact: It’s how I learned that fronts (and pressure changes) are not the same thing as clouds and storms – the pressure can change prior to rainclouds arriving.
Anyway, the more rapid the change, the worse I am. And the symptoms have been getting slowly worse over the last decade. But I’m starting to wonder if maybe treating RLS (while mostly effective) is because everything else gets blunted. We’re learning that there’s a sensory system in the skin, that our bowels impact our brain function, and puzzling disorders like fibromyalgia are starting to reveal their secrets.
But there’s a bit of hope from stories like this one from that last link:
Carolyn DiSilva of Maynard, Mass., one of Oaklander’s patients, says she was stunned to learn that she had small-fiber neuropathy caused by an overactive immune system, instead of fibromyalgia.
“I think a lot of people, they get a blanket diagnosis as fibromyalgia because doctors don’t know what’s wrong with them,” says DiSilva, 47, who has suffered from unexplained pains for about 14 years.
But it’s going to be a long, long slog to figure out what the heck is really going on, especially when so many of the primary symptoms overlap.
Acupuncture helped a bit (it was worse for a day or two immediately after the treatment, then got better for a while), but was really prohibitively expensive. I’m not at the point of doing an elimination diet, but I know I’ve got to do something.
And so the first step has to be collecting information to take to my doc. I know some of you who read this have your own hard-to-diagnose chronic problem, or know someone who does.
- What information is most helpful for me to gather?
- Where should I start? My GP? Or just start with an allergist?
- Any reputable guides you know of out there on the interwebs? (I keep turning up just overly broad ones or outright quackery)
- What helped you get to a good diagnosis and treatment quickly?
- What got in the way?
It’d be great if you could comment publicly so that others with similar issues can find your suggestions, but message/e-mail me if you want to keep things private.
1tl;dr – when I was diagnosed that was the first time I heard about it, the sleep lab seconded my GP’s diagnosis, I’ve been experiencing it since I was in grade school so it’s not my weight, thanks, and I experience it as pain, thankyouverymuch