Magical Truthsaying Bastard Shadesong (shadesong) wrote,
Magical Truthsaying Bastard Shadesong
shadesong

Fibro stuffs

Being as I am a highly visible person-with-fibromyalgia, I am often asked for coping tips. And I end up starring the messages for later reply, and not getting around to it. (I'm terrible about that.)

And recently, on Facebook, someone replied to my sympathy for her pain with "does it ever get better?"

I guess this is why I never get around to answering these things.

Because really... if it does, I haven't seen evidence of it yet.

This is what chronic means. It means forever.

And omigod that sucks. Oh, it sucks. And I want to say "Yes! There is a magical cure!" but really, there is not. Really, no matter what people do to treat it, no one's cured it yet.

So I can say the same things everyone says everywhere. Get enough sleep, that's the big one. Exercise, but not too much, but you may not know how much is too much until it sends you into a flare, and the amount that is "too much" shifts on a daily basis - you will never know where that line is, or where it's going to be. Quantum pain management.

Figure out which things you just can't do, and make sure your SO or roommate or whoever knows you can't do them and why. (For me, the biggie is laundry - I cannot carry the laden basket down three flights of stairs. Ever. It's Too Much for my arms and for my legs. Hell, some days I can't do stairs, period.)

Figure out which things you can almost do, and reconfigure your life to make them easier - stuff like rearranging your kitchen so you can get everything you need without bending or lifting.

Try different things. Arnica works well for some people. Try dietary supplements like omega-3s - I have specifically engineered my breakfast to include maximum amounts of fruit, fiber, and omegas.

Comorbidity. That's a fun word. It means that if you have fibro, it's statistically likely that you'll have things like insomnia and/or IBS.

Get enough sleep. Seriously. Two of the most common triggers are sleep deprivation and stress.

Get massage, but only from a certified massage therapist who know how to deal with fibro. Pressure on a tender point can result in a systemic flare.

Lots of different medications are used to treat fibro. What I'm on right now: Lyrica (also treats the epilepsy), Robaxin (muscle relaxant), Celebrex (anti-inflammatory), Lunesta (knockout pill). This keeps my pain level at a 5 and below most days. (No, it is never a zero. My baseline is 2 or 3. Some people have seen me at an 8 - not many. No one but Adam has seen me at 9. If I'm out and about, I'm at a 6 or under.) Fatigue-wise... well, fatigue's a side effect of most of these medications. So I have the natural fibro fatigue, then side effects. I'm never not tired. I drink a pot of coffee a day just to keep up.

See, this is why I put off writing about this stuff. It's kinda a downer.

So yes. This is what chronic means. Chronic means pain and fatigue forever; it means you have to kiss a lot goodbye. Everything changes.

Try everything. Try different levels of different meds. Take baths. Get professional massage. Get sleep. Explain fibro to people around you so they know why you can't always dance. Do what you can, because if you stop everything, you'll be even more depressed. Do a lot of reading - be an informed patient. If you find something that works for you, tell the rest of us! Because yeah, this sucks, but at least we're not entirely alone, especially in the internet age. Be practical. Take care of yourself.

Any other fibromites around here have tips? I'm fibrofoggy + foggy from my antibiotics today, so I'm sure I've missed lots.


(currently a 6, mostly deep muscle aches. yes, this really is like having a flu all the time.)
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