Questions from a newbie member about what works?

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tinalynnbrown66

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Apr 27, 2022
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Hello Everyone,

I'm a new bee to this forum, it's great to have a place to come and ask others who suffer from Fibro questions or read their struggles. I've only had it for 6 months now and it's getting worse not better! My Son is getting married this weekend and I want to be sure I'm not in major pain. What medications, over the counter or prescribed works best for you? Is there ever any relief? I can't curl my hair, taking a shower is a chore and I haven't slept in my bed in months! They have me on gabapentin and advil. It doesn't seem to help? I've taken the others that they prescribed those didn't help either. I guess I'm just looking for some positive news that I will find some relief? Any suggestions?
 

JayCS

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Hey Tina Lynn and welcome in! 👋

"had it for 6 months" means since diagnosis or really just that you've started getting any pain?
It all starts a bit different for each of us, but usually a bit of build-up (in my case 8 years of Ache & sleep problems in waves/flares till my total crash, a continual full flare, only counteracted by intense self-care, loads of physio & supps). Whatever: Although it isn't directly a "progressive" illness, it can get worse from that build-up, wrong or overdosed meds / supps / physio, not pacing / self-caring enough, co-morbidities, aging and interactions of all these...

The meds I got prescribed harmed and didn't help, self-/care & pacing did first, then finding the right kind of physio for me, then after a pretty long search supps which helped a lot, allowed me to work a bit again & 'play' more. Seems similar to many of us. So the relief can come, but only if we're either very lucky, or we focus on proper self-care, trial the >100 treatments types.

Curling hair, showering and sleeping are three example areas to target, especially if they are important to you.
Curling hair I couldn't know, but if it's anything like blow drying, I could: I need to do it in stints of several minutes, using task-switching, and perhaps also doing arm stretches in between. It's long holds or slow movements that are hardest for me.
Showering I keep down to usually under twice one minute. Clothes off and on I've improved thru stretching all relevant body parts (well paced short stints regularly throughout the day).
Sleep is one of our toughest, but important basis for everything else: After sleep lab couldn't help, I first targeted more than 30 "wakers" (good sleep hygiene goes without saying, but hardly helps), put a thin soft topper and lambskin under lower back and thighs and use stretches, acupressure, trigger points, massage gun, hot water bottle and arnica cream for any pains, Ache, cold etc. that crop up, after long term intense expert acupressure got all localized pain down, couldn't get herbs & supps to help, but finally GABA & overdosed passiflora did. Plus a 1 minute cold shower before bed helps get pain & brain down, if not cold, then alternate or warm.

For something like a wedding there's no short-term simple "pill"-type solution, except you could try a booster-supp like D-ribose.
Essentially the eustress will hopefully increase your body cortisol so you'll feel less pain on the day,
but you can probably only stop yourself from crashing into a severe flare a few days later at the latest if you don't let that excitement prevent you from self-caring, i.e. pacing, taking long breaks away from the others, not "doing" anything special, keeping away from all your triggers, incl. food...
 
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