Wish I'd had the Fibroguide when I was diagnosed! I can't believe it took this long for a doctor to share it with me.

Here are some of my fibro coping tips :) if you're interested.

Stay warm. Years ago I noticed the cold aggravated my trigger points something awful - get a space heater for your bathroom when you shower and keep the room warm. Dry yourself before you get out into the room. A lot of folks enjoy the zing they get stepping out of a shower and letting the cool air hit their skin but it makes my triggers seize. For this reason I typically don't do hot tubs either... I wear a lightweight scarf every day. Fashion statement? No lol it's actually functional. Living in LA the weather changes from cold to hot from morning to night and entering the heavily air conditioned stores, offices, gas stations, from the heat is a drastic temperature change. Doesn't matter if I'm wearing a tank top because I have the scarf to cover my trigger points. Shivering is the absolute worst thing for me. Another reason I wear the scarf is that I stopped wearing a bra three years ago. Granted all my bras were wonder bras...as they wondered where the boobs were...ba dum bump, the underwire of the bra dug into my tender skin, no matter how I was fitted. After taking it off I realized its just my body. I speculate Costchondritis is to blame. My skin always feels bruised to the touch just under my breasts, so I go braless and the scarf does double duty keeping me warm and helping me stay discreet lol.

My worst triggers are in my shoulders. Often people try to be kind and massage my neck. Unfortunately it often just takes an unexpected touch to make me flinch and flinching leads to seizing. Communicate with the people closest to you how to and how not to touch you. This was especially important with my kids cuz they want to jump and hang on you. It's so hard when ur cuddling in bed for a story and ur baby's head is resting somewhere that hurts, so I move him or use a pillow. I get myofascial pain flares in my skin. My whole arm/leg/back can be fine except one spot that moves around lol lil f@#ker ;-). So if someone is rubbing my arm and brushes that spot it screams lol. It's hard but I've learned to just point out the area and say, avoid this space and people do. Amazing ;-). Communicate!!!

If you get massage and feel good after, great, if the massages you get hurt for days after...communicate! Any kind of extreme pressure or shiatsu type massage messes me up so when I go to the cheapy massage place I tap my shoulder when it's too deep. Hissing also works but it tends to take away from the massage ;-)

If you can afford the expensive massage, look for someone who also does reiki. Whether you believe in reiki or not these masseurs tend to be more gentle, in my limited experience lol. If its a mate etc, teach them how you like to be touched. I like a sensual massage, just gentle skin rubbing, seems to calm the savage beast that is my pain. Intimacy. In all forms. Be it loving your family, friends, extending kindness to strangers, sex sex and did I mention sex? Lol kissing, or I'd go as far to say making out. Intimacy produces endorphins and euphoria in many cases. Take every good feeling you can get.

Get a good pillow. Buy as many as you have to to find one that works for you. My mom got me one of those tempur pedic and I can tell the difference when I sleep without it. Yes I tend to travel with pillow and blanket lol. Last one's a big deal. Avoid negativity in all forms as much as possible. The news, gossip, petty arguments, road rage, lamenting...they all suck the life from you. It's hard enough to cope with your body betraying you, don't let your mind do it too. Think good things. Above all think, I may feel bad but I've felt worse (cuz you know you have), I'll get through this and then go distract yourself with something good.

I wrote the above 5 years ago (it was just in my fb memories this week lol) and my life and symptoms have changed a lot thanks to diet and perspective. If you're interested you can find more of my coping stuff at www.goingbeyondcoping.com

/r/Fibromyalgia Thread Link - fibroguide.med.umich.edu