come on down to the Mermaid Cafe

An acquaintance was recently diagnosed with fibromyalgia and was looking for “tips and tricks” for dealing with it. This is the list that I’ve come up with.


1. Remember that the pain is real. THE PAIN IS REAL! Even if there isn't a known cause.

2. I searched far and wide to find a way to track my pain. The best I came up with for me was this app. Now I mostly use it to track when I take my PRN meds, but it is still super helpful. http://fibromapp.com/

3. I have to take it easy. I have to schedule downtime into my life. I can't just run and be interesting all the time anymore.

4. HOT baths help me. Heating pads. Occasionally, ice packs to my back (when the pain is super tight muscles).

5. I have a Massage Envy membership and, usually, get weekly 90 minute massages. I "like" deep tissue, myself. DEEEEP tissue because my upper back tightens into a wall of pain.

6. Be gentle with yourself. You aren't where you want to be with your body, but it is what it is and you have to work with it the best you can.

7. There are a lot of *things* that I get that help. I have several types of back roller that can help me. I have yoga toes thingies (like this https://www.amazon.com/Original-YogaToes-Sapphire-Stretcher-Separator/dp/B002SPV068/ref=sr_1_1?ie=UTF8&qid=1503193802&sr=8-1-spons&keywords=yoga+toes&psc=1) that help relax my feet. I am well aware that much of chronic pain relief involves spending money. I am aware that that sucks and is massively unfair and unjust.

8. I try to make my life easier, when I can, with things like a housecleaner for the bathrooms and floors. Or using instacart for grocery delivery most of the time. I’ve had to work towards being ok with eating out/ordering in more often than I cook.

9. I am now using a fanny pack (I found a not ugly one) so that carrying a purse doesn't put my body off-kilter and off balance.

10. I got a permanent handicap placard (takes a form from your doctor to go to the DMV).

11. Let yourself get mad, angry, etc when you do. But also, let it pass. Forgive yourself.

12. Accept help when offered. Ask for help when needed. Be okay within yourself needing help.

13. Yoga *really* helped for awhile. But then I had some mechanical issues (meniscus tear). Now I'm not in a place where I can do it, but hope to get to it again. That's okay, too. Yoga is not the panacea that others seem to think it is.

14. Listen to your body. There was a time my lower back hurt. A lot. Maybe it was perimenopausal cramps or maybe just my bad luck. But I sat on the couch with it for days. Ended up being a UTI that turned into a kidney infection. Oops.

15. Find a friend that you can vent at on days that suck. Another good friend of mine has ended up with a fibro diagnosis and we often just bitch at each other on messenger about the suck that is fibro. Neither of us are trying to cure the other one here; we just want to vent.

16. It’s okay to fire your doctor(s) if they don’t believe you or your pain.

17. Paraffin dip. Nice, warm paraffin dip.

18. Read other’s reports about what works and doesn’t work for them. I have gotten many ideas and things to try from reading about other’s fibro or other chronic pain.

19. Don’t forget about pharmaceuticals. There are a few FDA approved meds (none of which seem to work for me). There are some meds that can help various bits of fibromyalgia. There are pain meds that have varying efficacy and varying dangers. Be aware of all sides and don’t suffer needlessly.

Please go to the following link and VOTE. About half the group I am in (the last one) is being left out of the game. Your vote counts. http://therealljidol.livejournal.com/888626.html

"All lies and jest still, a man hears what he wants to hear and disregards the rest."  simon and garfunkel


			hear me.

listen, let my knees sing to you the songs of their people
 	crackling like fire
		      like gears with no lubrication
			moving ever forward
				    ever aging against themselves

	my toe heals from being cut open
	bunion surgery at 40
		I age with a false smile
		I age with an awkward pain scale
the doctor says I’m fine
	just a little physical therapy 
	lose some weight
		lighten the load i carry
		lighten the load that is me

he sees me as

	BMI
    a magic diagnoses

	obese
		size 18

my complaints no longer matter
i am diagnosed         f a t.
	fibromyalgia is real
		but the pain isn’t

i am told no opiates
	      no muscle relaxers 
	      nothing to calm my nerves
	       or sing me to sleep
i am told that even ibuprofen should be more limited

chronic pain is long term 
	learn to wait it out
	learn to b r e a t h e past it

i learn that my grimaces
		 my yelps
		 my eleven thousand steps a day
		 my massages and my psychiatrist
		 my 7 on the pain scale fall on deaf ears

	diagnosis complete my thoughts are released to the still air

he hears what he sees
	he thinks he understands

my doctor thinks I am fat
my laughs fall like tears
my pain is more than bmi
my pain deserves to be heard

	I  deserve to be  heard

And you can, of course, watch and hear me read if you prefer:




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