FM patient Zona B. Taylor decided to share her rules for living with fibromyalgia after reading “Uncertainty About Recovery from ME/CFS & Fibromyalgia – a Patient’s Point of View.” Thank you very much, Zona!
Uncertainty… about Everything: 20 Rules for Living with Fibromyalgia
Having lived with Fibromyalgia and the accompanying fatigue for more than 25 years now, I feel obligated to share my experiences as well.
While I would not call what has happened over that time “recovery”, I am more likely to call it “learning my body’s rules” and learning to abide by those rules.
What do I mean by “rules”? Well, here are the ones that rule my life:
1. Don’t do the same action over and over too many times.
That means, if I feel up to taking a walk, do not go nearly as far as I think I can, or I will pay dearly for it tomorrow and the next day and the third day, too.
By about the 4th day or so, I may be able to function more or less at my usual level. Consequently, I am unable to run a vacuum cleaner, mop a floor, clean house, wash dishes by hand… due to so much repetitious movement.
Even using a computer mouse causes issues with my neck and upper back.
2. Get enough sleep.
How much is that? Whatever my body says it is. Some nights, 7-8 hours is sufficient. Other nights, 12-14 hours is what it takes.
At least once a week (usually on Friday night into Saturday) I sleep at least 12 hours. When I am having a “bad” day I may sleep up to 20 hours… but that isn’t a typical situation.
3. Take meds and supplements without fail.
There are numerous bizarre effects that show up when I miss them. Bizarre even by fibromyalgia standards.
4. Do not wear tight clothes or belts.
Unless I want to have severe pain in my middle… for the duration of the time that I wear them, plus about another day or so. It can also lead to nausea, vomiting, and diarrhea, though not always.
5. Avoid new chemicals (including new medications).
It seems anything new causes either an allergic reaction or a fibromyalgia flare up.
6. Wear shoes that are flat with a wide toe box.
Change what shoes I wear at least every day or so.
7. No pantyhose (see #4).
Avoid socks that are tight around the top. I have found that diabetic socks have tops that are not as tight as “normal” socks, but they still stay put.
8. Wear underpants that are hip huggers or bikini panties…not briefs.
9. If wearing slacks, do not wear anything with an elastic waist.
It must have a plain waistband that is actually too loose in order to be able to sit in them comfortably.
10. When my skins hurts or feels strange, I should wear clothes that barely touch anywhere on my body…
Probably a loose-fitting dress. Avoid any “extras” like jewelry, scarves, etc.
11. No jewelry around my neck or wrists.
Light-weight earrings for pierced ears only. Nothing heavy or too dangly.
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12. Wear sunglasses.
Light of any kind is very painful… especially if on the verge of or in the middle of a flare-up.
13. Have dimmer switches in every room of the house. See #12.
14. Avoid clothes that are uncomfortable.
Bras, tags on the inside that irritate, etc. These little things add unnecessary stress to daily living. Can be the “final straw” that pushes me across the line to a flare up.
15. Learn and respect the early signals of an impending flare-up.
When you recognize what is happening, take life very easy until the symptoms let up again. Plus at least one or two days.
16. Find what works and stick with it.
My chiropractors and I are like family after all these years. They know that when I call and say I need to be seen, that tomorrow is not what I mean. They have helped me through so many situations and kept me able to function at work for all these years with minimal loss of work time. I cannot say enough good things about my chiropractic care.
At one point, I had an awesome massage therapist who was helping me immensely. Unfortunately, he and his family moved across the country, far, far away. I have not been able to find another massage therapist who is able to achieve the same results. I so wish he and his family would move back here!
17. Reduce stress in your life.
There is good stress and there is bad stress. Either kind requires my body to respond.
Some stressors are out of my control, e.g., weather changes, dramatic temperature changes, pollen count, changes in the workplace environment, my kids getting married three weeks apart, the birth of grandbabies, my children’s growing pains and crises, etc.
Other stressors are completely in my control, e.g., sending Christmas cards, throwing parties, attending parties, shopping, going to bed late, traveling long distances by car, etc.
Find what can be eliminated (sending Christmas cards) and eliminate those things. Avoid or reduce exposure to as many of the remaining ones as possible.
18. Find something that you can do that you truly enjoy.
I love watching movies and certain television shows. I can watch old movies and reruns of “NCIS” and “Charmed” for hours… and sometimes I do. I love to read, but can no longer hold a book for long periods. Thus, I have discovered audiobooks.
19. Not every symptom is always fibromyalgia.
It is important to make sure that any new ache or pain is not something else before I just chalk it up to a new fibromyalgia symptom.
Fractures in the small bones of the foot may or may not cause severe enough localized pain for me to think it is truly broken. However, three times in my life that was what it was.
Abdominal pain is not always fibromyalgia either. Once it was thought to be my gall bladder. After that was removed and the pain stayed, they did a cardiac workup and then a full GI work up. It is now a year later, and the pain still comes and goes. My doctors do not think it is “typical fibromyalgia” pain. They want it to go away or they want to know why it is there.
Most of my headaches originate in my neck and back, or from eye strain, not fibromyalgia.
It is important to know one from the other. If it can be “fixed”, fix it. Do not suffer needlessly.
20. Stay well hydrated.
I have noticed that if I “am a quart low” on water, my joints hurt more, I have more stiffness and achiness. When I drink lots of pure water (not tea, coffee, or soft drinks), I sleep better, I rest better, I am not as stiff and sore upon awakening, and I function better throughout the day.
You may be wondering what the consequences are of breaking these rules.
Believe me, the consequences are sure and swift. The fibromyalgia flare up is always just one or two broken rules away. Sometimes even bending the rule will cause a flare up.
I hope these rules can help someone else who is just starting their fibromyalgia journey. It has taken me a number of years to determine exactly what my body demands and what it will allow.
But I have noticed that some of the rules have modified a little as I have grown older. While fibromyalgia is supposedly not a progressive disorder, I will say that I have noticed the rules seem to be “tightening up” as time as gone on. Particularly the ones about exposure to new chemicals either in or on my body – medications, shampoo, hair color, lotions, face and body cleaners, makeup, etc.
Zona B. Taylor has had fibromyalgia since at least 1987