Fibromyalgia& C.F.I.D.S.: I'm 100% disabled with Fibromyalgia and Chronic Fatigue Syndrome. I've tried many techniques. What might help?
By award-winning author and stress-relief expert Susie Mantell
While I am not a physician, I have had considerable experience with FMS over the years so I will share a few non-medical observations and hope that some of these things, along with your own professional health care regimen, practices, meds etc. might be helpful.
Fibromyalgia Syndrome,(FMS) and Chronic Fatigue Syndrome (CFIDS), as you know, are discouraging and frustrating and misunderstood conditions that are increasingly common diagnoses in our culture. While for a long time mostly integrative practitioners seemed to acknowledge them, many allopathic (traditional western) physicians denied the existence of either. But as they began to see the constellation of vague and diffuse symptoms over and over, eventually FMS actually became a fairly common "catch-all" diagnosis by M.D.'s for people with generalized and persistent flu-like aches, overall malaise and depression, sometimes including cluttered "fibro-fog" thinking, and most importantly...18 very specific "tender points" that are very painful when pressed.
PATTERNS OBSERVED BY SOME
- more often presents in women, and over 30, though not always
- widely accepted as a sleep-disorder-related phenomenon where one wakes frequently, spends too much time in alpha brain activity, and awakens feeling sluggish, achey and unrested.
- likely exaccerbated by stress
- episodic in nature
- possible bowel/sinus connection to the FMS flare-ups
- sometimes onset follows trauma or sudden hormonal change of some kind
- CFIDS sufferers often test positive for FMS (not always in reverse)
- sometimes accompanied by or confused with Lyme Disease, arthritis etc.
- personality often "perfectionistic"; especially high expectations of self
- many have allergies and environmental sensitivities, too
My own thinking (Remember: non-medical---only observational in nature) is that Fibromyalgia Syndrome is a constellation of similar-but-not-exact symptoms that seem to occur in different people for different reasons with different degrees of severity, and is episodic in nature. I think there may be a digestive relationship for some and/or autoimmune/allergy aspects, but in any event, the following may ease symptoms and eventually maybe even improve quality of life over time.
BOOK SUGGESTION: I have seen much written on this complicated and little-understood phenomenon. Take a look at "Reversing Fibromyalgia"- Elrod
I think Dr. Elrod really "gets" this disorder in a way many do not...with all it's vague and sometimes subtle, often miserable, symptoms. He offers some practical, realistic suggestions especially regarding nutrition, (What helps? What hurts?) exercise (How much? How little?) and nutritional supplements some find very helpful. I notice he hasn't yet included the supplement Sam-e, which is getting a lot of buzz and is very helpful for some, but all these matters should be discussed with your health care professionals.)
Some have found extraordinary relief by changing the following things.
-Eliminate sugar, caffeine and alcohol entirely or reduce as much as possible
-Drink at least 8 glasses of bottled water daily
-Eat fiber, green leafy vegetables and generally keep bowels moving regularly.( there may be a relationship between healthy digestive system and sinuses....and FMS)
READ ABOUT: "Leaky Gut Syndrome" and see if anything about it makes sense to you--maybe/maybe not.
-Exercise moderately and stretch, in the water if you can, as close to daily as possible. There is a very fine line and too much can lead to a flare, but too little cause stiffness etc.
-Have massage weekly
-Breathe mindfully, deeply, pleasurably
-Listen to you body--Rest when you begin to get tired...and then get up and move on with your day. Rest every hour if you must...or once a day...your body will tell you. (But it may also say, "OKay...get up again now and do one thing. Then rest again." You will know. But being productive even in a small way often lifts our spirits.)
-Get good, restful sleep but without barbiturates, which block authentic restorative sleep levels in which growth hormone is secreted, muscle tears repaired, etc.
-See a licensed health care professional who understands FMS and CFIDS and ask about nutritional/herbal supplements and/or seratonin boosters that may be approriate.
-Try psychotherapy with someone you truly like and trust and who "gets it"
-Share with a few good friends how you are "really" doing, so they can support, or distract you...or remind you of what might be helpful.
-Pursue interests that are fun..and completely unrelated to your health!
-Daily meditation--(I listen to my own "Your Present"A Half-Hour of Peace" audio when I need to relax, can't sleep, and when I am achey)
-Clear out unhealthy thoughts, behaviors and people-----reduce stress in any way you can.
-Replace those things with dreams, activities and people who fit more
-Not everyone can, but some have changed careers altogether ---to create the next stage of life as they are ready for it to be.
-Explore dance, yoga, body work, meditative practices, art, etc.
*****Think positive! And hang around with others who do!*****
Many people who have had FMS or CFIDS live happy, active lives again and find manageable ways to avoid, cope with and move through the very difficult days!
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Award-winning stress-relief expert Susie Mantell ...is the author of the deeply soothing relaxation CD, "Your Present: A Half-Hour of Peace,” clinically approved for symptoms associated with stress and sleeplessness, depression and grief, anxiety, P.T.S.D., Fibromyalgia, caregiver stress, cancer, pain, divorce and addiction recovery. Featured in The Los Angeles Times, NBC, ABC, CBS-TV, Town & Country, The American Pain Society, Hazelden and The Susan G. Komen Breast Cancer Foundation, listeners include The Mayo Clinic, Memorial Sloan-Kettering, The Betty Ford Center, V.A. Hospitals,and Canyon Ranch (#1 Spa.) Customizing stress-reduction for Fortune 500 companies, distinguished hospitals and spas, Mantell has facilitated thousands in relieving health-related, work-related, chronic or traumatic stress. Her multi-sensory, mind-body techniques appear in national media, medical and corporate publications. Susie Mantell's Stress-Relief & Wellness Tips are intended as an adjunct to, not a substitute for, professional health care. Order “Your Present: A Half-Hour of Peace” and find more of Mantell’s stress-relief tips at www.relaxintuit.com