A Tale of Two Sisters with Fibromyalgia

Melinda (AZ) and I [Editor Janet] corresponded about one of her support group members who was looking for a doctor to treat her Fibromyalgia (FM). I had advised her to refer her to an Environmental Medicine Physician rather than a rheumatologist and to encourage her to take an ELISA/ACT blood test* for delayed food, chemical, mold, etc. sensitivities. Melinda and I both agreed that it is hard to convince people diagnosed with Chronic Fatigue Syndrome (CFS) and FM to investigate food and chemical sensitivity. Melinda has graciously consented to my sharing her story which should influence people with CFS and FM to pursue Environmental Illness as their comprehensive diagnosis in order to get better:

I usually do not even tell people the story about my FM because most people do not want to make the connection between muscle pain and everyday chemical exposure [perfume, household cleaners, laundry products]. I have had more ridicule on this subject than for Multiple Chemical Sensitivity. I have the worst luck convincing people with FM who aren't hypersensitive to chemicals (yet) of the connection. They want to play that "I don't have what you have" game.

I had a very bad round of chronic fatigue in 1997 and later found that the worst bouts were after speed walking with a friend who wore musk perfume. We went to the mall** every Saturday and Sunday morning. Then I would spend the rest of the weekend in bed with debilitating fatigue. I connected the exercise with the terrible exhaustion, but not with the perfume. A couple of years later, I worked with that person and got sick every time I got near her. That is when I finally made the right connection. By that time I was hypersensitive to chemicals and could see the effect of the perfume more clearly. In my experience, these conditions are all linked to chemical exposure.

As for the ELISA/ACT test I would say this: The results of the ELISA/ACT test helped me control my reactions to chemicals. From the test results, I learned I am severely reactive to all dairy products, and to whey, which is in a lot of natural flavorings. I am also reactive to soy, fungus in aging fruit and fruit juice, cantalope, wheat and many other foods I was eating on a daily basis. I had several allergy tests before the ELISA/ACT, but nothing ever showed up [those tests were probably for immediate-reacting sensitivity]. The ELISA/ACT test results helped me shape my diet and start to feel better. The test also listed formaldahyde as a lymphocyte reaction and this was instrumental in the positive outcome of my disability case. I am still hyperreactive to chemicals, but do much better by knowing and avoiding the positive items on the test.

In 2002, when I moved away from the Phoenix valley, my FM totally went away. At the time, both my shoulders were completely frozen and I couldn't lift my arms above my waist. I was taking physical therapy and getting saline injections in the trigger points of my shoulder three times a week. The doctor wanted me to have surgery to free the joints. By the time we were moving from Phoenix, I could barely dress myself. The pain was horrible. I got the ELISA/ACT test and avoided all positive items on the list. At the same time, I moved to cleaner air. In two weeks I was doing yard work and went from frozen shoulders to being able to lift my arms straight up into the air and touch my ears with my shoulders. After living outside Phoenix for three years, I now get almost immediate pain in my shoulders after spending too much time in the dirty air of Phoenix, or after any bad chemical exposure.

My sister, Marsha, who had been quite an achiever, was also on disability with FM. She had FM much worse than I did and for a much longer period of time, and was nearly bedfast. She, too, moved to the country and avoided all chemicals and known allergens. After about six months she was pain free when not exposed to chemicals.

I [Editor Janet] contacted Melinda's sister Marsha and asked her to share her story with us as well. Here is what she told me.

Trying to make a long story short, so here it goes. Over the course of seven years, my health progressively deteriorated to the point of excruciating and incapacitating pain. I was diagnosed with FM in 1994 and over the years received six months of acupuncture, numerous rounds of physical therapy, repeated trigger point injections, and virtually every medication and combinations of medications for muscle spasms, pain, migraines, etc. You name it, I was on it. Nothing, I repeat, nothing touched the unlenting migraines, muscle spasms, trigger points, and brain fog, chronic fatigue and pain. It wasn't until the fifth or sixth year of my FM diagnosis that I started having hypersensitivity of smell.

I struggled to keep my job of twenty-three years as a psychologist. In the year 2000, I had a direct exposure to pesticides in the form of bug spray which put me completely over the edge. I became bedfast from the pain and spasms. My physician actually thought I might die due to uncontrolled vomiting. That is when I learned about Multiple Chemical Sensitivity (MCS) from Dr. Sultan in Florissant, Missouri. I began to realize it was my chemical sensitivity that was the root of the problem, not FM. After moving to a very isolated location, and building a more environmentally safe home, using only "safe" personal care and cleaning products, plus screening all materials that came into my house (mail, gifts, fabrics, people, etc.) did I finally get better. It was a slow and, at times, overwhelming process. It didn't happen overnight, but it worked. I do not take any prescription medications.

Now, I can garden, sew, craft (using safe materials), clean house and lead a fairly normal life. However, I am homebound and do not even go into stores unless necessary. When I do go, I use my respirator mask for protection and shower as soon as I get home. The good side is I am doing things I thought I would never be able to do again. Simple things, like playing the piano, or stretching out on the grass and gazing peacefully at the blue sky. If you've ever been in serious pain, just the simple pleasure of being pain free is fantastic. In the past I never would have believed my "FM symptoms" were triggered by chemicals, but now when I get near the slightest amount, I fall, virtually, and immediately back into the muscle knots, pain, and trigger points, until I remove or get away from the offending chemical(s). There are sacrifices to be made for feeling healthy again. For me they are well worth it. Marsha

I am glad that Melinda and her sister Marsha have made such dramatic improvements. I hope their stories will help others.




Any physician (and in some states chiropractors) can order a blood draw kit for their patients for both these tests:

* ELISA/ACT Biotechnologies, Inc, tests 307 foods, chemicals, molds, etc. by blood for delayed reactions up to three weeks. Contact: ELISA/ACT Biotechnologies, 2 Pidgeon Hill Drive, Suite 410, Sterling, VA 20165; 800-553-5472

Genova Diagnostics tests 88 foods for delayed and immediate reactions. Contact: Genova Diagnostic , 63 Zillicoa St., Asheville, NC 28801-1074, 800-522-4762

** New clothing, shoes, potpurri, etc. out gas chemicals which cause the air in malls to be polluted. Many people who are sensitive to chemicals cannot go to malls without becoming ill for that reason.



Reprinted and slightly edited from the Share, Care and Prayer newsletter, Vol. 22, No. 1, January 2005.










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