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Chronic Fatigue Message Board

Chronic Fatigue Board Index

My CFS started in the autumn of 1988. My husband and I babysat our two sick nephews for a weekend. We both came down with an unusually bad cold. He recovered, I didn't -- perhaps because it was a particularly busy time for me at work. I continued to push myself, and didn't take the rest I needed -- assuming that once life settled down, I'd feel better. For the next year, I never felt well, but was able to function. Then, major building renovations started at work, and the materials used were extremely toxic. I was repeatedly moved to different floors while the renos took place around my office, so I had numerous intense exposures to fumes from oil-based paint, vinyl wallcovering, treated carpet and carpet glues, formaldehyde-containing wood products in new furniture, etc. As well, the ceiling tiles were removed and insulation fibres coating the mechanical systems between floors were falling on my exposed skin, causing an allergic reaction. Since then, I have not stopped reacting adversely (with allergic or neurological symptoms) when exposed to the same chemicals, although this is now rare since I spend most of my time in a clean home environment. So, I guess my answer to your first two questions is that mild symptoms started suddenly with a bout of illness, and worsened slowly.

Over the years, my symptoms have varied in number and intensity. Usually I can attribute this to something I've done or changes in my environment or diet, etc. Any activity (whether physical or cognitive) worsens my condition -- the more I do, the worse I feel, and ultimately the less I'm able to do. I'm worst when the temperature exceeds about 23 degrees C, particularly if it is sunny. I'm best in cool (but not cold) temperatures, and at sea level (as opposed to the high altitude city I live in). Occasionally, I have a period of a few hours, or a few days, when I feel almost normal. During these occasions, I analyze what might have contributed to my feeling better, and then try to replicate the conditions. Unfortunately, so far I haven't been successful in achieving a similar improvement. These "almost normal" periods seem to be random, or at least beyond my control to figure them out.

As mentioned earlier, being at sea level seems to be better for my CFS. I'm thinking this may be due to the increased oxygen concentration in air at this elevation. Triggers that make me worse are: chemicals (inhaled or ingested, such as food additives/preservatives and medications), alcohol, heat, cold, noise, bright light, stress, physical activity (particularly sustained), mental concentration (such as reading, handling family finances), mental stimulation (such as TV, social gatherings), reduced sleep (particularly if I'm wakened up rather than allowing myself to wake up naturally). Any activity that involves holding my arms, unsupported, in front of my body is particularly tiring, and increases my pain.

None of the pharmaceuticals I've tried (primarily various antidepressants in an attempt to improve the quality of my sleep) were helpful, nor were any of the expensive alternative therapies I've tried (acupuncture, chiropractic, massage, active release therapy, brain wave reprogramming, nutritional supplements, herbal cleanses, cranio-sacral therapy). Eating a healthy diet with virtually no refined carbohydrates significantly reduced my GI tract symptoms. Removing all carpet and most upholstered furniture reduced my allergy symptoms. Carefully renovating our home with non-toxic products, and being extremely careful to choose environmenntally-safe items (eg. furniture, cleaning supplies) brought into our home, has reduced the frequency/severity of neurological symptoms, allowing me to spend short periods of time in less safe environments (such as stores, other peoples' homes).

If you are newly diagnosed, I encourage you to listen to, and respect, your body's messages. Try to strike a balance between pushing yourself too hard, and doing so little you lose strength/function as a result of inactivity. I did the first -- denying that such a previously healthy and active person could be ill. I've read that people who don't get the rest they need in the early stages of this illness are less likely to recover. Good luck in your search for a solution.

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