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About Me
Muya
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Close Chronic Fatigue Syndrome
I've had CFIDS for a decade - onset when I was 13. When I was diagnosed the doctor had no treatment plan so she sent me to a neurologist. I was re-diagnosed with anxiety/depression, then narcolepsy - but both of those diagnoses ignored my other symptoms. I responded badly to medication and ended up in the hospital. I've been treating myself for three years now - meditation, biofeedback, acupressure, herbs etc. and now have more good days than bad. Well, more "good enough" days. Tolerable days.
Treatments
- Klonopin Not Working
- If taken in bed, caused extreme delirious fatigue and exacerbated REM-behavior disorder. If taken before bed caused giddiness, vertigo, nausea. Taking a very low dose (chopping pills in half) was tolerable, but ineffective.
- Reflexology Working / Worked
- Great for nausea, headaches, stress. Prefer full body acupressure treatment. Inspecting hands and feet regularly for tender points can help indicate problems. I work on my own feet every day with a tennis ball.
Close Eczema
I developed eczema as a young person after I got CFIDS. I had circular splotches from head to toe which would swell and weep if moisturized and crack and bleed if dry. I tried a variety of prescriptions - none helped so I survived by scalding it with hot water which would make the nerves retract temporarily. Finally Olux was invented and it "cured" my eczema. It tries to come back every 2-3 years and I use the Olux to send it back into remission.
Treatments
- Aloe Vera Somewhat Helpful
- Soothing, but no cure.
- Clobetasol Working / Worked
- I had stubborn, full-body eczema and tried many treatments. Olux cured me head to toe in about a week. The original formula had an alcohol burn that felt great because it killed the pain. I was prescribed the new "emollient" formula recently and it's terrible. Smells awful and makes me itch. Still clears the eczema though. Unfortunately Olux is a VERY strong steroid (not good for you) and very very expensive.
- Doxepin Not Working
- Eucerin Not Working
- Evening Primrose Oil Somewhat Helpful
- Hydrocortisone Not Working
- Increased weeping. Very uncomfortable.
- Protopic Not Working
Open Narcolepsy
One doctor said I had CFIDS the other said Narcolepsy. Who knows!
Treatments
- Provigil Not Working
