About Dominie Bush Expertise I can field questions regarding chronic fatigue syndrome. I was diagnosed with fibromyalgia in 1982 and later developed CFIDS. I am not a doctor, so cannot "diagnose" illnesses, but I am willing to offer suggestions and support as long as people understand that I am a fibromyalgia/chronic fatigue syndrome survivor, not a medical doctor.
Experience Having had FMS/CFIDS for over 20 years, I have learned a lot about these conditions. I have had a website at http://www.fms-help.com since 1996 offering support and information. I have 100 Tips for Coping on the site, plus many helpful articles, and I offer a FREE monthly newsletter for FMS/CFIDS sufferers.
Education/Credentials I am an honors graduate of UCLA (1971) with a B.A. in Psychology. I also attended Elim Bible Institute in Lima, NY for 2 years, studying Bible and Christian Education.
Question I have read all about the symptoms and I know that breathing difficulties IS one of the symptoms, contrary to a 2001 answer by an expert that I just read. I'm wondering how severe the breathing symptoms can be, though. Quickly, my symptoms: about 4 months ago, started with pain and swelling in calves. SED rate is slightly elevated, but not much. Then, over the next couple of months, on and off: low-grade fever in the evenings, terrible night sweats, flu symptoms, extreme fatigue, aches, especially at my waist, on both sides. These I have most of the time and they are so bad at night that they wake me up sometimes. Then, about 2 months into the symptoms, suddenly, I could only walk a few steps without being so out of breath I felt I was almost dying. Family doctor gave me prednisone, temporarily and sent me to a Rheumatologist. He put me on Lasix (water pills) and took me off the prednizone. My breathing hasn't gotten bad again, but it isn't perfect. I feel very inflamed and raw in my chest and lungs and I cough when I try to talk. I asked him what caused this and he didn't have an answer. He ran more tests. All blood tests and lung tests are fine so now he's saying I don't have anything that's associated with Rheumatology and he keeps saying I just had "water retention" for some reason and I should be okay now that I'm on Lasix, but I'm not okay. I feel horrible unless I take Ibuprofen two or three times a day. I used to be a late sleeper but now I wake up about 6 a.m. every morning no matter when I went to sleep and I just feel horrible, flu-like and fatigued until the Ibuprofen kicks in. I guess my main questions are: is "water retention" part of CFS, and could it have caused such a severe attack on my lungs? Thank you very much.
Answer I am not a doctor, but have had FMS/CFIDS since 1982. I have a lot of helpful ideas on my site at www.fms-help.com/ Many of the symptoms you mention are part of the CFIDS "package," including breathing problems, but I have never heard of such a severe case with feeling raw in the chest and lungs and coughing when trying to talk. May I ask a few questions to help answer your inquiry? Without being intrusive, it would help if I knew your age, if you are a smoker, and if you are overweight. I assume you are female (Sky). Many years ago when my CFIDS was at its worst, I developed a cold in Jan. that turned into bronchitis and then by June it turned into pleurisy (inflammation of the lining around the lungs) from so much
coughing. I thought I would never recover. I also had swollen glands, severe debilitating fatigue, etc. Amazingly, one day I woke up and it was gone. I don't have any answers for why this illness took over my body and then disappeared. I have a lot of things on my site that might offer some clues, such as 50 signs of fibro, 100 Tips for Coping, Are we infected with mycoplasmas, my personal CFIDS story, etc. Have you investigated costochondritis (inflammation of the breastbone) that causes chest pain? I have heard from several people with that condition. However, yours sounds like it's more in the lung tissue. I know how frustrating it is when all tests come back FINE, and yet we feel like we are dying! Please write me again after you take a look at my site and I will be glad to help further. Be careful of prednisone (as I'm sure you are)....as one doctor told me, it's "short term magic, long term tragic." Many natural supplements can help with CFIDS symptoms and they are safer than drugs and less toxic and damaging. What do you think of seeing another doctor for a second opinion? Even though your tests say everything is okay, another doctor might be a better diagnostician when he/she hears your specific constellation of symptoms, including the ache at the waist on both sides. That is not a normal CFIDS symptom, but then CFIDS is not a "normal" illness and everyone who has it might not have exactly the same symptoms. I hope I have been of some help--or at least encouragement. I have been down the same road of frustration and discouragement and suffering. I have lots of helps on my site. Please visit! There is a search feature on the main page if you would rather search the site for info than click on specific links. I think you wil find lots of encouragement there.
