Success stories are educational, too
My suggestion is the same as it has been for every site dealing with CFS/FM that I have visited. I am a 50-year-old woman who's been fighting CFS and FM for 5 years, and visiting Websites has always been a double edged experience: Yes, it was great to discover a community and support, but at the same time it was always so depressing to hear all these disaster stories that had been going on for years or decades. I do understand that these sites are largely meant to educate the non-CFS/FM sufferers, and that therefore they need to understand the hell we go through, but nowhere do you hear about success stories of recoveries and what it took to get out of the nightmare... and I find that too bad! Some people do get out of it, so why don’t we hear about them? It would be of great constructive support rather than be faced time after time with the reports of dejection and despair that flourish on the sites. - Sophie
She became an RN, despite “2 percent chance” of return to normal lifestyle
I am a former sufferer of FM and CFS. I lived with these conditions on a severely debilitating level for six years, with SSI disability, bed-ridden for the first year and a half, three small children, and the inability to cope due to massive confusion along with all symptoms listed on the criteria including seizures. When first diagnosed (in 1991), I felt lost because I had never heard of this disease. I found an organization in Kansas City called Chronic Fatigue Syndrome Association, was able to gather information through the phone tree that they had set up, and did research in the medical library when I was able to get out of bed. It was a very hard era of my life; my family calls it the "dark days." I gathered information from the 1700s and 1800s, and made a correlation that it was related to the Victorian era’s "vapors." I have a feeling that this illness has been around for a long time without proper diagnosis due to the population that it affects - primarily women. Now, with technological advances and attitude improvements in medicine toward autoimmune dysfunction, I feel that research is making progress in this area. However, we also have a long way to go.
I am now a Registered Nurse - after changing so many things to get into remission. I'm in my 11th year, due to supplements, diet changes, exercise, sheer will of not succumbing to the sick role, and the love of my family. I feel that the previous treatment regimen that my doctor provided for me early in the illness provided an avenue for me to remiss. I see women and men alike coming into the hospital in my beds treated with narcotics for the pain. It seems to me that anti-inflammatories are the primary treatment modalities that should be used for this illness. I say this because of the inflammatory process that is occurring throughout the system, and it disturbs me that CFS/FM patients aren't educated more sufficiently with this information. I understand the pain that occurs with FM... I was there. High doses of Ibuprofen were used early in my diagnosis. Sometimes I know I took more than I should have, and am surprised I still have kidneys. But I also attribute that to my age of onset - at 26 years old. Even through the Ibuprofen, there was still pain which I do not think that doctors really understand. Still, it would seem that more people need this information to provide themselves with the appropriate treatment modality for the illness.
The changes I made during my illness afforded me to reverse the two percent chance the medical community gave me to return to a "normal" lifestyle. I still feel tiredness in my legs after a 14-hour day, but who wouldn't. Occasionally I still feel tired, but nothing like the extent to which I felt it during the active days of my illness. My diet has changed - exercise is now a part of my life. I am very careful about my activity levels, watching how I use my energy. Just because I have remissed doesn't mean that I can't be revisited, and I understand that now. I have educated myself in medicine and gone into the medical community to try to change the attitudes of physicians, of always "referring those" to the psychiatric community. I have had several discussions with young physicians coming into the field, to play closer attention to autoimmune panels that need to be run on patients with suspected autoimmune disease. I push them to understand that the mental depression that a patient experiences is secondary to the disease process that is affecting the body. I also educate the nursing staff around me that this illness is real and very debilitating, and that patients with it are not "crazy," "just depressed," or "drug-seeking."
There is much work to be done in the research of this illness and many other autoimmune processes. I pray daily that it will reach a conclusion so that people who suffer with CFS/FM will find a viable cure without extensive side effects to the body and mind. I now have my life back, thanks to the good Lord above. It's a long road, but remission is a possibility for those of us who still suffer from these debilitating illnesses. I encourage all those who suffer with it to find doctors and nurses who understand the inflammatory process in the body and how things can go amuck. When I read Gloria's letter* today, it filled me with hope for this population of people who cannot function on a daily basis like they used to before becoming afflicted. I remember... I remember what it was like, I'll never forget. - Nikki
* Note: This refers to “I can smile again” - the Weekly Inspiration in the September 27, 2006 FM newsletter http://www.prohealth.com/library/showarticle.cfm?libid=12206/