Response to pocotaz: Thank you for your welcome and encouragement. I just joined this online support group on WebMD a few weeks ago. It's nice to have a place to go to to vent my frustrations to understanding people because my husband doesn't like listening to constant complains and it's hard to hold my problems inside sometimes. There is a whole wealth of information and facts about fibromyalgia on this website and it's wonderful to hear about everyone else's experiences which keep me from feeling so alone, especially when I'm so isolated socially from people now that I'm no longer able to work or get out much. It's amazining how many people have such similar problems and I'm glad to be able to offer a comment or suggestion whenever I can to help others, or at least make them feel they aren't alone in what they are experiencing.
I've had fibromyalgia/CFS over 20 years and even though I've found some ways to cope, there are still times when it's so difficult. It took me about 2 years to get diagnosed and it was such a relief to finally have a name attached to what was wrong with me; however, at that time my doctor explained so little about fibromyalgia, as though it wasn't a very serious or debilitating condition, that I didn't even take it seriously enough myself to believe it would be such an ongoing thing until I was rediagnosed 3 or 4 years later at the Mayo Clinic in Scottsdale, AZ where I lived at that time--and they educated me about this.
It's especially hard dealing with people who don't believe fibromyalgia is real and take my problems seriously. They can't understand how debilitating a condition this is, even after I explain it has now been accepted officially by the Social Security Admin. as a true disability and I won my case, although after a long 2-year battle. I don't know why there are still such skeptics and I wish there was more publicity on TV with stories from real people who are suffering and struggling. Perhaps because there aren't any definitive blood tests as proof, people (including some doctors) don't believe it's real.
I find people's disbelief very upsetting because I have many limitations from fibromyalgia/CFS that affect me on a daily basis preventing me from living a normal life. The unpredictable nature of this condition with symptoms that come and go causes many problems is sustaining employment and conducting my life at home because I never know when I'll feel well enough to do things or how long I'll feel well. Therefore, I have to pace myself, making sure to take breaks to rest and relax so I don't overdo anything, but the slightest little nothing can sometimes cause a flareup. The only way I can do to try and cope with the after-affect fatigue and other symptoms that incapacitate me, such as low-grade fevers that knock me out of commission, after I've made a family dinner or gone on an outing is to plan ahead and space things out that I have to do and then make sure I have nothing planned afterward to allow for time to rest and recuperate, which can be a lengthy process.
Again, as I've said before, lack of awareness and understanding of fibromyalgia is one of the most frustrating things for me to deal with, so that's why this support group is so beneficial. No matter how much I've learned about fibromyalgia over the years, there's always something new to learn, especially from other people suffering from the same condition, so I value everyone else's input to this website. I would definitely refer anyone with doubts about the realities of fibromyalgia to spend even just 5 or 10 min. reading the information and comments made here on this website, which is excellent testimony to the truth about how people's lives are greatly affected. We aren't lazy, paranoid or chronic complainers who are using lame excuses to get out of doing things.View Thread
I'm glad you won your case and it was great that you found a health advocate. I've dealth with fibromyalgia/CFS for almost 20 years and couldn't apply when I had to quit working in 1994 because the Social Security Admin. didn't accept fibro as a disability, but things things changed and I discovered in 2005 that they recently began accepted it. Two years after moving to the Seattle, WA area from Arizona, I contacted 2 lawyers who were willing to take my case, but they were so discouraging and I didn't have confidence they could win for me, so I acted as my own lawyer, fighting my case all by myself...and I won, but it took 2 long years of fighting and 2 appeals. The lawyers fees are controlled by the Social Security Admin. and it's true that you don't have to pay anything if you don't win. However, they said they'd have to charge me "out-of-pocket" fees for things such as their travel back to AZ to investigate my case and interview my former doctors, employers, neighbors, etc. and their fees could run up too high since it I wasn't expected to settle my case for any fortune (which was not my intention because I just needed a monthly income). Since I knew my case with my medical history and physical inabilities better than anyone else, I did as much research as I could and armed myself with a stack full of documents when I went in for my 2nd hearing with an Administrative Law Judge. He even remarked that people usually, or always) come with a lawyer to the hearing and offered to give me extra time to go out and get one, but I declined the offer because I waited so long for that hearing already and felt too wiped out to continue and drag out that battle any longer. I knew my facts and presented hard evidence in the form of many documents from doctors and letter of testimonial that I gathered from a couple doctors, a former employer, a close friend I had confided in for years who would attest to my honesty, and also my husband (as a first-hand witness), who also came to my hearing and spoke up for me. I applied 13 years after the onset of my illness, but since they can only grant a settlement dating back one year prior to your original application, I lost out on 10 or 11 years of disability payments, but I never expected that anyway and was happy they covered that previous 3 years. Those 2 years that I fought my case took a great toll on me with all the stress and worry. It was an added benefit one year after my disability payments began to be able to go on Medicare also and not worry about insurance, although you have to pay for that and it's deducted from Social Security. I was particularly trilled to get the validation for my long illness and the judge even apologized for not being able to grant benefits all the way back to 1994. Unfortunately, in spite of that validation, it did not pay off in convincing my brother and sister-in-law (who live 2,000 miles away) that I have such severely debilitating and life restricting problems which contributing to my not being able to fly across the country to help our ailing mother prior to her death. That situation resulted in our becoming estranged over 3 years ago and it's a shame some people are so ignorant and don't take even 5 min. to research fibromyalgia on the Internet which is readily available to them and believe the true ffacts.View Thread
The Mayo Clinic also has a branch in Scottsdale, AZ where I used to live (only 5 min. away) and I was re-diagosed there and treated for fibromyalgia in 1997. (They even have a branch somewhere in Florida that they opened awhile later, but I'm not sure where.) I've had fibromyalgia/CFS for approx. 20 years and they were the first ones to take my problems seriously. I attended the class held by an RN nurse and it was very helpful. I don't remember they giving me any books, but they recommended a good one I could buy through their pharmacy which was extremely helpful. Their physical therapy was wonderful also. I moved to the Seattle, WA area about 10 years ago and I miss being close to Mayo with all their many specialists located under one roof. Their doctors were the ones who diagnosed my hyperparathroid condition and did surgery one me after I lingered on for a long time not knowing what was wrong with me under a previous doctor's care. I highly recommend the Mayo Clinic for anyone who can get there.View Thread