Posted by TENA/ DIAMOND on 1/2/2009, 4:21 pm, in reply to "Re: Letter to NY Times #3"
I hope that none of the author Berenson's relatives ever experience the symptoms of Fibromyalgia. How tragic would it be not to have a support system. We need the people around us to be understanding and believe that what we feel is real. Without the support of my husband and family, I am not sure how I would get through each day. How dare he suggest that the pain I feel is from being diagnosed, I do not obsess over my symptoms. I was relieved to find out why I had the symptoms, it did not make the pain worse, nor did it consume my life.
I use antidepressants, inflammation meds and a pain pill as needed. I do home therapy using stretching and strengthening exercising. I feel like I am in control of my illness, I do not spend any more time with my doctor then I used to. I am not a hypochondriac! I am not sure what Alex Berenson has against Fibromyalgia, maybe he needs an unexplained pain to take his mind off his self-righteousness. Thank you to Lynne Matallana for running the National Fibromylagia Association, the newsletters are very
informative and are full of tips to help us live with our disease! Sincerely, Deb Link link@westriv. com ************ ********* ********* ********* ********* ********* ********* **** I read your article with great interest since I suffer great pain from that illness. Since childhood, I've had events of illness lasting longer than any influenza should but with very similar symptoms. Thankfully, these bouts would end and my life would continue like anyone else's. I married, had children and had a career I loved. After years as a hobby gardener I trained as a florist and looked forward to going to work each day unless I was again visited by my mystery illness. As the years passed the events seemed to come closer together and last longer until I seldom felt well and pain free. I continued to go downhill until I was in so much pain I couldn't even walk and was pushed in a wheel chair by family members if I went out of my house. After many visits with many
doctors, I was diagnosed with
Fibromyalgia at the University of Kansas Hospital and Medical School in Kansas City, KS. The diagnosis was made based on my extreme response when Fibromyalgia Tender Points on my body were pressed. Pressing on other places did not elicit the same response. I was treated with some older anti-depressants and although they made me sleep a lot, they didn't affect the pain level I experienced daily. After seeing a Rheumatalogist, Dr. Letournea in Topeka, I was put on a combination of Ultram and Ibuprofen and within three days I was out of the chair and ready to go back to work. That medication combination worked for me for several years but then it seemed to have lost it's effectiveness and I was once again struggling with daily activities.
At that time, the Cox II inhibitors were introduced and I began to take Vioxx with wonderful results. I took a computer course and set out to find a new job, not quite so physical and I did. Under treatment with Vioxx I was even able to take a long planned trip to Ireland and Scotland. I felt like I was once again my old type A personality and I had a tiger by the tail. That worked for several years but then, on a routine visit to see my family practitioner, she pointed out to me that my blood pressure had risen higher each time I had a visit to the Dr and was now at a very dangerous level. She said that she had heard some rumors that Vioxx was doing that to people and that I had to get off of it because I was at risk of stroke. She refused to prescribe it anymore and my health took another downward spiral. Even with the Ultram and Ibuprofen I was in such pain and so fatigued that working was out of the question. Since no alternative seemed to work for
me, and I was quickly running out of options, I applied for Disability through Social Security. At the first round I was refused but by the second round I'd deteriorated to the point that anyone could see that I was very ill and my case was approved and I retired at the age of 59.
As to Dr Wolf, he and I are both living in Kansas. I'm in Topeka and he's in Wichita. At one point in searching for help early on in my illness I was referred to him for treatment by the Dr who diagnosed the Fibromyalgia. He was on the staff of University of Kansas at Wichita. At that time he was touting himself as THE fibromyalgia specialist in the Mid-West. He left KU, and built himself a clinic in the shape of a pyramid and began trying to heal illnesses by the power of the pyramid. Of course, no one got well so he decided that we all must been faking our illness or the pyramid would have worked. He is a fool and a charlatan and not someone who should ever be quoted in a serious discussion about Fibromyalgia although he is on a regular basis. He is the only Dr who I've ever heard that holds that opinion and he is very vocal in that misguided opinion. After the Vioxx scare, I'm not quite so quick to put another substance in my body as I was with Vioxx.
I think I will just wait awhile and see what kind of results are obtained and what the side effects turn out to be but I will say that I would take the Vioxx again in a minute. I'd love to have another chance at pain free living and would take it full well knowing it could end my life. With me, the quality of life has always been more important than quantity. I'd love to get up in the morning and dress for work. I'd love to be out in the world interacting with people and earning twice what Social Security benefits allow me. I'd love to travel to other places I'd planned to see one day. Maybe Lyrica will be the drug that will give me back my life. I'm watching to see. Gayla Templeton Topeka, Kansas ************ ********* ********* ********* ********* ********* ********* *****
I can only respond as a person who has suffered from Fibromyalgia since 1991 and has done everything possible to care for myself, follow my Dr.�s advice and keep a positive outlook at all times. For
someone who believes this disease does not exist, I can only hope he contracts it some day so he can discover how real it is. Thank God there are medical professionals who do believe in the disease and continue their research to find solutions for each of us. For me, I was going downhill and had to take a medical leave of absence. During that time, I found a wonderful treatment "team" who has worked together and I am now improved dramatically and back to work full time which was my goal. The insinuation that we are overweight, lazy hypochondriacs is what has kept this disease from getting the focus and research it deserves. Shame on him for presenting himself as an expert, much less a professional. Carol L. Thomas
Message Thread:
« Back to thread