Anita K. Hansen, Participant since 1998
I thought a bee had stung me in my left shoulder when walking in the field at a friend’s farm. The pain was awful and lasted for many hours.A few days later my right wrist began slowly to throb and reached an unbelievable crescendo of pain that lasted for 6 hours. Several days after that, the same thing happened in my ankle. I was frightened and perplexed so I called my doctor. He said, "It sounds like you have rheumatoid arthritis."
That was 32 years ago.We moved from our small town to Minneapolis in 1978 and found a Rheumatologist. After much trial and error we settled on Methotrexate as my primary treatment. MTX gave me my life back. I could now turn over in bed and brush my hair and wake up with no stiffness. I stopped walking like Tim Conway on the Carol Burnett Show. I developed Dyspnea, and my Pulmonologist diagnosed Pulmonary Hypertension. My new internist took me off the MTX and put me back on Prednisone, 7.5 mg daily. Now I’m back to morning stiffness and horrible pain on awakening. The upside is that my hair is now more luxurious and thicker!
The dyspnea prevents me from walking even a block. I lap swim in a junior Olympic size pool 18 laps 3 times a week and have to grab a few breaths after every lap. Unless people see my hands, which are very deformed, they can’t tell I have RA. I have had synovectomy surgery twice to remove inflamed joint tissue. Once for 4 trigger fingers.
All in all, having just passed my 70th birthday I feel blessed to get along this well. I do most anything I want except sky diving, bowling, tennis, and triathlons. I push myself to the limits, suffer the pain and accept the tiredness and exhaustion that follows a day of doing what I want to do.
I am thankful for the NDB research. I feel privileged to participate, thus helping science to conquer this disease and to further the research to help others. I understand it has helped doctors a great deal.
Michelle Millar, Participant since 2004
Like most others with Fibromyalgia Syndrome, I was shocked and overwhelmed when I received this diagnosis in January 2003. Luckily though, unlike many others my diagnosis was swift, coming within 4 months of the first symptoms. To be told at age 25 you will probably spend the rest of your life riddled with pain and fatigue can be devastating and lifechanging. Sufferers of FMS experience various symptoms at varying levels. Personally, my over-riding symptoms are extreme pain in the back, hips and legs, a heavy fatigue, migraines and disrupted sleep.A lot to cope with for sure, but thankfully I am an extremely strong-willed young woman and was determined from the outset that FMS would not control my life.Au contraire -- I would control it!
I began investigating how I could best go about managing my own condition. I began by becoming an expert in my own illness through online research and contact with the local support group here in Northern Ireland. I soon found that most treatments produced no real tangible benefits or offered relief on only a short-term basis. And then I was referred for Cognitive Behavioral Therapy (CBT)!
CBT literally changed my life. By the time I started this therapy I was well aware that there was no magic cure to FMS and this had left me feeling pretty despondent. CBT dealt with all the issues surrounding my illness and encouraged me to look at life in a whole new way.With my therapist I worked to identify the thinking patterns that were causing problematic feelings and behavior in my life.We also worked at pacing my daily activities more effectively and I began setting both longand short-term goals for my life. After a short while I started to notice small improvements that in the end added up to huge changes. Before I knew it I was living life fully again. The pain, tiredness and illness are all still there -- the difference is that nowadays I control FMS like I always said I wanted to!
During my online research, I came across the NDB website. This site caught my eye specifically because it was research based and it included FMS. Currently a lot of FMS literature is completely contradictory and there are hugely varying medical explanations for the condition.We need to know exactly what the root cause of FMS is. Are there any drugs out there that could be of real benefit to sufferers? What is the most effective treatment for FMS? So many questions and as yet, so few answers. It is for this reason I support the NDB and other FMS research and encourage all those I know with FMS to also enroll as research participants. I feel it is our duty to participate and help with any research we can. I think it’s about time we FMS sufferers got some answers