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This is the personal story of one of our members. It is by no means a diagnosis aid and contains opinions about the writer’s conditions, not necessarily facts about the disorder. Drugs and treatments listed are not necessarily the best course of action for all patients. Please see a medical professional for proper treatment. These stories are for an overall understanding of how the condition effects the writer’s life and is designed as a means of support and understanding. This is written in the hope it will get other people to tell their own story of living with Fibromyalgia and related disorders. Tell us what worked for you and what didn’t. Just remember that every person is different and what works for one person may not work for you.
Hello Friends,
I am the oddity. Studies have shown that most people (I have heard something around 95%) that suffer from Fibromyalgia, or related disorders, are usually women in their late 30’s through 50’s when they are diagnosed. I am a 27-year old male who was diagnosed at age 22. This puts me in a very rare group. My story of diagnosis is also somewhat unique.
I was teaching school and coaching football, had a house, and an active social life. One morning I woke up and felt sick, a trip to the doctor sent me home with a diagnosis of “the Flu.” Three days later I felt better and went back to work with just a slight cough remaining. A month later, the cough had gotten worse and again a trip to the doctor yielded a diagnosis of the flu. Strange as it was, I felt better in a few days and back to work I went. This time the cough was getting worse. In 3 weeks Christmas rolled around, and again, I was feeling sick.
This time a doctor’s visit produced a diagnosis of asthma, and the cough was in full force and becoming a severe hindrance in my work. Several weeks of treatment did not help, and a trip to a Pulmanologist sent me home with a diagnosis of having “coughed out the lining of my lungs.” By this time, the fatigue was really setting in full time and I was having great pain in my legs after a day’s worth of standing. By February 1st, the pain, fatigue, and coughing was so bad that I was brought to the principal’s office and given the option of being fired or quitting my job for medical reasons. I took the option of quitting, since being fired from a school system is certain career death.
Several teachers told me I just needed some pills to “take the edge off” (anti-anxiety and anti-depressants), or see a psychiatrist to ease my stress, and I would be fine. I kept telling them that if I could just get to where I wasn’t in pain and didn’t feel tired all the time, I would be ok. As it was, I left my room on March 10th, of 2000, and have not had a job since.
I had fully planned on taking a break and getting my health back and then going back to teaching. My plans didn’t work though, since I never got better, only worse. Several trips to the doctor’s office and several specialist’s later, I still had no answers. What seemed to be my last hope was a trip to see a Rheumatologist. By this time I was, for all intents and purposes, bedridden, but my cough finally subsided. The first trip I got my diagnosis, Fibromyalgia, Chronic Fatigue, and Chronic Insomnia. Little did I know that this was the start of my voyage, and not the end.
By July of 2000 when I got my diagnosis, I was out of money, and had moved back to my parent’s house. I had no house, no social life, and I rarely left the house. The Rheumatologist told me to go for disability, since there was little hope that I would ever work again. So I did. It was almost 8 months to the day from the onset of symptoms.
I got my Social Security Disability in October of 2002. It was a long and hard process that left me deep in debt, and mentally taxed. I had to go in front of a judge to plead my case, because under the Social Security laws, it is almost considered that people under 25 cannot be disabled. Fighting all the way, I eventually won my case.
In the process I had also been tested for sleeping disorders, which had become quite severe, and my diagnosis of Chronic Insomnia was confirmed with a sleeping study. I have since exhausted all treatments related to it, and have become a medical mystery. I have to sleep when I can, and realize that there will be times where I stay awake for days on end. I was also tested for Multiple Sclerosis due to the many symptoms I was showing, but they eventually passed and the tests came back negative anyways.
For a year it seemed that everything was getting better. I had my disability, my pain was managed with Vioxx and Ultram, provided I kept my activity within my restrained limits, and I was starting to do a few things I had to quit, like my music playing. I was spending 3 hours a week in the warm pool at the YMCA doing a specialized exercise program developed for Fibromyalgia patients. Things often change though.
July of 2003 brought on a new problem, a very very rare genetic disorder of the kidneys called Cystinuria. After surgery to remove kidney stones that had completely blocked my right kidney, I actually felt better, but eventually I got back to my “normal” state (which of course is not how a normal person would feel). In August, I was diagnosed with advanced osteo-arthritis of the knees, and probable Rheumatoid Arthritis, and in February of 2004, it was confirmed that I was progressing towards full Rheumatoid Arthritis.
As a condition of my disability I was requited to attend counseling to work on the mental issues caused by the Fibromyalgia. I am continuing to get treatment, but since my diagnosis is “somatoform anxiety and depression” there is little that can be done for treatment. The “somatoform” means that since the condition is caused by another factor (in my case the FMS, CFS, and Chronic Insomnia), the symptoms of the mental conditions would pass if the causal condition is cured (meaning if I was cured of FMS, my anxiety and depression would be also), there is really little that can be done. The best treatment is understanding the disorders I have fully, and engaging in activities that do not worsen symptoms of the other conditions. Medications do not work since there is no chemical imbalance native to my body.
It has taught
me that knowing how my body reacts to life and the things I do, and how that
relates to the fibro, I can use that knowledge to help make my symptoms better.
I fully believe that everyone should learn anything and everything about
their condition through learning, experimenting, and listening to their body.
Finally, when it comes down to it though, realize that you cannot do some
things you used to, but you are still the same person.
I can’t weight lift or play football anymore, but it allows me more
time to focus on my other interests related to music.
My life isn’t over, just different.