I am a twenty something male diagnosed with fibromyalgia and some other related medical conditions. I aim to remain anonymous to most users so I can post freely about my medical history in order to benefit readers on the site.

I have been with my wife for 10 years who is very supportive but works full time and somehow manages to look after me, my daughter and the house. I am eternally greatful for her help and support without which my life would not be as pleasant and I would not be able to do most of the things I still can. We also have a baby daughter who is very much loved and doted on by both of us although she is getting more and more mobile and a struggle for me to keep up with.

This site is intended for anyone wanting to find out about fibromyalgia. I consider my visitors to be in three main categories: A sufferer of fibromyalgia, a friend or family member of a fibromyalgia sufferer, or lastly someone researching fibromyalgia for interest or professional purposes. Due to my condition I consider myself to be virtually bed bound. I spend at least 95% of my time in bed apart from medical appointments and occasionally seeing friends and family, when I am at my best, with the use of morphine. This site is developed entirely from my bed, using my iPad, when I’m able, so updates and content come at irregular times when I happen to be capable. But of course ATOS classes me fit for work (yea right).

I was diagnosed with Fibromyalgia in 2007 however I would say that I have recognised symptoms of fibromyalgia in life memories going back through childhood. Hopefully everyone will find the information on here useful and please feel free to get in touch if you think you have something to contribute.

Twitter
The official twitter account for this site is @My_fibromyalgia

My path to diagnosis

School life – Something’s not right

For most of my life I knew my body was more sensitive than the bodies of people around me. I remember at school I missed out a lot of P.E. mainly due to a problem with my knees, yet there were other reasons too. Despite being fairly fit and generally active, I tired far quicker than my peers and found my response to knocks and bumps, during contact sport, was far more extreme than my friends. I didn’t know what was wrong and although I had an overwhelming feeling that I couldn’t take what others could take, I put it down to my having a low pain threshold. I also found I was extremely sensitive to the cold. My peers were running around the field at school playing sports but I was in total agony. I tried hiding more layers of clothes under my P.E. kit, which to be honest did little to help more than delaying the onset of pain by a minute at most. I found on the flip side I was extremely sensitive to sunlight, I had various quite severe reactions to sunlight, even wearing high factor sunscreen. On one such occasion a doctor diagnosed an allergy to UV light when away on holiday. I have quite strong memories of family holidays when I was younger but most involved being in agony with sunstroke.

I had various tests when I approached the subject with my doctor but it was just put down to depression. This is when I first developed the frustration of negative test results. I knew something was just not right. I was hypersensitive to light, temperature, pain and I found I was just so tired all the time. By the age of 13 I lost interest in school and learning because I was walking round in a fog and seemed incapable of remembering anything I needed to learn. When I started working, my first job involved a lot of walking and although I was used to walking all the time, it didn’t stop it hurting every time. I knew something was wrong, just not how wrong.

Starting work

When I started on the first step of my career I worked full time and normally had Sundays off and one other day in the week between Monday and Saturday. Although by this point I was in a committed relationship, I found that on my days off, I had to sleep not just through the night but well into the afternoon, just to be in a state where I felt able to attend work again. This put quite a strain on life as I didn’t do much more than work or sleep. If I didn’t sleep I would get illl, not just exhausted or in pain, but I would get colds, infections and in the later stages got cramps so bad, I could not walk for a day at a time.

Symptoms are so strong that it drives diagnoses

In 2007 I started training as a Police Officer but found, although I passed the fitness test, I felt ten times worse than the unfit people looked. During this time I went through a period of intense personal safety training, were close quarter contact situations were rehearsed. Some of the methods being taught relied on applying joint locks on people and having joint locks applied in return, to facilitate the learning processes. It was at this time I developed a highly painful shoulder problem. To cut a long story short, it was found that my muscles in my shoulders were not strong enough to hold the joint in place and as a result my clavicle would dislocate, if I raised my arms. I lost the ability to put any part of my arms behind me.

Diagnoses and the frustration of negative tests

After more and more negative results, I was diagnosed with Fibromyalgia. Not many people can understand the frustration you feel, when tests are negative or “all-clear”, as can be the case for people with Fibromyalgia. Here you are, not able to live a normal life because something is wrong, painfully wrong, wrong to the point of disablement, yet all tests come back fine. I am of course grateful that none of the tests showed something sinister, terminal or incurable but still, this problem is so big to you, that you can’t believe that at least one test might show something ‘positive’. Time after time you get no answers, until you are diagnosed with Fibromyalgia, and even then it’s hardly an answer at all.

Work becomes impossible

After I was diagnosed, I put a lot of effort into my career. I felt that if I could survive a two year probationary period in the Police, then I could specialise and move into a role that would suit my condition more. Unfortunately this didn’t happen, I nearly got three years under my belt but my body gave up the ghost and I lost my career. A career that was supposed to last me for the rest of my life. I became almost incapable of work and even though I had to spend the rest of my time in bed doing nothing, that is not me, it’s just not me at all. I managed to involve myself in my friends business. I committed myself to it 100% because I needed to keep going and I knew if I didn’t then this Fibromyalgia would consume me. I decided to work unpaid and managed to keep going for a few more years, sometimes putting in more hours than a full time job. It was good while it lasted, I managed to hold a senior managers position, in practice, despite not being employed or paid and in turn my friend looked after me. I couldn’t have asked for more from him. He learnt about my condition, allowed me to come and go as I pleased, get stuck in or sit back, depending upon my health, but in late 2010 it became too much. My daughter was on her way by this point, my first child but I knew this was it, it had beaten me.

What finished me off

A bout of Gastro-enteritis finished me off, less than 24 hours after the birth of my daughter. That was me out of it for two weeks. I couldn’t go near my wife or child as I didn’t want to pass anything on. This was really hard to do, but we were successful, neither of them caught it. However it was the last straw for my body, from then on I became virtually bed bound and unable to work at all.

Virtually bed bound

I still see my consultant regularly and we are working our way through a list of possible conditions that may be responsible for my Fibromyalgia, or Fibromyalgia like symptoms. However, we are getting nowhere fast and my daily life is groundhog day. Every day I sleep for part of it, awake for bits, I’m tired all the time, in pain all the time, perhaps fall asleep and do it again. I can get out on occasions, with a mixture of luck, help, morphine and timing, on a good day, but it’s no were near enough. I miss spending time with my wife and long to be able to spend more time with my daughter. I wish I had some indication of how long this will last, but I’m not sure I ever will. I could get better tomorrow for all I know and that keeps me going, but it’s not easy. I’m trying to stay focused and be patient in the hope that I can master this condition, or that a better diagnosis is made, or that it vanishes altogether. I guess only time will tell.