I cannot say for sure when I started experiencing the symptoms of Fibromyalgia. I remember as a child, waking up screaming with pain in my legs. Then again, I was born with flat feet and I remember being told that some people do experience a lot of leg pain because of it. When I was about 11, I began having severe headaches. I remember I would sit on the floor crying from the pain and even banging my head against the wall because the pain from banging my head felt better than the headache. I suppose they were migraines, but the doctor told my parents that children do not get migraines. The headaches "disappeared" when I was about 13. However, I do not remember a time I did not experience pain in my legs. I grew to ignore it and rarely did it interfere with anything I chose to do.
In '74, after a few tests (my leg pains had increased in severity), a rheumatologist told me I had Rheumatoid Arthritis and was put on an anti-inflammatory. This diagnosis was confirmed by a number of other rheumatologists until November 1996 when I was given the Fibromyalgia diagnosis and was told there was no sign of RA. I had stopped taking the anti-inflammatories a couple years before because the pain had increased to the point that the pills did not help.
Do the doctors think the leg pains in my youth were the indications of beginning stages of FMS …. That's a possible maybe. Do I think so? No. An emphatic no actually.
I believe my FMS started in September of 1990. While at work one day, I was suddenly hit with a bout of severe abdominal pain. It was so severe that it literally knocked the breath out of me and doubled me over. A couple employees helped me to my desk and the three of us stared in awe as we witnessed my shirt bouncing out from my body as if something was in there trying to get out. Believe me, the movie Aliens came vividly to mind. This first attack lasted about 15 minutes and then just as suddenly as it started … it stopped.
I went to the doctor and explained what happened and he scheduled some tests. Thank you to socialized medicine and long waits, I was going to have to wait about a month for the tests to be done. Within 2 weeks, the attacks had escalated and increased in severity to the point that I could not go into work. I was taking massive amounts of painkillers and anti-spasmodics, muscle relaxers and anti-inflammatories. My system had been so savaged by the attacks I had constant abdominal pain for which the medications did offer some relief. Nothing worked when the abdominal attacks hit. The attacks became so much a part of my life in such a short time, like a constant companion, that I called the attacks "Herman". Two months after I had to stop work, after having seen 6 different specialists in 5 different hospitals all over southern Ontario and each telling me it was all in my head (like daaaaaaa …. My head causes my shirt to go wonky every time I have an attack), I was sent to see a specialist at York-Finch Hospital in Toronto.
This specialist decided to use a scope. I was put under general aesthetic and he and another doctor each took a scope and an end. I don't know what they did in there …. Shake hands or something when they met in my stomach or something. Anyway, in the middle of the procedure, Herman made an entrance. A really good one from what I understand. Afterwards, the specialist told me that if he hadn't seen it, he never would have thought it possible. Apparently, what was causing the pain, every internal organ in my body, from the oesophagus to the anus was going into spasm at the same time (naaaaaa … do you think???). Between him and my GP (I guess), they decided that it was "just some weird virus" and that no further testing would be done because I appeared to be the only one affected and it didn't appear to be life threatening. Well, gee, thanks.
A month later, the spasms stated to subside a bit. Less severe, and they would only happen maybe once an hour or so and be really severe for only a few minutes. I went back to work and just learned to deal with it. Within a few months, the pain in my legs started to escalate. I use to take 400 mg Motrin when I would feel the pain in my legs increasing. For years, a prescription for 100 pills would last 3 or 4 months. Within a short time I was taking 600mg tablets. By the end of 1991, I was taking 24 x 600mg Motrin a day and it was not helping the pain. By September of 1994, after trying every new drug available (I think) I gave up and decided to "just deal with it".
In 1991 I first noticed that anxiety (panic) attacks were starting to affect my social life. I also noticed that I was beginning to not be able to deal with stress as effectively as I use to. In April '93 the constant headache appeared. I was off work for a few months until I was able to cope with the pain of having a 24/7 headache. Obviously nothing the doctors gave me helped. All the tests and specialists could not come up with a reason for it. In Sept. 93 I was sent to a sleep clinic, because of the headache and also, although I didn't appear to have any problems sleeping, I would wake up feeling as tired as when I went to bed.
In June 93 I started having problems with my memory, which had always been exceptional. Sometime in the same year I became aware of sudden mood swings and difficulty managing my anger. In June 94 I noticed a problem beginning with cognitive dysfunction. By June of 95, the symptoms I had been dealing with had grown in severity that it was evident to co-workers and my employer. In January 96 the pain had escalated to the point that I was limping all the time and, at times, had difficulty even getting my legs to move.
In order to have the energy to work, I could not do anything besides work. I would come home after work, sit in my chair and do nothing. If I did do anything extra, I could not go into work the next day due to total and complete exhaustion. As the months dragged on in 96, it got so even my weekends were used up doctoring myself so I could go into work on Monday. By the time I got home on Friday night, I would be totally exhausted but the pain in my body was so great that rarely was I able to sleep on the Friday night. By Saturday night ... as long as I had remained immobile for the 24 or so hours before ... the pain would ease so that I could sleep and it would take that night and the next for me to recover enough to go into work on the Monday. It had been a few years since I had been able to go out to a restaurant with friends, or join them for a few drinks in a bar, see a movie, go to a concert or play. I had had to give up the yard work, I so enjoyed, in 91 due to the increasing problems with my legs - I had hired landscapers to do the work.
By June of 96, I was struggling to do my job. I was the General Manager of a company in Concord (suburb of Toronto) and had been for 11 years at this point. Besides work, my life had degenerated into trying to just keep my sanity. Despite 6 years of testing and a constellation of specialists, there was no evidence of there being a physical problem. My life was filled with constant pain, constant headache, memory and cognitive problems, constantly tired, mobility problems, severe mood swings, recurring abdominal spasms, inability to sit for more than a span of minutes, travelling muscle spasms, increasing anxiety (panic) attacks and the stress I was feeling was off the scale. I had forgotten how to modify computer programming that I had developed for the company ….hell ….for weeks I even forgot how to access it. I was forgetting long time customers' names. It took me 1/2 an hour longer to get to work and home again because I had to stop every 10 minutes or so to get out of the car and stretch because my muscles would spasm and tighten to the point I was almost in tears. At the end of June I told my employer that due to everything that was happening I had to leave my job and that I was giving my promised 6 month notice.
Reluctantly he accepted my resignation and I began the task of training others in my duties. By the middle of October 96, I was only able to make it into work 2 and maybe 3 days a week. The days I was there I spent a lot of time in the washroom literally crying because of the pain and frustration I was feeling. At the end of October, my doctor told me that he did not care what I said, he was taking me off work and there would be no arguments. Admittedly, by this point, I too was concerned about my mental health and stability
Work has always been a great part of my life. I love to work ….it helps define the way I see myself and the person I am. But I had no alternative. I had decided I would try to develop a business I could work at from my home. Unfortunately, I had waited too long. My symptoms kept increasing in severity and my ability to cope with what was happening to me dwindled.
Here I was, 43 years old, a man who until a few short years before had relished life and activity - now had all these things happening to him. The tests all negative. The doctors as bewildered as I was over the cause of my decline in health. My GP was convinced, as I was, that this was not caused by a psychological problem, even though there were symptoms that dramatically affected me psychologically. My GP, who had known me for years before this all started knew that mine was not a personality that should experience these mental difficulties. He had witnessed my physical and mental decline and felt as frustrated as I did with the lack of any improvement and the continuing decline I was experiencing .
In November 96, a new rheumatologist I was sent to came up with the Fibromyalgia Syndrome. I had never even heard of it. He gave me a few brochures and referred me back to my GP because he "does not treat FMS patients". The brochures he gave me were crap ….my GP could not tell me anything at all about FMS …so on to the internet I went. In fact, that is where I have found most of the information that I have on FMS.
I continued declining through 1996. I now was told I could add Chronic Fatigue and Chronic Depression to my list of symptoms. I had also developed "on again, off again" problems with my vision and my hearing. My chronic pain had increased in severity to the point my skin and hair hurts. A hug or caress on the arm will almost bring me to tears and it will take hours for the increased pain that that action brings to start to ease. It was also during this period I started to experience intermittent problems with Irritable Bowel and Urinary Urgency. In 97 I developed testicular pain. At first it was occasional but has now developed into 24/7 sensitivity and occasional down right bouts of agony that last for days. The prostate is also involved apparently. Again, whole whack of tests that showed nothing.
In 1998 my right foot started to swell …. Gout they said. After the tests, no gout. But my foot kept on swelling from time to time. The anti-inflammatories they tried me on eventually caused me to swell up head to toe. By November 98, I chose to eliminate all medications. They were not helping me and felt they could only be poisoning my system or masking any effects that some future prescription or alternative medicine may have.
At the present time, my feet (both) will swell, along with my legs, arms and hands …. But it must be all in my head because medical science can find no reason for it to be happening. (Addendum December 99 - the Rheumatologist took a sample of the fluid around my big toe. It was determined that I do have gout as well as pseudo gout. I am now on regular medication that, so far, have stopped the swelling .... knock on wood quick). I still experience ALL the other symptoms - but each day it seems they take turns with which symptoms are going to be worse. I feel I am caught in an ocean of symptoms being controlled by their own ebb and flow pattern - and I have absolutely no control over any of it.
I am currently existing on a Provincial disability support program funded through the Social Services. For some reason, the Federal government (through their CPP Disability - which I have paid for) and Manulife Financial (Long Term Disability benefits paid for by my employer) have both decided that although I have submitted paper work from 8 doctors and specialists stating that I am unable to work at any job …..they each have a RN that says "the doctors are wrong … he is not disabled". The doctors state that I am legally disabled, using any definition or criteria, taking into account only one of the five major diagnoses which are lumped under the heading of Fibromyalgia. These agencies could take their pick … the Chronic Pain, Chronic Fatigue, Chronic Depression, Agoraphobia or Chronic Headache. Each of these on their own is severe enough that I should be automatically qualified for benefits. Lump them all together and then throw in the memory and cognitive dysfunction, anxiety/panic attacks, the irritable bowel and bladder, the immobility, stress and swelling (all which each has a severity that considerable in itself) … then wrap it with a ribbon and tag it Fibromyalgia - suddenly ….no matter what the doctors say …..these agencies slam the door. I have paid for disability coverage from these people. I have more than met their minimum requirements ….and yet they still will not allow me what is due.
(Addendum December 1999) - in November I received a letter from the Department of Justice advising me that I am eligible for a Disability Pension from CPP and they are ordering CPP to begin payments from September '98. I had a choice to either accept this settlement .... or ... go to court (in about 2 or 3 years when my case would be scheduled) and risk the judge finding against me. I chose to settle .... a bird in the hand thing. And too, I am really tired of fighting.)
Anyway … I kind of went off on a tangent there. Sorry.
