LIVING WITH FIBROMYALGIA


I've found it so difficult to put in writing how it feels to have Fibromyalgia, without getting morbid, or sounding negative ..... one has to be positive.

        Well, what does Fibromyalgia Syndrome (FMS for short) mean.  Well, to put it in a nutshell, it means, having 'muscle pain throughout the body'.  You have brain-fog, - you forget things - its not uncommon to find that you've put the dinner in the fridge, and the milk in the oven!!!  You are 'tired all the time', (hence the diagnosis for some people with M.E without FMS being thought of). you get insomnia, depression, panic/anxiety attacks, irritable bowel syndrome etc.

        I've had pain all the time, in fact I can honestly say that I've never had a completely pain free day in all my life (I'm now in my late 30's).  You visit doctors, and they class you as a hypochondriac, or put it down to stress .... nearly all FMers that I know have gone through this.

        Back in 1990 (I remember the day, Friday 13th September - it would be wouldn't it!), I was travelling to work by bus in Coventry (West Midlands), I was stood at the back of the bus, with my left hand on the silver pole that the bus had to hang on to, the bus suddenly stopped and I was jolted forward and fell headlong along the narrow corridor between the seats down the middle....... the pain was immense, but since we were so short staffed at work, I carried on to work, with another bus journey (now I look back on it I really should have gone to the hospital) ....  On the way home I suffered another jolt on the bus, this time as it was coming to the bus-stop.   A few days later I came down with Chickenpox, so had to spend nearly two weeks in bed.

        A few weeks later I saw a rheumatologist, who diagnosed Fibromyalgia .... he said it was a 'rare' syndrome, and that there was a support group run in Stockport, Cheshire.  I rang them, and Barbara, who ran the group at the time, gave me lots of info about the condition. Later, in 1993 during another telephone conversation with her she asked me to set up a group for Lincolnshire (which I duly did) as I was moving up to Lincolnshire to be with Paul, as we'd just got engaged.

        The local group helps up to 250+ people in Lincolnshire with FMS.   If you want to know more about Fibromyalgia, then the United Kingdom site can be found at www.ukfibromyalgia.com; and we have an email group for those in the UK, which was set up by a good friend of mine Abi Gurden, who also has FMS, and lives in the south of Lincolnshire; send an email to fms-uk <fms-uk@smartgroups.com>, leave the subject line blank, and only put in the body of the email 'Subscribe and then your name' (note: don't use the quotations like I have done).  But don't worry, we also have a FMS sufferer on the email group from Holland, but it is really set up for those of us in the UK.

        I don't think I could have done what I now can, without the love and support of my husband Paul, and to him I will be always eternally grateful.
 
 

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