Thursday, September 08, 2011
An average day with fibromyalgia and M.E.
Recently I realised that I am very wary of talking about my illness and how it affects when a family member asked for the umpteenth time what is wrong with me so i sent her the following description of my symptoms on just one day last week plus leaflets for Fibromyalgia and Myalgic Encephalomyelitis (M.E.) / Chronic fatigue syndrome (CFS) Thank you for wanting to know more, I am perhaps a little reluctant to talk about it all for a number of reasons, they are complex chronic illnesses with such a variety of symptoms that knowing where to start is a problem in itself and it would probably be incredibly boring for you plus it gets me down to dwell on it all too much. For example, if you were to ask how I am today… the honest answer is shattered as I have been awake since 2am, insomnia has returned recently as part of a more generalised flare up, after a fairly long period of sleeping better due to my GP prescribing nortryptaline after consulting a rheumatologist at the Friarage… Today I also have lower back pain which has been getting worse over the past week and cramps that had me doubled up this morning, probably due to my irritable bowel syndrome (IBS) which was diagnosed when I was about 22. The doctor recently changed my prescription for IBS as I was soiling myself, hope that settles down. I cannot take any anti imflammatories for the back pain as I was advised to stop them while I have symptoms of gastroesophagal reflux disease (GERDS) – the camera to have a look at my upper digestive tract next week is to check this out. I am thankful that it does not seem to be as bad as a previous period of digestive tract inflammation during which it was inflamed from mouth to bottom, a terrible time. Today the GERDS is tolerable with plenty of gaviscon. The dry eye syndrome is also annoying today but not as bad as it can get – in cold wind my eyes turn bright red and stream tears because they lack the natural oily lubrication….Plenty of neck pain too today plus a fuzzy headache, though again I am thankful it is not worse, as I also get visual migraines which affect my vision so I cannot read or watch TV nor drive.. Basically, I never know how I am going to feel one day to the next, I did rest last Friday as we were looking forward to meeting up at the Village Inn but was still too tired and out of sorts to get ready and had to give up half way through doing my hair. I will stop there and let you read the leaflets, as to try to list all the symptoms I enjoy at different times would wear us both out. Hope all that helps explain a little, but if you want to ask me anything about M.E. or Fibro or managing these chronic conditions, fire away, by email is often easier for me especially if I have brain fog which can leave me feeling totally moronic,.. Take care Love Jennie 30th August 2011