Fibromyalgia and how the NHS has failed me.

This is really a follow on post from last Friday's and is related to Di's suggestion that I log the story of my illness somewhere. This in turn has caused me to think long and hard about what ails me and I find that had I had more sympathetic and informed help from the NHS in the earlier stages of my malaise I would not be the the frustrated and semi-incapable mess that I am now.

Fibromyalgia is still not recognised entirely by Rheumatologists here and I counted myself lucky that I had one who had even heard of it, even if I was not told of the diagnosis for a couple of years. The treatment however was sadly lacking, low grade antidepressants, "They act as a painkiller, dear" and graded exercise a la Wessely. No mention of two side effects which would shake my faith in the NHS to it's core.

From the start, the drugs gave me heartburn, I complained many, many times to my, then current, GP. I was prescribed a long series of antacids to the extent that my dentist began to suspect that the chewable tablets were rotting my teeth. I changed to the liquid form and still the symptoms carried on unabated. By this time I was also gaining weight alarmingly. "Exercise more" was the only response I got. Then the gut symptoms were attributed to my weight, I slept propped up ands still had no relief. I tried to lose weight but I just gained more.

Eventually the Rheumatologist did come to my aid. Annoyed that my GP seemed to be fobbing me off, I complained bitterly, I was sent for an Endoscopy PDQ. Result! But not the one I wanted. 5 years of attrition by these drugs had caused my oesophagus to scar and another diagnosis joined my previous two. I now had a trilogy and added Barretts Oesophagus which must be monitored for the rest of my life lest it turn into a cancer as it is wont to do. As for the Fibro, keep taking the tablets was the prescription along with some others to stop their unwanted effects. I was still unhappy about my weight and again and again I was told to exercise.

Seven years after starting the antidepressants I was feeling more and more frustrated, they were not giving me any pain relief to speak of, they were allowing me to sleep but I was foggy all day and had to awaken hours before I wanted to do anything to rid myself of the hangover I always had in the morning. Additionally I was sure it was causing me to gain yet more weight although every single time I had broached this subject I was told it was impossible.

Enter the Internet. I gained a computer at home and began a web search. Within 2 days I had a lever arch file full of articles and information. I discovered that the drug I had been taking had indeed caused me to put on the weight and so I discontinued it overnight. I started taking a supplement that numerous sufferers on numerous message boards had found to be effective. I slept even better and lost the brain fog. I was lively and more alert than I had been for 7 years. When I told my medics what I had done, they dismissed me as a self-prescriber who clung to half-truths and half-understoods of dubious information. They discounted my degree in Science and the fact that I might just understand some of this stuff.

A further 4 years on I saw the Pain Consultant. He too suggested I return to this same drug. I told him my reservations. "Ah yes, bad luck, it can do that." I couldn't believe my ears. If it had not been for the fact that WH was sitting there too, I would have thought I had imagined this whole converstion. Eleven years of my suspicions being discounted and now it was confirmed by an NHS medic in the same room.

No wonder I feel that the NHS has let me down.