Fibro- fibrous tissues
Put it all together and what have you got? Muscle and fibrous connective tissue pain, or Fibromyalgia.
This week the BBC journalist and presenter Kirsty Young announced that she taking some time off work due to her suffering from Fibromyalgia. In an article she writes
‘ I believe that every person with fibromyalgia has their part to play in telling the public about the condition and how it affects us. Each of us has different symptoms and is affected to different degrees – and education and awareness-raising is the way to making others understand what we are going through.’
So inspired by Kirsty, here is my bit about my experience of Fibromyalgia.
The first symptom I remember was the feeling that I had stepped on a piece of glass. This was some seven years ago. I’d been out to put the bins out, barefoot, and the next day and for some days subsequently the pain in my foot continued. There was nothing in my foot. I was cycling a lot at the time- riding a stage of the tour of Britain with a friend, and generally being quite active. The muscle pain I experienced after my rides I put down to getting older. Then a hernia repair went a little wrong. I woke from the anaesthetic in intense pain. Although never as intense, this pain hasn’t really gone away. Also, an area on my upper thigh was completely numb due to the surgeon hitting a nerve. I was offered acupuncture to help manage this pain. On insertion of the first needle pain shot down my leg and radiated. It was unbearable. This wasn’t supposed to happen. The medication offered knocked me out. I would sleep for days on the stuff. I wanted to function and declined further meds.
At the same time, my skin began to itch and burn. My lips burnt. It was as if I had been badly sunburned and the sunburn rubbed with itching powder. One of my ears would become extremely hot. My thermostat seemed broken and I’d get sweaty or cold at odd times. The inside of my ears itched. I was photo phobic. My eyes burned and became blurred. I often experienced stabbing pains, as if I was a voodoo doll being lanced with needles. I was referred to a dermatologist. With no visible symptoms, I was offered light treatment in the hope this would help. It didn’t, but I met the mother in law of one of Leicester City’s championship winning squad. She was a healthcare assistant and we had a good chat while I got into my robe behind the screen.
I went back to my GP. The symptoms were becoming even more diverse and bizarre. I’d wake (or rather get up from a night of poor sleep) with a body full of pain. It was if I’d been beaten or suffered a fall. The soles of my feet hurt. All my joints and muscles ached. I had needle like stabbing pains. My senses were turned up- sound too loud, light too bright, skin hypersensitive. An accidental knock on the elbow felt like a hammer blow. Old injuries felt freshly inflicted. The hernia pain was constant and debilitating. A toe I had once broken felt newly fractured.
I was writing my second poetry collection at the time and typing a lot. Pain ran down my arms and into my hands. I thought I had RSI. My hands were numb at the tips. My neck and back became stiff and painful. Worst of all, and quite frightening, was the onset of chest pain. It radiated into my arm. Was I having a heart attack? Had I broken some ribs? I was exhausted, sleeping poorly and waking in pain and unrested.
Easier to deal with were the flu-like symptoms. I’d wake suffering from congestion, feeling drowsy and not up to much. I often had a sore throat. I’d feel as if there was a tight clamp on my forehead. My balance was impaired. My eyesight was sometimes blurred. I suffered IBS. My gums, tongue, and sides of my mouth were sore. My teeth hurt. I had days when my bladder and urinary tract burned. My urine was dark, no matter how much water I drank. My right testicle ached as if I’d been kicked, my back and leg muscles went into spasm. I couldn’t think straight.
I went back at the GP and was referred to neurology. I had scans and tests, some involving electrical impulses that caused further pain, to rule out MS and other terrible conditions. My scan showed some arthritis in my very painful neck, but otherwise I was ok. I was referred to Rheumatology. After seeing a few more doctors, I was offered a diagnosis of Fibromyalgia. I say offered, because the consultant wanted me to decide whether I wanted the label or not. I took it gratefully. At last I had something with a name, even if it was a condition subject to debate (some claim it doesn’t exist), even if it is currently incurable.
Everything above I’ve written in the past tense but I still suffer most of these symptoms on a daily basis. Some days are better than others. I find exercise hard and have put on weight. I am constantly tired and suffer from pain and discomfort. If I travel anywhere I usually have an intense flare up of symptoms upon my return. Small daily tasks can seem like huge undertakings. My memory and powers of concentration fluctuate. Unlike fellow sufferer Lady Gaga and Kirsty, I don’t have access to a range of alternative therapies and the support that their respective financial positions afford them. I am pleased for them and others who have the means, but such treatments are expensive. I have found the medications I’ve tried to date to turn me into a zombie. I was offered a pain management course but was unable to commit to attendance as it would mean missing work. The prospect of spending all day there seemed too much too. So I do what I can, when I can. I’m luckier than some ( I don’t feel the need for walking aids or mobility assistance) and I bear this in mind. I’m an ex nurse and have seen people suffering from much worse so this also helps get a sense of perspective. Since being diagnosed I have met fellow sufferers. Everyone’s experience is slightly different, but it is always good to meet someone who understands some of what you are enduring. I’m with Kirsty Young who says
” I hope that one day, when someone asks what is wrong and I answer, “Fibromyalgia”,
I will not get the reply, “Fibro what?”