How Fibromyalgia affects me

What is Fibromyalgia? is it just an excuse to be lazy?

The term “fibromyalgia” is from New Latin, fibro-, meaning “fibrous tissues”, Greek μυώ myo-, “muscle”, and Greek άλγος algos, “pain”; thus the term literally means “muscle and fibrous connective tissue pain”. It also sometimes referred to as chronic pain syndrome. According to the NHS, 1 in 20 people suffer from Fibromyalgia. That equates to approximately 1.76 million people in England, Wales alone.

Arthritis Research UK, alongside the University of Nottingham and local NHS trusts, is supporting the world’s first national centre for research into understanding the mechanisms of pain in musculoskeletal disorders. The Arthritis Research UK Pain Centre aims to:

• investigate how people experience pain
• understand the biological basis of pain
• develop new drugs to treat pain more effectively
• improve the effectiveness of currently available pain-relief drugs
• investigate basic pathways of pain perception to identify new targets for developing treatments.

Experts in rheumatology, neuro-imaging, psychology, neuropharmacology, neurosciences and orthopaedic surgery will all play major roles in realising the ambitions of the centre.

Arthritis Research UK is also funding a study which aims to identify specific markers which could be used to develop a diagnostic blood test for fibromyalgia.

Diagnosis of fibromyalgia comes from ruling out other potential conditions, such as Osteoarthritis, rheumatoid arthritis and thyroid problems. Some of the symptoms are similar to lupus, MS, gout and chronic fatigue syndrome. I had to have various blood tests done and found out that my vitamin D levels were dangerously low and also my Iron was low too. I had x-rays to rule out gout and arthritis too. It took many years of undiagnosed painful scenarios with negative results before a doctor referred me to a muscular skeletal team. Within a few minutes of being with the muscular skeletal specialist he was sure that I had fibromyalgia and at last I could be treated properly.

Over the years I have severe pain in my knees, lower back, big toes, foot arch, shoulders, neck, wrists, fingers, forearms, thighs, calves and shins. Sometimes when I eat my jaw cracks, and when I yawn my lower jaw muscles tense up which is extremely painful. But the biggest problem of them of them all is sleeping. It can take me hours to get to sleep as slightest noise will disturb me, but once I am asleep I cannot wake up. It can take me a good hour to wake up properly, and a cup of tea before I am conversational. This partially due to me being extremely light and bright sensitive. Electric strip lights, direct sunlight, anything that is white and bright, (think houses on a sunny day, cars in sunlight, oncoming headlights at night). I have been tested for sleep apnoea as I snore and have difficulty getting to sleep. I actually find it easier to sleep in the day than at night, like I’m naturally nocturnal. The sensitivity to light causes me to have migraines. I’m talking, nausea, auras in my vision, dizziness, and a pain that sears through my skull like a lightning bolt. I’e been told that people can tell when a migraine begins as they can see the colour drain from my face and turn grey.

Sleep is when our bodies do the most healing. Lack of sleep can cause many problems, including widespread pain. To tackle this issue my doctor prescribed a low dosage anti-depressant which worked quite well for some months but I became immune to its knock out effects and then my doctor switched me over to a different anti depressant with a drowsy effect.  When my body began to resist this too she prescribed an anti allergy tablet that causes drowsiness, it also helps me with my hay fever too. To prevent my migraines my doctor prescribed anti-migraine tablets.

For a good year, my sleep was much improved and so my pain levels very low and easy to manage. And then came winter with its snow and ice. The pain in my knees, feet and hands increased and I was prescribed strong pain killers, which did work but wreaked havoc with my, already troublesome, periods. But Spring came and so the general aches and pains were relieved somewhat, but the headaches got worse. I had my eyes examined and was told that my prescription had changed a little. and the new glasses did indeed reduce my migraines for a while. Then one day whilst I was sat at my desk working I felt pain at the back of my head. Very much like a migraine had nausea and dizziness and my head was pounding. As I work from home, I took some pain killers and went to bed. I woke up and my head was still in agony. I made a doctors appointment and was prescribed a stronger pain killing medication, which does seem to reduce the pain of the migraine but doesn’t totally get rid of it. This headache has so far lasted 5 weeks continuously. The only relief I get from it is when I am able to sleep.

I have lost count over the years I have labelled a hypochondriac, or lazy. As a child growing up I was told it was growing pains, or normal. I’ve had doctors tell me there’s nothing wrong with me, following a camera in my knee I was told that I had a very healthy knee for a woman of my age. (I was 26 at the time). Or it would be blamed on my polycystic ovaries, a hormonal imbalance. I didn’t get a proper diagnosis until I turned 37 although my GP had her suspicions since I was 35 it took that long to get my blood levels normal and all other possible causes ruled out.

It is an invisible illness, and it is very real. It can be debilitating on many levels. I have so far concentrated on the physical symptoms but there are psychological problems caused too. Depression, and anxiety both have a nasty habit of creeping up and knocking me down. I love going walks in the countryside, seeing nature at its most beautiful. But now I have to be very careful, as walking too far causes me pain. I often cancel plans as the pain levels are too high to bear. Knowing this has a negative effect on my mood, and I have to prevent myself from beating myself up over it. Keeping friends is hard, as every time I have to cancel is another reason they think I don’t care or not want to be there with them. Now add to that the “fibro fog”, aka “brain fog”, which means I have memory problems. I might not realise that there were plans today until I get a text asking if I’m ready to go. It all adds up to people not bothering with me as they kind of know I wont be able to go, or do whatever it is they want to do. But they don’t understand why and when I try to explain to them I am ill I get the ” you don’t look ill” comments which really grinds on my nerves because it means they haven’t ever bothered to listen to me about my illness.

To you the person reading this I ask one thing only. The next time a friend or family member cancels plans due to an invisible illness, don’t dismiss them as a lost cause. Make the extra effort to go and see them. Never tell them to snap out of it, pull themselves together, or claim they don’t look ill. You wouldn’t tell a blind man to look harder or deaf person to listen more carefully. So don’t tell someone with an invisible illness they don’t look ill, as you will only be adding to their anxiety and depression.