Would you believe it if I told you I spent a lot of time in my early 20s relying on crutches to walk? Practically bed-bound because I refused to leave the house in case anyone saw me dragging myself about on the sticks? Depressed? Physically weak? Probably not if you met me in the past 4 years, but that is an accurate description of my day to day life a few years ago. You can read my full experience from a patients perspective in this other blog i wrote!
I was diagnosed with fibromyalgia in 2016, and when the symptoms were at their worst I was suffering badly. Undiagnosed, monthly blood tests, repeated scans, strong pain meds that weren’t coming close to taking the edge off and doctors appointments all telling me I was healthy.
After diagnosis it took a little while for me to learn my limits, figure out what triggered the pain, made my brain fog worse, helped me sleep better. It felt like a never-ending minefield but I managed it but with nothing but a presciption for 2 medications from the consultant. No information about the condition, or where I could find support… not even a pamphlet! Lucky I was half way through a degree in osteopathy otherwise I wouldn’t even know where to look for help.
To mark Fibromyalgia Awareness Day (12th May) I’ve got a few frequently asked questions I’d like to answer, for people who are too shy to ask me when they find out I have this condition, or for people who think they might have it and are looking for answers.
What is fibromyalgia?
Fibromyalgia is a chronic pain condition, meaning it causes widespread pain throughout the body. Other symptoms can include, fatigue, problems with memory and concentration (brain fog), sleep disturbances, increased sensitivity to pain, stiffness, headaches, irritable bowel syndrome and gut problems, depression and anxiety.
How did you get diagnosed?
There isn’t one diagnostic test so I underwent several different tests and medications to rule out the possiblity of other diseases or conditions that could be causing my symptoms. It was a long road, with more blood tests than I can count, an MRI, a few x-rays, physical examinations, physio, a DEXA scan and a trial of lots of pain medications. When the doctors were satisfied I didn’t have anything else I was told it was fibromyalgia. I saw several types of doctor personalities which helped me to shape the type of healthcare professional I wanted to be one day (although I was nowhere near qualified at this point!)
What does fibromyalgia feel like?
No two people with fibromyalgia will have the same experience because it is a syndrome. Imagine it as a pick ‘n’ mix bag of sweets but the sweets are symptoms, the bag is your body and the person scooping has their eyes closed.
During a flare up, my experience of pain is best described as having petrol poured on me and being set alight, or like lots of tiny people with miniture chisels are hammering away at my bones. Sometimes it feels more focused in my muscles and other times it’s my joints. If I had a few drinks the night before then it’s both! The rest of the time I live in a state of low level pain that I’m quite used to ignoring. If I get too cold it’s like being stuck with 100s of needles which is why I have such a big winter coat. I lose my words a lot or forget the point I was making mid-way through talking. I have several diaries and calendars because if it’s not written down somewhere I won’t remember. Weirdly the only information I actually store in my brain is everything osteopathy. If I get stiffness it’s usually felt mostly in my neck, hands and feet, making it difficult to use my hands or walk. It doesn’t matter whether I get a solid 9hrs sleep, 6hr uninterupted or 8hrs where I wake every 20 minutes… I am always tired and if I’ve got a burst of energy I will become fatigued very quickly. I’ve always been an anxious person and low mood hits if a flare up is prolonged or i’m frustrated by my limitations but I try to find the positive in everything.
This all makes my life sounds very grim and awful but I promise that it’s not! I have developed many coping mechanisms to handle each aspect of my symptoms.
But you don’t look sick!
I know, I could quite easily pass as a healthy person *shocked face*. I spent a lot of years learning about what I can and can’t manage, what triggers a flare up, what helps me overcome a flare up and how I can adjust my life to limit the symptoms. There is a saying in my house “always assume that I’m in pain, but if I tell you I’m in pain then it means I’m in agony”. This is because if I was to tell my boyfriend when I’m in pain it’s all I’d ever have time to tell him! I still get feelings of frustration when I would really like to be able to do something but physically cannot achieve it at that moment. I have a lot of motivation and the wrong body to follow it with!
How do you manage your fibromyalgia?
With a strict exercise routine, sleep schedule, balanced diet, avoiding triggers like alcohol or uncomfortable high heels, taking my medication, monthly massage or osteopathy appointments, using talking therapists to vent to someone not emotionally involved in my life. I also developed a good (dark) sense of humour but most importantly I listen to my body and slow down when I need a break. I’m not always that good at the last one but my partner is great at recognising when I’m doing too much and reminding me I’m allowed to sit down or take a nap if I need it! I didn’t get diagnosed and instantly jump into this routine of self-care, it has been a long process of trial, error, persistence and resiliance.
Can fibromyalgia be cured?
No, there is no known cure but it won’t kill me. Accepting that this is the way I live and that my needs can be different to others really helped me not to sit in the depression a chronic condition can bestow upon you. It took a while to accept it but I focused on symptoms management one step at a time instead. It has defeinitly tested my ability to say “no” to things and stick to my boundaries.
What causes fibromyalgia?
No one actually knows the exact cause but it’s thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (the brain, spinal cord and nerves) processes pain messages carried around the body. It appears to be triggered by a physically or emotionally stressful event, such as an injury or infection, giving birth, having an operation, the breakdown of a relationship or the death of a loved one. In my case I lost my grandad at a very early age with whom I had a strong bond, got glandular fever as a teenager and the stress of uni really compounded the symptoms later on.
Hopefully this clears up a few curiosities! I’m more than happy to answer more questions, this is just a selection of the common ones. The more information about fibromyalgia the better because in the 200 years since fibromyalgia was discovered the diagnosis journey still takes a very long time, there is no known fully-effective treatment, there are only 3 approved medications to help ease symptoms and some doctors still don’t know what it is or what the reality is for people who live with it. We need more research and public & medical awareness.
Spread the word and share this far and wide!