Fibromyalga

Following discussions in the Disability Awareness Chat I recently interviewed someone with the condition to find out more about what it was and how it affects them.

1. What is fibromyalgia

Fibromyalgia (Fibro) is a chronic pain condition that affects the central nervous system that causes pain throughout the body. This means that the slightest and lightest touch can be extremely painful. I mostly get pain in my arms, legs and back with my Fibromyalgia. As well as the pain I get other symptoms like Irritable Bowel Syndrome (which yes is a symptom of Fibro), I am unable to regulate my body temperature, my hands can get stiff if they get too cold, I get burnt out if I do too much and I don’t take rest days and I also get extremely fatigued which is part of the Chronic Fatigue Syndrome (CFS) that a lot of people find goes hand in hand with Fibro.

2. How long have you lived with the condition

I was diagnosed with Fibro in October 2022 when I was 23 years old, I was turning 24 in 4 month’s time in the February of the following year. The GP had no idea what was wrong with me and I took it upon myself to do my own research. While doing my own research I discovered there was a connection between Fibromyalgia and IBS, something that I had been diagnosed with when I was 17 years old in April 2016. I went back to my GP and presented my findings; the GP wrote to rheumatology who wrote back to her within 2 weeks confirming they supported her diagnosis of Fibromyalgia.

Unfortunately, most people wait several years to be diagnosed. Those who live with Fibro are predominantly women and a lot of women find that they aren’t believed and aren’t taking seriously enough by their GPs. Being a man with Fibro can be difficult when you are part of the minority, I have only met a handful of men who also have Fibro like I do.

3. How does it affect your day to day living e.g. any set diet requirements, unable to complete certain day to day activities

It varies really, every day and each day is different with my Fibro. One day I can have all the energy in the world, and I can be a very able-bodied human being (well as able bodied as I can be for a disabled partial wheelchair user). Other days? It can take me 1-2 hours to properly wake up and get out of bed because even though I have slept the full night, I am exhausted and in agony.

There are times where I have to cancel plans at the last minute because my Fibro has flared which I hate doing but I am grateful and thankful that I have a great support network of people who understand. My partner has been amazing with learning and understanding about my Fibromyalgia. He had no idea about the condition when we first got together but he was keen and eager to learn. He does everything he can to support and help me during a Fibro flare. My mum is also so understanding and supportive. She is always there as and when I need her, my mum is truly my rock.

Fibro affects my social life as well as my love life, it affects me being able to spend time with the people I love like my mum and my partner. It is a tough condition to live with.

There is no special dietary requirements although some people find that not eating certain foods can help, that hasn’t been the case for me.

4. What could other people do to make things easier for people living with the condition

Understand more and have a bit more consideration. Nothing frustrates me more than people who claim Fibro isn’t a thing or that people are faking it. The pain I live in I can assure you isn’t fake and it is very real. There needs to be more of an awareness and understanding regarding Fibromyalgia and the symptoms it can cause. I think workplaces need to be more understanding as well, a lot of people with Fibro would like to work but they can’t because the lack of understanding and awareness within the workplace about Fibro. A person with Fibro needs adjustments in place just like someone who is autistic does within the workplace. It should not be that difficult for work places to do this and to make adjustments in order to help people maintain their job and be able to work.

5. Any additional information you think relevant

One thing I have found that really has truly been life changing for my Fibro has been taking up strength training. I started strength training in June last year and it was one of the best decisions I have ever made. I worked with a great Personal Trainer for 4 months so I could learn how to strength train safely and properly. I have been doing my strength training on my own since October last year and I now have gone from going to the gym twice a week to going to the gym three or four times a week. I know my limit is our times a week, just now I can’t manage that and that is okay. Going to the gym three times a week is plenty and I love it. It has and does help so much with my Fibro regarding the pain, I now rarely have Fibro flare ups which is amazing. It has benefitted my physical wellbeing in other ways as well. Since June last year I have lost over 2 and a half stone in weight which is amazing and something I never thought was possible and that I would be able to do after struggling with my weight and an eating disorder as well.

Strength training also helps my mental wellbeing as well. I don’t just do it to keep fit and healthy, I do it because it is a form of stress relief for me as well. One of the best pieces of advice my old PT gave me was if you are ever feeling stressed and you can? Go to the gym and throw about some weight, you will feel so much better and I can 100% say that he is and was spot on! It’s now advice I live by!

I must stress though strength training isn’t something that helps everyone! Some people find that it helps their Fibro, other people find it makes it worse. You won’t know until you try how your Fibro is going to react to it.