For Fibromyalgia Awareness Day on 12th May, I’m raising awareness by sharing my fibro story up to this point. I have been blogging about my experience with chronic illness and particularly fibromyalgia since July 2018 and ironically this is also my 100th post, so a good time to reflect on my fibro life.
Fibromyalgia is a chronic illness with a list of over 100 potential symptoms. The main symptoms for most are pain and fatigue in varying forms.
It is currently unknown what causes fibromyalgia but research shows that it could develop from trauma. In most recent studies they have found those with fibromyalgia have an altered response to pain.
The best way I can explain this is: a healthy person has a virus and their system goes into high alert, the body aches and the fatigue hits. Once the virus clears you return to your ‘normal’. With fibromyalgia your system is stuck in high alert no matter what, making you feel like you have the flu 24/7.
Symptoms are unique to each individual and currently there is no known cure or treatment. This means that one medication may help one person and hinder another.
Personally my main symptoms are constant pain (sometimes all over, sometimes one specific area is worse), muscle weakness, severe fatigue, IBS and brain fog. Although I have other symptoms on and off such as infections, these are the ones I suffer with the most. Symptoms usually worsen in colder weather.
My fatigue has been slowly worsening over the last few months where it used to only be a minimal symptom. The worse the pain, the worse the fatigue and vice versa. I see fatigue as a wall that cannot be crossed. Once I hit the wall, there is no way around it. I have to stop.
I often struggle to string sentences together, am increasingly clumsy and can be extremely forgetful about anything and everything. It really frustrates me, can be quite embarrassing and makes me feel stupid. It can also make me feel hungover on life.
I find it hard to admit when I’m struggling so I use my words carefully to work around this. For example I say “I’m Tired” when I’m having an extreme fatigue day. I’m learning to be more honest about it but there is still a way to go.
I have not had a symptom free day in about 2 years and over time it has gotten worse to the point I am at now. I have better and worse days and flare ups where my symptoms worsen over a time period from stress, overexertion, the weather and other factors.
My flare ups are worse when I overdo it, but it is very hard to know when you have done too much. I have a delayed response where I feel fine on the day but the next day I suffer for it. My limit changes every hour or every day so often it’s too late when I realise I’ve overdone it.
I have finally found a GP who listens to me though she still doesn’t know much about fibromyalgia like so many others.
I personally try to stay away from medication unless I’m in a flare up. This is mainly because I have noticed since I was diagnosed I get side effects to most medications. Its often not worth taking medication to slightly reduce the pain and give me 3 other side effects to manage on top of the pain.
I use other methods to deal with my symptoms and flare ups including heat packs, Pain Slayer (a natural muscle rub), rest when I need to but also try to stay active as doing the opposite weakens my muscles and causes even more pain.
Due to needing to rest a lot and my lack of energy I have to prioritise activities. Most of my days off from work I have to rest and recover rather than meeting friends or going out. Usually putting my social life on hold is a necessity not a choice. This does mean I often cancel plans if I’m not feeling up to it but also makes me appreciate my time more when I do go out.
I am lucky that where I live there are a few courses available on the NHS that I have/am making use of. At the end of last year I did a Tai Chi for Fibromyalgia course that was insightful. I learnt pacing and more about the condition as well as meeting others with fibromyalgia. I didn’t find tai chi useful to myself, mainly as doing things very slowly only brings more attention to what is hurting, but I have heard it works for others.
I am now taking a course called HealthMakers for anyone with a long term condition. I have only done 2 weeks so far but again it is quite useful to me and I will give anything a go if it could help.
I always try to stay positive although it can be hard when you live in pain 24/7. If fibromyalgia has taught me anything, it’s to appreciate the smaller things and the beauty in life and the importance of good friends.
I respect myself a lot more nowadays am I am learning to put myself first. I realise that Me Time is crucial for my mental and physical health and wellbeing. I know that I am stronger than my illness.