It’s a new week and therefore a new instalment in my ‘Living with…’ series, and this week we are talking about Fibromyalgia. You can view previous posts in the series about Tourette Syndrome here, PCOS here and UCTD here.
So let’s get started on life with Fibromyalgia. Fibromyalgia is described by the NHS as a long-term condition which causes pain all over the body – but trust me it is so much more.
As well as pain, people with Fibromyalgia can suffer with fatigue, stomach problems, headaches, muscle stiffness, pain sensitives, dizziness, cognitive issues such as brain fog and these are just a few of the symptoms.
Fibro is notoriously difficult to diagnose, but more than that it is a condition which is hard to get significant recognition for.
When and how I got diagnosed
Fibromyalgia was a diagnosis I received around the age of 27. Like a lot of people with this condition I was ill for a very long time before I was considered to have something more going on than just being stressed out. My initial symptoms were dismissed on a regular basis by health professionals who believed I was simply burning out from work, but I was becoming more and more unwell. So unwell in fact I became like someone in my 80s and not my 20s. It affected my ability to work, to socialise, in fact my ability to do anything.
After much back and forth with the doctor and referrals to the wrong clinics, I was eventually diagnosed with Fibro by a Rheumatologist and discharged from their care the very same day.
What I find different with Fibromyalgia
Fibromyalgia is the condition I have fought against the most out of all my conditions, purely because of the lack of support available. Whilst the majority of my conditions are invisible on me, I have found Fibro itself invisible in the medical world too. There seems to be no form of treatment other than self-management, no productive advice and no guidance on where to go after diagnosis. This of course may very well be different for others – a lot of the time these things are based on location, getting understanding doctors and local facilities available – this is just my personal experience.
What I wish people knew about Fibromyalgia
That Fibro is a condition that fluctuates. Therefore it is possible to have ‘better’ days where you can do more on some days than others. However this doesn’t mean you are suddenly cured or like some people believe ‘are not as ill as you make out,’ – the reality is a good day for me isn’t the same as a good day for you, it is just a better day for me which isn’t the same thing.
The most difficult thing about living with Fibromyalgia
No doubt it is the endless symptoms attached to it. Having such an exhaustive list of symptoms is not only exhausting in itself to self-manage, but it is the never-ending factors that can set symptoms off. From the weather (both hot and cold), stress, anxiety, a bad night’s sleep, getting too much sleep, walking too much, not walking enough – the cycle can be constant.
What has Fibro taught me?
That I am way stronger than I ever give myself credit for. Fibro literally turned my life upside down and I lost everything from my job to my independence, yet I am still going. Yes I am still in the same position, but I am trying and that is all any of us can do.
For more advice on any Fibro symptoms (or symptoms related to any of my other conditions) check out my symptom section here where I give tips on things I have found helpful. Remember to always check with a doctor before trying any new suggestions.