Fibromyalgia is a condition that has probably slipped under your radar until recently, but it is actually more widespread than you would think, with one person in 25 thought to suffer from it.
The chronic condition affects the bone and muscles, causing widespread pain, but it only became a viral talking-point recently when Desert Island Discs host, Kirsty Young, announced that she would be taking a break from her presenting duties for ‘a number of months’ due to suffering from the syndrome.
But what is Fibromyalgia? What are the warning signs? And can you tell if you’re suffering from it?
International bestselling author Claire Allan is a longterm Fibromyalgia sufferer – something she sat down with us to explain.
‘I was given a preliminary diagnosis of Fibromyalgia three months before I turned forty, in 2016,’ she recalled of her condition. ‘I had been in a really good place in my life.’
Here is her story…
What were your first symptoms of Fibromyalgia?
Just over a year from a Sepsis scare, I started to experience pain and stiffness in my hands. It felt almost flu-like but no flu ever arrived. Some days the pain was so bad that I could not hold a pen to write, nor could I type. I was working as a journalist, as well as a novelist, at the time and it made my work impossible. There was no way I could manage to take notes in court, or during interviews. I initially thought it was some kind of virus and when I first went to see my GP – after symptoms persisted and started to spread – I expected that she would tell me that but that it would reassure me that I would be back to full health soon. Warning bells were starting to ring with me though. I was increasingly absolutely exhausted to the point where I simply could not keep my eyes open.
The aches, pains and stiffness spread to my legs and hips. It felt as if I had done the most intense leg day at the gym all the time. Along with the stiffness, my legs were shaky and there were times when I left my daughter (who was seven at the time) to school and found myself staggering on the short walk back to the car. I was increasingly concerned people would think I was drunk.
What symptoms have you experienced?
Over the course of the last two and half years I’ve experienced so many symptoms – and they change and move about all the time. By far the most persistent is the constant low level pain, predominantly in my legs and arms. This can flare to a point where even the touch of clothes can prove painful. My muscles are constantly tense and feel strained.
But along with the pain, there are other symptoms. Brain fog can make life as a writer difficult. As well as just not being able to think of the words and phrases I should know, there are times when words simply get stuck in my head. I can visualise the words, hear them in my head even but I simply cannot say them. Fatigue can be debilitating – and with that at times comes depression that I’m not able to do what I want to or what I used to. Fibromyalgia can also cause gastric issues, so nausea can be a big issue for me as well.
What do you think caused your Fibromyalgia?
Looking back there were times when I had experienced some of these symptoms before the big flare up in 2016. There is evidence that stress can ‘activate’ a person’s predisposition to Fibromyalgia. The start of 2016 had been particularly difficult for me. We suffered a bereavement, the loss of my beloved grandmother following as 12 year battle with Alzheimer’s and I found the mixed emotions surrounding her death very hard to come to terms with. I was also going through a stressful time professionally, both in journalism and in my writing career and I was making some big decisions. I also believe that my Sepsis experience the year before may have played a role. Many people develop Fibromyalgia following surgery or serious illness.
How do you manage your Fibromyalgia?
It’s a constant balancing act, to be honest. Primarily, I treat the condition through taking some pretty heavy dose painkillers (slow release Tramadol) along with Amitriptyiline, an old style anti-depressant known to help with nerve pain in the morning and evening. For break-through pain I can top up a little with fast release Tramadol, although I don’t like how I feel when I take that. It means I’m unfit to drive, and not fully ‘with it’ so it very much limits what I can do. At times I have to work through the pain due to parental/ work responsibilities. I also use CBD Oil, either through drops or vaping (I was never a smoker, so I’ve had to learn to ‘smoke’ to use an e-cig) which can provide quick and effective relief. Medication isn’t the biggest factor though. I have to manage my life, make sure to do some exercise, but not too much. Try to keep my stress levels relatively low. Rest when I need to. That means at times resting before a big event or busy day, and factoring in rest time for afterwards as well.
How has Fibromyalgia affected your day to day life?
It has completely transformed my life. I left my journalism career, and now work from home so I can work around my condition. I can rest when I need to and pace myself a little better. The hardest thing about the condition is not being able to do everything I want to do – and I’m not just talking about the fun things. I can’t, for example, do a lot of housework without bringing on a pain flare. I can’t run about with my children the way I used to, my legs simply don’t work like that any more. I frequently have to cancel plans at the last minute because a flare up can hit without warning and trying to battle through it can just make things worse in the long run. Tasks are split up into manageable bite size pieces. On tough days, even showering can require a mammoth amount of effort. My social life has been hit particularly hard. Every event or night out has to be planned for, prepared for through resting before and factoring in resting afterwards. It leaves very little room for spontaneity. Thankfully I have wonderfully supportive friends and family. My guilt as a mother is harder to deal with. When things are very bad, all I can do it rest and it kills me I can’t do everything I feel a mother should do.
What is the most common misconception of Fibromyalgia?
That it’s not real, and sufferers are just hypochondriacs. I really, really wish it wasn’t real and that I was just making this all up! I’ve been lucky to have a GP who is massively supportive but I know of many people who have had their symptoms dismissed. People with Fibro aren’t malingerers – far from it, but we can be made to feel that way.
Conversely, Fibro does not mean the end of your world. Your life will change, but you can still live a life and work towards your goals. It’s just different. I still work, albeit from home, most days. I’m still managing to have a career as a writer. I won’t let it win.
How much support is there out there for people with Fibromyalgia?
Not as much as there should be. I’ve found it very hard to find a face to face support network. The online community is great – but I always urge caution because it can also be very daunting for someone recently diagnosed. Everyone’s experience of Fibro is varied so you really can’t know what you will experience based on what someone else has been through. Trying to retain some positivity is very important, as if having faith that you can come through this.