Getting to grips with fibromyalgia

9 May
Mum and guide high up in the Atlas Mountains

Mum and guide high up in the Atlas Mountains

The term multi-tasking was invented for my Mum. Granted it’s a slow start in the morning, but after a couple of mugs of Yorkshire Tea she’s like a whirling dervish. An average morning might involve mowing the lawn, throwing a casserole in the oven, doing a pile of ironing and checking her emails . Nothing that remarkable you might think for someone who has raised four kids and run a successful business – except she is in constant pain with a condition known as fibromyalgia.

Fibromyalgia is the term for a group of symptoms including intense chronic muscle pain, fatigue, headaches, sleeping problems, joint pain, numbness and tingling, restlessness in the legs (particularly at night), irritable bowel syndrome, problems with memory and concentration, sensitivity to cold, bladder complications, depression and a swelling sensation of the hands. With fibromyalgia the soft muscles and tissues around the joints hurt, as opposed to arthritis, which is caused by the immune system attacking the joints. The pain is inconsistent – you may hurt in one place one day and not the next. The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. Most people with fibromyalgia have sleep problems – either struggling to get to sleep, or not getting the deep restorative sleep needed.

The cause of fibromyalgia isn’t known, but it’s almost certainly something to do with disturbed pain messages from the brain. There isn’t a cure, or a one size fits all treatment for fibromyalgia, but there are a range of medications available which can alleviate the main symptoms of muscle pain, anxiety and sleeplessness. Like many long-term conditions, non medical approaches can provide relief such as warm baths, or applying cold packs to ease areas of pain, gentle exercise and complementary therapies.

I’m rather ashamed to admit that I’ve never really looked into fibromyalgia until now; not least because Mum always seemed to have it under control and never complained about the problem. This week I managed to sit her down for an hour in her busy schedule and found out about how it has affected her life…

Ten years ago, when the symptoms of fibromyalgia first reared their ugly head, the prospect of living an active and fulfilling life in her mid 60’s was hanging in the balance. Even sitting in the same position for too long was unbearable and activities such as knitting and playing the guitar were too painful. Despite being very understanding our family GP was flummoxed. Pain killers had little effect and a brief period on a drug (now prescribed for epilepsy) rendered her unable to string a sentence together.

It wasn’t ‘til she moved to France, a year later, that the term fibromyalgia was mooted and thanks to a referral to a rheumatologist who undertook a battery of tests – MRI scans, blood tests, allergies – the condition was diagnosed. By this stage she wasn’t driving as the pain in her shins was just too painful to control the pedals and she was often in tears due to the pain in her lower back and shoulders. The fear of ending up in a wheelchair was also making her even more anxious and depressed.

An aggressive cocktail of eight drugs was prescribed to tackle her symptoms and after three months the dosage was reduced. Since then she has continued to take three medications to relax the painful muscles, reduce anxiety and aid a restful sleep.  She also knows to listen to her body and moderate her activity accordingly. She’s learnt the hard way that overdoing things will result in excruciating pain the next day, and forgetting to take medication is just not an option. She swears by swimming, gentle walking and not doing a repetitive activity for more than 20 minutes – hence the multi tasking.

Crucially, a positive attitude has helped her get through some really tough days and she claims that she’s never let fibromyalgia stop her doing anything (although I’ve seen her crash and burn a few times). To her credit, since being diagnosed she’s scaled the Atlas mountains in Morocco, sewn an intricate lace wedding dress and sang lead vocals and played guitar in a rock band. My Mum’s just far too busy to let fibromyalgia get in the way of life! Which brings to mind the hilarious French and Saunders sketch of the two ladies bemoaning the fact that a concerned relative called an ambulance when they were unconscious. On a more serious note, I wasn’t at all surprised to hear that people with A1 (high achieving) personalities are more prone to fibromyalgia than the rest of us mere mortals.

The bigger picture is that fibromyalgia affects nearly 1 in 20 people worldwide. In England and Wales, there could be up to 1.76 million adults with the condition.

Anecdotally at least, it seems that awareness of fibromyalgia in primary care was pretty poor a decade ago, but my Mum concedes that as a temporary resident in the UK in recent years, doctors have been more ‘au fait’ with the condition and the medication she is taking.

My fear is that recognition of fibromyalgia by the medical profession is still patchy. I recently spoke to a man whose wife was convinced she had fibromyalgia, but her GP refused to believe otherwise and continued to treat her for depression. She may well have been suffering from depression of course, but which came first, the chicken or the egg?

Fibromyalgia Association UK are doing some fantastic work providing information and support networks for people with fibromyalgia and anyone who feels their GP needs educating can request that a medical information booklet is despatched to them.

For my part, I hope that my Mum’s story provides solace to anyone who’s just been diagnosed with fibromyalgia, or indeed any long-term condition. So please do share this post with anyone who might be interested and let me know if you’ve had a similar experience. I’d love to hear from you.

Related links:

NHS Choices – Fibromyalgia

Dr Kevin White, MD, PhD, author of Breaking Thru the Fibro Fog


6 Responses to “Getting to grips with fibromyalgia”

  1. Jane May 25, 2013 at 9:18 am #

    I’ve just read your article ‘getting to grips with fibromyalgia’ and sat back to take stock!!! Could have been me you were talking about. I was diagnosed with fibro some 10 yrs ago and each and every hour of every day since has been some sort of struggle. But like your Mum I have come to listen to my body and act accordingly. Having said that this is a horrid condition which doctors seem un-willing to treat as they really don’t know much about it or are unwilling to find out about it! Lucky for me that the doctor I had back then had the knowledge and acted on it. I take my tablets each and every day and I have a very understanding family but it’s still a very frustrating condition as people can not see it and can’t see the effects of it. (to most people I’m just an old dotty woman who sometimes forgets words etc -fibro fog) So thank you for ‘printing’ what it’s truely like to have Fibromyalgia and to those who haven’t got it – think yourself blessed that you haven’t.

    • Kate Mensah May 25, 2013 at 3:41 pm #

      Dear Jane thanks so much for your feedback. I’m glad that my post on fibromyalgia has struck a chord with you. My feeling is that the medical profession’s awareness and understanding of FM is improving (but still patchy, as you say) but there seems to be the need for a public awareness campaign so that people living with FM aren’t made to feel like they are some kind of fraud complaining about an illness which people can’t see.

  2. michelle May 17, 2013 at 11:44 am #

    I was given a leaflet by my gp about 5 years ago. Twice in the last few weeks it has been brought up on my records but i have never actually had a diagnosis or any support. In the last few months i have had various problems and i cant seem to get rid of anything. When i get sick i get sick very rapidly, like your mom if i do anything too long i suffer from pain and exhaustion. Fed up of going to the doctors because i end up spending a fortune on drugs and still have no diagnosis. I have to have meetings with my boss due to poor attendance because every couple of months i have to have a day of because i have been to work sick and that leaves me worse. Yesterday i started to feel quite poorly at work. I carried on working and when i left at 5 i felt so ill i thought i was going to collapse on the bus. By the time i got home i had a fever and ended up in bed. Got up this morning felt much better and after an hour i had to go back to bed. I am in trouble with hr for being sick. Can you advise. Your moms story sounds much like me but people just think I am a hypochondriac. Symptoms include irritable bowel, flu like symptoms, joint pain, muscular pain, severe tiredness, numbness of hands, constant skin irritation, eczema, anxiety and depression, mood swings, very poor memory, amongst many others.

    • Kate Mensah May 17, 2013 at 12:25 pm #

      Dear Michelle

      I am very sorry to hear about your ill health and difficulties at work. You certainly should not feel bad about taking time off work when you are legitimately unwell. I am not qualified to provide medical or HR advice, but what I do know from my limited research on FM is that awareness of the condition is gaining momentum. I would suggest getting in touch with a national support organisation that can provide you with expert information and advocacy about getting a proper diagnosis and dealing with your employers. You could try National Fibromyalgia and Chronic Pain Association in the States which appears to be akin to the UK’s Fibromyalgia Association UK. I do hope you can get to the bottom of your problems as they sound really debilitating. Hopefully with the right support and guidance you can begin to improve your health and wellbeing, as well as gain the understanding you need from your employers. Good luck.

  3. Kate Mensah May 17, 2013 at 8:36 am #

    Thanks Tim. An interesting proverb – an idea for a future blog post perhaps!

  4. Tim May 12, 2013 at 7:33 am #

    I always read your blogs and think ‘I must leave a reply’, but I can never think of anything intelligent to write and even when I do think of something my brain scrambles, I reach for the dictionary, forget how to write in a coherent fashion and delete everything for fear of showing myself for the illiterate buffoon that I am. However, your blogs are wonderful and I always look forward to reading the latest one with a mug of yorkshire tea. A clever soul once told me: “In order to succeed you must first surrender yourself to the problem” – I think I am finally starting to understand the meaning behind his words.

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