Living with Fibromyalgia: A Guest Post by Hayley

tender point test chart

Fibromyalgia is a condition characterised by chronic pain.  Having my own pain issues and the potentiality that they could be explained by Fibromyalgia I thought it would be handy to ask someone who knows what it is like to share their experiences of the condition.  Here my friend Hayley describes what it is like to live with this condition…

I am writing this at 2pm, just 2 hrs after getting out of bed for the 2nd time. Some days I feel so physically exhausted, that after getting up with my daughter and seeing her off to school I have to return to bed. I try very hard to limit my time back in bed to just 2 hours and get up around 10.30am but Fibro makes me feel like I have been drugged and it is so very hard to not keep hitting snooze and most of the time sleeping until around 12noon.

I don’t tell many people about my sleeping in the daytime because I am afraid to be labelled ‘lazy’ when actually I would give anything to be able to function normally every single day after having a full 8 hrs sleep. Fibromyalgia is my real label, not ‘Lazy’. I have had this label for about 11 yrs but believe I have suffered with the illness for about 15 yrs. Anyone who has had the magic diagnosis will tell you how hard they fought to find out what was wrong with them, why they ached from head to toe most days, why they feel tired even after 12 hrs sleep and why no one wants to believe there is anything really wrong with them.

On a good day I will get up at 7am with my daughter and do most things on auto pilot for the first couple of hours of waking. Fibro for me makes me feel very drowsy for most of my day, almost like I am drugged, although I am not on any specific medication for my illness. I can only describe the feeling as being ‘spaced out’ and not actually feeling connected to your body. The best way I have found to cope is to take painkillers for the aches and then an energy drink to give me at least 2 or 3  hours where I feel as close as I can imagine to being ‘normal’ and function as most other people seem to do without effort.

The aches change from day to day, sometimes it can be neck and shoulder aches which in turn give me the most awful headaches, those will be definite non function days as painkillers do not take away the pain and I just can’t lift the foggy drowsy feeling. I get strange sensations in my joints some days, almost like I have cold water swilling around in my elbow and shoulder joints, this in turn causes me to get pins and needles down both arms if I keep them in a bent position for too long. I can’t sit still for too long either as my arms then get the dead feeling you get when pins and needles is imminent, but what follows is a dull, deep ache that makes you feel like you want to get inside your arms and give your muscles a good old scratch! I haven’t even begun to tell you about the many other muscle aches, pains and twinges I have that can range from mildly uncomfortable to restricting my movement, because to move would cause a tremendous amount of pain, however I have limited myself to the number of words I write as to sit here too long and type is uncomfortable in itself.

Do I sound mad to you? Yes, don’t worry I sound mad to myself most days! Doctor after doctor sent me for x-rays, scans and blood tests only to tell me they were clear and there was nothing wrong with me, so the feelings of madness have been with me for a while. The only definitive test for Fibromyalgia is the ‘Tender point test’ which is usually only carried out after years of tests and tears because no one will believe you are ill. My tender point test was carried out by a Rheumatologist, who started prodding me around soft tissue and joint areas. There are 18 tender points they will press and if 11 of them are tender then you will be diagnosed with Fibromyalgia. He was very matter of fact in telling me there is no cure and no medication for this illness, it is chronic. In the 11 years since, I have been sent to the hospital for ‘Pain clinic’ which to me didn’t offer too much help. I was given 4 or 5 Hydrotherapy sessions, which were lovely and relaxing but didn’t offer much in the way of pain relief and only served to make me even more tired for 2 or 3 days afterwards. I have been offered a few medication options for nerve pain, which I have tried and not personally found to be effective although I know some people with Fibro swear by them.

I was basically left to fend for myself about 5 years ago and rely on pain killers and anti inflammatory medication which the doctor happily doles out to me without offering me any reviews on my condition to see if it is progressing, if the pain killers are effective (they are for about 50% of the time but I take so many my body is probably used to them) or if there has been any advance in Fibromyalgia management. If you go onto any Fibro forum and read some of the posts from real people living with this illness every day you will see that despite what the medical profession says it IS a progressive illness and carries much the same symptoms and in some cases in the same severity as MS, which everyone has heard of and the doctors class as a REAL illness and will treat accordingly.

I am only 38 years old and I feel like I live the life of someone 30 years older. My worry is, if I feel like this now what am I going to be like when I hit 50 or 60? Will I need a stick to lean on to walk, will I not have the luxury of being able to walk pain free and need to rely on someone to push me around in a wheelchair? No one knows and in reality no one really cares, apart from the millions of Fibro sufferers who long to have their condition recognised and researched so treatment can become available and you don’t get the standard “Fibrowhat??” and the blank look when you tell people why you are ill.

If I sound bitter to you it’s because I am and I make no apology for it. I am not lazy and I wish with all my heart that I could live a different pain free, non limiting life, just like you maybe? If on reading this, some of what I have said has struck a chord and you have had some of the symptoms I describe, save yourself years of frustration and ask to see a rheumatologist and ask for the tender point test, in fact DEMAND it because if you are diagnosed with Fibro you will have plenty more years of tears and frustration ahead of you, so if I can save you some beforehand then my job is done!

Fibromyalgia is REAL, it’s painful, it’s debilitating and it ruins the lives of many, not just sufferers but the families of the sufferers who have to watch their loved ones pain and frustrations day in and day out. I hope I have opened some minds to this illness and maybe if we get together and spread the word one day it will be classed as a real chronic illness and the patients will be given real help and not just be fobbed off.

Thank you for reading.

Many thanks to Hayley for sharing, I know she found it very emotional to write this piece! I hope you have enjoyed reading it 🙂


5 comments on “Living with Fibromyalgia: A Guest Post by Hayley

  1. I see you stopped by my blog Mind Body and Soul Rehab, thought I’d stop by here to return the favor. Interesting blog..Do you suffer from FMS as well?

    • Hi Thanks for popping by, Hayley who wrote this guest post has FMS, I suspect I have it too but my GP thinks I already have enough ‘labels’ so won’t confirm! :/

  2. Pingback: National Eating Disorder Awareness Week – The problem with eating… | Day in the life of a Busy Gal…

  3. Thank you for this very important and informative post – I, too, suffer from fibromyalgia (and many other severe, chronic illnesses), and I appreciated the honesty and bluntness of this. Fibromyalgia IS real; is IS debilitating, and it IS life-changing. ~ Julie

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