Fibromyalgia & Me

Fibromyalgia

I have fibromyalgia. There I said it.
It doesn’t define me yet every single thing I do depends on how it makes me feel.
For those that don’t know fibromyalgia is a chronic pain condition characterised by widespread pain in the body. It comes with a host of other issues.  At this time of writing no definitive test to diagnose fibromyalgia.

 

Diagnoisis

There are eighteen trigger points on the body which are widely used in the diagnosis process.  Because the symptoms are widely varied it can be hard to diagnose without a pain clinic/ rheumatology referral. Unfortunately many people wait years before actually having the relief of a diagnosis.

I was lucky  and had a tuned in GP who realised that my complaints were something more than just stress! It’s a well known fault in our NHS that the treatment we receive is not the same.  We can be better or worse off depending on postcode, country or even down to the GP we attend.

The list of fibromyalgia symptoms is varied. It includes but is not limited to the following:

– unexplained widespread pain in both halves of your body (top or bottom and left or right) for six months or more. May also be accompanied by sensitivity to pressure or touch.

– sleep disturbances (including restless leg syndrome)

– anxiety and/or depression

– bowel and bladder problems

– memory issues (as in fibro fog)

– exhaustion and fatigue

– sensitivity to noise, sounds, smells, touch

– numbness and tingling (think along the lines of pins and needles)

And so the list goes on. It’s fair to say that stress is a major factor. The onset of a stressful event was what triggered my symptoms. These were simply unbearable, unexplained pain, fatigue and sleep disturbance. Looking back it was on a much minor scale to now but enough to concern me and so I eventually sought medical advice. Fast forward five + years and many, many medical appointments and I’ve been diagnosed with fibromyalgia. There are also other conditions which go hand in hand with fibromyalgia such as anxiety, depression and IBS.

Everyday Life

It affects my life in every respect. On a normal day my pain level sits around an abnormal 7-8/10. I experience terrible back, leg and arm pain where my skin crawls. Or I’m cold to the bone or where the aching literally cripples me. I’m 36 and I use a rollator daily. I have a bed rail and a shower stool as well as a second stair rail. I can’t plan too many activities in advance and every second day after doing something strenuous I have to spend recovering as my pain goes off the scale.

To those on the outside I have a happy, healthy life and plan lots of things to do and places to go. And I do. But it’s all carefully planned out to the last detail so I can work in to the best of my ability. And it works …. well to an extent.

I find that I can have a flare up at any time and the extent to which it flares is completely unpredictable. Sometimes I can manage the flare well and carry on. Other times I am floored and spend days or weeks in a daze of pain, sleep deprivation and depression. As fibromyalgia is an invisible illness it can be very hard for people to understand the severity of how it affects you. On the outside you may look healthy and normal but inside your body is rejecting you over and over again. Sensitivity to noise, smells and even the feel of your clothing can drive you to the edge.

And then there is the side effects. Since my diagnosis I gained 8 stone. I’m unable to exercise properly due to pain and fatigue. And although I’ve recently lost 3.5 stone it’s a vicious circle so more weight = worse symptoms = comfort eating/ no exercise = more weight and so on ..

Medication

I take a cocktail of medications every day and these combined with pain medications leave me feeling wiped out, numb and generally no longer myself.  Without them I would be much worse. I have chopped and changed medications over the years and my current cocktail seems to work quite nicely although a flare up can affect this and I have to proceed with caution. One thing I would definitely recommend is to get a caring, supportive and clued up GP. My current practice has two GPs who have studied fibromyalgia extensively and are very aware. This lessons the anxiety I experience when I need to attend the surgery.

During the early days of my diagnosis I was lucky enough to see a pain therapist. She helped me to come to terms with my diagnosis. And for me that has been the biggest hurdle. Once I accepted that my old life was gone and this would be my new life, it became easier to handle things and get a grip on the situation. It’s not perfect, in fact some days far from it, but it’s my life and I’m damn sure that I’m going to make the best of it! I haven’t been beaten yet and today is not gonna be that day.

Surviving

I have lots of advice that I could pass on but everyone’s journey is different. I do believe that group support is invaluable and in these days of internet, Facebook groups etc that there is a wealth of knowledge out there. Please keep looking for it and remember what is helpful to you may also be helpful to others so sharing is so important. I believe that sharing your journey also helps with the coming to terms with fibromyalgia and helps you to accept that this will be a life long change.

I could write forever on this topic but to be honest this is only a scratch on the surface. However I will answer any questions that you have so please leave me a comment and I will come back to you. I have found that group support especially of the online kind have been invaluable to me both in dealing with the day to day of fibromyalgia and in the longer term demands as well.

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