Let’s talk about Fibromyalgia

by Sharon Carter-Wray
Fibromyalgia

Most people have never heard of this condition, not many of us know someone who has it, and fewer still actually understand it.

I call it a condition because it is not a ‘disease’, there is no known ‘cause’ for it, and no actual ‘cure’ for it. It is however, something that still baffles the medical profession and sufferers alike, who have to live with it.

So, to break it down: ‘Fibro’ – relates to the fibrous tissue and muscles in your body, and ‘Myalgia’ – refers to pain, so quite simply it is pain in the muscles and tissues in body. However, this is far from the only thing about this illness, it has far reaching consequences that affect daily life, and is different from one person to the next.

But in order to be diagnosed with this illness, there is an eighteen-point check that is carried out around your body; and you need satisfy (I believe) 11 out of 18 for it to be Fibromyalgia. These points can be painful, pressure sensitive, uncomfortable and or cause you to flinch when touched. Fibromyalgia is only diagnosed after all other possibilities such as Rheumatism or Arthritis are discounted. However, what we all have in common is that we have pain in our neck and shoulders, which is where this illness usually starts to manifest itself. From there is can remain localised, or it can continue to spread to other parts of the body.

Now one thing that we need to be clear about, is that the pain that I refer to is not like ordinary pain that eases off, this is continuous, deep-seated pain that is almost unbearable. If you’ve ever broken a bone, or really hurt yourself, that first onset of pain in intense, as our minds adjust to the injury; eventually you heal, and there is no more pain. Imagine if that intense pain never left, it stays never getting better, that is difference between acute and chronic pain, acute is the initial onset, chronic is ongoing.

Now people can cope with pain for short periods of time, as each day it gets a little better, and we can soon return to normal. But, for people that live with chronic pain, bit by bit, they are stripped of things that any person takes for granted. By this I mean, loss of movement, less activity and social interaction, naturally this leads to being depressed as well. Who wouldn’t be?

Regardless of what anyone says, ‘there is no cure’. All you can hope for is a good doctor, and medication that helps, which quite often isn’t the case. My story? I woke up one day in July, 8 years ago, with a severe pain on the right side of my neck, going into my shoulder. It was pain I had never felt before, and felt like someone was seriously pinching me. Over time it spread into my arms, back, hips, in fact I have it from head to toe, and it has caused problems in my 2 parts of my spine. I have got used to living with severe pain on a daily basis, there is not a moment when I am free from it. For me it has become a normal way of life, it is something I have to accept, and my life has been greatly reduced by it.

It took three and half years for my diagnosis, back then doctors believed that it was psychological, in the sufferers’ head, so we were not taken seriously. For all that time I wasin agony, without medication, until I finally got diagnosed. But even then my problems were far from over, because it took forever to find medication that either I didn’t react to and or gave me any real relief. I thought back to my youth, and remembered problems with my hand and knees, and then with my neck and shoulder. I suppose I had gotten so used to it, that it was only when it suddenly got worse, that I became aware of it again.

Even though I am on the strongest painkillers that I can get, and have to either grin and bear it or resort to using morphine, just to get by when things get too much. It is not a good life. The pain doesn’t stay at the same, sudden flare-ups are debilitating, and stop me where I stand. Pain rules my every day, pain it rules my life, and I have had to accept and adapt to it. My illness has rapidly got worse over the last 15 months, I am one of the unlucky ones. In spite of the pain by doing yoga, stretching and keeping mobile, it has meant that I am still able to stand on my own two feet and walk. 2 years ago I was heavily reliant on two walking sticks, I still need them; but I want to stave off using them for as long as I can, their time will come again. 3 yrs ago, pain meant I couldn’t turn my head or lift my arms up, but now I am a lot more flexible, because I have pushed myself hard. I know of so many people through groups and forums, that are chair or bed bound, and have much less quality of life than I do.

So, I will continue doing what I do, until I can’t… but I will not let this condition define me! I can no longer stand, sit or walk for long periods, every time I think about leaving my home, I have to risk assess where I am going, how far I’m going and how many people may be involved. I can’t cope in busy places where I am likely to be bumped or pushed into, and I move very slowly. What most people don’t realise, is that every time I leave my home, I put on a brave face, and make a huge effort to be as normal as possible. But in truth my life has become very restricted, and that is not likely to change.

There is not a part on my body that doesn’t hurt, and I am so touch-sensitive in places that I fear being touched, hugged, knocked or squeezed. It didn’t help that I was involved in a car accident 18 months ago, when another driver drove into me from the side. The impact sent shockwaves through me that lasted for months, as the pain moved from one area to another. Though I actually walked away ‘unhurt’, the damage was unseen and has left me with a more heightened sense of pain throughout and on-going bouts of sciatica. His insurance company arranged for me to have a full medical, where I was reassessed for fibromyalgia, and tested on my sensitivity, reflex, flinch reaction, muscle strength, pain tolerance, state of mind and so much more. This time I scored a ‘full house’, compared to 12 out of 18 points 5 years ago, and was scored as being 16 times more sensitive to pain, than the average person. He also advised me that I was experiencing the onset of my deterioration, and I would need much help in future. Admittedly, it was not a good prognosis, but at least it confirmed to me what I already knew.

The other driver has probably already forgotten it, and has absolutely no idea of the lasting damage that he has done to me; but every day, I am reminded of exactly what he did. Understandably I am still very angry, and no amount of compensation can ever repay me for what he has taken away or done to my life. He has stopped me in my tracks, and prevented me from living the life I should be living.

But no amount of anger can change the fact I have this illness. As I said earlier, there is so much more to fibromyalgia, than just pain, these are just some of the associated issues that I also have to live with daily, and this list is not exhausted. Sensitivity to: light, noise, smell, touch, food and drink. Lack of sleep, I do not fall into deep REM sleep, I am constantly woken and this leads to fatigue, tiredness, lack of concentration, energy and being easily worn out.

Sweating, it feels like my thermostat is broken, I could be shivering and sweating profusely at the same time, I feel cold when it’s hot and vice versa. Irritable Bowel Syndrome, nausea and vomiting, I can’t tolerate heavy meat, processed foods or additives, and I use a straw to drink, to prevent choking. Brain fog, feeling confused and being very forgetful Muscle weakness, which causes problems with balance, falls, bumping into or dropping things. Headaches; migraines and can last for days.

Surprisingly, they call this a silent and invisible illness, because most people simply don’t see it or understand it. Sx

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