Fibromyalgia ME/CFS & Me

My Life With Fibromyalgia & ME

I haven’t really spoke about my health issues other than to state it in my Bio that I have these conditions, so I wanted to talk a bit about how it effects my life on a daily basis.

I was diagnosed with Fibromyalgia probably about 12 years ago now but suffered with certain health issues many years before this, which was put down to other things. The turning point for me was firstly being diagnosed with under active thyroid, however after months on thyroxine, my health hadn’t improved. I was still exhausted after only a little activity and my body was in pain constantly and I couldn’t sleep. I was having serious balance problems and I couldn’t concentrate or remember things.

I was firstly sent to a Rheumatologist who sent me to a neurologist and I was tested for M.S firstly having MRI and EEG ECG you name it, I had it, with each test, which would have been no problem for most, took me days to get over. I was referred back to the rheumatologist and told i had ME not MS and Fibro and placed on more medication with a small leaflet in hand. I was in such a turmoil of emotions, I was relieved yet confused, he had explained a little about it but I hadn’t taken it all in if I’m honest, remembering things wasn’t my best quality anyway lol.

That night I went on the laptop to see If I could find out more information about both the conditions and what help and support there was available to me. There was a good amount of information but also very conflicting sources, there seemed to be a lot more information for the USA but very little at the time for the UK. Also at the time not really much support in the UK, support groups ect were few and far between with very little in the way of medical support, the nearest being an hours journey by car, so I had no way of getting there. An hour in the car may not seem a lot to some but I knew by the time I got there, I would be so tired and not able to do much, then there was the travel home.

My GP were not understanding of the conditions either, it was relatively new and some didn’t even believe either condition existed. I needed the support and to know what illnesses and health issues I had were part of the Fibro and which weren’t. So I had under active thyroid, IBS, high cholesterol, fibromyalgia, ME, anxiety & depression (although a psychologist said I was not in pain because I was depressed, I was depressed because I was in pain) However it seems that most of these conditions go hand in hand with Fibro sufferers. I started to have allergies to things I never had before, rashes covering my body with no explanation as to what had caused it, yet again I was put on more medication.

So here i am Years down the line, still non the wiser, still discovering new information, still neglected by my GP who told me a couple of years back ” you’ve got Fibromyalgia, there’s no treatment, you’ve just got to get on with it” after that, I would hardly go to the doctors, I would just struggle alone at home. He would never see me when I was really bad, as when I was really bad, I couldn’t get out of bed, I would sleep for days at a time, I slept for a whole three weeks at one point. My teenage children cared for me, waking me to have a little something to eat and drink, take my medication and to the bathroom. They would have to bath me with baby wipes and put me in the bath, washing my hair and body then putting me back to bed, Non of which I would remember fully, just kind of dream like memories. I couldn’t walk & can’t walk when I have had a flare like this, my muscles in my whole body are so week, I have to slowly build the strength back up in my body so be able to just do the smallest of tasks.

NON of which my GP saw, because I had Fibro, I just had to get on with it.

Over the past few years, I have had different complications which I rarely go to the Gp’s about, only now after changing to a different surgery been told that I have liver damage, my liver has become seriously compromised. I only went because I had one of my rashes that had covered my body and my legs had swollen up again, I thought I was going to get cellulitis again. Let me just explain a little about these rashes, my whole body feels like it’s on fire, I can’t bear even clothing touching my skin and having such a thing as a shower is the most excruciating pain you could imagine, it is like being hit by a thousand needles a second. If you’ve had bad sun burn and got in the shower and imagine that stinging you get when the hot water touches it, multiply that by 100% or more.

Back to the liver damage, I was told by my old GP that my liver and kidneys were not working 100% infact they were only working at half the capacity that they should be, however nothing was done about it nor was there ever any follow ups done. As usual I just thought it was all just down to my Fibro, so just got on with it all on my own. I ask myself, how could a doctor not know this, how could he not see what the children saw when my face was yellow, how could a doctor not want to make sure his patient was ok. They  were all to bloody busy looking at a computer screen than looking at a persons face, or even to take notice when a person was fighting back tears because they were just too tired to live with all the pain anymore.

I have changed GP now and I’m really hoping that I receive the proper care from this one, I’m just waiting for the results of the new blood tests and for an appointment from the hospital to find out what my treatment will be, I’m hoping it’s not just more medication, I think 18 a day is enough for anyone lol

If you know someone with Fibromyalgia ME/CFS please don’t think that there condition is about just pain or feeling a little more tired than you, every single day it is different for them, one day the pain maybe in the legs the next in the arms shoulders and head, the pain is not just a Nagging throb, it’s like the actual bone marrow in your bone is having electric shocks, it’s a pain that never goes away, not even with your meds, they just manage to take the edge off it, sometimes not even that. The tiredness is not just like you’ve had a bad nights sleep, it’s as if you haven’t slept at all for a week, the brain and body are exhausted, sometimes you don’t have the strength to ,move your body. The brain and body just want to shut down, you literally can not stay awake, when your wake you do things without remembering any of it, who you saw, what you did or didn’t do.

It is all something that we live with every single day, it will never go away, it is that some days are a little better than others.

Then there’s the emotional stuff that comes with it all, you lose your family and friends because they can’t or won’t understand. When you can’t be there for them every second of every day, they think you don’t want them or can’t be bothered. When you can’t go somewhere or have to cancel, they think you just can’t be bothered. When you forget to ring them or send a card, it’s just that you’ve either lost what day it is or could even just been in a flare of sleeping. Then there’s the guilt, feeling like your a failure as a mother or friend, shutting yourself off because you will only have to let them down again. Things like going up town to do a bit of, shopping can take you three days to get over, not to mention the mental and emotional strength it takes to just be there around lots of people, standing around, walking having hot and cold flushes and being rushed when you just haven’t the strength to rush anywhere.

My life Mostly consists of being in bed all day and night, some days I can sleep constantly, some I can stay awake for hours at a time. I communicate through my iPad which is my life line to the outside world. I enter competitions as it keeps my mind ticking over a little but even that tires me out. I may manage to do food shopping once a week but not every week, sometimes it’s once a month and that might be the only time I go out of the house. I see one of my granddaughters maybe once a month which I love more than anything but it tires me out so much in that few hours, then I feel guilty that I feel I didn’t do enough with her.

I use to be a very active mum of 5, I use to be able to spend days out and days trawling the shops, I use to be able to go out and spend time with friends, I use to be able to do everything for my children and run around after a houseful of teenagers. I use to be able to clean the house from top to bottom in a few hours and keep on top of my washing and ironing, I use to be able to spend days looking after my grandchildren and babysit at the drop of a hat…I use to…Now I can do non of these, now I’m lucky if I can get out of bed, now I feel a complete failure in life…Now I have Fibromyalgia & ME

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