My first blog was about fibromyalgia but I never explained what it’s like to actually live with the condition and my story on getting diagnosed. So here it is.
It can all change on a day to day basis and for each person who suffers from fibromyalgia it can be different. Some people are wheelchair bound, some people can take medication that take the pain away, while others haven’t even been diagnosed yet and have to suffer in silence.
I got diagnosed with the condition about 6 months ago after dealing with the pains and aches for about 8 years. It all started in my hands and arms. It would be every couple of months on a night my arms and hands would just ache and swell and just feel awful. I would get up during the night trying to swing my arms around because of how restless they were. I would even put my arms in freezing cold water to numb the pain. (It came back twice as sore). After several trips to the the doctors it was the same story each time. “Oh it’s just growing pains you’ll be fine soon”. I kept going back with back pain then hip pain and still no one would listen. It wasn’t until last August 2014 I went back to the doctors with full rage and upset because I couldn’t take it anymore! I knew it couldn’t of been growing pains as I had fully grown. I am a women now not a teenager.
On that visit I did little hand and arm exercises and I got blood tests which all came back normal which I couldn’t believe. I demanded another in depth blood test which finally revealed that my inflammatory markers were high. I finally got sent to a specialist who took more blood, wanted to do more exercises and did a ultrasound on my hands and fingers. The ultra sound didn’t match up to the pain I was in so was sent for an x-Ray on several parts of my body. It was nice that I wasn’t getting pushed away for once. I had to wait months for a review of my scans that in the end I phoned explaining the pain was unbarable I needed to see someone quicker. ( At this point I wasn’t in medication as they couldn’t explain my pain).
Finally in December 2014 I was diagnosed with fibromyalgia. I had heard of it because my partners mum also suffers from the condition and has been able to mange hers for a while now. However I still didn’t have a clue what it was. So the consultant advised that I went onto medication such as codeine and paracetamol with amitriptyline on a night gave me some information about fibro and sent me on my way. In March I was back at the doctors and was decline stronger medication due to my age! WTF?!?!! I am in pain and your letting me suffer?
So currently I’m pretty much knackered. I have been left to deal with my pain some how on my own. Some days are brilliant I wake up feeling ok just little twinges, while other I can’t even find the courage to get out of bed. I am always tired and I never sleep due to the pain, even with he medication.
I have got stuck in the bath several times and my partners had to lift me out. Due to this I always have showers now. Some days I can’t even dress myself which is equally embarrassing. I find myself crying pretty much every day. Simple things like opening bottles, packets or doors can be a struggle if the pains are to much. I can remember once I went shopping and bent over to get something from the bottom shelf and got stuck! My hip just wouldn’t allow me to get up. I had to ask a 50-60 year old women to help me. 22 year old asking a 50-60 year old for help on getting up. Something not quite right there I thought. I can look back now and laugh about it, but for weeks I was so upset and ashamed. So now I have to wait till someone is available to come shopping with me to push the trolley or carry the bags because the weight has reduced me to tears before.
It affects every part of my life. My work, social and my love life, but I won’t let it get me down.
I am a health care assistant in a hospital which mean 13 hour long shifts, moving patients, carry heavy boxes of sticking up and just general strain on the legs for walking up and down the ward every shift. My days off are my recovering days from work!
I have tried light exercises which seem to aggravate my fibro more. Even swimming leaves me sore afterwords and takes more days to recover. I can’t go out with friends because making plans is impossible. Just because Monday is a good day doesn’t mean Wednesday is going to be. In a matter of hours my pain can just spring on.
Currenlty I am still on the same medication still sore and tired, but I won’t let it get me down! Joining groups on Facebook has helped me know I’m not alone and there are other people put there who can sympathise with me and support me. My family are amazing and just to help as much as possible and that’s all I could ask for. There are still people out there though who say there’s no such thing and think that is put on. Well if you don’t feel it don’t comment. Not every condition is visible remember that!