Hi Beth, what were the circumstances of your fibromyalgia diagnosis?
It all started in December last year when I started to feel like I had a very bad flu. I was aching all over and felt really out of sorts. I was signed off work and ended up spending Christmas in bed feeling very sorry for myself. I’m usually an active person and look after my partner who retired early because of a heart condition.
Mid way through January I still didn’t feel well and then the pain came in like a bulldozer, I felt like I had been run over.
I couldn’t get in to see my GP and by then I had started to feel very depressed and emotionally drained but I couldn’t figure out why I was feeling so tired all the time from doing nothing. I was prescribed anti-depressants and still not back at work at my job in a local supermarket and I’d planned to see a counsellor.
The pain in my legs was unbearable and it started to spread into neck and shoulders, I had terrible buzzing noise in my head, I was dizzy and groggy, couldn’t string a sentence together at times. I began to worry then, I really thought something serious was wrong and eventually got a telephone appointment with my GP who prescribed a different anti-depressant and blood test.
The new medication made me worse and waiting for my tests to come back was one of the worst weeks of my life! I was terrified something really awful was happening to me. Stressed off my head and when the tests came back as no abnormalities I was both shocked and relieved but no further forward. My GP at that point mentioned fibromyalgia and referred me to Jok Saunders at the Fibro Clinic, in Barnstaple. I’d heard of fibro but was not really sure what it actually was, but by then Covid19 had emerged and the clinic was closed. I did manage to speak to Jok and she explained a lot about fibromyalgia and signposted me to the Fibro Chronicles where I could read about other women who have fibromyalgia.
As the weeks went on I was still uncertain that I had fibromyalgia, it didn’t make sense to me because it seemed to have appeared over night for no reason. Jok told me that she could not diagnose me and to persist with the GP.
I knew something must be wrong with me because I was in so much pain and I could not sleep for the worry and I kept hoping it would go away as quick as it came. By then we were in lock down, I was at home feeling so stressed, afraid and alone, I didn’t know where to turn. The symptoms were getting worse so I was back on the phone to the GP and she diagnosed me with fibromyalgia and prescribed Pregablin a few weeks ago.
I’m actually still in shock and I fell to pieces when I found out that there is no cure! I can’t believe that this has happened and there is nothing the GP or medical profession can do. I’m approaching my 50th birthday and I feel like I’m 90, my life is upside down not just because of the lock down and isolation but because I’ve been diagnosed with fibromyalgia and trying to manage the chronic pain and there’s no support. Is it like this for other sufferers?
I know it’s early days but does it get worse as time goes on? Jok’s told me about face book and support but I’ve never been on it and to be honest I don’t think my brain is up to it, some days I can barely string a sentence together. Jok invited me to share my story to help me get it off my chest and also to know that I’m not alone with this. That’s been the worst part of being diagnosed with fibromyalgia is feeling totally alone and knowing that it’s not going away.
Thank you to the ladies who have shared their stories on the fibro chronicles, it’s been a reassurance to me and thanks for letting me share my situation. I’m hopeful that I will be able to meet some other sufferers who will understand how I feel, Beth x