My Diagnosis Story

What symptoms led up to your diagnosis?

I started with severe symptoms about 14 years ago in my early 30's, but looking at things now I think symptoms started in childhood. Severe fatigue, really bad pain all over, especially in the shoulders and legs, exhaustion, struggling to keep up at work, I would come home and have to go to bed. Relatives thought I was being lazy, I also had a under active thyroid and other health problems. 

What tests did your doctor do, and what was this experience like?

At first, doctor said it was down to thyroid and other drs said depression. Back then, there was little known about fibro and when you went to the drs they made you feel as if you were imagining the symptoms. After about 2 years, I finally got him to refer me to rheumatology, had a 10 min appointment and he did pressure point tests and said yes it's fibromyalgia. He sent me away with painkillers  and an appointment to see physio.

Upon learning about your diagnosis- what happened next?

I was at my gps a lot, some drs made it clear that fibromyalgia didn't exist, it was all in my head some. Drs were a bit more insensitive and gave me painkillers and sent me to a pain specialist, which I thought, great I am getting somewhere. He was useless, sent me for 4 weeks physio, which just made things worse. As time went on, my health and symptoms got worse. 6 years ago I was diagnosed with type 2 diabetes and 5 years ago I had to give up work, in pain everyday, and flareups are hell, but I have finally accepted what I can and can't do. I've had tramadol, made me sick and feel worse. Gabapentin didn't work and pregablin piled on weight and allergic. The best thing that happened for me was being sent to Preston Pain clinic. The staff are brilliant and my consultant is great. Mr. Hacking, after trying everything for the last 2 years every 3 months, he gives me a spinal block in my neck and head and shoulders. It doesn't stop all the pain, but makes it manageable. I still get my flare ups and fatigue but am managing and accepting of my condition. When I have my flare-ups, I tell myself at some point that the pain will ease, try to pace yourself. If I'm having a bad day, housework can wait. It doesn't matter, if I can't go to an invitation, there will be another invitation. If you have children, I know it's harder than ever, but try to rest when they are out at school if you can. If you are still working try to have an hour when you get home with tea or with your partner, if they're home (this illness is really hard on your family, especially partners). That hour can help you to have some kind of normalcy, having tea, talking to the kids, then having an hour with your partner. If you try to push yourself too much, you end up a mess and not being able to function at all. BE NICE TO YOURSELF.