I’m in the middle of a severe flare up of Fibro. I hurt everywhere but it’s getting better on prednisone and using morphine for the pain. Everything including touch of my scalp hurts. I had bloods done, here is my silver cloud moment, they had revealed that I have developed polycythemia Vera. My doctor is now referring me to a blood specialist for this condition. I understand that it’s quite rare but is treatable long term and on going.
The week after next I’m having a pacemaker inserted as I have long qt which has gotten to the point where without warning I just faint in the street. I’m a medical marvel and all before I turn 60. I have a knee replacement 7 years ago for arthritis in the knee. Wow so much, I don’t really think that it’s worth worry - I’ve learned that worry doesn’t actually change a thing. I did ask my doctor since this new illness is rare ( he quoted one in a million) and since I live in a country of only 5 million here are any others in my area with it. He said I will be the first- I smiled at him and said wow that makes me unique.
I have been off work this week but intend returning next week. Usually I can push through the pain, I make myself do this because I don’t want to stop work and I am in a position where I can self pace.
I may not be able to work forever, that’s true for us all, but while I cani will.
Hi Lindy - I am so sorry that you have a flare-up. The pain can be unrelenting at times, and doesn't really allow you a break. I have had my scalp hurt too. Very weird that this pain would be in that location. I also have neuropathy. Nerves that have the tendency to misfire and the brain gets confused. When I am under really bad stress (like last night) I start to get 'jerky' and twitches too - all over the body. However, it only occurs at night. I get shooting pains in my hands and the pain goes to my finger tips. It feels like bad electric shocks. So far, I don't know if this is conenected to the Fibor. But if it is, I wouldn't be surprised. It is getting to the point, that everything that goes wrong me me, physically, seems to all Fibro related. Please be careful about 'pushing through the pain'. This is what made me retire earlier than expected. It only aggravates your situation. I do understand the necessity to work and if this has to be, just be really careful and pay close attention to how you are feeling at any given time. I hope everytning works out for you, Lindy! Laurie