Hi my name is Paul and l have been suffering with sever pain for 35yrs. l was diagnosed at the beginning with rsi, carpal tunnel syndrome and reflex dystrophy, And the goal posts have been moving ever since. Only recently has my daughter been diagnosed with Fibromyalgia and straight away she thought of me. i had never heard of it before that. My pain is area specific my right arm up to the shoulder, l am now completely house bound and have been for the last 5yrs. l have been seeing a new specialist who says fibromyalgia is NOT area specific, l believe differently apart from living in pain that goes up to a 10 on my pain level (and l can take a lot of pain now days) my memory is getting worse by the year, I have had this for 35yrs l forget a lot of things like reading a book after the 1st page l cannot remember the characters on it, cannot remember tv series or films so l can watch them again and again like it is the 1st time or sometimes after a few episodes vagally remember it .
when this condition 1st started for the first six years it was like my arm was on fire, l had no help from doctors they kept giving me tablets that did nothing for the pain, and then it seemed they gave up on me or did not believe how bad the pain was. l am still amazed l made it through then first six years without cutting my arm off or committing suicide.
the pain sort of eased after the first six years meaning it was not 24/7, it now has it dull periods where the pain is manageable but can be triggered easily by things like going out on a hot day where everyone is wearing tee-shirts l used to go out with a jumper and jacket on, and a breeze would hit my hand and start the pain, and very quickly it would shoot up to anything from a 8 to 10 on my pain level, so that is why l am house bound now, apart from having a lift to doctors or hospital. a couple of times l have had to walk to the doctors, my wife has to come with me because of how bad l get after a 10min walk ( the pain builds up quickly now days it starts to build by the end of my street witch is about 50 yards away. After that l have to try and control my pain and and my wife has to stop me strafing into the road.
Now my rant at Disability or PIP as it is called now days for 35yrs l have on and of been banging my head up against a brick wall and getting nowhere, they have even said they can see l am in severe pain but l can walk more than 100 yards if l have to, this makes me so angry the pain l have to go through, and some unfeeling government person who has no idea what l have to go through makes my blood boil (and l am a Buddhist and that is not easy to do).
As of this moment l have a appointment to see the specialist again and try to make them see fibro can be area specific, then l have a tribunal against PIP.
l feel like l have very little fight left in me after 35yrs of living in pain l feel it is winning the battle, and l have nothing left to fight with, the only reason l do is because of my wife (soulmate)..
Thank you for letting me rant on.
when this condition 1st started for the first six years it was like my arm was on fire, l had no help from doctors they kept giving me tablets that did nothing for the pain, and then it seemed they gave up on me or did not believe how bad the pain was. l am still amazed l made it through then first six years without cutting my arm off or committing suicide.
the pain sort of eased after the first six years meaning it was not 24/7, it now has it dull periods where the pain is manageable but can be triggered easily by things like going out on a hot day where everyone is wearing tee-shirts l used to go out with a jumper and jacket on, and a breeze would hit my hand and start the pain, and very quickly it would shoot up to anything from a 8 to 10 on my pain level, so that is why l am house bound now, apart from having a lift to doctors or hospital. a couple of times l have had to walk to the doctors, my wife has to come with me because of how bad l get after a 10min walk ( the pain builds up quickly now days it starts to build by the end of my street witch is about 50 yards away. After that l have to try and control my pain and and my wife has to stop me strafing into the road.
Now my rant at Disability or PIP as it is called now days for 35yrs l have on and of been banging my head up against a brick wall and getting nowhere, they have even said they can see l am in severe pain but l can walk more than 100 yards if l have to, this makes me so angry the pain l have to go through, and some unfeeling government person who has no idea what l have to go through makes my blood boil (and l am a Buddhist and that is not easy to do).
As of this moment l have a appointment to see the specialist again and try to make them see fibro can be area specific, then l have a tribunal against PIP.
l feel like l have very little fight left in me after 35yrs of living in pain l feel it is winning the battle, and l have nothing left to fight with, the only reason l do is because of my wife (soulmate)..
Thank you for letting me rant on.