Hi my name is Pammy and I have PN Peripheral Neuropathy. I am new to being connected to any support group but at the risk of totally going round the bend, I thought I might ought to do something productive and join in a support group. If nothing else by some of the posts I have read and responded to I am not alone in having this! And tells me I am not imagining this.
I started having problems about 12 years ago and going through a divorce at the time my gp suggested my pain was more emotional than real pain. However after many trips to see him he finally reluctantly sent me to a Neurologist. After 3 MRI's and a number of nerve conduction studies and a very lengthy 3 hour appointment I was diagnosed with PN. I am a non diabetic and this has been inherited from my mothers side of the family where the men all had it. Thanks mum!
I have pain and burning all the time in my hands, fingertips, feet, shin and calves. It started out with shooting pains in my feet that felt like I was plugged into a socket. Random pain that I just couldnt get rid of. This has now moved to my fingers and hands. I have tried a whole host of medication some worked and a lot didnt. I put on nearly 4 stone but now after stopping Lyrica I am slowly loosing yay me! I have now learned through trial and error what I can take and not blow up and go boom!
So now I am on 250 mg Tapendatol 2 times a day, 100 mg tramadol 3 times a day, 1200mg Gabapentin 3 times a day, 10 mg Dizapam if I need at various when I need, 15 ml or 30mg Oralmorph when I need for break through pain or I can take 30 mg morphine if I see it coming further and have the time to wait for it to take hold and work. I have tried various antidepressants that made me feel awful so I wont go there again. At the moment everything is working okay and that is a good thing because trust me there has been no less than 12 changes in medication in the last 5 years! Mind you that things always change in the face of NP! lol
As we all know having an illness you cant see brings all sorts of problems. I know my journey will be long and hard especially with my benefits. PN is a real illness that no you can not see. The DWP does not always want to recognise that it is real. Even though my neurologist who trained for many years knows this to be a real illness was questioned on my last paperwork that got kicked back by them. I dont know anyone with this illness would to choose this as a lifestyle choice. Pain 24/7 is rather difficult to put into words on a booklet that ask the same questions but in different ways. The DWP has this way of trying to get people to trip up on their answers in booklets they use to assess our illness and then double back like a secret spy trying to get information that benefits only them. However being knocked off and on my benefit like a yo yo is at best frustrating. More on that later.
So this has taken me 3 days to write what I have because my fingertips are so sensitive lol. I can only do things in short bursts before my fingers feel like they are ready to pop off. I will write more as I learn how to work this site and ask questions as they come up. Until then I hope that I might have helped someone with the story about medication ect ect...Take care for now with whatever you have and I pray you have a pain free day!