Hi to all

[_RJ_in_Pain_]

HI to all other PN sufferers,

I have been recently diagnosed by a neurophysiologist, after multiple dr, urologist and whatever-oligist for 8 weeks and loads of medical and out of pocket claims.

So at least I have a diagnosis - but Im feeling hopeless.

Neurologist put me on 75mg Lyrica twice a day. It helped for about 1.5 weeks. Then, while I was travelling on business, I got bad pain again for three days. The Nuerologist took me up to 120 mg Lyrica and I also started biofeedback with the little machine and the bum sensor.

I was fine again for about a week, and then 3 days ago, pain came back. Apparently the body 'gets use to' Lyrica.

Im so depressed, its awful.

I have no idea how anyone can live with this ruthless condition.

Best of wishes,
RJ in Pain

[janetm2]

RJ,
So very sorry you are on the roller coaster of PN. I saw your other post saying you were going to a counselor and I hope that will help. I am seeing a psychologist along with all the other treatments and you are right this is a tough condition. The things that helped me were to focus on the treatments and a very supportive network of family friends and even co-workers. I had PNE and surgery for that and am doing better but was not in a good state before PNE set in and have not even made it back to there, basically just trying to get by and try to regain as much as I can. Since I do not have any illness that will kill me just those (PN, chronic foot pain and arthritis) I have to try to make the best of it until something does kill me. PT, acupuncture, aqua therapy, etc are helping. I cannot seem to get into the meditation which is probably what I need most but at least I am meeting with the psychologist. I am grateful to be doing better but it is hard. I thought the 20 years chronic foot pain and limitations were bad but that now seems to pale in comparison to the inability to sit, etc added to the mix. I know you are at the starting point of figuring out what to do but it can get better with meds and other treatments you just have to keep digging and trying until you get the things that help and try to focus on those. Hang in there!
Janet

[_RJ_in_Pain_]

Thanks for the response Janet,

"Since I do not have any illness that will kill me just those (PN, chronic foot pain and arthritis) I have to try to make the best of it until something does kill me."

I couldn't agree more. I have had IBS-D for about 15 years as well, so all to familiar with multiple doctors and no improvement. You end up "improving yourself".

Sometimes it just feels like you wish you had something that would kill you, cos then people (/doctors) would take notice.

My stupid urologist even said twice to me (while im having 7 - 8 out 10 pain) "Oh don't worry you not dying yet". And then offcourse expects a cash payment for the consultation.

This is the worst thing I have ever had to deal with

All the best there as well.

[janetm2]

I have had a whole different view on dying and you are right the doctors seem to think " living" forever is the goal but not realizing that we should not be in agony. It sometimes seem humane only applies to animals not humans. Sadly my brother got the dying illnesses (heart disease open heart surgery, lymphoma cancer with unbelievably painful chemo and strokes) over 10 years things just got worse. He started to understand my pain more and I then couldn't see him 3 years because I could not travel I finally got to see him one time once I could travel before he had the 3rd stroke that killed him. He was ready to go during those last few years so although he gave me strength and is now gone I know his pain is over. He put on a good front for others and helped everyone despite his pain. He asked if I told my husband how bad it was and I said no he is doing all he can no sense having him know how I really feel but of course I cannot always hide it so he may know. I have one thing to drive me forward and that is retirement in 2.5 years and I hope without work some of the pain will lower and I can use my energy to do more enjoyable stuff.
Janet