I am 67 yrs young have had pn for 16 yrs now. I take 2400 gabapentin and 2-3 norco (10/325)a day. I still can hardly walk most days! I have an electric wheelchair for the really bad days. I get very depressed because of the constant pain. I still drive but can usually only make one quick stop at grocery store etc.
My pn is very bad in my legs- up to butt! And my arms are getting bad now. Sorry to just gripe but i can't think of anything "happy" to say about this disease.

Forgot to add that i also had to have a "spinal cord stimulator" implanted over a year ago, that has barely helped, not sure the pain of surgery was worth it!! How could i forget to add that? Gabapentin "memory block" at work huh?

Hi Pat and welcome

you had your 2 posts tucked onto 2 other existing threads so I have moved them together on your own thread for you

You must have been reading my mind ! I was thinking the same thing

How in the world you've done this for 16 years just amazes me. I'm going on my 11th month since this monster claimed my whole, entire life. Nothing compared to you

Do you take something for your depression ? I'm on 40mg of paxil....was only on 20mg before all this started and I was going through chemo then. Exactly one month after chemo....Wham....SFN knocked my feet out from under me. Not literally thank goodness

I got up to 2700mg of gaba but couldn't take the side effects in my head.....the neuro dropped me back down to 1800mg gaba and added Cymbalta....I'm now up to 90mg on the Cymbalta. I take 1/2 a narco (7.5) every 3 to 4 hours and add 1/2 a Xanax when the pain gets too bad. The pain is never actually gone.

I don't drive or ride unless absolutely necessary which it was this afternoon. Only drove 4 miles and back. Never even got out of the car and all the way home I had to put my left foot up on my right knee and hold my toes ! Stinging and electrical currents go crazy when I'm in a car.

I don't even want to think about an SCS until I've exhausted everything else. All I want to do is clean my house, grocery shop once a week and cook.

And I understand about hardly being able to walk. Being on my feet at all for any length of time does me in. I do walk the dog 4 or 5 times a day in our yard because I know I have to use those muscles. It hurts like crazy and by the time I'm coming back in I'm a limping mess.

I have this in both feet, my hands and it has now started in my upper right arm. Some trouble with my legs on and off. Not sure what's going on there.

Sorry to hear about your troubles and I truly understand. I'm 51 and there is not one good thing to say about this condition.

Debi from Georgia

I AGREE!

At 47 I try to avoid days where I sink into a hole wondering how much worse it is going to get. Just last year at this time I could still where shoes and work. Now, 1 yr later it is drastically worse. I don't work now, or wear shoes much, or do the things I use to do.

I try to stay positive. Sinking in that deep hole of despair only makes things worse.

Welcome to the board, lots of great people and advice.

I just added a post to your newest thread and I come back and here you are !

Shoes are my enemy.....finally found the black side things with the Velcro strap across the toes. I have to keep it loose and sometimes that doesn't even help. It's best when I'm barefoot in the house. I have no idea what I would do if I lived any further north

And yes....staying positive is huge for us. I've had some really, really bad days the last 2 weeks and trying to find the positive in anything was hard and I forget that it does get better at the time. I'm still new at this whole SFN thing and trying to find my way the best I can.

Thanks to all of you !

Debi from Georgia

You are certainly not alone! I am 52, and in your words I see my future. At a time when life should be less bothersome and more relaxed, I'm hit with this monster. Scared and angry, facing uncertainty every day.

What I find intriguing is how our group here on this forum are of similar age. We are still young! I'm terrified that I'll be living in pain for the next 30 or 40 years. One day of this is often more than I can stand. Sometimes I ask myself why I do it, why endure this. Subconsciously I guess I'm waiting for a miracle to give me my life back.

Because there is no physical injury proving the extent of my pain, it's difficult for my family to grasp just how hard it is for me to walk and do normal things, example dancing. If I'm having a good day, I dare not show them, for they will assume I'm better and expect me to be more able to do things.

Our monster is silent, ever torturing.

The ONLY thing preventing me from ending this existence is knowing I am not. alone on this awful journey. Every now and then someone is saved, giving a glimmer of hope.

Anyway, just want you to know that you have us. We care and truly understand your pain.

We are all about the same age, which is interesting. I am also 52. I would say that it gets easier, especially if you can get the pain under control. I asked my husband how he would feel if his legs fell asleep and stayed that way permanently and he said it would drive him crazy. It only bothers me if I think about it. For the most part I ignore my legs unless the pain is particularly bad or the burning acts up. Sometimes I cannot stand the pressure of the sofa or chair, and the feeling of the upholstery on my legs and hips, and I need to lie on a sheet with the weight evenly distributed. My hands going numb is much more of a problem because I cannot do the needlework that I rely upon for distraction. Even holding a book can become difficult.

Mine is hereditary which means that it will only progress and there is no treatment or cure. The worst part of it for me is knowing that my two sons have inherited it.

Because I have had some symptoms all of my life, clumsiness, lack of balance and coordination, and then increasing numbness in my toes and leg pain from my early 30's, I have had a long time to get used to it. It must be awful to be hit with this all at once. While I avoided telling the doctor what was going on, I had a feeling that I would end up in a wheelchair sooner or later. I attributed the leg pain to varicose veins, arthritis, whatever, but I knew it was bad and it was progressing.

We have discussed from time to time how hard it is if the people around you don't acknowledge your pain and disability. I think that must be one of the hardest things to bear, and it is unfair that you cannot enjoy a good day without worrying that they will think you are fully recovered.

Hi Susanne

I cannot imagine the horror of knowing your sons will most likely inherit this. I believe that in their time there will be better medication to assist people with chronic pain. Only a few days ago I saw an interview with a Scientist who is working on a very promising breakthrough treatment. He said this new drug should be available in a few years. That may be a long wait for us, but for your sons, hopefully it will make their lives easier.

I don't believe that this new drug is our Holy Grail necessarily, but if not this one, perhaps the next.

Thank you. Finding these forums is a great help. The support is amazing.

I believe Susanne's two sons have inherited CMT. It would be the same type that she has which is CMT2 but the subtype in her case is not known as I understand it. However, no one not even a doctor, can predict how they will end up. They might have awful pain or not. No one knows. CMT symptoms vary greatly even within the same family.

Also, I believe I have read that Susanne also has arthritis and that can be contributing to some of the pain, stiffness, etc. And also overdoing exercise and the like. That can exacerbate CMT symptoms. There is a fine line as far as overexertion. No pain, no gain is not for a CMTer.

Numb legs, feet, hands, etc. can certainly be a part of CMT. There is pain medication out there, many types, that do help a lot of people who have a type of CMT. There are over 70 types of CMT identified so far.