This is a horrible disease!!!
 

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.

This disease is horrible- part 2
 

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

Hey Pat :)
 

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.

Oh Stacy :)
 

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.

Hello peeps :)
 

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.[/QUOTE]


Now that I think about it y'all are correct ! If I have a good day both my grown kids think I'm better and now I do try and 'hide' the good days somewhat. Wow. Eye opening.

We have a new 4 month old puppy, Angus, and I need a collar for him. I gave my daughter some money last night and told her next time she was in WalMart or wherever to pls get a collar for him. She was like, why don't you just run down to one of the dollar stores and get him one. She wasn't mean about it but it still makes me feel bad. I told her I would LOVE to jump in the car and go through all 3 dollars stores in our very small town BUT.....and she said Oh yea....you can't do that can you ? Nope, nada....haven't been able to since last April 2013. Weird how you can remember these terrible dates :)

I'm very thankful for everyone here. This is terrible to live with and I never seem to know what's around the next corner...which is scary. But there are people here that know and understand pain and the many ways it effects all of us. I am truly Blessed to have found this site and one very special friend that I love dearly.....You know who you are :)

Debi from Georgia

I would say you are venting a bit; gripe ..Not. You are dealing with some nasty issues. l haven't driven for a few years now. So far haven used wheelchair. The cane seems to work for me. Also deal with feet up to the butt. Not nice.

Any time you feel the need to express frustration, please do so. We are all here for one another.


Gerry

Debi,
Been wearing slide sandals with velcro for years. Unfortunately no support which I think adds to the leg pain. I am surprised you are able to walk barefoot. Ouch....that hurts even more for me.

I agree; staying positive some days are quite difficult. I don't know what I would do without conversations with God.


Gerry

I wear Berkenstock brand sandles. Any other shoe hurt within 5mins, but for some reason I can wear these sandles for an hour or more.

However, I've only had my pain for about a year, so perhaps I'm in the earlier stages.

I like to wear shoes that are as open as possible. Flip flops in the summer but they are getting more difficult. Seems I have to curl my toes to keep them on. In the house in the summer I go barefoot. In the winter I wear slippers. I don't have a lot of carpeting and my feet can't take the cold.

After, reading these post started thinking it is hard to share with others when I have a good day. I think friends and family just don't understand and probably never will. Can't say I blame them. If I didn't have this, I never would have guessed how bad it is.

Thank goodness with this site we all have others that understand.:grouphug:

I think part of the reason people don't quite understand the extent of our pain is because they can't see it. Also, if we said we had cancer they would get it! Our disease doesn't have the public awareness that other painful conditions have.

Before my medication was adequate, for the first time in my life I spoke of suicide. I told my mother that I wanted to live, very much, but that if this pain couldn't be helped, please don't expect me to live for decades this way.

You know, she nodded at the time and I thought she understood. Then, within weeks, as my pain started to show less and less as the drugs kicked in, she acts as though I'm normal. She just doesn't get that there is residual pain and that I can't stand up for long periods.

BTW I have a question if anyone can answer. I'd rather not make a new thread.

I've seen somewhere written that if you have neuropathy and then get a flu or cold, it's a lot worse. I've been lucky enough not to have had a flu this winter, but am wondering if anyone here has, and just how bad is it? If I get the flu, should I increase my Tramadol?

There are a good number of anecdotal reports--
 

--of stress, including that associated with flu, colds, or other viral illnesses, exacerbating neuropathy symptoms.

It's not certain whether this comes from just having one more thing to deal with, or whether some sort of immune mechanism is at work. Certainly, those whose neuropathy has a suspected or proven autoimmune component would be more vulnerable, as infection changes your immune status.

I would still consult with your physician(s) about upping one's meds if neuropathy symptoms got worse with an illness, in much the same way one would consult if one's symptoms got worse in general. I suspect that many physician's responses would be just as speculative as mine here, but at least that give you a little butt-coverage.

AussieDebbie
 

I've seen somewhere written that if you have neuropathy and then get a flu or cold, it's a lot worse. I've been lucky enough not to have had a flu this winter, but am wondering if anyone here has, and just how bad is it? If I get the flu, should I increase my Tramadol?[/QUOTE]

Now that you ask....lol.....just got back from my PCP a little while ago.....I've been bad for over 2 weeks.....spent days in bed with neuropathy pain in legs, both arms and as always the feet and hands. I had no idea what was going on.....then the upper resp / sinus stuff started and I battled that for a week before breaking down and going to the dr.

So for me I'd say yes......made everything worse. This is the first cold / sinus issue I've had since the SFN started. I usually only take 1/2 a vicodin at a time but I was using a whole one plus 1/2 a Xanax just to try and get through the pain.

Debi from Georgia

Hi Aussie,
I had a really bad cold not that long ago and my pain level raised a lot. I spoke my rheumo and was told that illness will increase my level of pain.
Hopeful

Thanks for your responses. :)

Mental note to self - do NOT get a cold, flu, or virus of any sort!

Glenn, as for the increase in Tramadol, I'm currently on 2 per day, and my GP has told me to use as much as I need but not exceeding 8 per day. So, there is plenty of room for me to use them if I need extra to get through a hard week or so. Thank you for your answer though, appreciated.