I'm almost to a place in my life where I'm making everyone and myself miserable. I know it doesn't seem as long as some of you, this has been 1 1/2 years now and I just feel worse than ever. My doctor is working with me I guess, I take Ultram, Ambien and Neurontin, which neither the Ultram or Neurontin really do of any good. I see him only ever 3 months or so, and he'll up the dose of Neurontin. I don't know what else to do, what else to say? I'm only 22, with this horrible pain.

I know that a lot of you have came and past this point which I'm at, what changed? What did you do?

I just need some people to talk to that understand where I'm coming from, my family, friends, no one understands me..

I'm sorry if I seem whiny or like a complainer, I'm a strong person, I promise, sometimes we just need a little help!

Josh

Hey there
I'm pretty new to the forum as well. This is a wonderful place.
I'm over 20 yrs older than you and i am just as confused. Neuropathy is a frickin NIGHTMARE.
I'm so sorry to hear of your battle. It always makes my heart weep when i see someone your age on here, but you are reaching OUT and that is a pretty good sign to me that you're gonna be ok.......just hang on. It's the people who DON'T reach out.....that's when the darkness consumes.

Do you know how/what started your neuropathy?
Just start out by reading the 'stickies' posts at the top of the PN forum. That'll start givin you your hope back. And NO you are NOT a whiner. I used to feel that way too, but it helps aLOT just to talk.....answer someone else's post if they are in pain.. It helps to 'build me back up a little' when i try and make someone else feel good. We don't have to be experts to participate here....
We just have to 'BE'
That's what i like so much about this place.....there ARE experts, yet there are 'goofballs' (like me ) just tryin to add a little 'cheer' and silly-ness in the midst of all the pain, there are comforters, there are angry 'vents',.....that's what makes us 'full-circle' .

You BELONG here Josh and you vent all you want, because believe it or not, there's a good chance you are actually helping the next guy.....

Keep the Faith
Rae

I think you should try Lidoderm patches. They work well for me...but you have to apply to the "right" spot to intercept the right nerves correctly.

They have no central side effects either. If you search this forum there are posts about them.

Hi Josh,

We know what you're talking about. Neuropathic pain is terrible. I think it's even worse at this time of year when there is so much external pressure to be cheerful and so much internal anguish that you can't.

My doctor's only response to my pain is to overdose me on powerful meds. That just makes me a grumpy, pain-ridden zombie. This has gone on for three years and I've been told it will not improve. Frankly, I have very dark days when I think I just can't take it any longer.

When I feel that way, I come here. It's amazing just how talking to people who really get it, can get you over the hump. They remind me to take it one day at a time; to hold out for the people I love and in the hope that future medical advances will someday change all our lives for good.

Feel free to post, leave profile messages or PM any of us anytime you need an understanding ear.

Hang in there!!!

Josh, I don't think you are whining.

It is always possible you may improve with time. Some PNs are self limiting that way. Your young age is in your favor.

If this turns out to be CMT or some other genetic cause, then improvement would be unlikely.

I think it is time to look at some supplements in earnest for you.
What are you doing so far, if any?

'They remind me to take it one day at a time; to hold out for the people I love and in the hope that future medical advances will someday change all our lives for good.'


What a wonderful philosophy!

I agree that if it turns out to be CMT, there would be no improvement as CMT is progressive no matter what you do. There is no magic bullet for CMT or pill, or supplement, etc. Perhaps there will be something in the future. They are doing lots of research to try and help. Just from my perspective.

Hi Josh, It can be extra difficult to cope with neuropathy when you have youth going along with it. Looking good is about all most people can perceive. Not being understood is a real struggle and a bummer. Isolation does not have to be the outcome. I make a point of finding some metaphor that the person can understand. And then relate my symptoms to this metaphor. I repeat it as often as possible to them. Sometimes calling your worst days by this metaphor is a potentially humorous way to remind others that, yes, you are still with the process. I personally get extremely aggravated when others forget or truly believe it should all go away like a bad case of the flu. It is good to practice clear responses, sometimes funny, sometimes more pointed, to have at the ready. Then know that it is not your job to teach others how to be empathetic. If "there is no cheese down that tunnel" look elsewhere. Keep trying, if it is a close family or friend, often going around the other persons resistances or blind spots and presenting in a startling way which wakes them up to the reality that you are not the same physically, yet you are in fundamental ways. Some people simply cannot handle your reality. It is sucky when you get to that point with someone and realize it costs you too much to maintain a connection. This makes it lonely until you find others who can relate.

Self empowerment comes slowly. Part of it is validating, caretaking your own pain as if you were a injured pet or child. We teach others how to treat us by how we treat and respect ourselves. Never give in to the insensitivity, or giving up option, whether from within or from outside. It serves no one and nothing but more unconscious suffering.

We live in an empathy challenged world. Read Prema Chodron, "When Things Fall Apart", or especially good is "Healing Through the Dark Emotions- The Wisdom of Grief Fear and Despair", by Miriam Greenspan. Another great help is Rachel Naomi Remens, "My Grandfather's Blessings" or "Kitchen Table Wisdom". I recommend MGB as most appropriate to coping with pain and illness. All of these are really great. Hope something inspires you to learn what many will not have to until they are far older. We need way showers of how to do this. You could be one of them for your generation. We often underestimate the subtle influences we have on the world by embracing our process with compassion. Best Wishes TT