[dancinglady]

If I read any more negative, depressing, non-success, nothing a person can to fix or stop this problem in its tracks, hopeless posts on this forum I am going to start thinking about ending it. Everyone on the neuropathy forum talks about their pain, suffering, hopelessness, struggle. I am assuming that people who have successfully managed their illness have left the site. Everyday one more post talks about progression. One more post talks about not being able to control anything about the disease effectively. It sounds like I am in the very early stages and in a couple of months I won't be able to move and will be in so much pain I will suffer endlessly with no hope of relief. If this is my future there will be none. The reason I am posting here is because the moderators said that if I post anything about suicide it has to be here. HELP. Does anyone have a success story of getting better or is this just the start to my end. As one poster put it "self delivery". I am hoping the people on the site are the few not the majority of neuropathy sufferers. I guess people have their reasons why they want to stay alive with all of this horrible pain. I do not.

[St George 2013]

I have severe small fiber neuropathy and the skin biopsy showed NO A or C Fibers are left in my feet......0....zero.....nada.

I was dx's Sept 2013 and yes it has been a journey in pain. I was stubborn and didn't go to the pain mgmt. dr until last Sept/Oct even though I had 3 dr's telling me that was what I needed. Didn't want to go to a 'pill mill' as I had seen on TV.

Well they are not all pill mills as I have learned with very caring and helpful dr's and staff. Not sure if you use PM or not. Due to the death of my husband I haven't been able to read up on folks and their conditions.

Using BuTrans Transdermal pain patches that are 20 mcg/hr for 7 days and oxycodone 10-325 I manage. Every now and then I ask my PCP for some 20 mg prednisone as it seems to help but is not very good for you.

We are here when the sun comes up every morning and goes down every evening. What we decide to do during that time is up to each of us. I choose to look at all the wonders around me that God has given us. Sunshine, flowers, trees, birds, smiling and laughing children that I hear outside playing. It's what you see and feel that can make a difference.

Do I go to bed crying some nights ? Does the pain wake me up in my feet and hands ? Do I have to stay in bed for days because I can't walk because my feet hurt so damn bad ? Yep to all of those but yet I keep going.

I do not want to be defined by my disease or my pain.

My mind is crazy right now and I hope I'm making sense to you but this is a place for people that are ok and managing and for people just starting this journey and need caring guidance and love.

And no not everyone leaves this site when they are better. I'm on paxil 40 mg a day and gabapentin 1800 mg a day. Along with the patch and oxycodone I get by. Is it perfect ?....no...never going to be but it's the best I can do at the present. May have to change meds in the future who knows but I'm willing to stay here and keep trying for myself. FOR MYSELF and no one else. Because I matter.....I'm important to this world that doesn't see my pain.

Hope some of this helps.

Debi from Georgia

[Littlepaw]

Hi Dancinglady,

People who have gotten better or are less severe might be out in the world doing other things. Do people show up here when in need of venting and support? Of course! But I am certain many cases of neuropathy are out there are just trucking along. I have a sister who is one of them. Do not project worse case scenarios onto your own future. Every case is different and there is no reason to believe yours will be the worst possible. The forums go through cycles. Members go through cycles. They come and go and have good days and bad days. Often we hear about the bad days and that's okay with me because I am glad people reach out when they are feeling at their worst. But it IS nice to have some balance.

Many of us go out of our way to focus on small successes. One member even started a Success stories Sticky thread on a sub-forum. Some members who deal with excessive pain daily get on to encourage others and remind us of our bravery and general awesomeness. There are many tales of beauty and meaning.

If a subforum is triggering for you explore another or see what positive you can jump in with. We can all use redirection and advice sometimes. If something helps you cope please share it! Tool around on the Social Chat and The Lighter Side. There are many ways to participate.

I hope you find a spot that helps you feel at home. There really is a great group of people here.

Sending hugs,

[Susanne C.]

I firmly believe that there is help available through pain management for neuropathy sufferers. It may take some trial and error but some combination of medication and lifestyle changes will reduce pain to levels which allow you to concentrate on other activities for most or all of each day. If your need for pain management is not being taken seriously, keep insisting.
Many of us with the most severe cases, like Debi, are on serious pain medication. I am on time release morphine, MS Contin, 30 mg x3, along with gabapentin, baclofen, oxycodone for breakthrough pain, and Valium for severe muscle spasms. It sounds like a lot of medication but I have noticed few if any cognitive effects. I am able to care for my family, cook, do some shopping, drive a little, go for short walks. It is not everything I would like to do or used to do, but it is a fine quality of life.
There are times when I have to talk myself into going on, when the burning gets out of control or I feel especially useless, but this problem is more related to my state of mind than my physical condition. Even if I enjoyed perfect health I would have feelings of worthlessness, I always have struggled with them, since early childhood.
I am sorry that you find the forum depressing. I have always found it inspiring, many people here are doing very well despite neuropathy. It is natural that newly diagnosed people are frightened but many of us have learned to live with our pain and disability without letting it define us as Debi said.
Many neuropathies do not progress or progress very slowly. Please insist on the help you need.

[Andy_Pablo]

Hi Dancinglady. I think its human nature to release the negative rather than the positive, especially on a forum like Neurotalk. I know for a fact, most of my posts have been of a negative tone.

I hope your situation improves because as a sufferer of nerve pain, I would not wish it on my worst enemy. But know & understand that you are not alone & there will always be someone on this site who WILL be a friendly & understanding digital shoulder to lean on...

There are some great people of this site who can & will try to help...


Cheers,

Andy.

[Jomar]

There is always the hope for many , no matter what serious health issues they have, that one day, a cure, a new med, or miracle treatment will come along..

Sometimes learning about the stages of grief is helpful - not only about loss of loved one, but loss of health, or other major life changes.

stages of grief
http://psychcentral.com/lib/the-5-st...oss-and-grief/
http://www.recover-from-grief.com/7-...-of-grief.html

[Mark56]

Hi Dancinglady and all-

I feel deeply grateful that you came here. Paint me over optimistic, yet I believe somehow, some way there is a way to go forward.

My neuropathy is permanent. It was not of illness origin. I was badly hurt in a freeway high speed wreck. Changed my life. Pain has been horrifically off scale. Many, many surgeries. My pain management doc ran me through all tests thinking I had/have RSD CRPS.

No feeling below the knees. Fluctuating pain knees up to lumbar area. Legs that jump at the dangedest times whether I am resting or at work. Spine injuries even affected my ability to hold a pen to write my name.

The good stuff? I had lost my career. Family and I lived off savings for years until, by grace of God, pain management FINALLY began to work a bit. I was able to resume practice. Help clients. Provide for my family. Even regain a home - because we had sold all of our "things."

I feel blessed. We had sold my exercise bike in "the great sell off" but found one at the Habitat For Humanity Re-Store early in the summer. I have been dedicated at working to resume some lower body strength. Riding now up to an average 12 miles a day.

Funny thing is, I can do that but can't swing dance with my wife anymore. Those legs that can't feel are troublesome when dancing.

I chimed in to share despite persistent neuropathy, continuing pain, there definitely IS quality to this life. You know what? I am pulling for you that good.....measurable good will come your way. And soon.

M56

[bluesfan]

Hi Dancing Lady
I've read most of your posts and can appreciate what you're facing. Reading about others trauma on NT, when you are facing your own seemingly impossible dilemma, can exacerbate depressive feelings.

Another reason there may not be too many success stories on NT is that some people are naturally reluctant to 'crow' about their good days or success to those they know are worse off than they are.

However that said there are good stories on here - and there are threads that discuss successful treatments for PN. Admittedly a lot of searching and reading is needed to find them and as you're finding that overwhelming at present maybe a short break until you are feeling stronger might help.

If you think it might help, I'd be willing to do some searching for you, and share relevant threads with you. If you'd like to do this and are able to do private messaging please contact me and we can discuss what you'd like to search.

Walking in your shoes - bluesfan

[Hopeless]

Hi dancinglady,

I am not very good with putting things into words these days but I want to share my thoughts with you from my own experiences.

Hope this comes onto paper as it is in my head.

I think about how things change from day to day, month to month and year to year in my life. How times that I thought I would never get through,... some how are things of the past. I made it through and found life can and does get better. There will always be new challenges to face, but we never know what tomorrow will bring unless we are here to greet it.

It took a very long time, but at the moment, my PN is under control. I went from excruciating pain that was 24/7 non-stop when nothing seemed to reduce the pain to having low levels of intermittent pain lately. (The past few months.) Yes, there is hope, and there are some success stories. I am not cured by any means and I know that those extreme levels can return at any moment but if I was not here, I would not have experienced the success I got from pain mgt.

I am dealing with MANY various health conditions, PN being only one of them but getting at least one under control has made life more bearable.

Where you see negativity in reading posts of unrelenting pain from PN, I see how much worse others are and how very fortunate I am that I do not have some of the various conditions of others here on NT.

Reading about others makes me feel blessed.

I could wake tomorrow and my PN could be back in full force but I want to be here each day to experience whatever the day has in store. You never know what tomorrow will be like until you are in it.

It is a difficult adjustment to go from being an active healthy person to a complete shut-in, with pain others could only imagine, unable to function in daily activities of life as simple as walking from one room in your home to another but you do adjust. It may not be the life you had or want, but it is the one you are living and the operative word is living.

I want to be around to see what tomorrow brings. But that is just the way I look at life.

There were times when I wanted to give up. I didn't think I could make it through certain events and pain in my life but I did and every time, I was glad I stuck around for the next chapter in my life.

Who knows, you could be reading a post from me tomorrow that is full of despair and pain but for the moment, I am blessed just to be alive. The friends here have helped me through some awful times and horrendous pain. I will just be happy that my PN is better for now and pain mgt. has tamed the beast for the moment. That gives me a chance to work on all the other issues that keep me bed-ridden so much of the time.

[Enna70]

Dancing lady
The reason I vent here is because here we are understanding. You are not judged for feeling what you feel. Yes, some days are beyond hard and how we survive them is a miracle.
We are wonderfully made. We make it everyday..so even though you feel this is not a road you can travel, it is your, our road. You don't have to travel it alone. And enjoy the simple things, like any reason to smile. Yesterday, drunk on a plane came on. Instead of oh that's terrible to be drunk or sing about it....I saw it for an escape. I actually lol and didn't feel bad about it.
Never stop talking to us one or all. You are needed here. Your story matters. Your vents are valued.
Keep up the fright.