pain and thoughts
 

I wish I would be able to separate between these two. I have a new pain in my right leg.I can't even describe it. it is somewhere deep inside my leg. also the numbness is even deeper.
and my primary doctor told me that these are regular and very common complains.

I don't take any medication yet. just B12 omega 3 and that's it.
I'm thinking of Lyrica or Cymbalta. but didn't make up my mind yet.

Everything was normal till 4.5 years ago.... and within one day - everything is changed.

Do you feel the same? how do you co-op with it? when, how long after onset - you felt the change, when did you accept the neuropathy?

have a good day

I'm still new at the neuropathy. However, having already been through cervical disectomy and fusion which disabled me nine years ago, I am slowly coming to grips with reality and trying to protect my mental health by not flailing out in all directions.

The first time around, the chronic pain and loss of my job sent me around the bend.

I wish I had something more constructive or positive to say; I just don't want you to feel ignored, as happens so often on message boards when someone needs to vent or just needs some human interaction.

These neurological conditions are insidious; so difficult to diagnose and treat. Test upon test, med upon med. Alternative medicine and nutrition. Somtimes physical therapy. It can wear a person down.

Gentle hugs and hope your day becomes brighter.

I found that coping and acceptance, go together.
Once you have understood that lifestyle changes and therapy
will be a part of your life, because this is a chronic disease with no cure yet you can go about the business of working towards it not having as much of an impact on your life. Accept the fact that it will be with you for quite a while, and deal with it in the best possible manner.
I found that whatever it takes - meds, supplements, exercise, etc.....whatever lessens the symptoms and lets you live as normal a life as possible.
I'm not saying give up.
I'm not saying don't fight.
I'm saying become as astute and as educated on the subject, keep up with trends and new meds, stay aware........and get on with your life.
don't let it lead your life. The adage "I've got PN....but PN doesn't have me" ....applies well here.

Nice..words to live by.

amit, it is difficult changing your life. And I am so sorry you are going through it alone. Friends and family want to understand the pain and exhaustion, but they can only sympathize - they can't empathize. Probably the hardest part is giving up the future you had planned for yourself. It was for me.

A book that really helped me is: "How to Survive the Loss of a Love", by Peter McWilliams, Harold Bloomfield and Melba Cosgrove.

It is not just about relationship love, it deals the loss of anything you love - job, friend, pet and even Health. It guides you through grief, and teaches that grief is not only ok, but necessary.

The best part is that it isn't written in long narratives, it combines narrative with prose and poetry. You will laugh and you will cry. And even if you aren't an avid reader, you will find the prose and poetry easy and meaningful reading.

Here is one of my favorite passages:



:hug:

Some days I curse a lot.:o Of course, no one hears me.

I make sure everyone hears me :hissyfit:

Perhaps that is a better idea!:D

I have been ill for a long time, about 18 years. I have had some problems that required surgery in-between all of this mess and thought that each time I had something fixed, it would banish this illness as well; that it was all somehow related.

I remember the sorrow I felt when the illness returned...

The doctors have found SFN, arthritis and dysautonomia, but no cause. They are working on it, but it is so frustrating and I am worried that they will not find my answer.

I am particularly low right now, but I guess I do have my highs some times.

What bothers me is the inability to work. I gracefully "retired" after over 20 years at a career that I loved, made me feel smart and kept me motivated. Unfortunately, it became impossible to do my job anymore. I feel like I am in a void right now - unproductive and ill.

I am just hoping for a turn of events. Every morning I wake up, I hope that this will be the day it happens - that I will feel healthy and energized... pipe dreams?

I suppose I am not yet coping, or have found any acceptance in this mess. It is not an easy thing and I wish there were more concrete answers.

Mere

To be utterly honest, Mere I feel just like you do.

Many days, especially lately, I want to sit in bed with the blanket over my head.

I guess that is not coping. It happens.

I am tired of having PN, and some one saying, 'Oh my feet fall asleep too'.

I am tired of saying I have Sjogren's and some one saying they have dry eyes too.

I am tired of telling people I have autonomic neuropathy and having them say, "What?"

None of it fits together in a neat little package....I just wish I could say I had a specific disease and have people understand what this feels like....truth be told, I don't know if any one cares. My husband as nice as he is, is burning out....

Yesterday, the nurse called with my ENA and said, 'Good news, your ENA is negative.' Well how dumb is that??? I kind of let her know that in an offhanded way. A negative ENA with highly positive ANA is not good news.

Yup, the blankie looks real good today. It looks even better on Mondays.

I empathize so much with Mere. I also was working in a job where I felt needed and useful and (most of the time) enjoyed myself. I was trying so hard to hold on - I had my hours cut to 4 per day in hopes I could continue. Unfortunately, I couldn't cut it.

What I also suggest is that you get psychological help if you can. I needed a lot of counseling to deal with the grief and loss. Even hospitalization at one point. There's a lot of anger and frustration which needs to come out in order to reach the acceptance stage, sometimes.