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.

Cannot truly cope with this.
 

I'm still in a lot of denial even after 10 years of PN. For a example, I am planning a trip to Paris in May with my two grown daughters. Instead of focusing on finding wheelchair friendly hotels with accessible baths, I keep looking @ pretty apartments none of which would be suitable. Reality reared its head when my daughter reminded me that I that I must stay in a room with a wheel-in shower. Period. End of discussion.

I do not want to let PN have me but denial is so easy to fall into. I'd like to read the book mentioned by plgerrard. Maybe it will help me accept this nasty condition and move on.

Mine also. We were married young - I was 19 and he was 21. He probably would not have married me had he known what was to come...

He is kind and gentle, but I know he is sick of dealing with it. I feel like major baggage.

Mere

No kidding Cyclelops, WTF. When people I know complain about minor ailments, I want to slap them. I especially dislike people comparing their afflictions to mine. They really have no freaking idea. I also dislike it that people feel obligated to talk to me about my health. Come on, there is more to me than "my health" and I am sure that they do not find the conversation especially stimulating.

I also dislike having to try and explain why I am not capable of holding a job any longer. I am sure it is a bit strange when people see a 47YO woman with a mortgage, husband and no children not working. Many times people probably think that I am lazy. Though I am far from that. I started working for money when I was old enough to babysit, cut grass and run errands. I then worked all through HS and college. My parents could not really afford to send me to college, so my husband and I paid for my night school tuition for many years.

Boy, this has really turned into a rant. :hissyfit:

Sorry about venting, guess i needed to...

Mere

Vent, Please - That's what we're here for
 

I realized I needed to "gracefully" retire from a 30-year career, after I screamed at someone to SHUT UP. I supervised subsidized housing properties, and when the residents were unhappy with site management, HUD policy, or life in general, they called me to complain. These were women who had never worked a day in their lives, and were required to comply with HUD policy or loose their subsidy. The sicker I got, the harder I found it to listen to their excuses and complaints.

I always made it a policy to let them "talk it all out" before I tried to respond. But, the whole time I was listening, all I kept thinking was they were more capable of holding down a job than I was. Yet, I kept putting in my 60 hours a week, just so their whiney little a@@es could live off my tax dollars.

I finally had it after an emergency hospitalization. I probably tried to return to work too quickly, or maybe I had finally just run out of patience, or maybe the meds made me cranky, or....

It really doesn't matter, because I found that I am finally relaxed and at peace. Friends used to ask me if the stress of the job contributed to the neuropathy. I always told them No. But, I have finally realized I was wrong.

So, who cares if "they" think you are lazy. You know better. Just tell them the pain feels like a sunburn rubbed with steel wool. They will never think you lazy again.

plgerrard, I am sorry to hear that you also had to "retire". It is tough. Stress probably has affected us all more than we know...

You are right about not caring what people think. I will have to think of the description you suggest, i.e., sunburn rubbed with steel wool. Now, that's a good one...

Mere

3 years for me now and gave up my business which netted me up to 25k for 3 days work running my own marketing seminar business for very large corporations but involved standing on my feet 14 hours per day for a very intense and stressful sales events. That stopped when shoes became my enemy. Just recently attended my mothers funeral on crutches and a bandaged leg with a flip flop on the other.Told them I fell down some stairs. That was a lie but better than turning up in shorts and sandals and trying to explain I have peripheral neuropathy to every single person there . you can see they are thinking "you look fine to me"
I love sailing so am about to purchase a yacht and sail around asia where I live. People say how can you do it when walking is tough?. well you dont walk much on a yacht. There is always a way to find something to do rather than lay in bed and let it wear you down mentally.

On a side note My neuropathy nearly went away about 12 months ago but came back with a vengeance, bugger!

I to had to give up a job I loved, I had worked at the same place for 10 years. I had something called a good work memory, I guess because it was my lively hood, if any one needed to know something they would come to me, I would remember something I had done when I first stated, we would do a job and I would say we have done this job before, everyone else would say we don't remember. I had spent the year before PN working out and losing over 25Kilos.
After giving up work I became depressed and bored, I really missed the work and my friends, so of course I over ate and because I could not exercise much I put most of it back on.
The cymbalta did work for me at the beginning but I feel that it is starting to lose it's effect now, I have spoken to my doctor about trying neurontin (it is cheaper here than lyrica) maybe taking cymbalta and neurontin together. If anyone has had success with these I would be interested to hear from you.
I guess we are all in the same boat, but it takes some time to realise that we are stuck with this and we have to make the most of it, do what we can when we can and trying to explain to someone something that no one has heard of is very difficult indeed, and when they say this hurts and that hurts just smile to yourself and say to yourself if you only knew.

Take care everyone,

Lesley:grouphug:

That's the right attitude.

Did you ever find your memory start to go? My screaming at someone was just the final straw. Another of the contributing factors to leaving my job was my memory. I had always had a memory that could recall events with near accuracy, but eventually it became noticable that my memory was shot.

A few of the people who worked for me realized this and tried to take advantage. They would quote me on things that I just knew I didn't say. Not because I actually remembered the event, but because it would have been out of character for me. I finally had to ask they send requests by email, so later my actual response was in writing. That solved the problem, but was just another adjustment everyone had to make to accommodate my failing health.

I tried the Cymbalta with Gabapentin for a couple of weeks, but went back to amitriptyline (Elavil) and Gabapentin. Cymbalta and amitriptyline are both antidepressants, but for some reason the Cymbalta made me much more tired. Your idea of combining meds is a good one. That is what finally worked for me. I'm not entirely pain free, but it is tolerable.

LOL, I texted my hubby yesterday and told him I had early Alzheimers....perhaps my brain is full of misbehaving lymphocytes....or unidentified antinuclear antibodies....or prions.

Maybe somethings are not meant to be remembered.:o

To ALL who need this.....help yourself. :hug::hug::hug::hug::hug::hug: There are more where these came from.:hug::hug::hug:

Sorry Guys...this thread just brought me to tears. I can understand what each of you has to say & exactly how you feel. I'm there too. My PN started one day out of the clear blue & that was 8 yrs. ago this last august. It progressed over the yrs. & these last 24 months have been the icing on the cake. I no longer say.."How can it get any worse?".

It too has ruined my dreams. I'm a chocolatier, been making candy on & off for 26 yrs.. To make a long story short I finally after all these yrs. have my dream commercial kitchen & have re-opened my business. Problem is now...I can't stand up anymore. We spent 1000's of dollars getting this thing built & filled with all my dream pieces of equipment & it all just sits there with me looking at it & crying.

We have a handful of accts. & I can barely handle that, ex-hubby has been making most of the product. But he does not make things like I do. When my PN moved into my hands I knew for sure I was almost over. I hand roll all of my bon bons & truffles.I spent most of the last 2 yrs. in bed. I can work on product lines, answer the phone & such but not much more.

So far my PN has been untreatable in the way of pain meds. Nothing.... after trying over 30 medications plus a series of epidurals has worked. SO the pain knocks your socks off continuously. I use to have flair ups from eating the wrong foods from the food allergies I have & instead giving those foods up I just kept eating them & sometimes I feel like I'm just killing myself w/ this gluten thing I have going on.

We all know about seeing different doctors....I been there with that too. Next thing on the agenda to try & help me w/ this pain is a pain pump inserted under the skin.....kind of scared me. So...I went home from the doctors & told him.....ok I'll go cold turkey....will try the holistic living, vitamins, diet & exercise route for a few months & lets see what happens.

I got depressed because I use to have just a bad week or so that the PN was unbearable, but then that changed to me experiencing more days like that. It got me down to having only 5 decent days out of the month, now that too has changed & I'm down the whole month. Been like this 3 months now.

I feel in trouble, serious trouble, hubby is a disabled vet. My biggest fear....our house is not paid for by a long shot. If something happens to him, he has no life insurance, cannot get it because he is on narcotics for pain & PTSD. I have visions of seeing myself walking down a road pushing a grocery cart that has everything I own in it & my 2 little dogs tied to the cart w/ a rope.

SO thats my motivation to try harder to do something here. Living w/ this crap everyday combined with the fear of what will become of me scares me to death. And yes it true sometimes the loved ones around us just burn out from this constant pain we have & how it makes us behave. This is surely a terrible way to have to live everyday.

I ordered the book from amazon....
 

Hope I'll get it soon

I think it is good to vent
 

from time to time and if not here? so - where?

It is and I think wthout NeuroTalk where would we be and I thank everyone for being here.

Lesley

I am sorry that you too had to give up your job and do certainly understand about the depression and boredom...

I have fibromyalgia as well as neuropathy, so I was prescribed Cymbalta and Lyrica but my body could not tolerate either drug. It made me narcoleptic. Somnolence is one thing, but I was falling asleep on my feet and when driving. I have started taking Neurontin (again) more recently and do seem to tolerate it fine in smaller dosages...

I hope that you feel better :winky:

Mere

I have started to get things together now, I am going to aqua aerobics now which I am enjoying, watching what I am eating, I just need to get the meds right, I think I will try the Neurontin (when my doctor will let me), he keeps telling me to wait to see the affects of the cymbalta but I don't think it is going do any more. Tramadol had me dozing off at the wheel when I first started taken it but that was after a long day a work standing all day, my drive home took 30-45mins. I keep busy now catching up on crime dramas, I have a recorder so I tape a lot of shows, also I spend a lot of time doing things on the computer. I am also glad I found neuro talk for all the help and advice.

Hope you feel better too Mere

Lesley

I am one who gets some relief from neurontin. Won't say it totally takes the pain away, but it does help. I am supposed to be on 600 tid, but have trouble tolerating it, so I take 300 every 2 - 3 hours.

It DOES seem to screw with my memory somewhat.

I am so sorry Muffy1219... I make jewelry and have a beautiful studio stocked with thousands of dollars of components...

My hands are still capable most of the time, but I am so damn fatigued that I barely get in there anymore. Just do not feel all so awe-inspired to create these days. It tends to rest very heavy on the mind. I tell family and people I know, yep, working on a new line. What a bunch of crap.

I wish you the best and hope that things improve for you.

dreams
 

After ritedment - I went back to my old hobby of patchworks. I have a lot of materials at home. Pray that I'll be able to fullfill all my dreams and wishes.
Just today, my husband noticed that I have some muscle lost in my legs.

Can I do something to slow the process?

Scared.....

I am doing aqua aerobics, you will be surprised what you can do in the water which you can not do out of it, I have been jumping up and down in the pool, I can not even squat out of the pool, so I am hoping it will start to show signs of helping my PN.

Lesley