No One Understands the Pain
 

The neuropathy is so very painful, yet there are so few who even believe the pain is real, much less understand the extent of it! Both my sister and I have severe neuropathy. I am only 43 years old and feel completely debilitated most days. She is 46 and is also in horrible shape. Members of our own family try to convince us it must be in our head...the pain can't be that bad...surely there is something you can do to make it go away...surely it can't occur all the time, etc.

I can say this here. There are days I do not want to live anymore. I am never going to do anything to harm myself...but I am so depressed that this is what my life has become, a never ending cycle of pain. I work full time and actual pain meds are not an option for me. My sister takes as many as she can get :) but in truth, she is still in such significant pain.

How do you guys get people to understand this is NOT in your head?

HI Belinda and welcome!
Sorry to hear you and your sister are in so much pain. Neuropathy is such a rotten thing to have!
My sister is the one who doesn't understand how much pain I am in and why I take so many medications. It's very depressing when people don't understand or even want to try to understand. I have actually given up trying to make her understand. I figure it's her loss. Some people will just never get it and I don't think anything we can say will change their closed minds.
I'm glad you're here. Everyone here understands and they are all great people! It's like a family here who cares about everyone else.

Hi Belinda
 

I am sorry to hear about you and your sister. I have neuropathy with some autonomic involvment. It is painful at times,and the pain is very difficult to describe.

I really have given up on convincing people that it's not in my head. Whoever understands, "Great and thank you"! If they don't understand or act like I am imagining this illness, "well I make no apologies to them, and frankly I don't care". I retain my energy to try to get better and heal.

My mum seemsto understand, and she appears to be the only one in my family,and that's enough for me.

It's rare that both you and your sister have severe PN. What sort of PN do you have,and how long have the pair of you had it?

Have you seen a neurologist?

Welcome to the Group of Us
 

Hi Belinda, the great group here will be able to better help you/offer suggestions after you tell us more about yourself. What kinds of tests have you had done, kinds of doctors you have seen, even though you work, why pain relief is not an option, what type of vitamins/minerals do you take, and anything else you care to share. Read the stickys at the top of the page that contain information that is very useful.

Also, stress can add to the pain, so the less you can stop worrying about who "doesn't get it," the better it will help you. There will be more people along that are much more knowledgeable than I am. I only have PN in my feet and it has not seemed to progress further, but it can still very painful!

:welcome_sign:

Hi Belinda:

Welcome to our little corner of the world. If you are looking for people who understand about the pain of neuropathy, you have come to the right place.

In answer to your question about getting people to understand that it is not in your head, well, unfortunately it is not easy. In many cases people have no clue. We have talked about this on the forum recently. It is so frustrating, because many of us look normal, but are in severe pain. I guess if you look terrible, then people think something must be wrong...

My husband is good about understanding and I have a friend here who has the same thing, but I don't think her pain level is anywhere near mine.

So, come and visit here and if you like, vent your frustrations and upsets and know that there are people here who know exactly what you are talking about or describing... You may even get some ideas that might help you with your pain.

Nice to have you here.
Cathie

Belinda, I talk about my pain as little as possible, to as few people as possible. Occasionally, though, there are people who don't understand why I do not do everything that I didn't used to, or can't do what they want me to. So it is a little problematical, but I just try to avoid getting myself in a difficult situation. With my family, I try not to discuss my pain, but I will say, "I'm sorry, I'm not able to do that." They never learn, so I just have to refuse a lot, politely. Once I do that, they seem to go along with it.

Hi Belinda and welcome to the forum,
Unfortunately some people can't understand how can you be possibly be in pain if your skin looks so nice and pink and healthy.
As you would know PN is a very deceiving condition to the eye, even to the medical profession who have been taught about PN in their schooling, i don't think i would be alone here if i said i have had even doctors give me that look or impression, like they think its all in my head, its unreal, my own GP wrote once that " this man has a very rare nerve disease " RARE :eek: there are millions of people with it, world wide.

Even though its hard not to get upset, its best not to worry if people don't understand because there are a lot of people that just couldn't possibly understand it unless they got it themselves, emotional upset can trigger worsening of symptoms, so its just not worth worrying about at all.

You will find great bunch of people here that are very knowledgeable and very caring and they truly do understand.

all the best
Brian :)

In response to the question, my sister and I have neuropathy as the result of diabetes. The only thing we can figure out, is that while our entire family has diabetes, only three of us (to incl an older brother) have neuropathy. Believe it or not, we are also the only three who SMOKE??? Any thoughts on this?

Strangely enough, it was sudden onset for both she and I and occurred less than a year ago. Prior to that I was a non-stop, professional, go-getter...sometimes never even sitting down before 10 or 11 at night. Work clean cook run errands, that was me! Now I'm lucky to make it thru my work day.

I am forced to ride the motorized carts/chairs when shopping. Get strange looks like what could I possibly be thinking (they probably think Im just lazy)...but I do not care. I even have family that asks if I am embarrassed to be riding "those things" and don't I have to be "handicapped" to use them?

I know people get tired of hearing about my pain and I really try to limit who I talk to about it...but on the other hand its depressing to act as if all is ok when I really want to be screaming I hurt so bad. Also choose not to let anyone at work know, and that makes it extremely difficult. I can NEVER miss work as I am a paralegal in a small firm and my presence is required every day.

I am almost ready to throw in the towel, let my home go as well as all other financial responsibility, and apply for SS disability. I just refuse, however, to let this kill me at 43 YEARS OLD.

On a humorous note, can you imagine meeting a new man and saying to him, hold on, I have to rub 20 creams on, I sleep with a special blankie that doesnt irritate my skin....i have a special foot pillow that helps to relieve pain, the ceiling fan cant be on because the circulating air kills me, you cant run the ac in the car even if you are collapsing from the Texas heat because it makes me cold which makes the pain excruciating! I foresee a single life but can deal with it!

I've never had to convince anyone of the pain. Thankfully. But it's like depression: People want you to just snap out of it and it's far from that simple.

I'm curious to know what makes them think it's all simply in your head? Is it that thinking that way they don't have to deal with the realities of your pain? They're in denial. We certainly are not. Have you ever just asked them, "What makes you think this pain isn't real? That it's just in my head?" I'd be most curious to hear what they have to say.

My family has been wonderful about this. Of course I've always been medically minded. Nursing school and just a general interest and knowledge of medicine in general. So maybe that's why they took it in stride the way they have.

Barbara

Oh, I know they know it really can't be in my head, but I think they just want it to go away...and then there are days where I guess they just don't want to deal with the reality of it and its easier to just try to pretend it doesn't exist.

My family loves me. The know that prior to this I had probably never taken as much as 5 tylenol in my entire life. Had a 10.5 lb baby without any medication. And NOW...Im popping as much neurontin as I can stand, take OTC PM medication to sleep (which I would have NEVER done), taking 4 ibuprofen at a time....I have such an aversion to meds that they are in shock, but what they dont know is this: If I were not so afraid of becoming a drug addict I would literally take ANYTHING to dull the pain for just a few hours!

In reality, I think they are just scared for me and don't know what to say or do....so they try to make me be "normal" again!