[amit]

with you my feeling of loneliness. When I "complain" or just telling my friends about my symptoms, they try to calm me down and say that almost everyone has pains... Also, they, in trying to be nice, tell me to take a vacation and maybe this can help me.
I wish it would help - but as we all know - sensory neuropathy - is "unpleasent sansations" all the time.
I hope - that you understand me, at least!!!!

And by the way - lately I have some progresstion - I think. The feeling of numbness is deeper. If 2 weeks ago - the numbness was only 2 mm deep, now I have the feeling of 5 cm deep. and the all legs, more in the right one.
Who else with SFSN feel the same?

Thanks for being there for me...

[dmouse]

I can relate to the feeling "alone". I love the "did you take something?" or "maybe a nap will help?" and the best is when people compare - in an "attempt" to make you feel like you're not alone! As if their stubbed toe compares to neuropathy!

I'm sure we all go through it, so really, you are not alone!

D.

[mrsD]

I don't tell others (besides my family) about my pain or "issues".

Basically I don't think other people CARE.

The bottom line is you don't NEED to have other people's understanding. Others are all caught up with their own problems, as a rule.

I politely decline invitations that I cannot manage. I don't give reasons.

[jannaw]

I know that no one can feel someone else's pain, that's why unless you have a cast on your arm, stitches in your face it's harder for people to feel sympathy. It's difficult for my husband to understand, he knows though when I flex my feet in the recliner or make a sudden run for the bathtub and ice cold water that I am having a bad day.
I've been very reclusive since I left work in November and it has been so healing for me to start a new less stressful routine in my life. I hid it from all but my very closest co-worker so they were all shocked when I left suddenly. I miss some of them but I am sure they really don't miss me as much.....they all have busy lifes.. Come here and express yourself, there are so many good people in our boat and we will listen and know.....
On a good note, today I was approved for long term disability so I don't have to freak out about finances.
Hang in there, you aren't alone...

[dahlek]

it's simply beyond their realm of experiences. Mrs D is right, they don't really care.
My own dear DH didn't get it until two years later he started to get diabetic PN...and actually TOOK CARE OF IT! He's griped some about it, but, at the same time he'd seen me in the Hospital ER with a full fledged out and out onset that kept me there for two days. Then I went home...
Trying to cope alone, when I could barely walk, and the meds kept me sleeping for 18 hours a day... I got by it all and finally after a year got a good and proper diagnosis...then some treatment. No cures, but things that help me 'get by'.
I made a vow, point of trying to get up and dressed each day [tho at times it would take me a half hour?] and GO OUT! Of course I would get home and sleep for 2 hours to regroup but that's OK. I asked for and got PT to help me re-learn how to do the basic things such as walking correctly and also not damage myself in the process!
It IS LONELY. Friends are expecting you to be well, your old you? You aren't, I dunno about you, but when I go to any event, I'm tired already and want to go home and nap. I phone my friends and when they ask how I am? I always reply: Holding my own. End of that subject!
Being sick can be a very isolating experience! Do take a peek at the chronic pain forum here and maybe some other sites as well.... We are just a small portion of those in pain. We are in a big community of smart people who manage to keep a sense of humor inspite of all that's going on! We even overcome lots of obstacles! Really? I'm waiting to hear of one of us winning a BIG lottery! Soon please? Good news is always welcome!
JANNAW? Congratulations! That must be a BIG burden off of your shoulders! Yeah! I would try to do a jig? But I'd probably fall over and break something, but I'm doing it in my mind.
IF your pains, numbness is progressing? Talk to your doc...if that gets no real response? Get another opinion, tho tactfully... My line was that neuro#1 and I really weren't communicating well. [Actually he'd decided nothing could be done, and thus only did the 'basic' testings....WRONG!] You need someone to listen to you.
Gotta ask tho? HOW do you know the numbness was 2mm deep and now 5cm deep? Tests or what? Just curious....
Hugs and hope and relief soon! 's - j

[Vowel Lady]

This is such a good topic. Over the years when I have had chronic pain, I have struggled much with this issue. In addition, we also have a special needs child and that has caused various personal issues.

Who do you tell? How do you explain away certain behaviors?

I guess what I have done is limit who I tell what to. I really don't open up to many people. Generally, I think what Mrs. D has said has also been my experience.

I think people tend to be preoccupied with their own issues. On top of that, many might struggle to really comprehend a pain issue if that has not been their own experience.

So, I pick and chose who I might open up to and even then, I might chose my words very carefully....limiting the full extent of the problem. I also think it is best to keep it short and sweet.

It's kind of a weird "dance" of sorts. I do NOT think a person should feel ashamed of their pain or deny it to anyone. Feeling embarassed or like some sort of second class citizen or like you (we've) been punished by pain and now to hide it from the world, is psychologically damaging.

I just think it might be wise to pick and chose who you might open up to and even then to lreasonably limit discussion....which actually has a variety of benefits...since I believe "what we think about expands."

Hopefully, there are one or two people in each of our lives that we can fully open up to.

Also remember, if you do share with another, you should be willing to be there for them when they have a need to open up about their personal concerns.

[Ron9]

I don’t even have anyone to talk to about it.

I have two grown step-daughters - one of them is a nurse now (BA in nursing) but ..... while she loves me and I am “dad” (even if her mom fluttered off after 17 years) .... she really can’t help. So I try not to go on about it too much.

I’ve worked from a home office for like 20 years (no work anymore due to all the outsourcing) so - no office chat.

Anyway - I guess it is best to - just keep going and try to .... well almost ignore it if we can.

After I found out all I could (that was five years ago when it came on) - I’ve tried to ignore it.

Recently I noticed my toes on my right foot ..... went crazy - studied that (hammertoe / clawtoe) - got some gel helpers and started on toe/foot related exercises.

I think I have helped (am helping) the latest problem some but .......

I don’t see any fixes for this stuff (PN or crazy toes) ...... all we can do is just keep going.

[amit]

[QUOTE=
Gotta ask tho? HOW do you know the numbness was 2mm deep and now 5cm deep? Tests or what? Just curious....
Hugs and hope and relief soon! 's - j[/QUOTE]

this is just the feeling I have.

[darlindeb25]

Tis true, we all are preoccupied with our own lives, even us. Yet, just as I do, I am sure all of you can truly understand another who is in pain. At least they can speak with us and receive the pat on the back that they need.

I had a friend last night with crohn's telling me how much she wants to have gastric bypass done, says she is sick all the time anyways, why be fat and sick, instead of skinny and sick. So many horror stories out there about bad luck with gastric bypass. In my mind, why add more possible problems to her life. Yet, I do not live in her shoes, and maybe she feels this will make it all easier to deal with. To each their own.

I deal with headaches every day of my life, every hour it seems. I can't remember what it's like to not have a headache. I go on, I can't dwell on it, I have to work to support myself. There are certainly days I would rather just lay in the dark, away from everyone...I know they truly do not understand. The entire front end of our office is windows...on bad, bad days, I can hardly stand to walk through the display floor to the lab, the bright sunshine is more than I can bare, yet they do not understand, occasionally, it would be nice if they would close the blinds just a tad, so the light isn't so bright. Yet, they are not suffering the pain, and they much prefer the bright sun. To be honest, I hope they never have to deal with this pain.

So many times, I will get up from my desk and have this horrible hitch in my left hip, which yes, occasionally brings a moan from me..."What's wrong, you bump the desk?" I so much want to say, "No you idiot, I have neuropathy", but I would never do that. Yesterday, I was talking to one about Celestial Seasonings listing the gluten status on their tea boxes, and another says, "Isn't there a song about that?", and starts making up a song about gluten free teas and such. I just looked at her and said, "One day it may be you, it can trigger at any time in your life." She says, "I wasn't being mean, just teasing." Well, sometimes we don't feel like being teased, this is important stuff to us.

Just know, we are the strong ones...those others would crumble trying to deal with what we do everyday, day in and day out.

Continue being strong!