Don't mean to sound cruel, but......
 

Is there anyone out there that would like to take your worse neuropathy pain and by magic make someone else experience that pain for five lousy minutes? That smug doctor? A significant other or family member who just doesn't "get it"? How about the person who wants to turn it into a competition and claims that there is no way your neuropathy can hurt more then their arthritis, bad back, headaches (or insert any other medical condition). What about the person who assumes that your pain is not really that bad because "you don't say much about it" They have no idea even when you have explained it to them that you sadly have adapted sometimes to being in pain and don't always talk about it.

People who have never had neuropathy need to to put a sock in it when they think things like, "It can't be that bad"...

Just venting.....:mad:

Hey, vent all you want!
 

This is the place to do it - mainly because it doesn't go in one ear and out the other, as it does trying to talk to the folks that don't 'get it'.
I can absolutely relate to you (us being up in the MIDDLE OF THE NIGHT because we can't sleep over this mess!!) :Soapbox:

My pain doc is VERY complacent in what he does. He's cocky, insensitive, .....unfortunately he's good at what he does....but he just wants to push these SCS's (spinal cord stimulator) and that's IT. As though they are a dime a dozen. GrrrrRRRR :mad:

I did the 5-day trial and we went back and forth :mf_argue:

Cocky Doc: WELL, Did it get rid of the pain??
Me: Well, it COVERED OVER the pain.
Cocky Doc: I asked you did it get RID of your PAIN?!
Me: It MASKED the pain!! The pain is STILL THERE
Cocky Doc: You are not answering my QUESTION
Me: The pain is ALWAYS THERE. The SCS only COVERS the pain. I turn the stim OFF and the pain is THERE...i turn the stim ON and the pain is being substituted with TINGLING.
It does NOT get RID of the PAIN. It only COVERS the pain.!
((((((GRRRRRR)))))) :deadhorsebeat:

Anyway :o I'm probably gonna get the SCS

But YOU BET i would LOVE for this man to feel this pain for one measly hour.

Totally get it.
My cousin was telling me she had an MRI of her neck and back because she has odd sensations in her face (pins and needles), and her arms and hands go numb due to nerve compression from the discs in the neck. She said this is the worst feeling in the world and nobody can imagine what she feels. No I guess I can't imagine what it would be like to have PN in only a few spots because I have bodywide neuropathy.:rolleyes:

In answer to you, Hope--
 

--of course. And maybe for ten minutes. :D

I am much meaner than most of you...I always say I want another to feel it for a day or 2...5 minutes will not teach them anything.:winky:

I do really like my doctors, and yes, there are times I wish they could feel what I feel. Every time I see my neuro, he says, "So, when do the headaches start, and when do they stop?" How many times do I have to say, "I go to sleep with it, I wake up with it, you tell me, WHEN DOES IT STOP, WHEN DOES IT START????" It doesn't take a rocket scientist to understand that entire sentence, does it? My PCP says, "You look so good, you are in such good shape you will live another 50 years!" And I say, "Feeling like this, thanks!" They don't get it, and for many of us, they can't see it, so therefore it may not exist.

Same for my celiac disease. Just once, I would like every person who asks me if I can eat just one bagel, knowing I can't ever have it, just once I want them to deal with a gluten reaction and know how it feels.

On those days when you are walking, and your foot doesn't lift, they look at you and smile, like...oops, whacha doin there! Duh, nothing funny about it.

Yet we deal, everyday, every week, every month...we are the strong ones, most of the jokers could never walk a mile in our shoes!:hug:

You know those suits they strap on expectant fathers to give them some small sense of what it's like to be pregnant, well I wish there were similiar suits for medical students.

Yes, this is what it feels like to have PN at 3am. This is an epileptic seizure. There, now try and think with a little PCS. How about spending your big weekend with Parkinson's or MS?

Maybe that would keep some of them from morphing into such insensative jerks.:mad:

Cheers

Hello,
If all the world leaders and doctors suffered from this crap, there would be and end to war and more money and genius in solving many of the existing medical conditions that plague this planet.

some tricks to look sick when you indeed are feeling terrible:

Don't dress up for the doctor. Don't put make up on if you are female. Making yourself look wonderful undercuts your believability. If you have to work, just cover the bases, nothing fancy.

Limp some now and then. I find a groan, huff or puff placed properly and not overused, very effective, especially in stores.
Move slowly, and carefully...to avoid trips and falls.

Have more bad hair days than usual. Cover hair with hats, caps, scarves.

If you look in pain, people often believe it...and you don't have to remind them. A well placed groan, in a store is very effective for me!

Yeah, I've wished that too. Maybe not the people closest to me because they've mostly been pretty good. And with them, I try to remember to mention it if I'm having a relatively good day in addition to saying when it's really bad. My partner has polymyalgia and I appreciate it when she tells me she's feeling a little better.

But doctors--%&*$ yes! And I would never tell any of them I felt better unless they were on the verge of curing me.

I'm with you, MrsD.
I wouldn't wish this pain on anyone else.
But I'm a pretty convincing actor when need arises.
Look in the mirror and create a face that says what you want to say non-verbally.
Practice it in the bathroom mirror, over and over,
until you can put 'the face' on-anytime you wish.
Then go out and use it, along with a sigh, or a slight moan or groan-don't overdo it,
less is more.
Example:
I was trying to rush thru the arport in NY, to make a connecting flight from NY to home. My prevoius flight had been 1-1/2 hours late and I had expected a 2 hr layover to make the connecting flight. That left us with less than 1/2 hour from the time we de-planed until we boarded. :(

The terminal was about 1 mile away , on the complete other side of the airport and no moving walkways or escalators were working and a baggage push-cart was not in sight.
Rushing thru the terminal was taking its toll on me and I just
decided to stop. :mad:

I was carrying a heavy carry-on bag and had a 35 lb backpack on my back - I sat on a stair & just told everyone else to go on ahead, and tell them at the boarding gate, I was bringing up the rear.

At that point my son, who is 6'3", built like a linebacker, and 23 years old, (& is clueless some times,:eek:) offered to carry my bag . :winky:
Not until I complained did he realize that maybe Dad needed some help this time. :rolleyes:

I probably coulda made it, but it was bad enough when I got to the boarding gate, told them to wait just 2 minutes while I ducked into the men's room to pee-and they yelled at me that I couldn't - :confused:
"do it on the plane, we're ready to take off."
We then had to carry bags across the tarmac and board by climbing up the steps, to the commuter flight. :mad:
By the time I got into my seat, I was 'done-in'.
I really needed that help carrying my bags, and if I hadn't just stopped abruptly, & sat down- no one woulda realized it.

I guess I fall in the I wouldn't wish this on my worst enemy category. I'm afraid if I did, I may burn in hell.

I have my days tho. I must look worse or something, because in general, people have been over-attentive. That has its downside too. I bearly even open a car door for myself lately, and I always have some one hovering over me when I walk on the snow and ice.....like, that helps, we would both go down!

My docs have been really good lately too....so, I can't complain, but, I know before things got this bad, at times, I did wish this on others.

MrsD has a point, in not looking too good for the docs, and I tend to do that. When they start poking and proding lately, I let them know what hurts, not buck up, like I used to. I have learned to tell them my symptoms, not my theory of what I have.

I think the point is, that SOME people can be really unempathetic and cold. I think that some people are just like that. Some people are just naturally more narcisstic. It is hard, but, try not to take it personally. I know it is hard. Also, make your doc appointments as early in the day as possible. You get worse care in the afternoon. Docs and nurses are people and they get tired as the day wears on. They are pressured to jam ever growing numbers of patients into less time.

I look at it this way, we are all born with certain strengths and weakness, and some people are born with more empathy, others, not so much. Just like physical strength, some have it, some don't. I won't ever be an astrophysicist either, but, some of them, may not have been good nurses, teachers or social workers. All people have different characteristics.

Also, you can't convince those people otherwise, so don't waste your breath.

You can't convince any one of anything, save your energy for where it does the most good. You will know where that is.

I told my hubbie to remain healthy because he might have to push my wheelchair someday, he promptly got rheumatoid!
My primary doc told my mom I am in unbelieveable pain everyday on her last visit, my mom no longer questions that I look okay so what do I have?
As a last resort buy the book "But you look okay", if the person is worth the money.
If I leave the house without makeup, well I am pretty sure that would convince anyone...............its a habit, but I'll keep it in mind!

PLEASE NOTE: I've thanked one and all for their comments?
 

Those who aren't receptive will have their turn...trust me! I do believe that what goes around will get back to those who bite you! Some I've known who were cruel? I'd had back issues? THEY Got back issues, severe ones...when they'd laughed at my own problems. Same with family deaths and other issues, they got it back on their own with INTEREST! Honestly, now, I don't care about others outside my immediate circles as they just don't care and are not willing to learn to care!
For the medical community tho? We really aren't able to complain constructively to any 'medical association' or the like about insensitivity, lax diagnostic ability nor actually doing harm! Nor can we construtively complement med professionals who DO CARE and DO work for us! This part is truly criminal in my book! There have been times I'd like to go to the first neuro's office and start swinging something heftier than my cane all thru the offices! In essence we are as patients powerless about critising the medical professionals who treat us, and it's worse if you are in a smaller metro area or regional area to boot! Less to choose from, less to seek help from and further to go!
As for 'putting on the face'? I don't have to any more! I've aged over 20 years in less than 10! I do not LIKE IT! And as for going out? I do try and put on make-up? But I really don't care if it's perfect! Because I AM NOT!
I DO WISH Docs could FEEL what we feel for one day, better FIVE DAYS! That'd be the 'appetizer'? You all know what I mean by that! HUGS to all! -j

I despise the "competition" of "I must feel worse than you do because I have (fill it in)."

Why do they do that, for attention? For crying out loud, I don't even want to mention my illness let alone be challenged about it.

I really needed that help carrying my bags, and if I hadn't just stopped abruptly, & sat down- no one woulda realized it.[/QUOTE]

HI, thanks for sharing the reality of invisible disabilities, especially neuropathy pain. My PD friend usually exclaims that I should wear a sign saying "NOT as good as I look". We laugh, because her tremors are worse, so people eventually do pick up on this. I go for the no pride method, asking for a wheelchair in advance of any trip, or bring my cane. Works wonders in the drug store.

I agree with Mrs D. the need to dress depressingly to allow the doctors to at least see a picture of something not quite normal, is a good strategy. Folks just do not take our words at face value. Whether friends or medical professionals. It is always a surprise to me how heartless and self-absorbed the general population can be. I have had to develop a sort of walk the talk attitude in public, and the opposite in private with friends. Friends have a tougher time handling my health challenges than I do. Their fears are greater than mine. I wish you luck in getting some kind of system to portray the right level of dysfunction in the right situation. But first and foremost, avoid identifying with this part. It is supposed to be the theater of life playing itself out, rather than a person who forgets she is in the theater of life. I choose to believe I am completely well underneath my issues. It helps to pretend this is true, when I am alone, at least most of the time. Best Wishes - TT

Can so relate!
 

As I work day in and day out, smile at all my coworkers, get over animated with the little kiddies at our school ... I am dying on the inside from all of the pain. Every movement makes me ache, my body burning from head to toe, yet there is no one there that would ever know anything is going on. I can't blame people for not knowing, since I keep putting on a pretty good act, but part of me doesn't want the entire world pitying me every time they see me! The other part of me just wishes that these people could somehow understand what I'm going through, although I would never wish this illness on my worst enemy!

Right now I'm trying to work out flying out to Minnesota for Mayo Clinic's pain rehab program. I'm really wondering what all my coworkers will think when a seemingly normal looking/feeling individual (at least in their eyes) leaves work for 3 weeks for medical reasons.

It's nice to know that there are wonderful people like all of you who could relate and really know how a person with this illness feels. I'm just so sorry that you have to experience this.

It's not a 'competition' at all?
 

It's a VENTING session! And we all need THAT in a safe place like here.
As I've said, I no longer care about how others perceive my pain. It shows on my face, how I move and all the extra gray hairs I've gotten that I really didn't need! The lines in my face? Can't do much about. The way I walk I can do some things about. The gray hairs? Other than use harsh chemicals [which I seem to be super-sensitive' to now?] I can't do too much. Sigh?
IF someone 'doesn't "get" it?' They aren't gonna "get" it any time soon. Even in trying to be a help to others in pain? They really cannot always grasp that YOU GET IT!
We could all be like this :paperbag:, or this::Wheel: But...we choose not to be so. I'd much rather have my :hissyfit:, get it out and over with: :OuttaHere:
We must share, even in the worst of pain? Most here don't try to make it a 'my pain is worse than yours'? Kind of event. Mainly because we don't really KNOW of your pain and experiences. But we can share about our pain, what we've learned and that there can be hope.
Hugs for now and :hug:'s - j

As long as we remember,'j'
that this is a public 'safe place' and if anyone who posts here,
'googles' their i.d. name - these posts will pop up.
And, sorry to say, will be in the 'web' for just about forever!

So much for privacy.

I have often wondered if insurance companies employ some narc to read this stuff and make sense of all the medical history on here to figure out who is who....

I was amazed to find out my husband's employer has people reading emails. Some dork sits in a dark room and reads emails and submits what they feel to be problems to the grand poobah to dole out lashings. And those lashings will continue until morale improves. Sheesh.

That was when we bought phones with internet! Our own phones and our own internet, with private email and messaging.

The admin could make these posts not public. Other forums have that feature. I don't know how much private information is made public or available for purchase on here. I suppose I should have read the reams of privacy policy before I clicked on the 'Accept' or 'I agree'. Kinda like a credit card....don't read the fine print and oh, oh.

a reminder:

http://neurotalk.psychcentral.com/sh...hlight=privacy

I didn't mean to sound cruel, I just want others to feel what it's like, not have it. You know, walk a mile in my shoes, then tell me how "I" feel!

We all have our days, and we all need our days...
 

My mom used to say, a good cry is good for you! I remember my mom would tell me that having a good cry is good for your system. It feels good to come here and let it out.
Many of us were also taught that being a cry baby or a whiner is not acceptable. Being weak or complaining to others is not attractive, no one wants to hear about our problems day in and day out.
Frankly, I get tired of hearing myself complain about my problems day in and day out! We get tired of being in pain day in and day out!!!! Can you imagine how our family must feel trying to remember it all the time? Trying to adjust their lives around us all the time? It must be hard to make constant exceptions for us. I try to remember where their heads are at the time.
My kids are young... in their early 20's, and like Bob's son, have to be reminded that I'm sick... that my feet hurt, that I need extra rest... they just plain forget! Their brains don't think outside their own little gravitational pull! At work, I am afraid to complain, afraid that I will be passed over for the promotion or put on the lay off list because I'm not as strong or as fast as the others. I've been laid off because I'm not as productive as others.

We do have an invisible disease... one that we can take out or put away at our convenience. One that others can't see unless we want them to. It works both ways. We can choose to hide our disease, or we can choose to use it.

Here is my biggest fear... I don't want people to think I just pull it out when it's convenient! I don't want people to think I just "Play the disabled card" when I want to. I really do save it for when I'm really tired and just can't take the pain any more! I try not to burden those around me as much as possible... but when it gets too hard, then I ask for help... but the problem is, do they think I'm "using my disability card" to get out of work?

Do any of you feel that way too?

Lots of complex aspects here?
 

First is PRIVACY. Well know that anything posted HERE IS public? Thus if the insurance narcs want to track you down they mite... However, how and when you use any 'public' names? cand and might confuse them. Different names for different issues? or something of that ilk.
The only thing I can suggest is that one always be totally and completely CONSISTENT in phrasing vis-a-vis any and all on-line inquiries? tho Rephrasing issues on other sites so that no one key word leads?
Back to the key issue tho? Privacy is that we are a sort of 'unique' group? And I truly wish more docs would lurk. I know of at least one case where a doc DID lurk and realise that he could help a person in his area! Whoo hoo! To us all for our venting! Sometimes some GOOD DOCS DO READ ABOUT US -I'd Like to hope that's to 'keep in touch'? But I cannot know. That we might establish a sort of communication network w/ Docs from HERE is a sort of dream of mine? Maybe not now, but in the future?
Most importantly one where us who have neuro issues don't have to say either: Don't panic or Got to an ER NOW? Since we're not docs? Just victims.
My heart is with all here and I wish all well! You are fighters! Keep fighting! WHAT IS TO LOSE by the FIGHTING? Much more is to gain! :hug::hug::hug:'s j

"Here is my biggest fear... I don't want people to think I just pull it out when it's convenient! I don't want people to think I just "Play the disabled card" when I want to. I really do save it for when I'm really tired and just can't take the pain any more! I try not to burden those around me as much as possible... but when it gets too hard, then I ask for help... but the problem is, do they think I'm "using my disability card" to get out of work? "

I hear you, Terri.

Like a lot of people here, I have days that are better than others. On a good day, I can seem pretty with it. On a bad day, I'm a confused, stuttering, pain-ridden disaster. Most days, I'm somewhere in the middle of that. I think this lack of consistency can make people think you're "putting it on."

Like you, I also don't say anything unless I feel desperately ill. Often that's when I'm being pushed past my energy limit (having to go to hubby's boring, but too loud, office party) or being stressed (a famiy disagreement). Consequently, my pleas to remove myself from the situation may seem convenient.

Still, those closest to us should know better and it breaks my heart when we're accused of exaggerating by them. Don't we get enough of that from doctors? If my family and friends had any idea what an effort it takes for me just to get through the day, let alone with an artificial smile on my face. It's the times when I'm not grimacing or moaning that I'm faking. God, I wake up every morning wondering if I can keep pulling it off...

Cheers

My worse symptom is headaches, and to be honest, it is very difficult to hide a bad headache, usually your eyes say it all.:(Otherwise, I rarely mention my neuropathy, unless something happens out of my control, like balance, and such. I work in an office were nearly everyone is over 50 now, so everyone has aches and pains all the time, works for us all!:p

My neuro found me here in Neurotalk, realizing I had wanted an appt with him and had to settle for someone else. He emailed the site, asking if they would email me and give me his email addy. I was very impressed, to say the least. He is a very busy doctor, often times taking 6 months to get an appt with him, yet, that first time, I was seen in less than 2 months, and he has been my doctor since then. He does read here, which I think is wonderful. This is probably the best place for a doctor to actually hear and understand what we all go through.

Thank you Dr. Gudesplatt.:hug:

I can really relate to this,. I try to focus on the people in my life who do support and are understanding but it is still hard to accept the ones who are clueless. I developed this young at 28 so people see me as young and should be able to do. I'm very lucky to have a mom who has supported me through thick and thin. My grandfather on the other hand blames me for not getting better and for getting this condition. His gf yelled at me for not going to yoga. I said I can't get on the floor she is like well you just don't want to get better. What an idiot. That is why I go to so many docs and put myself through treatments. As for the docs I think some regardless of what you look like they would not care. It is hard to not give up in finding the right care. Truly I went to so many docs and many opinions to have met so many insensitive and clueless docs. I went to the best hospitals to be let down. Thank goodness for my mom who pushed me to keep going cause I finally found a random doc but who ended up being the best in the bunch and actually listened and spent time. Also I am thankful for the boards and people I have met. I can still remember coming to this board at the start feeling so scared and clueless and how supported and I felt by people and how much informtive direction I was given. Many better thoughts for all

Yes . . . everyone who proposes that they, or someone they know, has found the cure! I am sick to death of hearing about this cure or that for my nerve pain, my Crohn's, etc. It is as if they don't quite believe that I am and have tried EVERYTHING available to me.

And yes, ten minutes for those who propose that I can have a full and active life by ignoring the pain! Fifteen for those who claim that I brought this about by bad lifestyle choices.

Whew! Now I feel a little better . . . :winky:

Lefthanded you are so right about people suggesting treatments. I had a person in my life say I should do a treatment and then in the next sentence say wait what do you have? Or when I say I have a condition people respond with someone they know has something or they do. Sorry for my rant this post hit home with things I am facing right now.