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#1 | |||
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Member
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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..... ![]() |
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"Thanks for this!" says: |
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#2 | |||
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Grand Magnate
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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!!) ![]() 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 ![]() I did the 5-day trial and we went back and forth ![]() 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)))))) ![]() Anyway ![]() But YOU BET i would LOVE for this man to feel this pain for one measly hour. |
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"Thanks for this!" says: | dahlek (01-15-2010) |
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#3 | |||
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Quote:
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. ![]() |
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"Thanks for this!" says: | dahlek (01-15-2010) |
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#4 | ||
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Magnate
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--of course. And maybe for ten minutes.
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"Thanks for this!" says: | dahlek (01-15-2010) |
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#5 | |||
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Member
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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.
![]() 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! ![]()
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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"Thanks for this!" says: |
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#6 | |||
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Magnate
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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. ![]() Cheers |
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"Thanks for this!" says: | dahlek (01-15-2010) |
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#7 | ||
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Member
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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. |
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"Thanks for this!" says: | BonDon (01-17-2010), dahlek (01-15-2010), Hockey (01-15-2010), jannaw (01-15-2010), SeamsLikeStitches (01-18-2010), tinglytoes (01-16-2010) |
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#8 | |||
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Wisest Elder Ever
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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!
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | dahlek (01-15-2010), Hockey (01-15-2010), Kitt (01-15-2010), Rrae (01-15-2010), tinglytoes (01-16-2010) |
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