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Thread: We're the orphans even here at CareCure

  1. #41
    Senior Member alan's Avatar
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    I can no longer type enough to describe all the sensations, even if I had the words to do it accurately, and I don't.

    All I know is that I get worse seemingly every day, including losing the normal sensation I did have below my neck above my nipples and shoulder blades and the use of my arms, I'm sick of having to force food, and if there was any mercy in the world, I would fall asleep and not wake up. I've lost hope.
    Alan

    Proofread carefully to see if you any words out.

  2. #42
    Bill, DD,Garyis,Gjnl.......we must all stick together......I don't care who has what.....this 24/7 pain sucks!

    Those of us who are "at home" here in the Pain forum forget that there are others out there that need....and want to learn. Most of the regulars are sci. I think Alan has other problems.......

    Mine are cervical...c 4-5-6 and lumbar l 4-5-s-1, and then for me you also have to throw in the possibility of CMT (Charcot-Marie Tooth). They said it was'nt worth the expensive testing to verify something that would'nt change treatment..... Chronic, severe pain from Peripheral Neuropathy Disease and Central Pain......Nerve damage and is progressive... Gives you a hell of a lot to look forward to!

    There is no medication for this.....You get meds for depression, seizure meds, muscle relaxants, and pain killers. Most of us have to take a combo cocktail. Sleep is a big problem. Or lack of. For a lot, even the pain pills don't "touch" the central pain.

    As we get older, and from injuries, we have to also start adding arthritis into the mix. Finding a doctor willing/able to treat us is sometimes an on going search. So many give up when their choice of meds don't work. I've gone through a lot of doctors and am now at a Pain Clinic, where you are treated polite enough, but still feel like you're in a drug rehab center. This is thanks to all who have abused the system. I have a two page contract, to be renewed yearly, that I must adhere to. I use the same pharmacy, subject to drug testing, have to go monthly for meds and fill out paperwork.......you get the idea. And all of this for about sixty to seventy-five percent of my life back.....on a good day. Most of my nights are worse. Heaven help me when the weather changes!

    DD your descriptions were pretty good. I'm affected from the waist down and my hands and arms. The acid affect is the worst in my feet, legs, toosh, and hands. I also have a vice like feeling. Electrical shocks. I can't stand to have someone or thing touching my legs, feet, and right hand. Most of the time, while I'm burning, I'm also cold. Isn't that a kick! To be burning up and freezing!

    My hands and arms also tingle, itch, and have sharp jabbing pain jolts. At one time I would have never believed someone could have these things wrong with them..... That you could stay in pain.....forever! It's frightening! I hate the thought of spending the rest of my life like this! Having to be careful all the time to not lose my temper due to pain and lack of sleep! So much time spent alone because you can't stand the thought of moving, putting on regular street clothes, and heaven help me...riding in a car!

    Yes, Bill, we are the orphans. Anyone who has this kind of pain, for whatever reason......is an orphan and must stick together.

  3. #43
    Senior Member Tarkus's Avatar
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    WOW !
    This thread has more twists than a suspense movie.

    Pain then verbal spats then more pain.......
    Maybe it's the pain or the switch to DST that has the natives restless !

    I have a SCI, CES to be more precise. Also have B&B issues and the CP is always unbearable. Wish the AB's down at the 7-11 understood better when I go in to buy some L&M's that my pain level is a 9, 24/7.........

    Be Big,
    AMAC

    (translation availible upon request.)
    L4/L5 CES

    www.DRAFT.cc
    http://www.facebook.com/profile.php?id=1024602574

    Messages from Alan Maccini and are produced utilizing voice recognition software. As a result of this on occasion a misrecognition of a word will occur and while spelled correctly will result in an unintended word appearing. We apologize for any errors.

  4. #44
    Quote Originally Posted by Tarkus View Post
    WOW !
    This thread has more twists than a suspense movie.

    Pain then verbal spats then more pain.......
    Maybe it's the pain or the switch to DST that has the natives restless !

    I have a SCI, CES to be more precise. Also have B&B issues and the CP is always unbearable. Wish the AB's down at the 7-11 understood better when I go in to buy some L&M's that my pain level is a 9, 24/7.........

    Be Big,
    AMAC

    (translation availible upon request.)
    Your mockery is not amusing.

    GJ

  5. #45
    Quote Originally Posted by gjnl View Post
    Your mockery is not amusing.

    GJ
    I thought it was funny and lightening things up a bit. I say this as someone who's also been confused by acronyms. I thought MSWIFE was from Mississippi. Come on, enjoy people who're trying to be funny. No one thinks differently of you. I'm sure we've all had to question acronym use. One of your best bets is to google an acronym if unsure.

  6. #46
    GJNL, it's okay. If I remember correctly, you are an older couple, so I can see how you could be confused. Heck, I tend to get that way myself when we're living in a society full of texting lingo sometimes.EX: Me and my hubby were both puzzled when last season's "jersey Shore" was starting to preview, when we saw GTL. Then felt sooo stupid because it stood for Gym, Tanning, Laundry..something they referred to frequently on the show. We're living in a world of abbreviated terms these days, it can be hard to keep up.

  7. #47
    Quote Originally Posted by quad79 View Post
    GJNL, it's okay. If I remember correctly, you are an older couple, so I can see how you could be confused. Heck, I tend to get that way myself when we're living in a society full of texting lingo sometimes.EX: Me and my hubby were both puzzled when last season's "jersey Shore" was starting to preview, when we saw GTL. Then felt sooo stupid because it stood for Gym, Tanning, Laundry..something they referred to frequently on the show. We're living in a world of abbreviated terms these days, it can be hard to keep up.
    Seriously? GTL? LMAO! I can't believe that has become an acronym. I suppose it's a relief that laundry is done AFTER the gym.

  8. #48
    Quote Originally Posted by Le Type Fran├žais View Post
    I thought it was funny and lightening things up a bit. I say this as someone who's also been confused by acronyms. I thought MSWIFE was from Mississippi. Come on, enjoy people who're trying to be funny. No one thinks differently of you. I'm sure we've all had to question acronym use. One of your best bets is to google an acronym if unsure.
    That is exactly what I did (now we all know that didn't work)...I Googled "CP-neuro" and the links all pointed to Cerebral Palsy...I wrote what I believed to be a reasonable, empathetic response and the rebukes and ridicule followed. This isn't an "oh poor me" response...it is just a response. Time to move on.

    GJ

  9. #49
    Quote Originally Posted by gjnl View Post
    That is exactly what I did (now we all know that didn't work)...I Googled "CP-neuro" and the links all pointed to Cerebral Palsy...I wrote what I believed to be a reasonable, empathetic response and the rebukes and ridicule followed. This isn't an "oh poor me" response...it is just a response. Time to move on.

    GJ
    I'm sorry for that, but most of us here think the same of you. No harm done.

  10. #50

    Who sleeps on a rock?

    I was thinking of this last night. I thought back to my 1st day in ICU. People thought I was crazy, asking "How long are you going to leave this backboard under me?" My bed felt stiff as a board. Almost 5 years later, sleeping in a Tempurpedic, I still feel the same. I guess this is a form of CP I've forgotten to whine about. If I can't feel the soft bed below me, that's one thing. Having it feel excruciating is another. No relief, day or night. Sigh.

    I'm trying Amitriptyline now too. It somewhat helps one area of CP. I get to enjoy it for a little while, until it puts me to sleepy land. Great, huh!

    I'm also wondering why my hubby thinks it's hilarious to touch places that he knows will fire me up--literally. He just thinks he bugging me, not truley understanding the intensity of what he's putting me through just then & for hours later. I think I need a voo-doo doll.

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