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What do you tell others....

Nicole74NNicole74 Posts: 123
edited 06/11/2012 - 8:39 AM in Chronic Pain
What do you tell other people to help them understand your in severe chronic pain? It's been a while since I've had this severe neck pain, but people are rolling their eyes at me and telling me to get over myself and deal with it.

I don't complain to many people, but I won't get of the house and do things either and that is what makes them upset. It hurts too much. They don't understand that my spinal cord is permanently damaged and it hurts extremely bad and I have not had any relief since the first day of my injury.

These people tell me that I'm using my pain as an excuse and I need to stop doing this. WTHeck? I'm at my wits end here. Not only do I need to live with this pain, now I have to live with others telling me that I need to get over it. Christmas is coming up and I don't want to spend my time with my family who feels this way. They call me a whimp and tell me I'm lazy. I'm far from being lazy. They keep asking me what medications I take also and I refuse to tell them. It's none of their business. I don't want to be called a drug addict either just because I take pain medicine.

Sometimes I do wish that they would experience what I go through, then maybe they would leave me alone.

Why are people so bitter towards people that have chronic pain? Especially family members. It's bad enough we have to put up with the pain every second of the day.


  • Nicole74 said:
    but I won't get of the house
    I won't get out of the house...
  • Boy I tell you - those we love the most are the ones who can hurt us the most, 'eh?

    In this day of technology, maybe you should suggest one of them (or all of them) do a bit of research on your condition. I have neck issues (just about every vertebrae/disc is either herniated or bulged) but my main issues are with my low back, so I can't really "feel your pain" so to speak. Maybe, you could do research for them and print it out for them to read. OR, bring one along on your next office visit.

    The saving grace for me is that my mother and I have similar back issues. Unfortunately, I look at her and see me several years down the road (scary, that!). My father in law also has neck issues and he is always trying to share his remedies with me. I take it all in stride. But, I'm years out with my pain; it began around '99 or 2000 or so. I had surgery (L5/S1 hemilaminectomy; the disc was pressing on my L5/S1 nerve). So, I've gone through the "just get over it" stage.

    I'm sad you have to go through this cr@p with your family and hope they can wisen up soon. 'Specially since you have young uns and could probably use the help every now and again!
  • Hi Nicole,
    I can relate to the chronic pain issue. I had a failed back surgery just shy of 3 yrs ago, on a 2 level lumbar fusion. I have been in more pain ever since.

    I have lost lot of friends and family, because I just can't get around like I use to. I have been told, "You take that many pills?" I just look at them, and say "Yep!" and swallow. I know that's not a great answer, but I'm sick of explaining.

    I have however, even in my small world, manage to keep the people that matter most to me. I don't complain, and I think most of us chronic pain people don't. But some how the people you care about the most always seem to know. And I have to say, my mom always knows. So when I'm hurting, she looks at who ever, and says "Time for us to go, Bobbi's hurting!" No ever questions her. LOL! I wish it was possible that all chronic pain people could have a advocate like her. We all would never be questioned about our condition. I only ever seen one person question her about me. To put it nicely, the mother claws came out, and never had another family member ask a dumb question again. LOL

    Nicole, I know this answer isn't a big help, but I found the people you care about the most will understand. I'm not saying it don't hurt to be misunderstood. It will. Your world may get smaller, but the people that really care wull always be there
    Bobbi Jo
  • Well maybe this is sneaky but here is what I now say to others :$ I use to say bad back or back injury now I say spinal injury and for some strange reason it has totally changed the reaction I get.

    If asked specifically I do explain and then add that this has effected me like a spinal injury.

    Which of course it is and it has but people seem to take the words spinal injury over back injury more seriously :??
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I'm sorry that you're having this problem, Nicole. Unfortunately, it's an all-too-common complaint among spineys.

    I'm very lucky that I have a fantastic support group that never questions whether I'm in pain or having a good day, or questions me about my meds.

    However, this is something that I do. I go to whatever "happening" is going on and never mention anything. I just do my best to walk around or sit and I moan and groan when I do anything that hurts. These are the moans and groans that we tend to suppress, but I don't. This way, it seems like people can "see" the pain I'm in. This isn't drastic or fake, like I said we all feel like groaning when we do something that hurts, just don't hold it in.

    In reality, I don't know if this works, but I've never had anybody I know question whether my pain is real or not.

  • Thanks everyone for your support. I'm not depressed, I don't go out due to my pain not being managed. My pain level has not gone below a 7 on the pain scale. I just found a new pain management clinic and they are working the best they can with medications to relieve my pain. I'm not a canidate for the SCS.

    The doctors are telling me that my spinal cord is permanently damaged due to the disc being on the spinal cord for too long. There is really nothing more they can do to help the pain. I've had ESIs, nerve blocks and diagnostic injections over the last year on every level of my neck on both sides and a few injections were repeated just to make in case they would work. I've done the PT, tens untit, ect... In the future I will have to have another spinal fusion on the other two discs that are herniated. The herniations are not bad enough yet to have the surgery.
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