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Just need someone to talk to about my pain

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:27 AM in Chronic Pain
Although my dh and friends know I am in pain, I am not sure they really can understand how I feel. I have been for 3 MRIS, numerous xrays, blood tests, 2 chiropractors, 5 pain mgt drs, 3 rheumatologists, 2 neurosurgeon, 1 acupuncturist, 1 neurologist, one orthopedist, and 3 physical therapists!! I have had 6 sets of differnt types of injections in my back, physical therapy, including aqua therapy, decompression therapy table, and acupuncture. I have tried vicodin, tylenol w/codeine, gabapenti, lyrica, cymbalta, elavil and prednisone twice, none of which have worked!!!! The only thing that helps a little is percocet which I have been taking for 10 mos now.
I have recently started with a new rheumatologist at the Pain Ctr at NYU. He examined me and went over all my tests and procedures. He said there is no text book answer for what i have. I have lower back problems which havent responded to any treatments and severe pain in my buttox, hips, legs and feet which are fibromyalgis like symptoms, although I don't fall into all the fibro symptoms to be diagnosed with fibro.
He suggested trying lyrica again because he doesn't beleive I was on it long enough last year or at a high enough dose. I just started last week and felt just slightly better so he increased it. Now I am dealing with the side effects of lyrica, weight gain (always hungry), tired and a little dizzy. I am hoping that all goes away and it starts to help with my pain. I am also continuing with percocet unless the lyrica works. Dr said I could be on percocet indefinatley!
He also referred me to the psychologist who works in the center and is in charge of the biofeedback, hypnotherapy and other alternative treatments and meds. I am open to anything.
The biggest problem is that my hubby doesnt really understand. He sees my getting to work (I have a great boss and make my own hours, I have been going in very late), and getting housework done. Although I hate the supermarket and cannot deal wiht the pain of loading and unloading groceries, so I leave that for him to do and he HATES and resents me for it. He doesn't say so, but, I can tell! He just isn't compassionate about my situation even though he thinks he is.
Other family and some friends think I am just fine because I look good. I always take care of myself, my hair, makeup and how I look. Unless I am staying in the house becasue I feel to much pain to go out, I am dressed and look fine to other people. And when people find out i am taking PERCOCET, they freak out and give me all the warnings that I already know about. Of course I don't want to take it, but, I have no choice. IF i didn't I would be in bed all day crying in pain.
Sorry for the long complaint, but, this is just a worse day. The way I can explain it, is that Every Day Is A Bad Day pain wise. Some days are worse than others ( I don't know why) and some days are a little better (but, I am still in pain). How do I make people understand>? Or should I just keep my mouth shut and suffer in silence???!!!


  • Hello and welcome, adapting to pain is never easy and our situation imparts mandated changes for us and those around us and your Dr was wise to suggest that no simple solution may necessarily be possible, that in itself is a shock to the system and we believe and are told in our healthy personas that logically the origin of our pain must have a remedy. Much of the evidence here and individuals experience could be superimposed on each other, in duration treatment or suggested remedial ideas and for the most part each element has to be introduced individually and the measure of its success equated over time and continuing pain.

    We are hard on ourselves in expecting to know how to deal with this situation and new development and strategies takes time and we need to applaud the effort required every day just to get through. The fluctuation in pain levels with no reasonable explanation is symptomatic of chronic pain and we are continually looking for that illusive and fluctuating reason for the increase without success.

    Never suffer in silence, you have done that before you arrived here and although we all understand pain, each situation and life is individual and you have to find what works for you and those around you with guidance and support for a community like this. I have had pain nearly two decades and always struck on the sadness of others starting out of the journey of pain for them and that transition from normal to pain itself and all the implications far more impacted for me than the tools and skills I and others have developed in coping with the fluctuation and daily frustration we all have and continue to endure.

    The good is in those days that are not as bad as others, and I too never have days when I have no pain, that notion of looking OK is described here on SH in detail and more so because we show that game face and it is our mode of coping making everything a drama does not help you have control and living “with” the pain rather than “in” it a distinct separation. All of this takes time, skill, tenacity and hope and you are not alone.

    Relationships and communication is always important and none more so than when pain pervades the social unit, my support network do those things automatically that I cannot do physically and on the basis of some of the things I can do I repay that kindness and it does make you fell less of yourself having to ask another to do the simplest of things, over time my list has got bigger and those nuances of need that I have deduced by others when I am too proud to ask, so we all understand. We all have roles and communicating what you can do rather that what you would like to be able to do or could do historically may help.

    That openness will help and your good attitude will assist and enhance the needed change, you could resist and live in isolation, it is a lonely place and we are all worthy and should expect more, once life becomes nobody cares or understands we isolate ourselves, this whole process is learning for all and we are developing good working practice here and improving mode of coping, good luck, never just endure it in silence, scream cry rant and shout get it out, and manage it every day as best you can.

  • what is the problem with your friends ? is it because it contains a tiny bit of oxycodone?
    well i am in pain 24/7 too and i am in the UK and like most of my pain friends .we all take large amounts of oxycodone .oxynorm for brake through pain.and like you with out it i would be crying with pain.my advice to you .is to kick the idiots in to touch .let them walk a mile in your shoes.and see what they would be like ..they would soon be screaming for pain relief.do be ashamed or embarrassed about taking opiates for pain relief ..that's what they are there for!! i am on over 300mg of pure oxycodone a day and i know others on here take over one gram of the stuff in a 24 hour period..there is a UK web site called pain support and most on there are taking oxycodone for back and leg pain .{it seems to be the drug of choice at the moment over here i don't have any side effects {nor do most of my pain friends unlike morphine..
  • I'm sorry to hear your husband is resentful and unsympathetic to what you are going through. I know that chronic pain affects everyone but they should be more compassionate towards you than being judgmental. If you were you I wouldn't mention what you take anymore, simple to spare you of any grief people give you. It's nobody's business but yours and there is nothing wrong with taking narcotics for legitimate pain.

    Don't let nobody make you feel bad for having chronic pain and taking the effort to look presentable. I always say I don't want to look like how I feel. People who don't have this experience will never understand how it it and make ignorant statements like You look great, you must be feeling fine now or You don't look like you're in pain.

    Your husband should understand that you are merely trying to take the burden off him by trying keep working and going to the grocery store. It's only natural to want to help out when you can, but don't overdo it. All of us have feelings of guilt for being disabled by this pain and feel unproductive. How many times have I cried, feeling like a waste of space. We've all have gone down to our lowest points before. It's all about living and coping with chronic back pain.

    We're glad to have you here at SH and look forward to hearing from you. Take care
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