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stigma against chronic pain sufferer

I am a new member and this is my first time posting.
I have had migraines for 37 years and now they are chronic.
I also have degenerative disc disease in C1-6 with spasms in the shoulder and chronic neck pain.

My story is so long with numerous tests, and doctors involved. You name it I have tried it.
If it were not for not wanting to cause my family pain I would have taken my life 10 years ago.
My husband tries to be supportive but my illness has had a huge impact on our marriage and quality of life.

Like so many other stories on this site do not have any outward signs of illness and when I go out in public try to look my best and put on a happy face.

I find such frustration when I do get the courage to tell friends or extended family about my chronic pain. I know there is no way to truly understand how someone else feels unless you could crawl into their skin. I must say however that I am so weary of the issue being taken lightly or treated as not a serious illness. I am a nurse and until I had chronic pain I as well as my colleagues would find those seeking pain medication etc. with suspicion and a lack of compassion due to the few patients that did misuse narcotics etc. Now I am on the other side of the issue and I feel this sense of shame when I seek pain relief as I know the attitude that the medical profession can often have toward us. These are people that should know better.

I have been actually told by a primary care Dr. that he felt my insomnia, and depression could be bipolar disorder.
I was so upset by this that I went for 5 months to a psychologist with a PHD to show him that this was not so and took the letter to him from this Dr. stating that I did not in her opinion have any symptomology of bipolar disorder but instead had depression and insomnia due to chronic pain. Hello!!


  • That comes with chronic pain as well. I hope that you can find people here that truly ubderstand what you are going through. This site has helped calmed me down tremendously in knowing that I wasn't alone in all of this.
  • I know what you mean, in fact I actually like wearing my soft collar for my neck sometimes because it gives a visual that takes away invisibility of the problem.

    I think it's great though that instead of just fuming and stewing in your anger you took initiative and proved that the chronic pain was the problem by seeing the psychologist. I have always been prepared to do the same thing if I need to.

    The thing I can't stand is when medical professionals use terms that belittle or understate what we're going through. A nurse called my neck pain "discomfort" right after I said I was having daily level 9 pain.

    I had a friend offer me a Norco 10mg once when I was still struggling on my tramadol. Desperate I took it and it was amazing relief. I spent months in pain all day every day unable to simply ask for a medication that I knew would offer me the relief I needed because of way it works thanks to the few who abuse. I would do things the right way and just say I was in pain, that my current treatments weren't working, and at one appointment after saying "I take these medications all day and I'm still in pain" the nurse practitioner I was seeing said to me "I can't give you narcotics" in a very nasty way... I'd never asked for them! I'd simply told her a fact about the medication I was taking!
    Microlaminectomy and discectomy at C7-T1 on April 26th.
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  • First let me say welcome to spine-health. Have a look around and you will find many others with the same condition as yourself. If you look the site over you will find a letter that is to normals from a chronic pain persons stand point. I myself have no use for anyone whom tells me the pain isn't real. I look at this way, people say stuff all the time in life, that is directed in general at people, and I know they are not talking to me. I take that same stand point living in chronic pain. If I have to defend myself against them, I have no need for them in my life. It is hard enough to live in pain so I am not defending myself to NO one about it. IN my case some of it is visual with the surgeries I have had, as you can see my entire neck has been cut on, both sides of the front, back and side. Most think I have been in a knife fight or something, so I do have the benefit of the scars. I recently had to change pm's due to my doctor retiring, first thing new doctor says, why are you on all those medications and I figured here we go. But I blew his comments off and said read the file and you will know why, then when you have questions ask me. After all that is why he was given the file and charged for a new patient consult? My point is you don't need to prove yourself to others, it is not worth your time and trouble and just brings on more pain, if you ask me with the additional stress.

    Anyway just thought I would stop by and say welcome. You will find plenty of members whom who understand what you are going through. If I can be of any assistance don't hesitate to pm me. Take care.
  • givemehopeggivemehope Posts: 7
    edited 03/02/2013 - 2:31 PM
    It is so comforting to hear others stories and know that I am not alone In seeing and battling with this issue.

    I had to move recently and after years of going to the same Dr. who knew me and knew that I didn't abuse my medication and had to find a new Dr. I called the closest clinic to me and one the questions the receptionist asked me was are you on any pain medications. I said yes and was told that they would not take me as a patient. This is a fairly large clinic of primary care docs who take my insurance. I was shocked. I was immediately defensive and explaining myself telling them that I do not abuse my medications etc. I felt ashamed and was embarrassed that I had been so pathetic to have to explain, defend, almost beg to a complete stranger that I actually started to cry after hanging up the phone.
    O.K. I have to live with chronic pain that is not alleviated by my pain meds as I am probably to conservative in taking them out of fear of being "labeled" but now I can't even see a doctor at the local clinic. Wow!!
    In my area your primary care doc has to give you your pain meds. I eventually found an internist and have my first appt. in three weeks. I am nervous about talking to him about my pain meds and afraid of his attitude and what I will do if he is unsympathetic.
    I worked in two family practice clinics as an office nurse one of which was a teaching clinic for a total of 8 years so I really know what goes on in the clinic. The doctors are afraid of being investigated if they prescribe to many narcotics.

    I know that we have a huge problem with illicit drug use and people do sell their meds but as my pain Dr. keeps telling me "you are not an 'addict' even if you have a dependence on meds, you need them to alleviate your pain". He has been understanding and always after a procedure will ask me if I need pain meds. But these doctors don't talk to each other.

    I don't want to live like this! I do everything asked of me to find an answer to alleviating my pain but nothing so far has worked for long and I am so weary of all of it. My only relief is sleep which is difficult as my pain keeps me awake most nights until I am so exhausted that I finally sleep.

    As a final resort after 10+ years of constant pain I got a medical Marijuana RX at the suggestion of a sympathetic doctor that I will not name. I asked him how he felt about MM and he said he thought I should try it. I am sure he didn't put this in his notes.

    I have raised my children to "Say no to drugs" I don't even drink accept for maybe a glass of wine on a holiday nor do I smoke but with fear and trembling I tried MM and found that it gave me almost full relief. For the few hours that it works, it helps me sleep, relieves the nausea that comes with chronic headaches and migraines and yes it feels great. Downside I am unable to think clearheaded which I much prefer. I am a thinker a reader and most of my friends and associates are also. My son is a psychologist etc. I certainly could never tell my employer and would most likely loose my nursing license as well as my on call job if it were known that I use this. But in the privacy of my own home I can have a few hours of relief. My husband is overjoyed to see me smiling and happy again for a few hours.

    Thanks for welcoming me and listening. I can't tell you how good it is to talk to people who understand after all these years of suffering in silence

  • Only time I seen a shrink is when you have either a spine cord stimulater trial or pain pump trial it's a must !
    So I had my appointment with this shrink walked in his office I asked where is the couch, How can a shrink not have a couch,
    So now I was prepaired if he says the pain is in my head just by some crazy chance then I can tell him how would you know, You don't even have a couch, It's always good to be ready to get in the shrinks head before he gets in yours,

    I know where my pain is from and back and leg pain so out of control, But if shrink wants to play mental warfare bring it on baby , I don't feel I have to prove anything to anyone and nobody should have to,

    Either take my word for it because if multiple surgery is not proof enough and you need further explaining when I say pain then you need the shrink lady not me is the way I see it,

    Yes stigma is out there in the world about chronic pain but that stigma is simply there mental ilness not ours to deal with,
    We live in reality not in a dream world ,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
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  • eadubyeeaduby Posts: 100
    edited 03/03/2013 - 4:30 AM
    For me in my area it is unusual for a primary care physician to prescribe heavier pain meds, but my pcp gives me mine after none of the specialists or my pain management doctors would. After I had been told the one time rudely by pain management that I wouldn't be given narcotics without even asking for them, and having gone to pain management multiple times telling them that my pain was out of control and being given no help, I went to my pcp and she was sympathetic, thought it ridiculous I was being forced to live in such pain, and started working with me on my meds to find a working combination.

    Fast forward two months later, I have an appointment with the pm doc again, and it was incredibly hard to hold my tongue when she commented that I was looking better and seemed to be feeling better. Well no wonder, I'm finally on a medication regimen that actually helps, no thanks to you.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
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