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Why doesn't our little community establish a national

MetalneckMetalneck The Island of Misfit toysPosts: 1,778
edited 06/11/2012 - 9:02 AM in Chronic Pain
Chronic Pain Day?? Someone call Hallmark .... they will want in on it!! But maybe funds could be raised for research on Chronic Pain .... Support groups could be formed. We could get some national speakers and some media exposure to our plight??

Just in pain and thinking out loud! Thoughts? Comments??



  • we have TV program over here called the wright stuff and they talk about the issues of the day and other random things ..i have asked many times for them to highlight PAIN but nothing {even though the main presenter has BACK PROBLEMS AND HAS RECENTLY HAD surgery!].there are organisations for terminal illness and millions are donated for them .they even have there own nurses .but chronic pain has nothing !! .
    i find it hard to believe that so many of us needing some form of help and recognition ..don't get it ..many of us will be in pain for the rest of our lives .all we get is pills and get on with you life!..if it were that easy....
    but i think you have a good idea just if we could get it over to others that our problem is as bad as any other problem..i can see the look that people give you when you say that you aren't working ..or what ever ...because you have a bad back {the term is synonymous with lazy people that don't want to work in many people's eyes} with many of us that could not be further than the truth .....i recently had to get my disability blue badge and this time i needed to go to get it in person and i wasn't treated well at all ..because i look ok and don't have any immediately obvious disabilities i could see the staff there analysing me and i could feel the wave of hostility from some of them ..and there i am in agony full of pain pills trying to do something out of my comfort zone but it not being recognised...i was so annoyed that i have make a complaint to the relevant people....don't get me wrong ...i don't want sympathy or extra this and that just to be treated as a person and not a number to be able to park in a blue badge space and not feel guilty ..to collect my pain pills because i NEED THEM ..not because i am abusing them ..and maybe a help line just to chat with some one like the macmillan nurses do for the terminally ill ...some ideas???
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • A national 'CHRONIC pain day' sounds like a good idea, but I can't see it happening any time soon.
    I think the NHS here in the UK would rather not face a huge problem like chronic pain. Yeah, they can handle it at local level (as Tony says) by dishing out pain meds and providing treatments/tests here and there, but it's so difficult for their overstretched services as it is.

    Don't get me wrong, I am an avid supporter of the NHS and, when it works, it's absolutely brilliant and has served me very well over the years.

    I so know where Tony is coming from with his comments about people treating him like an inferior human being. If you remember my post a while back, I had an incident when I was waiting to use a disabled toilet at a well known shopping centre. I was mortified!

    If I'm wearing a short sleeved top at work, I get no end of comments about a scar on my left elbow (from surgery in 2010). To me it's such a minor thing that I have all but forgotten about it now, but my obvious scar from 4 spine surgeries (all on the one site) are of course not visible to others. Therefore when I say I have a 'bad back' I usually get a sarcastic look from people. Sometimes they will volunteer information about one of their family members or friends having had a 'bad back' for a week or two - like they know exactly how I feel. Well, they don't.

    I know most people mean well when they ask me such questions as "How's your back today?", but I've just run out of answers now as a) I don't really want to think about it and b) there's no point providing lots of information when really they aren't that interested anyway.

    Sometimes I feel very selfish in my attitude and it's something I really must work on. Chronic pain makes you 'insular' (is that the right word? - meaning that I'm thinking of my pain and how it affects ME) and I really must try very hard to see things from other people's point of view. They are only asking me how I am as a means of a greeting, they don't really want to know the ins and outs.

    I had about 6 injections last Thursday into the S.I. joint and my weekend was so uncomfortable. I didn't go to work on Friday and I haven't been today either. I have had to phone the world and it's mother to ensure I have followed the correct procedure, but have felt the need to also write an email explaining my circumstances to my managers in a little more detail.

    I know I don't have to, but I feel I'm on a 'test' at the moment with regard to returning to work, so this time off isn't helping my case at all. But there's not much I can do about it.

    But, do you know what, I'm in no mood to care just right now. My main energy is spent resting, taking more meds - then resting some more (cos that's what the meds do to me).

    If there was a Chronic Pain day at least some ignorant people might be more aware of others problems, although I doubt it.

    Sorry to sound so negative today, and rambling on so, it's just the way life is sometimes eh?

    I wish everyone a pain-free Monday!
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
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  • I am not sure i want recognision for my pain and disability! I would rather be recognized who i am outside of my failed back surgery and my injury!

    I no longer look for other peoples acceptance of my condition and simply dont care if they aprove or not, As long as i understand it is all that realy maters to me,
    Everyone has there own demons they deal with even when they are healthy and you cant look for acceptance from others if you cant accept what medical condition you have yourself !

    Back pain is not the same as a chronic back pain that lasts even past surgery,
    And even if no surgery because surgery is too risky posibly makes back pain a big form of a chronic illness,

    This is nothing new and everyone knows about it and of course they dont feel it and as long as they dont have it and never had it they will never totaly understand it,
    Just as i never given birth i know its painfull but not realy cause i never did,

    And being male i dont think i ever will !

    So why look for acceptance from others if its simply foolish !

    I know what i deal with dailey, And i surely dont have the energy to convince anyone else what i deal with and sure the hell dont have the energy to be ashamed about my injury,

    To be looking for acceptance or to be ashamed of our own failed surgery or any injury just brings insult on top of injury by our own doings!
    If we had to accept that we became victims to such injury then the rest of the world will have to accept it just the same so i surely would not sweat it !

    Dave, Good idea, Dont forget the bumper stickers. Honk if you hurting!

    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • MetalneckMetalneck The Island of Misfit toysPosts: 1,778
    something of this nature would be of benefit ... the already is the american chronic pain association .. maybe we could partner up with them https://www.theacpa.org/default.aspx to increase awareness of our group. i joined their org but beyond them asking for $ i didn't find any local groups or really any additional help. the only group they had were a couple of people in the boonies and i'm in chicago .... so too little (or too early) to provide much benefit to me.

    i would like to think and make a splash thats big (cause lord knows our pain and needs are).... ron, tam, cindy, c, got any thoughts or feedback or interest?? others?? ideas?? or am i still dreaming?

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  • dilaurodilauro ConnecticutPosts: 13,584
    I can bring this up to the owners.

    Personally, I feel there are so many different sites that talk about chronic pain, having a reserved day is something I would not want.

    I think many of us are tired about hearing and dealing with our chronic pain on a daily basis. So, keeping it to ourselves, and to our community here does wonders.

    Just look at some of the magazine or paper articles that have dealt with chronic pain. They all hit it on the head, but how many people besides those in chronic pain can remember words that were discussed in those articles?

    I may even be a bit selfish, but if I was to stand behind a day or event for some condition, I would want it to be for those futile and almost hopeless situations.

    For us, we all have a chance, some very good ones.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • MetalneckMetalneck The Island of Misfit toysPosts: 1,778
    It is unfortunately such an intregal part of so many of our daily lives ... it could be just like throwing gasoline on a fire.

    As before ... just kinda thinking out loud. You know I respect your judgement on if, and how to proceed, if at all!

    Hope your having a good day (I'm still waiting for Fridays Lumbar MRI results). EEKKKK!!

    Warm Regards as always,

  • Jerry Lewis would be the best spokes person for chronic pain for which he is already for the spinal chord stimulater because of all the years he suffered with chronic back pain,

    As famous as he is most dont even know of his long term suffering after multiple surgery for back pain after he injured it while doing his stunt with Dean Martin jumping off the piano,

    He has shared his story but its not drawn a wide range of people to understand that back pain is not always as simple as surgery and its all done and life is good,
    Thats just simply not always the case,

    People with chronic pain that simply cant be explained for 1 reason or another because so many diferent things can cause this that sometimes even dr,s dont know the cause even bringing awareness to it cant bring the research to the 1 direct cure because cause is so wide and not just 1 cancer cell and such as it is with cancer,

    Many of us fall in to the catagory of spine injury and not back pain,
    This is what causes the missunderstanding of others who have simple back pain which could be as simple as muscle pull and some of us who might have spine injury which cant be cured,

    And research is already out there for spine injury which would also help many of us in the healing for chronic pain from spine injury,

    This is the reason people dont understand many here who might just say to friends or others that you have back pain, Many work with bad back pain so thats just minimizing your own injury if you posibly already had surgery to try to fix your back,

    90% of people have some form of back pain they deal with day to day and function well without serious issues for the most part,

    I had back pain for 20 years before i had surgery and did ok before my surgery for the most part , You can rest when pain gets bad by the end of the day and you go to work the next day and do it again as needed, Yes work and rest and work and rest,

    With more serious spine injury you rest and hurt and rest and walk and hurt and rest,

    I complained when i worked and hurt and now i complain cause i cant work and hurt,
    Working and hurting was much beter then not being able work ,

    Its much more fun bitching about a job and how hard i work and how they dont pay me enough then bitching about i hurt so bad i cant find my penis cause it hurts to look down !
    Thats just an example of course about not finding the penis, I never had that problem a swear,

    So what was the subject here again! Oh ye recognition,

    If we need recognition then we have to include many other conditions,

    I bring forth victims if cross eyed and drewling patients !
    Rectile dissfunction syndrome !
    Born blonde syndrome !
    Foot fedish foundation of America !
    Under achivers dissfunction !
    Over achivers personality dissorder !
    Cant shutup mouth disease !
    And last but not least ; bloaded and farting group straight out of the windy city of chicago illinois !

    All the above deserve the same recognition as we do in chronic pain !
    So lets get the ball rolling and bring awareness people !

    We are ready for Oprah Dr Phil the Dr,s show ! Bring reality tv back to reality !

    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Yea i agree it would give some good recognition for certain situations of chronic pain. Though I've never been one for celebrating certain "days" so I wouldnt be much help in getting it started and following through.

    But I will say, Its not a bad Idea, go for it
  • I think Chronic Pain/Chronic Injury might be better to define it. When people hear chronic pain it is somewhat ambiguous, so attaching a certain cause to it would help clarify a lil.
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