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advocate for chronic pain

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124

Comments

  • I hope that the links help others to take a stand to contact their elected officials too. I honestly believe that if more of us, write articulately to our elected officials,about our own conditions and the impact that these regulations and restrictions are having on us, then maybe they will see that there is a flip side to chronic pain, and the proper use of medications to treat those conditions, do have a positive impact on our lives.
    Sandi
  • Sandi thanks for the links.

    I used to work for the Australian Govt and attended a week long ministerial writing course. The whole thing in Australia is a scam, much to my naivety. I used to advise people to write a Ministerial if they had an issue. Stupid me.

    In Aus if you write to a Minister the same carefully worded form letter goes out to a 7 year old child as to the head of a large organisation, no matter how important the organisation is or who they are. Then they do nothing.

    I was advised by the Ministerial Advisor , if I wanted anything publicised that I had to go to the press (obviously I couldn't go to the press with anything as I was under the official secrets act).

    Ministers are worried about anything in the press or that is on TV and will act on that, as the voters read the press, watch TV and it is the only time action will be taken.

    It is a good idea to have a high profile advocate and will keep looking here.
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  • i just wrote senator feinstein today. she is my senator from california. i wrote that we as chronic pain patients would like to be recognized as valuable members of society and not a bunch of drug addicts. we work, raise families and try to contribute to society the best we can. on and on. i suggested a chronic pain day since there are breast cancer and prostate cancer and aid days. this was the jest of the e-mail. if we really really really want to be recognized then more than just me or a couple of people need to contact senators or others.
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I will be writing to one or more of the Senators in New York State as well. I agree that there needs to be more positive awareness for people with all variations of chronic pain.

    Charlie
  • Thanks for the idea and links. I am working right now on my letters. Chronic pain is an issue needing serious and legitimate discussion by us and by government officials. The stigma and endless regulation of pain medications doesn't seem to be stopping or even diminishing the illegal drug trade, but it seems to be compromising adequate treatment and control of chronic pain patients' conditions. We are treated like criminals and often suffer for years with minimal pain control because the doctors have been scared into believing they will create drug addicts or be feeding an addiction. The current drug regulations don't seem to impact the illegal activities, it just complicates and impacts the legitimate patients in need. People who are participating in illegal drug trade and use it to feed an addiction could care less what regulation changes were passed as it won't impact their method of obtaining and abusing their drug of choice. They most likely weren't obtaining their substance of abuse through a legal route anyway. I hope we can all spur a bit of change or at least consideration among the people who have jobs by our votes.
    Candace
    DDD & spinal stenosis L4-S1 since 2001
    30+ injections, PT, massage therapy, accupuncture, TENS unit, meds, etc but no surgical intervention
    I am not a surgical candidate
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  • anyone get feedback from any support groups, senators, congressmen, ladies in waiting, anyone anyone, buller anyone buller? I have not heard from anyone and it has been a couple of weeks i guess since i sent mail. i have not heard a word from wounded warriors which is disappointing. i believe it will take a while to hear from senators or congressmen. stay in touch if you hear. we need to stay on top of this if we are serious. i don't want to be the only one posting to groups.
    thanks
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Kiki48KKiki48 Posts: 196
    edited 05/24/2013 - 11:45 AM
    I did offer the suggestion more than one of us conacting the "Wounded Warriors" looking for an advocate. It's unfortunate it was dismissed. I understand if they only recieve a couple of contacts. There is much to sift for them.

    Senate without an advocate seems like it would be the best bet at this point.


    Kiki
    XXOO
  • I hope to start writing my letter tomorrow, saving it to hard drive as I go along, fine-tuning it. I got tied up the last couple days having myelogram yesterday and still feeling somewhat out of whack. I'll make sure I follow through.

    Charlie
  • I truley hope it helps. I'm an advocate of pain relief. I hope you guys make your point and it gets across to the point that it IS human rights to be comfortable with pain and terminal pain.

    Kiki
    XXOO
  • MetalneckMetalneck The Island of Misfit toysPosts: 1,778
    edited 05/25/2013 - 8:59 AM
    Why doesn't our little community establish a national






    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??

    d

    Mon, 05/14/2012 - 2:23am
    #2.
    backache99
    Member
    Joined: 11/01/2010 - 4:05pm
    Posts: 1242
    Send PM
    interesting
    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???
    tony{UK}

    011 ALIF result poor
    {2 previous operations L4/L5 S1done twice}
    Mon, 05/14/2012 - 6:38am
    #3.
    SueD
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    Joined: 01/30/2010 - 1:32pm
    Posts: 553
    Send PM
    hiya
    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!


    SUE
    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 !!
    .
    Mon, 05/14/2012 - 7:10am
    #4.
    alexhurting
    Member
    Joined: 12/14/2008 - 11:36pm
    Posts: 2040

    I am not sure i want




    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!

    Git-ir-done
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
    .
    Mon, 05/14/2012 - 2:29pm
    #5.


    anelsen15
    Offline
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    Joined: 06/26/2008 - 3:11pm

    Posts: 1136


    Well I would have to






    Well I would have to politely disagree. Look at cancer
    ( Susan Koman ), mental illness ( NAMI ), and many other foudations. It was that awareness that brought funds, compassion, further reasearch, etc to those causes. I promise there is no MD Anderson for chronic pain sufferers. The problem is that even though we all know someone in pain or someone knows of our pain, chronic pain carries a huge stigma, and a big part of that is that it does not "kill people" and its not a black and white disease, meaning some people suffer from what in others back does not cause much/any pain.
    I dont think its an issue of someone validating what you are suffering with its a way to bring furthur recognition that chronic pain can be just as destructive as cancer to life, families, career its just the end result that differs. And possibly further along the need for better treatments and maybe help others in future. Imagine if Christopher Reed did not want others to be empathetic or recognize his suffering, superman in a wheelchair, it was so ironic and made heart break, and I am sure brought many more donations to his cause.
    Ill totally agree that someone who has not suffered something will never totally understand, but why then do you never meet someone who disregards " I have cancer statement" when the same person will disregard " I suffer chronic back pain"as something serious? Many people with cancer suffer chronic pain ( worse or not worse at times than a person with severe back pain ) yet no one would question a person who says I have cancer when they would say they are hurting, but I guarentee its not the same for chronic pain ( I have fibromyalgia, I have arthritis, I have failed back surgury ).
    Cancer is just a word that evokes fear, empathy, an idea that person is suffering even without ever suffering it yourself, but chronic back pain is kind of blah words to most who have not suffered it.

    And hell yea metalneck, If George Clooney came out and did a national tour and fought for back pain patients it would make a difference. He is one of the higher profile people Ive seen suffer severly with chronic back pain. Shoot, JFK fought to hide back pain cause he felt it made him look weak even though he suffered his entire life, thats just the attitude for even people suffering I guess.



    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
    .

    Mon, 05/14/2012 - 6:18pm
    #6.
    Metalneck
    Online
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    Joined: 07/23/2008 - 9:26pm
    Posts: 1159
    So I believe that we all agree that
    something of this nature would be of benefit ... the already is the American Chronic Pain Association .. maybe we could partner up with them http://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?

    Dave
    .
    Mon, 05/14/2012 - 7:18pm
    #7.
    Lovetrotravel
    Offline
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    Joined: 04/19/2011 - 7:51pm
    Posts: 303

    Tue, 05/15/2012 - 11:19am
    #8.

    dilauro
    Moderator
    Joined: 06/16/2008 - 9:41pm
    Posts: 6293
    Chronic Pain Day

    Dave,
    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 Spine-Health System Moderator
    Where have the Flowers gone
    .

    Tue, 05/15/2012 - 11:42am
    #9.
    Metalneck
    Online
    Joined: 07/23/2008 - 9:26pm
    Posts: 1159
    I completely understand your point of view!!




    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,

    Dave
    .

    Tue, 05/15/2012 - 3:14pm
    #10.
    Alexhurting
    Joined: 12/14/2008 - 11:36pm

    Posts: 2040


    Jerry Lewis would be the
    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 ,
    .

    Tue, 05/15/2012 - 5:52pm
    #11.
    Dumbledore_Calr...
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    Joined: 05/08/2012 - 6:46pm

    Posts: 47






    Yea i agree it would give

    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
    .

    Tue, 05/15/2012 - 5:55pm
    #12.
    Dumbledore_Calr...
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    Joined: 05/08/2012 - 6:46pm
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    I think Chronic Pain/Chronic
    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.
    Fri, 05/24/2013 - 1:22pm
    #13.
    Metalneck
    Online
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    Joined: 07/23/2008 - 9:26pm
    Posts: 1159
    Bump to add to Jons idea - We have thought of this before






    But maybe a new approach will work!!

    d
    .


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