Back Pain Readers React

Back Pain Readers React

By Ed Coghlan.

A recent National Pain Report article about a book on Back Pain has, not surprisingly, elicited quite a response from many of our readers.

It was about a book written by Cathryn Jakobson Ramin titled: Crooked: Outwitting the Back Pain Industry and Getting on the Road to Recovery.

It argues that most of the intervention that the medical industry does to treat this huge problem has mixed results at best—and concludes “back pain is one of those nearly universal ailments with no cure. Patients and taxpayers wind up paying the price for this failure, both in dollars and in health.”

Our readers sounded off:

A reader identified only as Maureen thinks Ramin didn’t write the right book:

“When is someone going to start talking with us ‘permanently scarred and damaged chronic pain folks’ and write a book about how to help and manage us and our permanent damage?! I know it’s complicated but we are in need of proper help and guidance. Not suggestions for the average person in pain. We are far from average.

Another reader identified as Grey said his mother’s doctors weren’t listening to her.

“Mom was told it was all in her head, to see a therapist. When they finally did imaging, it was clear that bone spurs were cutting into her spine. She had a cervical laminectomy within a month.  Therapy is often used in a dismissive way. The problem must be imaged if the patient’s symptoms are red flags.

Stacy Cooper–who first had a fusion in 2010—asked a question about insurance companies that we hear often.

“Why does the medical insurers get away with not paying for therapies that help? I had no problem having insurance pay for both neck and back surgery.

Joseph Atkison—like many—argued that the reduction in available opioid pain medicine is hurting the patients.

“What do we do about the FDA pulling our pain meds off the market because of some idiotic people!!! I needed that medicine (because) it’s the only thing tht works!!!

Don—reacted to my own personal recollection that exercise was helping me in my 40 year battle with chronic back pain.

“His thinking makes people without chronic back pain think all we need to do is wake up in the morning and bend over and touch our toes a few times and we will be pain free.

Kathy C asked what is a critical question not only about back pain but chronic pain treatment generally.

“We have had no Scientists, Statisticians or Medial Practitioners weigh in this in a credible scientific way. The silence is deafening. The Biggest Takeaway is the lack of Objective Science. We have no more understanding of pain now than we did 30 years ago!”

Kathy’s comment started me thinking (again) about how chronic pain is (or is not) treated. More on that tomorrow.

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Authored by: Ed Coghlan

There are 22 comments for this article
  1. Cherylm at 10:36 pm

    Joseph your story mirrors mine. I was on fentanyl but because of the cost and being laid off, could no longer afford. Doctor put me on opana. It was great at relieving my pain. Then started reading all the stories about how it was getting pulled of the market because of 7 people who got AIDS sharing dirty needles maybe that should be taught in school, sharing needles is dangerous and you can end up with AIDS hep C. As bad as I feel for those people I was angry that they pulled Opana from the market . And they did it fast. They were supposed to allow us time to meet with our doctor and come up with new med to try well that didn’t happen for me . I had to wait 5 days for appt and had the worst withdrawal ever. She started me oxycontin which didn’t control my pain at all. I called her second week saying I was suicidal. I just couldn’t take the pain anymore . I saw her next day and was started on morphine which works way better.

    I also understand your financial concerns. Hanging on by a thread. That stress doesn’t help my pain and it’s likely not going to get better. Wish I could help you I know your suffering as I’m dealing with it too

  2. Neldine Ludwigson at 12:08 pm

    Sarah Y., I believe you nailed it. Thanks for speaking out loud. Best to you.

  3. Joseph Atkison at 1:21 pm

    Ty ms cathy!!! Tht means a lot ik yhe power of prayer is very powerful and no matter how far we are away from each other your prayers are very much appreciated!!! The depression is almost as bad as the pain!!! Well if not more!!! Sometimes i just feel so horrible inside idk what to do. Sometimes i just wish it would all end but ik theres loved ones i cant do tht to ya know???!!! But i wanted to ty for your kind words and prayers!!! And ill do the same for you!!! Have a good weekend….
    JP…
    Btw my name is JOSEPH but everyone calls me JP thts why i signed JP if tht didnt make sense to u… Lol. Thanks again!!!

  4. Maureen at 7:23 am

    Joseph, My heart goes out to you. I can hear the pain and anxiety in your comment. It angers me greatly that all of that has happened to you. And I wish I
    could wave a magic wand over you and make it all better.
    We are all suffering in many ways. And most of the time all we have is hope, hope for something to majorly change and help us get through this tough life in pain and poor treatment. I’m praying for you and sending a healing hug.
    Keep strong warrior, I know it is not easy whatsoever. If anything, you have all of our support. Maureen

  5. Cathy at 1:16 pm

    Joseph, So sorry for you and your sit in life right now. I really wish I could become Robin Hood and rob from the rich to give to the poor. Im hoping for the best for you. i hope and pray a good change comes your way. cathy

  6. Joseph Atkison at 5:06 pm

    Weird my name is Joseph Atkison too!!! And i have already said its so messed up tht the fda can take my medication after 2 yrs of trying different garbage tht didnt work and i found oxymorphone… Everything was going ok until i got the news they were pulling it and now im on oxycontin which is garbage doesnt really help and the way the pharmacists look at you when you hand them a perscription like your a lowly junky!!! Im sick of being in pain and not being able to get the help i need!!! Ive had this problem for 15 yrs now and about 3 yrs ago finally got insurance and found out i had degenerative disc disease plus carpol tunnel and more pain in my upper back. I had to stop working last October because it got to where i couldn’t work anymore i would litterally cry in the trailer!!! I was a landscaper and all Ive ever done was manual labor and now i lost my insurance of coarse going to pain management at $140 ea month plus 400$ for crappy pain meds and i cant get in instant release meds for in between so im expected to wait 12 hrs between pain pills??? And then when i have a bad day and hav to take extra i run out then i get sick bc i dont have any!!! These medication rules are getting out of control i understand you dont want people doing them tht dont need it but what am i supposed to do!!!! I have no job bc i cant sit stand bend stoop do anything bc it makes my pain worse and you want to pull my medications tht actually work bc of some people who misused them???? Im sorry for them getting aids or whatever its a crying shame but why let 170 something or whatever people ruin it for the millions tht need it. And honestly the opana worked but i needed more bc it wasnt controlling it for 12 hrs maybe 4 or.5 and my doc tells me she cant give me anymore bc people are only allowed a certain amount of morphine. What so i need more to be able to live my already crappy life bc of the pain i deal with but im only getting a few hrs of relief??? And now the oxycontin im on doesnt even do tht!!! I need a better medication i cant even hardly get out of bed in the morning and im 34 yrs old and my life is basically over bc of car wrecks and a bad decision on my part to jump in a lake and hurt it badly again. But i cant get any kind of relief from my pain bc a couple people wanna get stupid and die!!! God rest there souls im sorry they died but it was there choice and people are goimg to.do what they do no matter what people!!!!! And now the oxycontin costs more than the medication tht works and i have to pay out of pocket with no job for all my medications and doctor visit which adds up to close to $1000 a month. The only reason i can get what i need is bc my girl friend pays and.guess how tht makes me feel??? And im going to loose her bc she cant afford it much longer and yes ive applied for disability and been denied once already and if they deny me again i hav no idea what im going to do. Im sinking faster and faster and about to loose the best women ive ever had bc of my disability tht wasnt my fought it happened i was just unfortunate to be in cars with people when they wreck!!! Ive been in so many wrecks i cant even count them bc of other people and im a decent person and dont deserve any of this. Im not perfect but i live in misery every day and theres nothing i can do!!!! And of coarse everyone thinks im slack bc i dont work but i cant do anything without being in pain any and every postion you can think of sends me into indescribable pain yet everyone looks down there nose at me bc i cant work!!!! Ive worked with this for 15 yrs and im at my whits end idk what to do!!! Im sick of the life of suffering!!! Ya seems like im throwing a pitty party i can hear people now. But this is honestly what i deal with on a day to day min by minute routine!!!! I have nothing else to give i cant keep getting someone i love to pay my medical.bills bc she feels sorry for me!!! CHRONIC PAIN HAS RUINED MY LIFE!!!!! Is there any kind of help i can get for this.someone plz lead me into the right direction!!! I live in SC in the upstate… Im seriously at the end of my rope tho. I can’t take much more. The pain i deal with is a 20 on a scale of 1-10 And all i get is ridiculed. Can someone please help me ik there has to be another good hearted understanding person out there who knows what i can do!!!! Thanks for letting me rant. I have no1 to talk to who understands And believes me… Thanks for listening if you did… JP

  7. cathy marshall at 6:49 am

    Note: contacting the CNN sites-is Not working. I tried 3 times to submit and it goes to a missing page. Seems like its a setup or something. they just may not be taking messages from us people in pain. Best to get on our knees and pray to God.

  8. Ibin at 9:44 am

    Two lower back surgeries. I had complete faith in the surgeons ability until…….he stated before my last back fusion surgery with surgical plates and screws he stated “you are going to go on ss disability?” I was setback, to say the least at this statement before the surgery was even done.

    I was 37 years old, children in college, home mortgage and one car payment along with recurring debt. I was NOT, could not, “lie down” with so much at stake. A great deal of debt behind my wife and I but, more debt before us. I understand that with some disease and injury, the flesh can not continue to earn a living or complete normal tasks. I was blessed in the fact that with medication……I could stay self sufficient as I was taught by my hard working parents. With the help of opiate medication AFTER all the other “remedies” for continuous, severe, incurable pain, two years after all other remedies form surgery I was offered a very mild opiate medication and guess what, I had ZERO problems.

    Now after 23 years, my medication strength has been increased but, due to tolerance developed but again this is expected with most long term pain patients. This is my physicians “job” to monitor my needs and prescribe sufficiently, not overly prescribe. The pain was eased enough to work but, not one day went by without realizing the pain……was still there. I was still working until the CDC mis-guided-line damned ALL patients along with the intended target of the unfortunate abusers and misusers to be reduced, one and all without regard to any documentation. Records kept about the individual patient. I was reduced 80% personally on medication that I have gotten along without an increase for 5 years and furthermore, did not request more.

    I am no longer employed, blowing through life savings but, could still work IF I got any where near sufficient medication without prejudice, unwarranted reduction of medication that helped. I used (still) ice packs, heating pad and exercise, physical therapy and was breaking……no laws until the “law” was revised. I am no longer self providing which I thought was my right to do so EVEN with a controlled legal substance especially if I was “following the rules”. No choice but to “fight” for the patients rights even if it requires a substance(s) that a few choose to misuse. The “experts”, the authoritarians, those who best know the dosage I, and each other patient needs is a mystery to me just “how” they know without these experts having daily, continuous, severe, incurable bodily generated pain.

  9. Cathy at 9:22 am

    Amen Sarah Y. How do you feel we should organize? I blog on the Inspire website and I make comments on PNN,but I tried to do it on /craigslist -and that got deleted. Calling my NY reps is a waste of time. I even wrote the WH and a few radio hosts.It seems useless. Even tho I am a beliver in God,I am almost at the end of my rope.

  10. M.Billeaudeaux at 9:05 am

    Everyone here must email their congressman, and news outlets. You can email CNN about this “War on Patients” to community@cnn.com or cnn.feedback@cnn.com

    Unless we become proactive instead of reactive our life saving medications may be taken from us, or our physicians may not be able to prescribe what works best for us in the new future.

    Become involved. Write, it just takes a moment of your time.

  11. Sarah Y at 11:53 pm

    Hasn’t any of the “powers that be” (CDC, PROP, etc.) see that even with prescriptions going down, heroin use hasn’t gotten any better, it’s actually getting worse! Chronic pain patients have become “the problem” while addicts have a disease? Does anyone else see a problem with this? They are taking all pain medications away from chronic pain patients, but are happy to give addicts Suboxone and Methadone (opiates) and they don’t have restrictions on morphine equivalents. It’s truly starting to feel like they are trying to get rid of the sick and weak through passive genocide! I have read too many stories about patients who have been forcefully taken off all of their medications just to turn to the street out of despair and worse, suicide. Pain and under treated pain is one of the leading reasons why people commit suicide. This needs to stop! It seems like chronic pain patients are invisible to the average person, and because of this, we are easy targets. We need to join together and let ourselves be seen and heard! May God watch over us during this scary time.

  12. Maureen at 10:36 pm

    @Kevin…I hear ya! 4 failed spine surgeries here! Had I known!

    @Theresa Evans…thank you. I will surely look into that. I’m currently researching the mind/ body connection, brain/ pain etc and just today made an appt with a therapist who uses the Body Talk System for Chronic pain and CFS. I can’t wait to see her next week! After 14 years… I want off my meds in the worst way, if possible?! My pain it seems to be worse year after year. Is it my meds???

    @Don, my current doc of 7 mths has not decreased my meds…but past docs did. I’ve even been discharged simple because my pain warrants medication.
    I hold my breath every month until I leave the office with my same script. I’m waiting for the hatchet to fall anytime now. Why he hasn’t… I have no clue. But I simply suspect that some docs are not for us, but against those of us on meds. Meanwhile I keep praying that the tides will change in our favor. Or that I will find a better answer to it all.

  13. Maureen at 10:22 pm

    Roni! been there, done that… myself. I’m glad to see that someone else got a clue just as I did. My back has been cut open 4x now…had I known!

  14. Don at 7:41 pm

    Why have some doctors not yet reduced their patients meds yet??? I know of 3 ppl that don’t have cancer and are not dying whose doctor has not even talked to them about the CDC guidelines or having to reduce their meds,and I know for sure they are all way above the 90mme limit. WHY?????????the

  15. Theresa E Evans at 3:17 pm

    I spend my days working with people in chronic pain. Often it is in the back, but it can be head, neck, shoulders … as those of you who suffer with this know – it is complex. I practice and teach Essential Somatic Education. This modality works with the client’s nervous system. Pain is a problem in the brain and it is always about the body, mind and emotion. We cannot separate those components. From the inside-out we are not a body, we are sensation that is constantly changing. No-one on the outside can do anything to create meaningful and lasting change – the change must come from learning how to relax the tension that is causing the pain. When I have a client limping in 1 year after their hip replacement in pain, it is clearly a functional issue. The structure has been repaired, but the brain is still acting as if nothing has changed. I am talking about FUNCTIONAL ISSUES – this is different than STRUCTURAL ISSUES that may require more invasive intervention. But even then – I have many clients who have had back surgery and then 2 years later, they require another back surgery – why??? because they didn’t deal with the functional issue (the way they are using their bodies) that lead to the pain in the first place. We need pain to alert us to danger – the problem is when it continues unabated. Then we start converting neurons that never noticed pain in the first place into neurons that notice pain. Our pain becomes larger. Chiropractic, massage, PT … these methods have their place – but they are based on someone DOING something to you – you are not integrating the changes. To make a lasting change requires active participation. Opioids, while useful – only mask the pain. I watched my brother-in-law who had a “failed back surgery” spiral down this path. He was on an enormous amount of all of the “big guns” – Fentanyl, MS Contin, etc. but it was never enough. He is actually doing better now that he has weaned himself off of most of his medication. I fractured my arm 5 weeks ago. I know pain. It occurred to me how horrendous this would be if I felt there would never be an end to it. I am just offering another possibility. Check out Essential Somatics.

  16. Roni at 2:04 pm

    I has a SCS in 2005 . It worked fine for about a year. Then it broke. They want me to try a new brand since mine was so long ago, but I had 10 staples to close my spine after the first implant. No thanks. Too many problems can occur after too have surgery for nothing. My two cents.

  17. Neldine R Ludwigson at 9:40 am

    I just wonder if a class action suit against the DEA’s war on chronic pain patients is a possibility. Every time I hear “OPIOID” instead of narcotic I want to scream. Really don’t appreciate being lumped in with the junkies who are looking for a high. It’s disturbing to have complete strangers call me an addict, they know zip about me or any other chronic pain sufferer.

  18. Maureen at 8:12 am

    Hi Ed, Thank you for your post and your fine efforts on our behalf.
    My biggest frustration at this point is that if the tides were turned toward
    the professionals learning to truly spend time listening and ‘discussing pain’ with the CP community…they would learn something immense and hopefully come up with better solutions.
    I also live in reality and know that that thought is nearly impossible to come to fruition. 🙂
    But, I believe that WE are the Pain experts.
    We ‘know’ our conditions inside and out, we know what causes our pain, we well know (and feel) the physiological processes that are going on in our bodies.
    Most of us have done sooooo much research to try to ‘connect our dots’ and we have found the correlations to our conditions. We just need someone to listen and try to understand.
    It is through your site (and research) that I have greatly benefited on my own Pain journey.
    I’ve gained great knowledge and comradeship, and more than anything…
    I’ve gained acceptance of and confidence in my own conditions, knowing that I am not alone in my painful world.
    I am ‘forever grateful’ for people like you, your staff and those who comment on this site. The support in itself is healing.

  19. kevin Mooney at 7:11 am

    Yeah! What about people like me who listened to the neurosurgeon and now after a failed low spine fusion with hardware I’m 100× worse in pain than before the surgery.

  20. Cathy at 7:04 am

    What good is a new book on pain going to do to help me? Ive had all my vertebra broke and I have cement holding me up thruout. Been on methadone for 13 yrs and now they pulled almost all of it away -by force. Im in constant withdrawal -Im sick and I sure cant do exercise any more-not like i used to. I think doctors have been intimitaded Mafia style and I also feel that they dont give a d— about what happens to the patient. There are no more “doctors” How now do I live without pain meds?

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