Are Pain Patients Ready to Accept Change?

Are Pain Patients Ready to Accept Change?

By Krissy Anderson

Kristine (Krissy) Anderson

Kristine (Krissy) Anderson

The world of medicine is changing. New companies and modalities are and will be a part of our world as time goes on. My hope is that pain patients will adopt positive attitudes.

As I watch and partake in social media posts, comments after articles and responses to studies, I see that many of us have become so focused on our medication, we aren’t giving much of a chance to what’s happening around us. Change, including alternate therapies and newly-invented treatments, is happening despite what outcomes find with medication changes and regulations. It’s all a matter of fact.

When big change happens in an industry — ours being the pain treatment industry — it opens up possibilities for new companies with new ideas. The possibilities for new businesses can include the illusive cure-all pink pill developed by Dr. Whom, to the mad scientist’s release of a glowing, green gadget a person wears on his head to “see” his pain and wipe it out by killing little yellow pain-beings with antenna and almond-shaped eyes via a game controller, to an important new and safe medication that works better than any morphine product we’ve ever tried. We are already beginning to see the possibilities, as ambitious young businesspeople churn out announcements for new products, services and support. That’s commerce and it happens every day all over the globe. I can only imagine the ideas ready to launch if/when medical cannabis becomes legal nationwide.

Change is in our midst and it’s going to expand. We need to decide if and how we are going to embrace it.

Having been in the computer industry since a laptop was a dance and a computer was the size of my house, I have seen change with thousands of new products gone to market, huge successes (when I’ve thought some ideas would a bomb), and the protection of secrets the Pentagon might have been jealous of. I’ve witnessed rejection by generations — attitudes by people who believed those of us working on computers at home were nuts and could never earn a living. And I’ve been right there with the guy who developed a product in his garage and became a bazillionaire.

What on Earth does the computer industry have to do with our medication crisis anyway?

Are we so focused on opioids that we are missing the big picture? Are we going to be the face in the mirror opposite the old fogy who rejected technology and missed out on the amazing Internet?

As a president once said (with my tongue in my cheek), “Make No Mistake.” I am not here to propose that you don’t need your medication! Without mine, I wouldn’t want to say where I’d be. But I am here to say: Read, listen and embrace new modes of treatment, even if you can’t afford them, even if you’ve already tried them, even if you hate the whole idea. Think about younger generations to come. How do you want them to perceive you?

Why should I?

Because eventually insurance will cover alternative therapies again and access to care will become leveled out in areas of the country lacking. Shifting education will come into play for med students so that they get more than two hours of training on pain management. The wrongs that have been committed by government officials who have special interests will shake out, at least to some extent.

Opioids aren’t going anywhere! Will they be prescribed for you? Obviously I can’t answer that. The fact that opioids will always be in use for those in high-level chronic pain is mentioned in all the government documents we have been fighting against. The articles and statements you see where a doctor or an official says opioids should never be used, or they don’t work for pain, are just trash. Pay no attention – move on.

A lot of the reasoning for the continued use of opioids has come from the very social media users, writers and researchers that I mentioned before. Many are you! The moral is, keep fighting, but be open to learning about new ideas, because you can’t take back the past. You can stay stuck in the moment. Or you can go with the times. And going with the times makes you a more informed warrior to whom people will listen and respect. But if you can’t accept what real change is happening, you will become that part of the generation which didn’t pick up the new computer and just start banging on the keys to figure out how to use it.

Understand I am not discounting those of you who do not have proper healthcare! I know there are so many pain patients who are stuck with regulations (such as our Veterans) that don’t allow you to get the right meds. I know there are those who can’t even find a way to get to a doctor appointment, and those whose docs have quit or been incarcerated, leaving you to withdraw on your own, and therefore, suffer needlessly without any medication. And I include those who are under-treated and under-medicated (and any group I may have missed). Keep on fighting. But what I am talking about here is embracing the changes that are happening before our eyes and be open to “the new.”

Focus on the whole picture so you can be an informed, supportive warrior!

In Part Two of this discussion I will give you some ideas and tools that help in accepting change with a positive attitude.

Krissy Anderson is an award-winning freelance writer who has several life-long pain conditions. Her work has been published for more than 30 years, and translated into 17 languages.

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Authored by: Krissy Anderson

There are 58 comments for this article
  1. John S at 8:05 pm

    That stinks and I feel for you brother.

    Yes it is nuts. 50 years ago the government said Marijuana was the worst drug on the street – worse than heroin. Now it’s legal in most states for medical use. I live in Pa and they just passed the Weed Bill last week and I’m told it will be two years before any patient gets a weed pill. Reserved for cancer patients at first and only in pill form.

    The country has gone nuts over the meds that we need to live a semi normal life.

    I don’t know how you feel about methadone ( used for chronic pain ) maybe you can get that just to see how it works on your pain. It will also keep you from going through withdrawal. Might even be free depending on your finances. Lots of pain patients are using it after getting shut off by their Dr for pain meds.

    I’m not a Dr but after 30 years I’ve seen a lot. I hate to know you are suffering needlessly when their are meds that work.

    I will pray for you and please hang in there. I’ve been in your shoes.

    Thanks

    John S

  2. krissy at 4:58 pm

    Thanks, I live in Florida now and have a great PM doc. He doesn’t take Medicaid, but I don’t mind. He’s fantastic.

    Thanks…

  3. BL at 3:57 pm

    Krissy, thank you for clarifying. Are you in Minnesota ? MA-EPD is different than the Medicaid with Medicare that I was talking about. The criteria and benefits are different because the person is working and they can’t be eligible for Medical Assistance under other beneficial categories. If/when the time comes and you are no longer receiving MA-EPD , you might be able to use the link below to help find a provider.

    Medicare.Gov Physician Compare-
    https://www.medicare.gov/physiciancompare/search.html

  4. HAZZY at 11:26 am

    Thanks John, for your comment !!!! So i saw a Pain Management Doctor Yesterday and guess what !!!! ZIP, ZIP, ZIP I HAD MY For Prescriptions. This stupid Opioid nonsense is nuts. So, i had to start to withdraw but im glad my wife had some Pain Meds put away for me.

  5. Krissy at 7:41 pm

    BL. I understand everything you are saying. I was on Medicare and Medicaid for 17 years. Respectfully, I know what you are talking about. The wheelchair is exactly what I told you. A ton of paperwork has to be done from the doc’s side, then you rent it for 11 months, then it’s yours. If you do the math, the rent is almost equal to just paying for the chair outright. There is about an $8 difference. Back a few years when I broke my legs, my wheelchair was free.

    Perhaps disability is different in some cases. I was on a program in Medicaid called MA-EPD. (Medical Assistance with outside income). It is a different system than what is just called straight MA. My doctors DO NOT take Medicaid with Medicare. And more and more are doing this, as well as becoming Concierge Docs.

    I paid my dues once, and I’m paying them again.

    Thank You.

  6. BL at 4:42 pm

    Krissy, when someone had Medicare & Medicaid, it works differently than the Medicaid that most are familiar with. When you call a dr, you don’t ask f they accept Medicaid. You ask if the dr accepts Medicare first, if they do, they you tell them that you also have Medicaid. Medicaid pays so very little that very few drs will accept it. But, Medicare pays well. What Medicaid pays when someone has Medicare also is the monthly premiums, co/pays and deductibles. That is called Medicare Savings Programs. Extra Help is what helps with prescriptions drugs. The co/pays are less than $3.00 for generics and not moe than $7.50 for brand drugs. Very few, if any, drs won’t accept Medicare just because you have Medicaid. You just have to know how to ask the question, so the person that you’re talking to knows that Medicare is your primary insurance. Spend down does for Medicaid does work a little differently. But you should not have any problems finding a dr that will accept your Medicare with Medicaid.

    It is common for drug plans to have restrictions and limitations on some opiates. You may want to look into your changing Prescription Part D plan. When you are Dual Eligible, which is what having Medicare and Medicaid is referred to , you don’t have to wait until open enrollment to change your plans.

    Medicare does have a cap on physical therapy.. But, there are exceptions if it is really need and the patient can benefit from it. I have put a link below about that. It will depend in how your dr writes it up. You can also appeal denials.

    I don’t understand the problem with the wheelchair. It may be the way your dr wrote the prescription. I know it is hard to believe, but drs don’t always know how to write out prescriptions for things so that insurance will cover them. Different insurance and different plans often have different requirements.

    Physical therapy/occupational therapy/speech-language pathology services-
    https://www.medicare.gov/coverage/pt-and-ot-and-speech-language-pathology.html

    Manual wheelchairs & power mobility devices-
    https://www.medicare.gov/coverage/manual-wheelchairs-and-power-mobility-devices.html

  7. Konnie at 2:50 pm

    Thanks Krissy

    Because as I’m lying here wrapped in heating blankets, crying and shaking from the pain and I’m wondering what the hell I’m doing this for when my pill bottle is in reach.

    I do it for HOPE.

    Hope is the anthesis of despair, and I have despaired at the injustices done with these new laws, I despair at the heartbreaking stories I’ve read in the comments and I wonder when it will be my turn.

    So I HOPE that LDN will work for me.

    And I took myself off opiates on MY terms.

    Also, I’ve been told I have the liver of an alcoholic. I’ve never drank alcohol. So when I read the work of Dr. pradeep Chopra on LDN with CRPS, and learned that opiates activate glia cells which in turn activate cytokines and other free radicals which in turn causes inflammation I began to wonder if I was chasing my tail.

    Then I read that free radicals cause fatty liver disease. So, in a very unscientific manner I put two and two together and HOPED that by reducing free radicals I can reduce the damage to my liver and pancreas which is also affected.

    And I HOPE that, if successful, I can share it with other pain suffers.

    I HOPE (and will work towards) the legalization of MMj in my state.

    The day I give up hope will be the day I lose myself and who I am.

    Krissy, I also want to thank you for your articles. I don’t always agree, but it generates conversation plus gives others a chance to share their story and knowledge on the subject. It’s very cathartic.

  8. Krissy at 9:24 am

    BL, co-pay amounts and length of time for physical therapies, wheelchair — you now have to rent it until it’s paid for then you own it (not a therapy, but another example of change). Basically some things aren’t covered and most are unaffordable for me (on disability). I have figured out also that Medicaid won’t do me any good right now so I stopped it. The spend-down was $15 less than my monthly income. If, for example I have to have surgery on my hand, I will determine if it’s worth it to sign up again. Even though my Rx co-pays would be less, I am afraid of the decisions they are making on opioid dose caps. Medicare even tried that on me a couple of times. The most stupid thing I’ve seen yet was when Medicare (Aetna) put a cap on my opioids (which later disappeared) and instead of telling me no, or cutting me down on dose, they just charged me more! Also finding a good doc who takes Medicaid in Naples is impossible and I’m not willing to change pm doc. Sorry, I rambled over your question, but physical therapy is the main thing for me. What I need would be very expensive.

  9. krissy at 8:59 pm

    Thanks for the comment. Good luck and keep us informed!

    At my stage of the game, I’m not going to go off my opioids (unless we all have to, of course). But I’m glad to see someone is trying that. I’m still a believer in the ancient, herbal remedies such as MMj and opioids in the purest form we can get.

  10. BL at 8:31 pm

    Krissy, if I understand you correctly, you’re saying that Medicare use to pay for some of the alternative therapies, but they no longer will. What alternative therapies did Medicare pay for you that that they no longer will cover ? Did you change your Medicare in any way ? For example, did you go from regular Medicare to Medicare Advantage ?

  11. michael wagner at 8:02 pm

    Konnie:
    My pain specialist uses a compound pharmacy called Infinity 888-414-5805
    I have a Medicare drug plan that covers what I have been getting, you might find this one might works for you , but very low cost along side of others. you wont believe how low cost they have.

  12. Konnie at 2:28 pm

    Michael Wagner
    I have just finished weaning myself from my opiates. My doc wasn’t supportive citing all of the painful conditions I’m living with. I’ve wanted to try low dose neltrexone (LDN) for a while now so at my last appointment I told him what I’d done and he decided to order the LDN for me.

    However, Medicare doesn’t pay for compounded prescriptions so I will pay out of pocket.

    And finally, I DO NOT recommend you do it without the help of your doc, especially after being on them for 20 years. I support your try and wish you the best if you decide to do it.

  13. Konnie at 6:42 am

    How can we unite if we pick each other apart. We each have something unpleasant going on in our lives. Some much worse than others. But individually we really ARE insignificant as far as the new laws are concerned.

    Terri is trying (and for my small part, so am I) to see the big picture here.

    There are MILLIONS of us…talent, intelligence, insight, passion and experience that combined could be a force to push back at this injustice.

    I’m not Pollyanna. I’m actually pretty cynical. But fighting each other won’t help anything.

    It is not idealism. It is fact.

    So I’ll paraphrase what Terri. Let us unite! Put away out differences and focus on our strenghts.

  14. Krissy at 5:51 am

    Hi Raz: I actually have been t through everything you just said over my 32 years of chronic pain. Please read the long comment I put in the comment area here, as well as the other articles I have written. You will see what my point is. I spend my time every day working from my bed, laying down, to try and help with this whole problem. Since I do get meds (at this point) I do this work to put one or two words here and there to try to at least do something about our situation, although for so many people like you, our message has been failing to get through. Now I see more articles from the big publishers that finally address the fact that chronic pain patients must be able to have access to opioids and be set aside from the addicts, false reported numbers by the CDC and other entities must be fixed, and doctors must be and feel free to treat patients properly. I pray and hope for all fellow pain patients that the future comes soon and we are properly medicated. But an open mind is a good thing. And yes, I’m scared to death every month when I see my doctor, that he’s going to say, “Well no more opioids for our patients!” I have tried suicide, but I woke up. I’ve had all the alternative therapies, but on disability and the way the ACA screwed up our insurance for the disabled, I can’t afford some of them that used to help a little (with the narcotics). My mobility is failing fast and my pain levels still reach 10+ on my meds. So my work as a writer and researcher is for all of us. I don’t get paid for what I do and I could turn my back and write about something fun, but that’s not in me — this is what I do. Please read more and I hope you will see where I’m coming from. My hope for you is that you are treated fairly. My aim in my work is advocating for the fair treatment of pain. Thank you for commenting.

  15. Raz at 7:31 pm

    Krissy, do not mean to be rude, but, you are one of few that are allowed any type of pain meds these days. On what side would you be on if at one of your drs appts, they said, sorry, we no longer rx opiate type medication? Obviously you have what most of us dont, an understanding dr, who understands your problems, but, many of us, with equally painful conditions, do not have it written in our charts, tho maybe verbally told that the only treatment that will help is medication, as we have exhausted all other routes, surgeries, other meds, procedures, , tens, and advil type drugs until we are left with the same unrelenting pain, and no alternatives. Hot showers at 3am, when nothing helps, tried every cream and potion, but, are left, awake for days, unable to even lessen our pain, and who once were on opiates for years, now, have been treated like addicts, looked down upon by friends and family, told to suck it up, now have no choice but, buy some relief on the streets, heroin, or finally suicide. What we would give, to only have some respite from the pain. If only we could use alternative treatments now not helped with insurance, we would glady add those to our shrinking bag of tricks to ease our suffering. Yes you are one of a select few that is lucky enough to have any kind of medication to help. Yes even with opiates , there is still some pain, but, consider pain with out them? Have you eer been cut off from them, only to be in extreme pain along with horrific withdrawals? Most likely not. Have you ever been without ANY relief? Most of us have been there and is now , “our” reality. Drs know we have documented problems, but, for myself, have been told, laughing as dr said, “you cant die from pain ” haha! We didnt ask for this, and if able to choose, we’d choose life, and enjoying it.

  16. Tim Mason at 11:03 am

    The CDC report are just “Guidelines” and are not “Regulations” Tennessee has it’s own “Guidelines” and they are not “Regulations” or Laws. Guidelines give the pain specialist physician ‘breathing room” to practice medicine.

  17. Sara at 12:16 pm

    Indeed. I’m not saying it’s universal, but I’ve had 50% of my docs lie in the past two years and the other 50% admit they’re lying to everyone else. That’s not a scientific study, but….

  18. Krissy at 5:48 pm

    I am aware of what you see in those words. I have lived a long and now skeptic life in this pain thing, but this “opinion” article is about hope for the future. Those things used to be covered — I used them long ago — and wish I could have lots of varying treatments right now that I already know would help me, but…insurance. If the government is taking away medication, which is ridiculous, then we have to hope to God they insure that we are covered for other things. It’s just a hopeful forecast, not something I profess to have pulled from a crystal ball. ( I wish I had one, and all of us had one — then we could write our own fairy tales. The wicked witch of the North was conquered.)

  19. BL at 11:37 am

    Nekia, you having to see your dr every month is your drs decision. The law has not changed, a dr can still write three 30 day supply of Schedule II meds at one office visit. If you are low income and can’t afford your Medicare Premiums, copays and deductibles and might need help with your prescriptions, I have put two links below that might help you, if you are low income.

    Regarding the article. In Louisiana, Medicaid will not pay for a pain management dr. It would be interesting to know how you expect government and private insurance to pay for the alternative therapies, when government doesn’t have to pay for pain management drs. By the way, alternative therapies are not paid for either by Louisiana Medicaid. There are other state that their Medicaid programs do pay for pain management dr, but none of the drs are accepting new patients. There are restrictions and limitations on pain meds in almost every state medicaid program as well as other meds if you also take pain meds.

    Medicare Savings Programs-
    https://www.medicare.gov/your-medicare-costs/help-paying-costs/medicare-savings-program/medicare-savings-programs.html

    Save on drug costs-
    https://www.medicare.gov/your-medicare-costs/help-paying-costs/save-on-drug-costs/save-on-drug-costs.html

  20. Osteopath Twickenham at 3:35 am

    “Because eventually insurance will cover alternative therapies again and access to care will become leveled out in areas of the country lacking.”

    Interesting.

    Thank you for the eye opener.

  21. Nekia at 9:59 am

    …I understand something needed to be done, however, nothing was put in place to protect us from these Drs using the new law as an excuse to make the patients come in monthly when it’s not necessary. They’re using a loop hole and now bilking the government and me out of extra unnecessary visits to get more money. I guess they figured since the patients have to come to the office to get their prescriptions from the front desk let’s capitalize on it and make more money off them by requiring them to see us. Why am I now having to pay for a visit that will go over the same thing no changes. I don’t have a problem paying every 3 months, but now every month for the doctor to just call me back and spend 5 min in the room after I’ve waited 2-3 hours. Nice work DEA & CDC

  22. Nekia at 9:40 am

    I’m 40 years old, disabled and on Medicare. I use to receive $1360/monthly, then eff 3/1/16, Medicare A,B,Rx coverage dropped it down to $1,180/monthly. I have been on hydrocodone with acetaminophen for nearly 10 years now….due to chronic upper and lower back pain due to a fall down 20 concrete and metal stairs years ago, sciatica, mild degenerative disk disease, arthritis, herniated and bulging disk,plantar fasciitis,, and neuropathy, chronic migraines since I was a teen which worsened after having thyroid cancer and am now left with chronic hypothyroidism as I no longer have a thyroid, amongst other issues. I’m overweight now due to the up and down weight gains from thyroid disease and now am on blood pressure medication which is well controlled. I use to be able to get a 90 day supply and only had to see the doctor every 3 months like my other specialist and get my refills at those visits. After the new change with hydrocodone, I was forced to go to the office monthly to pick up the prescription…which I was ok with doing because I didn’t have to see the doctor meaning no $50 co pay until the 3 month follow up., and I didn’t have to spend 3 hours in the doctors office, leaving worse off then when I came to to the prolonged sitting and waiting that put more of a wear and tear on my back and legs. I called the office 2weeks ago for a refill and was informed that I now have to see the doctor monthly to get a prescription as they’re aligning with community values. I asked them why should I have to pay an additional $100 for them to ask if any things changed in which 9x out of 10′ nothing’s changed and if so its probably worse. I’m on a low income budget and have to pay $30 for one month supply, now that changes to every month $80, not including gas money to get there (21 miles one way) so round it up to $100/mthly which is now going to take $1,200 a year meaning one of my disability checks is gone for one doctor. I asked them why are they punishing the disabled and the phone rep agreed. I’m okay with having to take the urine test when picking up my prescription because I’m only taking prescribed medications as prescribed. I asked is it a new
    Law that they have to see me every month and was informed again that they’re aligning with community value. How is that because here u have a patient who’s not abusing, and following Drs orders, on a low budget, on disability, and can’t afford to do all that traveling, pay the extra co pays, etc…

  23. BL at 4:02 pm

    HAZZY, some drs tell patients that they can no longer prescribe opiates when that is not true. What they should say is that they have decided to not prescribe opiates to that patient. No dr is going to let their DEA number and their federal and state CDS license go because there is no reason to. Just because a dr can prescribe opiates does not mean that they have to.

  24. John S at 3:25 pm

    She can’t even prescribe a schedule 4 drug – like Xanax or a cough medicine with codeine or hydrocodone. Not much good without that license So she’s probably full of cr*p.

    I would rather the Dr. just be honest and say ” I’m afraid of the DEA ”

    John S

  25. Michael Wagner at 3:02 pm

    To add to my last post, I seem to get pain specialist that if they can not get you relief with there flora scope or ha pill you are out of luck, there is a lot more to helping a person in pain other than those two options, but if there is no money in it your out of luck, so the new pain laws set by WA state and copied by the CDC .
    should have had other options that pain providers had to follow other than pills.

    best
    Michael Wagner

  26. Michael Wagner at 2:13 pm

    I have a similar pain problem that Bonnie has, I don’t have anyone t I can talk about pain , so I am going to ask you all for some help, These opiates over the past 20 plus years have destroyed my organs, I I keep asking the pain specialist about changing my pain medicines, I have had 5 back surgerys , fused in all the-lumbar, and 3 cervicle surgerys 3 levels are of used I along with adhesive , when a dr in Seattle got a screw rapped around the L 5 nerve root and the tip of the screw well into the spinal canal, and sewed me up that way . then he left for 6 weeks to finish his schooling, no one else would touch me until he got back. I was offered $500,000 and I didn’t take it. I did well or as good as expected until 2011 when this WA state set the rules , on pain medicine, and cut what I had been taking in half. it has been one year with the pain specialist I am going to now. I thought well of him , but now I am having second thoughts. As in the last year during the last 9 months I have had 9 injection , Only one of them helped but he billed $1400.00 and up on each injection . OF course a follow up appointment with each of them , now that he has got all the money out of me and my insurance company, he has a P A see me , he don’t have the time, he said next month we will talk about changing the prescription. Well they told me the same thing again.
    if I can not get some relief , why should I even take anything, I have been seriously thinking of quitting them all together, I think I could stop taking the kopiates with out to much problems. This is my proble that I need some help with, Is it a wise
    Idea? As if you get no relief what so ever why take them, I have lost all the testosterone levels, my kidneys have large cyst on them. have gall stones, Have urine problems , can’t hardly walk, can’t think straight anymore, as you can see that on some of my past post, I don’t have depression, just a little pissed off at the system,there not helping me, only helping them selves to the money, even a 10 minute appointment has been billed at a l40 minute appointment.
    I have had it. Can any of you give me you advise, please.
    sincerely,
    Michael Wagner
    last year my primary care dr wrote 3 months of pain prescriptions 4 Tim

  27. HAZZY at 12:32 pm

    GLAD TO HEAR THAT !!!!! MY DR IS ALWAYS POOR MOUTHING. SHE TOLD ME YESTERDAY SHE CAN NO LONGER PRESCRIBE OPIOID PAIN MEDS AND THAT I HAVE TO SEE A PAIN MANAGEMENT DOCTOR !!!!

  28. Krissy at 9:02 pm

    Hi Jean. I hope you will read my article and my follow-up comment a little more closely to see where I stand.

    Thank you.

    BTW, I always like to read your comments on articles 🙂

  29. Maureen at 4:40 pm

    Hazzy, Many internal doctors now have signs on their doors or in waiting rooms saying NO OPIOIDS ARE PRESCRIBED HERE. Even though they have patients they have seen for a long time and still DO continue to prescribe for.
    Basically… many are now ‘choosing’ to not help chronic pain patients who warrant meds for treatment IF they are a new patient to them.
    Some GP’s will not even accept you for general care, even if you are followed by a pain specialist for your meds, simply because you are on Opioids!!! It’s certainly discrimination. And it is wrong. But they too are fearful of the lawmakers and addicts.
    Many are now choosing to simply stop writing Rx’s for pain due to the same issue that we are frantic and concerned over, even, as in your case, if they’ve been prescribing for you all along. It has happened to me 4x in the past 17 mths. by Pain Management Specialists!! Talk about emotional stress!! They to don’t want the issue in their practices. I have been told by each…’you have to find a doctor who writes scripts (yet they won’t even dare to refer me to anyone), we only do interventional medicine’. NOT true though…I know several patients who have gone to them for years and still get Rx’s. This is the new way to treat ‘new patients’. Very scary.
    I am currently on my 5th doctor now in that short time…who seems to not to be tainted yet…she’s fresh out of school and a breath of fresh air! I feel safe in her care, for now. I’ve only seen her 2x so far and I hold my breath each visit.

  30. K. Rhoma at 3:12 pm

    Krissy,
    Thank you for your follow up comments and clarifications. Well said. I meant no offense…but glad you raised the passion in those (or the one) of us who usually feel like hiding and standing in the shadows.
    kRhoma

  31. John S at 2:48 pm

    Last time I looked it was $731.00 for a 3 year renewal.

    Without that license a Dr can’t write for any controlled drug. A small price to pay for any MD

    Thanks

    John S

  32. Jean Price at 2:44 pm

    As I read this article and these comments , I’m reminded of a quote a friend recently shared with me. “All change is not growth, as all movement is not forward.” (Ellen Glasgow). My concern lies with not only people with chronic pain, but also those with acute pain who are being impacted by this new trend in “down with opioids” health care. I saw a comment the other day from a woman whose sister in law was not given any pain medication post surgery for a hysterectomy. This is just plain poor medical practice! Pain creates inflammation which creates more pain and this vicious cycle can actually delay healing. The recent ad that showed a teenager obviously in the dental chair with the headline “Would you give your child heroin for their wisdom teeth extraction?” really speaks to the fear mongering going on here, not just change! Change of any kind is fraught with losses, even “good” changes…and we are in a grieving process about this, I believe. Whether it is good or bad depends on the individual circumstances of each person…and how much collateral damage is done to achieve a better way to treat pain. There is no doubt in my mind it could be achieved with less stress and less suffering if the approach was different. But pain is not the issue…addiction is, so the approach wasn’t different. And the mushrooming consequences are pretty out of control. Change is at the heart of life. Yet, all change is not beneficial or necessary. It remains to be seen what good results will eventually come out of this. And for us living in the here and now…well, we may just end up being the sacrificial lambs. And none of us voted for this!

  33. HAZZY at 10:28 am

    DO, INTERNAL MEDICINE DOCTORS, HAVE TO PAY A FEE EVERY YEAR IN ORDER TO PRESCRIBE OPIOID MEDICATION ??? MY DOCTOR TOLD ME SHE CAN NO LONGER PRESCRIBE OPIOIDS, I DONT UNDERSTAND, IVE BEEN TAKING THEM FOR 10 YEARS THEY ARE LOCKED IN TO DIFFERENT SAFES…….CAN SOMEONE PLEASE GIVE ME AN ANSWER ???

  34. Krissy at 10:05 pm

    Bonnie and others: Thank you all for taking the time to comment.

    I see that several people here believe I am suggesting we go back and start over with our failed alternative therapies, take aspirin and pay out of pocket because of the drastic changes in insurance coverage. That is the opposite of what I am saying. Older therapies have hurt millions of people, with spinal cord damage and so much more. Using physical therapy as an example of alternate treatments, in the 80’s and early 90’s I used to get sent to PTs a few times a year. I would always get hurt. Every time. However when I went to a PT about 18 months ago, I learned that the therapist had been trained differently (and I happened to get a good one). When she said, don’t do this exercise if it hurts, I did a double-take. Remember when it was “no pain, no gain?”

    Not every therapist is good for us just as not every doctor is good for us. My pregnant daughter went to a therapist for sciatica due to pregnancy three weeks ago and he broke her pelvic bone.

    I am not against opioid therapy. If you read where I said I wouldn’t know where I’d be without mine, then you might understand what that means. I am on a high dose of Fentanyl and Oxycodone, plus 800mg Ibuprofen. My doctors have it on my chart that it is “for life.”

    Yes, it would be great if something magic, pink and sugary came out. It hasn’t. That’s where the business analogy comes in. There are new products and therapies being introduced to the market as we speak. In my article I am talking about watching, listening and being open to what lies ahead of us. If I worded it so that it sounded differently, my apologies, because I believe this subject is an important one.

    As a researcher, I spend several hours every day reading, taking notes, writing and hoping. I am as angry at the government as you, and have been advocating for the fair treatment of pain for a long time. If you have a moment, look at my other articles on this site. The one where I wrote an open letter to the presidential candidates might give you a glimpse of my own anger.

    I am no different than you. I do my work lying down in bed. I can type like hurricane on my side. I take opioids, and I’m one of the lucky ones with a doctor who understands this whole mess. I get a quality of life that erases the screaming unfathomable pain. But if I start working around the house, I get about 20 minutes at a time, then boom, back in bed. If I go out to the pharmacy and forget to put my back brace on, by the time I get home I can hardly breathe from panting and feeling nauseous due to pain. You know this story — we all live together in some way or another.

    Please bear in mind this is an opinion piece; it relates to what some of us are going through. What I am seeing in my research are differences happening right now the pain world. This article is about suggesting we pay attention and be open to new things, not old things that didn’t work. That would be ludicrous.

    I’m on your page and on your side. I just hate to see when one’s focus is so deep into medication only. Things around us are happening and there will be change. With our tired psyches, it’s very easy to just throw up our hands and say, enough! Try to read into my article objectively — that it is about hoping for good changes, hoping for adding affordable insurance-covered things. Fight for your rights but be informed. We have different opinions and this is how I express mine. But I’m not here to tell anyone what they should be doing.

    Since the “war on drugs” became our war, and since we are so frustratingly excluded by media, governmental departments, studies and interviews, we just need to fight with an informed, positive attitude. Professionalism goes a long way, and we have a long way to go. I am not speaking to any one person here — we are all different in so many ways– but we are all the same in many ways too.

    My thoughts on preparing this series of articles come from what I see on social media and on comments after articles in the online/print media. I want to see us fighting together. The more we write about it and talk about it, the more we may just be heard someday.

    One more point on alternate treatments: I am again saying that we need to have hope for future treatments and we need to pay attention to new companies touting new products. And we need to try to be upbeat — which is very, very hard. In fact, we shouldn’t have had to expend our energies on this damned pain thing in the first place. My boy/best friend’s ex-wife committed suicide two weeks ago. I read about two suicides yesterday. The rate of taking our own lives is escalating because of the war on drugs. The very essence of the policies in this war has fueled the illegal and abuse problem. The government feeds the addicts, ignores real patients and continues to believe they have it right by cutting OUR medication. Most just can’t see that their efforts are completely backward. We have become the losers; we have been the ignored; and we are the very people who must be treated with the drugs and therapies that work best for each of us. The addicts must be treated with the treatments that work best for them.

    But we’ve all been dumped together by society and government and media, friends and family. People believe we are addicts, and don’t understand the difference between addiction and dependency. They don’t give a thought to the fact that their non-addictive medications make them dependent too, if they are on them long enough.

    I know you all know that story well as we continue to be the chorus in the play, while the misinformed and the voices that do get heard are the stars in the headlines. The social aspect of chronic pain clinically adds more pain in three ways — pain in the body, pain in the brain and pain in the heart.

    Please keep the comments coming. If you are angry about what I’ve said, then that’s your right, your opinion. But I do want you to know that I am sailing in the same, old tired boat that you are.

    Thank you for reading.

  35. Bonnie at 7:51 pm

    Once again I have to agree with Danny. I have tried the Natural ways too. Some of them I had really bad reactions to. I am allergic to almost everything that grows. I can’t take NSAIDs, steroids, Ultram. Methacarbamol/Robaxin… Because of bad reactions to one thing or another. Ranging from stomach bleeds to breaking out in oozing sores. And how many wonderful new things do they come out with and a few months later you start hearing the lawyer commercials on TV about the lawsuits pertaining to the latest wonder drug. They are putting these things put too fast these days for them to be truly tested. Give me something that has been out there for awhile and not hurt someone. Because in my case, if something can go wrong, it will go wrong. LOL But my pain Doc could vouch for me that I have tried everything they have thrown at me. And a few of them made my disability permanently worse. I see a Pain Psychologist every 2 months too.

  36. BL at 5:43 pm

    Nancy R, I’m not trying to discourage you from trying new things, but beware that Naloxone therapy and buprenorphine therapy are used to treat drug addiction to opiates. Having been prescribed Naloxone and/or buprenorphine will label you as having been treated for drug addiction and no dr is going t want to treat your chronic pain. Even if a dr tells you that they are prescribing it to you for chronic pain, that does not mean that other drs will be able to get passed you being prescribed medications that treat drug addiction. Once they or a staff member sees that you have been prescribed these meds on your Prescription Monitoring Program Profile, they aren’t going to take the time to look furthur. I know that some drs are using these meds to treat chronic pain, but that does not mean that other drs that you see in the future will want you as a patient.

    If you have a drug addiction problem, I apologize for misunderstanding your post.

    It also does not mean that the dr will write that he is prescribing it for chronic pain and not drug adddiction in your medical records.

  37. Sara at 3:52 pm

    I think I know where this post is coming from, but you’re sort of speaking to the wrong choir. The patients who *should* be allowed to continue opioids are the ones who are already open to everything, have tried everything and/or don’t have any other options. The correct response to the “opioid crisis” would have been to shut down docs who were actually overprescribing – the ones who weren’t educated or specialized enough to realize that there were other options out there to try before the opioids. (And of course shut down the addicts – but that’s really a different issue having nothing to do with pain patients). But of course, the gov’t has to swing the pendulum and shut everyone down. In addition, I think there are numerous additional ways to combat the “opioid crisis” if they had just asked some smart creative people and not been influenced by politics. For instance, the opioid strategy at Headache on the Hill this year is super smart. We can all get behind supporting large increases to medical research on chronic pain so that opioids will be obsolete someday. It’s a positive message that addresses the real problem and *should* also placate the politics of the issue (not that I’m holding my breath). The catch is to make sure our medicine isn’t taken away from us while we’re waiting. And waiting. And waiting. Anyway, check it out: http://allianceforheadacheadvocacy.org/wp-content/uploads/2015/04/HOH-2016_Senate_Opioid-Leave-Behind.pdf

    It’s unfortunate because now we have to put all of our energy into keeping our meds, instead of advocating for the real issues – finding new treatments for our pain and educating the public about what chronic pain really is all about. In the end, I think your post is unnecessary & is just going to p*ss off the people you are trying to reach. You should have started with part two.

  38. Jane at 1:39 pm

    I also think the letter was informed, yes, we should be open to new ideas, but if we have a condition that has no treatment, I repeat, NO TREATMENT, we should be heard too. I’ve been open to different physical therapies, meds, discussions with pain doctors and psychiatrists, all dismissing me with “there’s nothing else I can do for you”, OR worse, their treatment actually made me worse, how can I not panic with the thought of not being able to get the medicine I need to function. Doctors have education, experience and knowlege, why does a government agency trump that? I’m not an addict, I’m just trying to live my life as normal as possible, and without my medication, I can’t. No amount of meditation, yoga, or “zen” will change anything about my condition, CRPS. There are alot of other painful conditions that nothing but prescribed pain medication will help. It gives us some “normalcy” to our lives. Please, somebody, LISTEN to us!

  39. Bonnie at 1:21 pm

    I agree with Danny. I have been dealing with pain for over 44 years or more and I have tried everything the doctors have thrown at me. I have let them stick needles in my spine. Wires up my back. Put a paddle of wires on my spinal cord and battery on my spinal column and a battery in each butt cheek. Now my back has more pain and my butt cheeks have nerve damage and their wonderful pain control did not work and I went through 3 useless surgeries. And another to take the battery off my spinal column. The paddle of wires is still on my spinal cord and keeping me from having MRIs. Tried BioFeedback, Injections, Physical Therapy, That thing where they stick wires up your back and burn your nerves to kill them. None of them worked. I tried drugs that made me depressed and made me not want to live. I tried drugs that shut down my urinary system. I have done it all. I had found a drug regime that was working for me and had been for a couple of years. I was content. Then because of the drug abuse furor and the cost hikes over it. Insurance refused to pay for my drugs. Then the government starts messing with our Meds. So I will not be jumping on the bandwagon for change.

  40. John S at 12:55 pm

    I’m a person not a customer. I’m not looking for the same car I had 5 years ago.

    Change – what’s changed ? One thing so far; Opiates should only be for cancer,

    I live in Pittsburgh where UPMC is the MECCA of health care. My UPMC doctors tell me there is no cure for what I have. I have tried every modality available no matter the cost. Nothing comes close to medication for my pain. I won’t live a life in bed but if they come out with some new treatments I will pray that it works.

    This whole issue is a war on drugs and to hell with the pain patient that claims to need opiates. My body is failing due to what causes my pain and the pain is debilitating.

    I’m not just going to sit with a happy face and hope my pain gets better. Yea change – ain’t it great !

    John S

  41. Krissy at 12:50 pm

    Martha, of course you can copy it, and thank you for your comment.

  42. BL at 12:05 pm

    I agree with most of what you have said here. But, I don’t agree with “Because eventually insurance will cover alternative therapies again and access to care will become leveled out in areas of the country lacking. Shifting education will come into play for med students so that they get more than two hours of training on pain management. The wrongs that have been committed by government officials who have special interests will shake out, at least to some extent.”

    I see more and more things being denied by insurance companies. You can appeal, but that does not mean that you will win. The insurance companies are going to want strong proof that these alternative therapies work for the vast majority of patients. A group of people saying that they work will not be enough. I don’t see what the power that be would have that they can offer the insurance companies to make them want to take a chance on losing money. The drs that choose to tell their pain patients that if they want pain meds they also have to have alternative therapies, will lose patients to the drs that don’t force alternatives on patients. For some patients, if their dr says they have to have these therapies and insurance won’t pay for them, the patient will pay for them in order to get the pain meds. So the insurance saves money by not paying for these therapies. Some of the traditional therapies like physical therapy already have restrcitions and lmits on them by Medicare and most private insurance companies.

    Drs receiving more education in pain management, I do agree with. They will be taught that opiates are best used for cancer related pain that is terminal and end of life situations. Non opiate therapies are best used for acute and chronic pain. They will be taught that is the patient doesn’t have the opiates, that they will be willing to do other therapies. Frankly, this is already being taught to tomorrows drs in some medical schools and teaching hospitals.

    The restrictions to Schedule II meds and the stronger Guidelines and Recommendations for prescrbing them aren’t going to be reversed. If they were reversed, that would be admitting that a mistake was made when they were tightened and that is not going to happen. The restrictions are being made to cut down on the number of overdoses as well as addiction and abuse. If the restriction were reversed, the numbers would go back up.

    Maybe I am misunderstanding what you’re saying regarding these things I have mentioned.

  43. Jeremy Goodwin, MS, MD at 11:35 am

    Dear Krissy,

    I appreciate your essay as refreshingly different. I know well under what circumstances opioids appear to be one of the few options available for many that will or might work, just as I know well how few of the options have been tried when someone is referred to me already on them and too soon. There have been times when I wish that I had not prescribed them for a variety of reasons.

    I was pleased to read your wise words because they actually offer hope rather than simply re-dressing old and often ineffective or tired ones in new clothing. Your enthusiasm and optimism is catching.

    I have been and remain extremely critical of the way this whole issue of opioids, pain control, addiction and overdosing has been handled by the government and jumped on my so many clinicians only because they don’t want to help such suffering patients anyway. The whole response to the issues involved is questionable and involves racism, lack of empathy, false motives for change, truly dreadful science that fails to separate and address well the needs of multiple subgroups largely thrown together as one without empathy or concern, and is puzzling given the resistance to change r apathy where other significant causes of loss of life are concerned (gun control jumps immediately to mind). I have dealt with the underhandedness of a state board and appreciate the pressure that many of us fear and / or appreciate through experience. I see the patients’ express their fear and scream their anguish. It is being ignored.

    You at least bring new ideas and a genuinely wise perspective to the table. And I welcome that. I also think that you may be right. Thank you.

    Jeremy

  44. Nancy R at 10:56 am

    Krissy…..I am open to new ideas and new treatments. I use many as an adjunct to pain medication. Some I would like to try but are unavailable, not covered, too expensive. I have found myofascial release helpful..now at $100 an hour..cant afford the 2-3xweek that would be most helpful. I do self therapy that helps. Would like to try hyperbaric treatment, buprenorphine therapy, Naloxone therapy, and electric stim therapy. But who does it and where????

  45. Zyp Czyk at 10:34 am

    I have had mysterious pain and unusual fatigue most of my life due to a genetic connective tissue disorder (EDS) and, due to my excessively curious nature, I have been, and still am, searching for a “fix” most of my life.

    I started following “new” ideas 4 decades ago. In the 70’s I was trying to address my ills with all kinds of diets, and in the 80’s I was one of the first people I knew to use chiropractors (which damaged me more) and go to acupuncturists (the only honest one told me “I cannot help you”).

    I was always so terribly hopeful that the placebo effect worked to lessen my pain for 3 days no matter what the treatment was. I have a whole list of amazing “3-day cures”, which turned out to be the placebo effect and then wore off after 3 days.

    I jumped on the bandwagon for every new treatment I heard of, including powerful magnets, herbal infusions (including dried earthworms), puslarting electrical fields, various kinds of “cleansing” (like drinking 2 cups olive oil blended with a grapefruit), biofeedback, yoga before it was popular (damaged my joints a great deal), and Pilates. I am not going to repeat any of these trials because many harmed me and others were ineffective even after spending hundreds of dollars.

    I never stopped exercising even as my body started falling apart. I was still able to bicycle 50 miles in a day even when I’d already started taking opioids for the inevitable pain from sitting still at work. Now I can only walk, but I still get outdoors at least once a day.

    I’ve had epidurals and surgery too, all to no avail. I know exactly what is causing my pain and it’s completely physical/mechanical: my joints get out of alignment, my organs aren’t anchored correctly, and all tissues in my body are defective. Relaxation, massage, or sticking needles in my body will not affect such pain.

    I agree that psychotherapy can help me “deal with it”, but I’ve used this method on and off since I was a teenager and my pain still became intolerable without opioids.

    If the latest pain treatments offered something truly “new”, I’d undoubtedly try it, but from what I see, it’s a mere rehashing of older “alternative” methods that were fiercely condemned by the medical field for decades – until they suddenly became the recommended treatments for pain. As they say, “been there, done that.”

    I can’t give up my opioids (which I hate being dependent upon) until I find some other method that works, and so far, I haven’t seen any truly revolutionary treatments that can offer me new hope.

    But, I’m an engineer at heart, and I will never stop searching for a “bug-fix” that will allow me to reduce, or just make tolerable, the pain from my broken body.

  46. K. Rhoma at 10:19 am

    Krissy, I appreciate your message but believe you are comparing apples to oranges. I can say that thousands of us would wear the little hat and antennas if it worked! As for myself (and I believe I speak for others) I have spent thousands upon thousands on alternative treatments in addition to the few choices Western medicine has given me.
    I’ve paid for physical therapy my insurance wouldn’t cover, had Calmare treatments ($1800.00), “energy” work to release trapped emotions, lotions, potions, and herbs, essential oils, and Tapping (which surprisingly is working). I own a SCENAR and a P Roshi.
    I’m an RN with 30 years experience, so I was educated in the Western philosophy of medicine. Why have I tried all of these other things? Because when one is wracked in pain begging God to kill you, and your only choice is painful injections, medications, most of which are being used off label, opiates, and surgically implanted devices in your spine with a short track record, you try other things. To show my hope in the future, I’m enrolled in a study for an infused biophosphotate – donating my time, blood, urine, and body to further a hope for an alternative.

    All alternatives mentioned have had their place in my treatment. They are what I’ve called my “tender mercies”. A small amount of relief is relief nonetheless.

    So, yes. I think most would embrace an alternative. Let’s face some realities however.

    How long will it take for doctors currently in college to be adequately and accurately trained on pain management alternatives in schools funded by pharmaceutical companies? How much money and how long will it take to get FDA approval for new drugs and treatment? And perhaps most importantly, how much will it cost US?

    I’m lucky that I had enough savings before developing CRPS to try alternatives. Many don’t. My cost co-pay for Lyrica is $170.00 a month. Opiates? $10.00. Look up the possible side effects of anti-seizure meds. Now look up opiates. Used properly, opiates are safer by far! And now we have a nationalized healthcare system to look forward to.

    We don’t have some kind of old fashioned loyalty or hold to opiates, nor are we afraid of new fangled things. We actually are a brave bunch of people. Opiates are inexpensive and they work when administered properly.

    Dear lady, respectfully, comparing chronic pain management to the computer industry was a nice try, but missed it’s mark. As you know, chronic pain includes loss of income, mobility, and independence. There is debt and worry, disrupted family dynamics and loved ones are looking on as we cry out. I do have hope. But I also have reality.

    One last note: your statement about some of us left to withdraw because of incarcerated physicians was out of place. Most of us go to reputable physicians. We are honorable. Most physicians are trying to adhere to the demands placed upon them by the DEA, media, and patients. For fear of incarceration, many have quit seeing pain patients. It is quicker to treat a sore throat and you don’t have to deal with the complex issues of the patient with chronic pain.
    Hats off, cudos and admiration goes to those who are staying the coarse with us. If this is you, dear Dr. NP, or PA, Thank you.

  47. Connie Fuller at 9:57 am

    As a chronic pain patient, I’m totally for treatment other than opiates. I don’t like the way make feel. The problem is that the government and its financial beneficiaries are doing their best to take away options that work. Natural options are out their (not for everything), but they’re under attack and trying to be banned and seen as evil. I use Kratom (part of the coffee family) and CBD oil. I don’t get opiate brain fog or slur my speech. I don’t get so lethargic and sedate that I can’t function. It’s because of these that I’m able to work full time and contribute to society.
    Why do they focus only on NEW treatments when those that are hundreds of years old and relatively harmless are available. It’s all about the money.

  48. Deb at 9:34 am

    Krissy
    I completely agree with most of what you had to say. I will try anything because right now Opioids are my only choice for relief but I want more. I want a cure. I want something that works better. If I don’t keep an open mind then I can’t find something that is a better option. The one point I disagree with is If I’ve tried it before unless there is something new or different I won’t try it again and I don’t think I should be expected to. I get so sick of the doctors that want me to keep trying the same things that don’t work It’s not fair to me
    I’m really looking forward to reading part 2.

  49. Dave at 9:28 am

    I think some change is inevitable- but as to what those changes will be- I don’t think we can say with certainty.
    My concern is that each individual that wants to have a say over the future is given a fair chance to do so in our society. I think it is clear- Big Brother- and Big Brothers friends in industry- have failed people in pain. They, naturally, take the position that I couldn’t be more mistaken. And I don’t think that will change. After all, as the saying goes, the more things change the more things remain the same. And so I expect industry and Big Brother to continue to be far removed from the voice of people in pain. I expect them to continue to be focused on dominating individuals in pain and profiting such. I don’t see that those in control of pain care are evolving into better and more caring individuals. People in pain have an opportunity now-to regain some control over their pain care- and hopefully they will act energetically so that they don’t continue to be subject to the flawed designs of others Failing that – the future is likely to be deja vu all over again- the more things change the more they remain the same.

  50. Carole Porter at 8:09 am

    Thank you Krissy for reminding to expand our “scope”. I needed to read this. Have been experiencing a flare for too many months and I tend to get tunnel-vision. You make a good point!

  51. Angel at 8:05 am

    I don’t know one pain patient who hasn’t been forced into dangerous expensive and time consuming useless worthless demeaning therapies because our doctors hear it will help. Years of physical therapy for my chronic leukemia I was told kiegal exercises would relieve my chronic leukemia pain. When I refused to go back my treatment was discontinued. This type of forced coercion and imbalance of power between patient and practicioner is one example of why patients have had it.

  52. Maureen at 7:53 am

    Krissy, Thank YOU for your humor and for your ‘encouragement to accept’ new and different ways of dealing with pain. Wonderfully written and expressed!
    I am a 25yr chronic pain person..have been on meds the last 10yrs. or so after a 2004 MVA and having had 4 spine surgeries etc etc.
    I lived in San Diego for the 1st 15 yrs of this ‘life with pain’ and couldn’t help but live a very healthy existence there both pre/post spine injury (I was a nurse and it began with lifting a patient in 1990), and practicing power walks and yoga regularly to help me along.
    That all came to a halt after my traumatic auto accident and the day my life drastically changed in 2004 on the east coast. What a trip its’ been ever since!
    I’ve tried over and over to get back to yoga…but for one reason or another…it always brought on more debilitating pain, no matter how easy I took it, so I would put that idea on a shelf.
    Yet…I would try it again in a couple of years 🙂 only to be defeated again.
    I’m not one to give up easily but…we all know how ‘pain rules’! And this journey of learning and experiencing has not been an easy one for sure.
    My body and my pain has become complicated over the years.
    I wake each morn with immediate tears in my eyes (already looking forward to the end of the day), I have to take a deep breath and slowly pull myself up to sit and ‘first things first’… I take my pain med.
    And then wait…wait for it to help me move on…barely move on, that is. But, I could not move nor live without it.
    With all of this said and since the opioid, etc etc reports have been gushing fear into our apparent ‘balanced enough’ lives on Opioids and upsetting us all to the MAX (talk about anxiety!)…I did just what you have suggested and it surely is not easy.

    I started going to a ‘chair yoga’ class (and I hurt every time!) and now I am seeing a Reiki Master (it kills me to stay still and sit there, more pain!)…and I am making myself remain positive to find another way of helping me through my day.
    I won’t stop unless I can’t get myself there (ie: if meds are discontinued).
    I am doing my part to help myself find a way to deal with what may come my way re: medications.
    I already know that if meds were taken away from me…I could not get to yoga or Reiki or to the food store for that matter. I would not get myself anywhere again.
    But…I’m trying and that’s all I can do for today. Keep strong, keep informed, keep trying and keep positive WARRIORS!

  53. Chrystal Augustyniak at 7:06 am

    I can only talk for me and for my group.. I am not looking for a bandaid over a bullet hole anymore which that is what opioids are a bandaid I’m wanting, FIGHTING, begging for a cure.. I really hope and pray with everything I am you are right, I’m so tired of being sick and more tired of being chained to medication, I’m way to young to be dealing with chronic agonizing, weakening body… I hope you are right, I’m so scared I will be this way for the rest of my life.. Many of us are not addicts but we scared that nothing will help us… I’m afraid I will watch my family continuing their lives without me in it which is worse than death itself…. I really hope they are listening

  54. BarbaraDH at 6:41 am

    I am open to change, but not when that change isn’t covered by my insurance. The fact that many in chronic pain are existing on disability means they don’t have the means to pay for alternative treatments out of pocket. Yet we are supposed to embrace new treatments that aren’t covered? I would say that’s impossible. We are open to new treatments, we just expect them to be covered so that we may benefit from them. To take our medications away without offering something for us in it’s place is cruel.

  55. Martha Arntson at 6:31 am

    THANK YOU SO VERY MUCH FOR YOUR POST! I’ve been awaiting a sensible, well articulated post here about embracing the changes in how Pain in managed in this country! A little late in coming but it’s coming. I for one have embraced the changes over the past few months and I do alternative treatments instead of just popping a pill. I wish more people were as informed as you are and as well-read about our current situations. Thank you again! May I ask if I can copy your post to show my Pain Management Doctor?

  56. Laura at 6:15 am

    Wonderful metaphor for putting things in perspective. Alternative therapies can be so valuable in conjunction with, or in place of, pain medication. I believe the “in place of” has many of us, including myself, coming from a place of fear…fear of increased pain, fear of losing level of functioning, fear of someone else determining our quality of life, fear of missing out on life…all valid and very real feelings. Now more than ever, finding a doctor who is compassionate and knowledgable, willing to work in partnership with us, is imperative as we strive to find the right balance in treatment modalities.

  57. Danny at 4:42 am

    I don’t believe there’s a single cchronic pain sufferer who isn’t open to any “new” treatmen… if it works! Personally, I’m a bit offended by a couple of things in this article. First, be open to change “even if you’ve already tried it”? That’s not “change” or “new”, that’s accepting what groups like the CDC Pain guidelines committee THINK should work. If I’ve tried something (and I’ve tried everything from acupuncture to hypnosis) and it truly worked by significantly reducing my pain, is there anyone out there who believes that I would choose to continue using opioid medications? That’s basically calling me an addict without using the words.

    Secondly, I’m from the central part of Georgia and now live in North Carolina. We actually have good doctors. We even have running water and air conditioning, too! I know there are some people who ddon’t have close access to cutting edge medical treatment. But one doesn’t have to live in New York or LA to get quality treatmen. Based on the “tongue in cheek” quote, I, personally, don’t need elitist people telling me what’s best for me. I read all of the latest iinformation and news about pain medication that’s coming that might be a non-opiod “magic pill”. Excuse me if, after 25 years, I am a little skeptical. I’ve tried many”new” treatments and most fail.

    I’m hoping and praying for something new, something without the side effects I struggle with, but most importantly, something that works. I’m not stupid. If it works, I’ll be the first person in line.