Rally Against Pain a Success – What Now

Rally Against Pain a Success – What Now

By Ed Coghlan

A group of pain patients from across the country gathered in Washington D.C. last weekend for a “Rally Against Pain.”

It was a raw, windy day which didn’t inhibit this group of people who met, talked and shared their personal stories.

“It was all the same for people who came from California, Florida, Ohio, Virginia, New York, Michigan,” said Lana Kirby who was one of the creators of the event. “Everyone had been taken off their meds, or nearly completely cut.  Everyone was concerned about the future.  Or maybe afraid of the future is a better way to describe it.”

While the protest was largely symbolic, mostly because invited representatives from the Centers for Disease Control did not attend, it has spurred a flurry of activity on social media.

One of the speakers was Richard “Red” Lawhern who will try to influence his local lawmakers.

“I will be calling the offices of every Representative in my State during the coming weeks, asking for the names and contact data for each of their staff specialists in health care issues,” he said.

There was an interested observer in Taiwan, which is where Dr. Terri Lewis teaches. Lewis, who was invited to speak via Skype but couldn’t because of technical difficulties, thought the rally was a success.

“The feedback is quite positive. In the worse of conditions for people with limitations, people collaborated.  That, in itself is a milestone,” she told the National Pain Report. ” The organizers are to be absolutely commended!  In spite of no budget and large obstacles, they persisted in their task.”

While some wondered about the timing of the event given that the CDC officials didn’t show and Congress is in recess, Dr. Lewis thinks this was a promising start:

“As for what is next? I think it is a matter of continuing to collaborate closely, to refine the message, to focus like a laser, and to hold parties to the conversation accountable for their actions, particularly those that harm,” she said. “At the same time, we need to support consumers and work them past their fear of participation in this conversation – and there are many – because of the fear of losing what little access to health care that they have.”

She added one other critical element:

“We need to do the same thing for practitioners – cultivate their critical voices.”

Lana Kirby described the group that attended this way:

“It was probably the humblest group of protesters one would ever want to meet.  The people who attended this rally weren’t what you normally see; aggressive people storming the streets yelling obscenities, throwing rocks and hurting people.  Rather, they were people who were hurting.  People who braved the cold, inclement weather; people whose medical conditions did them no favors by standing out in the cold all day.  These people were there because they are at the end of their ropes and willing to do whatever it takes to get the medical treatment they need in order to survive.”

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Authored by: Ed Coghlan

There are 53 comments for this article
  1. michael L. at 10:26 pm

    I had the chance to use some weed and it is legal in this state, I had a UA and I got the boot for using it, as the clinic I was going to says you cant do both. They had the copy of the agreement and wouldn’t show it to me.
    Does anyone know what 2017 brings to us using opiates? I have heard that the CDC is making the manufactures cut production by 25% and I heard that people under 40 there pain medication will be cut by 50%. Anyone know the true story?

  2. BL at 4:52 pm

    Maureen, you’re welcome. It is important to read the actual law the governor signs and not rely on what news reports and others say the law says.

  3. Laurie O at 9:18 am

    MJ is available for medicinal use where I am. The CBD OIL was a disappointment. Getting it in a package for oral use was a waste of over $40 for a nose spray sized bottle. This may work for some, but my body is accustomed to meds (pharmaceutical) as well as kratom, so I’m assuming it’s my high tolerance to pain meds making the CBD oil ineffective for me. For NEW TO PAIN patients, it might be very helpful. I tried edibles with THC (no pain relief), but great help for those with appetite problems. It makes you hungry no matter how little THC you get, in any form (I asked). My best luck has been vaping a CBD/THC mix. It runs about $30 here, and can last months (I only use it late in the evening, because I prefer to be completely mentally clear during the day). Kratom between pharmaceutical meds during the day HAS helped stretch my meds WITH pain managed. MJ has a place for chronic pain, just in the relaxation factors and it CAN help you perhaps sit through a goofy movie and laugh, while in pain. I haven’t tried it ALL, as it does make you “compromised”, as opposed to kratom and light pharmaceuticals. I use methocarbamol (a muscle relaxer I got after trying many others), as well as low mg Vicodin for break through pain. The hardest part of life for JUST ME is trying to make PLANS. I cannot PLAN to feel well, so making ANY plans is virtually impossible. I do my best, make them and pray 🙏 that’s a good day. If it’s not, I reschedule. I can’t COMMIT to anything. I average about 3 days a week that are good. I would LOVE to be able to PLAN those 3 days with actual consistency, but I can’t. And I need to “conserve” my energy for those expected 3 days, so on bad days, I figure those are my “conservation” days, whenever they are. Even Christmas couldn’t be planned (and it was a challenge, so I was glad I didn’t have plans that day).
    I hope MJ legality reaches across the states, and I signed a petition yesterday for CBD to continue to be legal (now it’s on the hit list for being scheduled 1 with marijuana, sad). I don’t recommend it’s use for someone with a job (some people are able to hold jobs with chronic pain diseases, God Bless them for that), and it’s frowned on for drug tests for jobs and with Drs. Only try it when it’s legal and you don’t have drug test concerns. MJ doesn’t offer proper clarity that pharmaceuticals and kratom do. There are TWO types of CBD oil being highly advertised on the internet, and some I wouldn’t waste even trying – the ones made from hemp. If you wish to try CBD oil, read the fine print and at LEAST get the oil from cannabinoids, not hemp. The ones made from hemp have ALREADY had every bit of THC removed and won’t help veteran pain patients (in my opinion). This CBD oil may help someone, but nobody with serious painshould start with hemp CBD oil if you wish to give it a try. I hope this maybe helps one person. Good luck.

  4. Maureen at 8:06 pm

    BL, thank you very much for those links! Very informative! And now I know that in Florida medical MJ is not permitted for Chronic intractable pain. Hopefully in the future….

  5. BL at 1:11 pm

    The link below may help those in Florida find a doctor to prescribe Medical Marijuana, if they meet the criteria. Click on the link List of Physicians Who Have Completed the Required Training to help find a doctor.

    The Laws are Strict. You must have a Qualifying Condition in order to be prescribed it. The Qualifying Conditions have been expanded and they go into effect Jan 3 2017. Having chronic pain does not automatically qualify you.

    Insurance does Not pay for Medical Marijuana. You cannot use Medical Marijuana as a Medical Deduction for things like Food Stamps, HUD Housing, etc. Medical Marijuana is expensive.

    A state having legalized Medical Marijuana does not mean your doctor will not dismiss you if you test positive for it. Be sure and ask your doctor BEFORE using Medical Marijuana In Any Form. It also does not mean you will not lose your job is you test positive for it. If you have an accident and you test positive for Medical Marijuana In Any Form, you can be charged with Driving Under The Influence. If you travel to another state,Medical Marijuana being legal in your state Does Not mean you can’t be arrested and/or charged in that state.

    http://www.floridahealth.gov/programs-and-services/office-of-compassionate-use/

    Qualifying Conditions for Medical Marijuana by State-
    https://www.leafly.com/news/health/qualifying-conditions-for-medical-marijuana-by-state

  6. michael L. at 4:56 pm

    Sandra G you must live in WA state it would be nice to get together as I live in Tacoma, WA I have the same problem going anywhere even to dinners us people that are in need cant go and they wont ever hear from us. I dont know how to contact some one on this site, could someone heko on this?

  7. Maureen at 2:30 pm

    Diane, I too live in Florida but my pain management doc isn’t even entertain ping the thought of prescribing it, let alone knowing of a place to get it at yet. Is yours doing that already?? Maureen

  8. Diane Gracely at 4:19 pm

    I am so glad Florida FINALLY legalized medical marijuana. At least we Florida patients now have another option for pain relief. I honestly cannot believe our government has gotten away with this INHUMANE TREATMENT of chronic pain patients.

    I have been SHARING and VOICING my VOICE for over a year and we have NOT gotten anywhere with this INSANE treatment. SOOOO many have lost their quality of life. It’s sickening that we cannot have the medicines that have worked for so many of us for many years.

    When will this STOP? NEVER, we have gotten NOWHERE with this fight. I talk to people DAILY through Facebook who are patients who’ve lost their meds, lost their doctors, etc, etc, etc… I am so FED UP with our government thinking they are our doctors!!!!!

    WHO gave the government the RIGHT to CONTROL our LIVES and our HEALTH?

    Thank God for medical marijuana, it NEEDS to be FEDERALLY legalized so EVERYONE has another option for pain relief and a quality of life.

    I personally am working on weaning off of opiates to use medical marijuana and I PRAY an PRAY it will help me and so many others get our quality of life BACK.

  9. Lance at 1:42 pm

    Kratom.. Good luck ha most people agree about marijuana and it wasn’t approved unti tax revenues ie. Massive profit for govts came into play. Most of our lawmakers and officials have toked a doobie except for slick Willy Clinton uh he didn’t inhale and their more familiar w it along w the massive revenues the govt magically approves… Kratom… The masses and I’m one them would rather keep a pain mgt professional that’s managing my pain and has for 10yrs so why as they say fix it if it broke? But push has come to shove In Ohio!/I had one doctor since my disabling law enforcement injuries and of course the state of Ohio and John kacichs war on pain doctors forced him to relinquish his pain mgt license why? Because since 1976 this ortho doc took care of and fought for his patients so naturally they screwed him he only practices orthopedic medicine and the 200 pain patients like me? Given notice go find new doc in 60days..I found a new home new doc who was fine w opiates and a few epidural I injections. Oh wait!/the DEA went over his practice w fine tooth comb! Found a technicality he did not hire a supervisor to manage his weight loss clinic tech side of his biz.. See they start digging and find technicalities to hammer the doctors drag them and lawyers to the state board… He to lost license 6mos. I found my 3rd doc in 18 mos he was great he worked w me on pain solutions and he too was harrassed by the board for writing 15mg roxycodone tablets mmm wow right! He moved out of Ohio. Iet a 4th doc in 2yrs I receive one third of the meds I had been managing on for 10yrs I’m now on 15mgs roxycodone 4x day w neurontins. I experienced gaps in treatmemt horrible withdrawals goin w out meds for weeks on waiting lists to see providers to the point I considered committing suicide as the pain was debilitating the withdrawals horrible.. If I did not have my 13yr old daughter I would have eaten my service weapon. I was in law enforcement I’m a veteran and I was combing Streets to cop a few percocets from thugs yes unreal. If I had been employed ID have been fired how does one work dopesick from pain pills call it withdrawal call it sickness it’s dopesick from going from 120mgs roxycodone day to 10 advils day.. Go to emergency room family doctors they’re all DEA scared… This is intimidation politics a human genocide against medically wounded vets disabled cops disabled elderly all walks of life law abiding citizens just trying to get outta bed function work take care of children.. The worst part is what kind of father am I feeling dopesick like I’m a junkie being penalized for what???? For what!! I served my country I served the local taxpayers lockin up scumbags child molesters rapists cons killers psychopaths and worst of all the shizo affective suspect high on PCP that took me down 20 or so steps fracturing all my ribs herniating dics in my neck back screwed me for life… He did 6mos and is out smokin crack on the block what did I get?/battles w bwc battles now w doctors who are being screwed by the state n passing it on to those of us that Purdue pharma and many that made billions in revenues.. Now the politics shift to rehab medicine and the doctors and same company’s Pfizer all are pimpin suboxine so screw us out here we are effffffed. So now what?/the doctors patients must band together get a voice call our state reps like I have and fight OR keep going to ur doctors and hearing the bshnit. It’s our lawmakers fed state and a brutal genocide dished out by DEA young men n women that have tied us all in w the Florida pill Mills that cashed out and we are to blame. The war on drugs has failed so this is the easy war blame doctors empower pharmacists thru fear of vicarious liability who in turn screw us too… Keep taking it hard or stand up band together fight. If not you ll be screwed by govt they disseminate bad info assumptions to support their agenda.. What else can u do buy meds on street?

  10. Julie Davisson at 9:44 pm

    This is criminal genocide! What they are doing to chronic pain patients! Yes, we all need to get loud and fight until this is resolved, we are heard, and get out medication we need just to live any semblance of life at all back! My meds have been reduced and I fear the worst! I am willing to help anyway I can!

  11. Julie Davisson at 9:39 pm

    Love this start. I truly wish I could have gone too. My meds have been reduced and I am mostly bedridden now. I can write letters and speak out any way I can to help us get our medication back. Our lives back. This is criminal genocide! What they are doing to us!

  12. Laurie Otto at 1:05 pm

    BL,
    The only thing I have to add: the kratom community HAS GROWN SUBSTANTIALLY, in great deal BECAUSE of the pain med mess. Many pain patients have been suddenly denied and panic starts a long learning curve they were not prepared for.
    There have not been any kratom-use deaths – ZERO – as the DEA stated as their reason for panicky “imminent threat to society” claim, they said 15, but all included a combination of meds, (not one claim held up when the American Kratom Association hired expensive attorneys to subpoena ALL toxicology results for those claims – there is a central toxicology result coroner in Florida that keeps records on every death where toxicology was tested on US citizens).
    Y’all obviously know the opiate death rate is the reason doctors are being HARASSED about their opiate prescribing. Just this past month, a friend with CRPS/RSD got his usual refill, and when he got home, it had lower strength! Not a word of warning, just – less.
    It’s a SUBSTANTIAL reduction, too!
    THAT is why we are seeing overlap now. It’s happening with EVERY chronic pain disease, and most of it is unexpected, sudden and we SUDDENLY have a LOT of people forced to learn a lot about Botanicals.
    Maureen said this topic has been discussed, so my apologies if this has already been said. It’s new and updated information, so it might be new to some. It’s not GOOD news, just a supplement to what BL said.
    Also, for anyone who listens to talk radio online, there is one MD I listen to every Sunday night, Bill Wattenberg’s son, Eric, is an MD in Oregon. He discusses the physician perspective in relation to the politics of opiates from every angle HE faces-the show is still called The Bill Wattenberg show. I listen on TuneIn on KSCO every Sunday night.
    Best wishes and Happy Halloween.
    PS: my friend with the suddenly reduced meds is having a VERY UNCOMFORTABLE Halloween. Probably will lead to a flare-up from the stress.
    This is very unnecessary and a sad state of things for chronic pain sufferers everywhere 🙁

  13. Diane korsnack at 11:30 am

    In Ohio many doctor offices have signs on their doors or even internet adds stateing they do not prescribe pain meds. More common then not. I was taught as a nurse we care about and treat the whole body including pain.

  14. Krissy at 11:29 am

    Dave, I don’t disagree with you (sometimes I find what you are saying confusing, but it’s probably that you are just in areas I’m not up on), and I really don’t believe this is easy in any way. What is easy is for me to make things famous. That what I did for a living, and I was good at it — well-known, a spokeswoman, national speaker, author, etc., and my plans for my clients worked. I promised every new prospect in our first encounter that if they hired me I would have them on the cover of one of the top three industry magazines within three months. I did it every time. (Pre-Internet). But there were big budgets, I had a name in the industry, so if I had news, it was well-published. And I was well. not sick. But we all “were” something at least a little different than now. And that’s the part of “expert” I am talking about. The experts are the pain patients. I am not sure you understood what I wrote, and that could very well be because of the way I just threw it out, half tongue-in-cheek, half serious. I was laying out how one might start a company, but in the realm of the situation, the “employees” are pain patients who do, or used to do, certain things that made them experts. So they would handle a part of the “plan” taking their experiences from their particular strong points.

    I got out of a long and very strong fight for pain change a few months ago. I had to. I was burning out. Plus, I am on that side of being the kind of patient who can’t go places, nor do enough to implement my ideas, because of illness. Lots of readers here watched me back out of some pretty big stuff because I was too sick to go on.

    It’s not just about pain, but the illness and side effects of pain. In fact, pain has been the least part of what I’ve been dealing with lately. I am a “walking dead girl,” and according to my doctors, a heartbeat away from the end.

    I can lay out all the ideas in the world, but there are two things I say about that: One — and I’ve said this before — it’s too hard to get enough people together and I do not believe we can get enough people to make anything happen. That was the statement I made when I got out of my “big” fight on this whole thing. But I’m an idea person and ideas come spilling out, thus what I wrote in my comment here. If one considers the number of people in chronic pain who have been affected by the ACA and the guidelines from the CDC and all the other obstacles (like you mention), there really are only a few of us who even know what’s going on.

    I don’t believe anyone should quit by any means. I hope with all my heart things will change.

  15. BL at 4:34 pm

    Richard Conley, perhaps the kratom community have learned from mistakes made in the past with opaites.. The kratom community is being vocal and visible from the the beginning. Like it or not, it really has gone too far for much, is anything to be reversed when it comes to laws and guidelines concerning opiates. It makes people feel good that they are “doing something” but it really is too late to reversed what has already been done or what may be ahead.

    The kratom community let their voices be heard Before any laws were changed, they are alert and organized and they will continue that way. This may or may not affect Kratom Laws. But it is easier to stop something in the beginning than it is to try and stop it once it has built momentum. The laws and guidelines restricting opiates started gaining their momentum years back. It is like a boulder that starts rolling down a mountain. The longer it goes the more dirt, grass, etc it collects and the faster it goes down the mountain. In the beginning, it would have been easy to stop or changed it’s course, but after a while it can’t be stopped and it becomes stronger becasue of what it has gathered on its way down.

    When you don’t see results of your effors after a while, you tend to give up. The kratom community is seeing results and they have the needed support. They got the needed signatures on the petition in the required time frame. No petition about chronic pain has gotten the needed signature in the required time frame, or even the required signatures. Politicians and others notice things like this. It may not stop some of what the powers that be want to do regarding Kratom. But chances are good it will slow them down and make them carefully consider restrictions and they may change some of their plans if the kratom community continues to grow and strengthen. A lot will depend on the evidence regarding the dangers of Kratom and the number of people that abuse Kratom now and in the future.

    Most thought they were entitled to pain meds if they needed them. They thought if they said they needed them they would not be taken away. The kratom community knows what will happen if they don’t keep up the fight and grow in numbers, voice and visability.

  16. Dave at 4:25 pm

    Sandra- good points- i agree that understandings about pain are Balkanized and doctors dont understand the experience and views of people in pain and the same problem exists with politicians- they only identify with and understand what politicians understand about pain and cant relate to people in pain. And so yes we should write to doctors and politicans etc to try to communicate our experience despite the disinterest of politicians and doctors when it comes to people in pain.

  17. Sandra at 12:04 pm

    Dave and others, I have missed things. Most of us know about Chronic pain because we communicate with each other and have serious pain. The political side only knows what the media says and other political people tell them .

    Everything is hid from them everything. The CDC an FDA makes sure they know nothing. Please each of us write at least one letter a week to doctors and educate them . Also politicians . They only have false information. People believe we are all drug addicts only because that’s what they have been told.

    When you first start telling people about receiving no medication they do not believe that good people would be treated like this. That’s it inform everyone educate them get ahead of Cdc , FDA .

  18. dave at 9:48 am

    Mr Conley- a flip comment and a glib orientation to people who despite their pain and lack of general support took the time and effort to speak out boldly about the cruel nightmare that the cdc has created for people in pain.
    Sandra G- social movements risk the free rider problem. All who care about people in pain can and should make some effort to improve care. I am not in pain and have spent over $2000 helping people in pain and over 12,000 hours of my time either learning about pain care issues or making phone calls to legislators or other organizations. Almost all Americans can spend $3 a year to organizations on pain care and or make a phone call or write letters to medical organizations or government to improve pain care.
    The lives, rights, jobs, mental health of millions of people are on the line because of the cdc guidelines. We all need to do what we can to help those in need.

  19. Laurie Otto at 9:22 am

    Richard, THANK YOU for more eloquently stating my point that upset a few yesterday.
    Pain denial is not limited now. It’s ALL PAIN. Government is coming after Drs to STOP TREATING PAIN, period.
    Kratom is not for everyone. It won’t treat the pain being rallied about. But it might be wise to have ALL THE SUFFERERS gather together? Kratom has people with every range of problems. Most interesting to me, personally, are the results in treating, NOT curing, Parkinson’s and dementia. Those diseases have PAIN, too! Never mind depression, anxiety, and PAIN from other not-so-commonly known diseases.
    Senator Orrin Hatch does not support Kratom (probably doesn’t know what it is yet), but he DOES know the DEA likely abused a privilege given them to remove immediate THREATS TO HUMAN HEALTH. He scolded the DEA for POSSIBLY (?!) ABUSING this privilege in removing Kratom without CONGRESS oversight AND KNOWLEDGE.
    Finally, there is now overlap in our midst. Out of sheer desperation. I hope that overlap gets noticed and sorted out as ALL PAIN and suffering and RIGHTS and FREEDOM to choose help get noticed and supported by OUR LEADERS in government .
    PS: Thank you to Maureen for sharing, thank you Richard for this (I think some pain sufferers MUST have representatives speak for them for obvious reasons, not trying to attend rallies, that’s just my thought), and a post last night really got me in the heart, BL wrote: “No one is going to believe Chronic Pain Pateints are being denied pain medications that enable them to function if they can go to a rally in D.C.”. That’s a good point, too! Lots to chew on. Wishing all a better day TODAY for now.

  20. Richard Conley at 7:16 am

    The chronic pain community REALLY needs to start taking cues from the kratom community. I drove by the pain rally for a friend to get an idea of how many people there were, and if you had 50, it’s a miracle. The kratom people fielded almost 2,000 people, on two weeks’ notice, and did so when Congress was in session and the DEA was inside their offices.

  21. Dave at 6:37 am

    Krissy- I like you’re ideas- except for advocating that experts(which you mention 3 times not including doctors and PA’S) be an ingredient.
    And having had hand to hand combat experience so to speak with government officials and experts- we had best be prepared for them to battle us -just as Houry battled Lana or Dr Collins battled meaction. Or my Senator battled me. For those experts and government officials who have long since gotten obese off their power over people in pain don’t wish people in pain to put them on a diet and lose their power. They will fight us with falsehoods, there is no alternative fallacy, finish the job fallacy denialism, the Nuremberg defense, Sargeant Schultz defense, name calling, counter-insurgent efforts, intimidation, oppression- to name a few of their dirty tricks.
    Frankly, I don’t know any leader in pain care today who is fully prepared to battle the powers that be. We are like the Polish in WWII facing a well oiled and determined Nazi Army. We are unprepared to do battle with the powers that oppress us. A very determined few individuals in pain care can and will make some progress to restore rights and decency- but the powers that be will weigh and judge the strength of the rest of the pain community and may decide to go after the few determined individuals- knowing the rest of people in pain will remain passive or unorganized.
    And so I have seen what the state pain alliance and CPATF and PAINS have done with regard to improving pain care- all too little. And here we are underestimating what it will take to put the fascist powers that be that oppress people in pain on a diet. Frankly it will be much much harder then you seem to believe.

  22. Judy Jaeger at 6:31 am

    I applaud all those who put this Pain Rally together, as well as all those who were able to attend. I wish I could’ve been there, but my chronic pain has severely limited my travel. Travel by air or long car rides are pretty much out of the picture for me. Then there’s the logistics nightmare of getting around once at the destination.
    I do however support making this an annual event….but definitely needs to be when Congress is in session. And perhaps organized events in every state capitol in the country, probably not on the same day, but perhaps 6 months before or after the National Rally.
    And any events planned should be well publicized, well in advance on EVERY Pain website, blog, newsletter, and social media pages.
    Chronic pain is chronic pain is chronic pain…..doesn’t matter what the condition is, we’re all in this together.

  23. Sandra G at 5:30 pm

    Your right a famous person would be a great idea. Yes

  24. Sandra G at 5:14 pm

    It is very true many people that have chronic pain can not go to Washington DC because of pain. I start out many times just to doctors office and can’t make it because I hurt. Others can go for us to Washington D C. Yes they can and many did.
    If we could do this in Olympia , WA Capital Building I would try. I know in my heart I would get into trouble with pain and have to come home. But I think everyone who went that could for us.

  25. Krissy at 4:54 pm

    Dave, read clearly. I was talking about people with experience in various areas who could help. Simple stuff. For an example, if a patient works or once worked at a taxi company, perhaps that person could give insight into transportation from place to place. Or if a person worked in accounting, that person could manage some numbers. That’s all. Please don’t judge me for making a proposed suggestion. That’s part of working together for the reasons we do.

  26. BL at 1:20 pm

    No one is going to believe Chronic Pain Pateints are being denied pain medications that enable them to function if they can go to a rally in D.C.

  27. Laurie Otto at 12:33 pm

    I actually mentioned the “famous person” idea in a different group for the same reason. It’s too bad most famous people are famous for reasons none of us would wish to be famous.

  28. Sandy Miller at 10:39 am

    I also thank all of you that were in so much pain to rally out in that type of weather. Believe me, I understand, it’s so painful, so all that attended, I thank you so very much. I also thank Dr. Coghlan and Dr. Ibsen for their participation in trying to help us who suffer in this terrible, horrific pain,find a solution to this problem. There just has to be a better way if the government is going to interfere between us and our doctors. They know the doctors who have done wrong, I just don’t get it, why make us all suffer. I have thalamic pain syndrome, also known as Central Pain and my back is full of metal, plus I have heart trouble. I have been with all my doctors for years, and they know I do not take advantage of taking an opioid pill to give me a little relief, I mean a few hours of less pain is worth so much to us.

    There is no wy I could have made the trip either, I live in Illinois and I hardly get out at all. I do appreciate and love all of you who managed to attend this rally and represent all of us..

  29. Donna Rubinetti at 9:55 am

    This chronic pain epidemic without access to pain control is barbaric. I often wish a neurosurgeon would operate on my brain and cut off my pain center. Of course that will never happen and the rational part of me knows why. I think severe chronic pain can impair ones thinking. I am a mental health professional with additional training in substance abuse. Chronic pain patients are not looking to get “high.” That is ridiculous. Maybe we need a “famous” person to speak up for us. It seems that that is the only way to get attention from the powers that be. Sorry for the rant.

  30. Sandra G at 8:49 am

    This is a start . Thank everyone who could come. I wish I was well enough to come with you. I really hope that everyone could go to their state capitals on the same day and do this. It’s hard for some sick people to travel. Maybe we could get more people to come on the same day. Oh yes it would be nice to have a doctor on grounds. OK I’m pushing it I forgot we don’t have doctors that care about us . We have some but not many.
    Sandra G

  31. dave at 5:44 am

    @ Krissy- I can understand the need for an organizational framework or logic to our efforts and agree with your ideas about media.
    I don’t agree with the need for including experts, per se. We have not seen experts in any numbers protest the current guidelines and I only know a few that have made good arguments opposing the guidelines. And haven’t most experts hubris and neglect gotten us to where we are today in pain care? They have hogged the debate and effectively silenced people in pain from being heard and made claims that people in pain and nonexperts are unqualified to have an opinion about pain care. Experts are very much part of the problem in pain care for they lack motivational intensity, they are opposed to democratic deliberation and they are opposed to working respectfully with other segments of society to make pain care better. Which expert would like to debate me on the issue? I have offered experts numerous opportunities- and they either decline or claim I am unqualified. So I say including experts is dangerous to our cause at best at worst the power that be will listen to them instead of us.
    Years ago when I contacted Senator Maziarz in NYS to sign onto legislation in pain care his staff said to me- why should we listen to you Mr Becker- we already heard from the expeerts during a hearing- my response was- which one of them got one legislator to sign onto a bill. The answer was zero-and so the senator signed on the bill the next day. Lets face it experts lack vision, lack motivational intensity lack concerns about fundamental fairness and lack the ability to work with nonexperts. I don’t need a feckless under educated expert to tell me what to think or what to do- I respect their ideas- but recognize their great failings and limitations.
    As a group we are gravenly mistaken to defer to experts- they will try to coopt us and hog the debate and view us as inferior in judgment and knowledge. Which one dares to claim that I know less then them or care less then them about pain? Name me one Krissy- just one.
    Its unfortunate you have fallen under the spell of modernism and are spell bound by experts- im a freethinker and am capable of independent and divers thought- something that experts clearly have trouble with, And unlike them when I saw people in pain suffering- id dint wait for them to speak up or stand up- I spoke up and got legislation on pain care introduced in NYS. Unlike the experts who commented on the NPS- I called for a real vision. So once again, experts failed at moral and civic leadership. So I prefer them to not be part of efforts that I am involved in.

  32. I. Was Dere at 9:31 pm

    I for one was disappointed. Small turnout, poor technical facilities, hard to find, no literature to hand out (but plenty of “I Am Chronic Pain” T-shirts), few signs about why we were there. The message didn’t get out, and people passing by showed no interest. Even those in wheelchairs. I was a nasty day and I am sure the organizers did their best, but it appeared rushed and disorganized. Lets not candy coat things. I’m sorry but I have to call it like I saw it.

    This is no reason for discouragement, though. Next time will be better. There should be one in the Spring and one in the Fall and theres no reason to think the next effort wont be better. As the organizers said, this is a grassroots effort and this was the ground floor. Next time we get an amp that goes to 11 and we rattle the White House windows. The rally came off and just in doing that it was a success. We should call the next one a protest, not a rally. We are all mad as hell and aren’t going to take this anymore.

  33. Maureen at 9:22 pm

    To anyone with questions re: the Rally
    Lana, Terri, Dr. Lawhern and others quickly put this rally together, with great effort, regardless of Congress not being there, to at least get it in before the election.
    Also, it contained folks with ALL sorts of painful conditions and issues in regard to our negative effects, from the Government changes, on our individual lives.
    This rally was the first at DC and God willing, the beginning of a bigger movement to come!
    Thank you to the organizers and for those who painfully made it there!
    I honor all of you. Maureen

    ps @Laurie.
    This site has already published many writings about Kratom, you can search them here. Including the government crack down on it and about the petition etc etc.
    Bravo to the Kratom user community for all of their awesome efforts! Great job!
    I need to try it! 🙂

  34. Sandra G at 7:05 pm

    I wondered this myself. I really don’t understand why would someone do this. It was important but they did this when everyone was gone. They could have picked any lot to do this. This is upsetting because it was important to the people in pain. Again the people had no say

  35. Rick Kelly at 4:02 pm

    What’s sad. Look at how FEW ‘shares’ on FB. Very sad. Nobody cares. Even family doesn’t get intractable CRPS late stage. It’s a beast. AND not n my head!!!!

  36. Krissy at 2:57 pm

    I am impressed! Lana and the others organized and made this possible with the many obstacles that people in pain face moment by moment. You pulled off a feat when no one else could. That’s something to be really proud of. The 1) difficult, 2) time, and 3) energy-theiving processes just to figure out the logistics of creating a rally in DC is hard enough, and heightened for those with chronic disease. I’m sure this has taken a toll on some pain levels and all that happens when those levels go up! (ref: “The Side Effects of Pain”)

    Sometimes some of us can’t even get together an organized list and go to a grocery store! I personally can’t even fathom doing something with so many details and hours needed, with having had pain medicines cut or cut off. Personally I couldn’t possibly do it and I have my pain medicines. Good for all of you who were involved. You deserve a round… of applause, not Tequilla shots! (Sad face)

    I would say do it again in six months, but what I really believe is to use the idea said here in a comment — to have one rally in each state on the same day, do it twice in this next year, then build up to a national event in DC with a well-oiled machine that is running like a hot car on the racetrack.

    Start by finding a good leader in each state. Getting recognition in every state may not be possible, but get what you can. (We don’t always have all the right ingredients to make a recipe, but that doesn’t mean it won’t turn out just fine.)

    Say you have achieved getting people lined up from 36 states to be leaders. Option: Some may be pairs or more (…you may need two or three extra eggs). Put them all in a bowl and set aside. Now gather the other ingredients, but on a nationally-working level — maybe even regionally. We’ll be mixing them in later, but start early so they are ready when you need them. (Plan ahead to whisk them together until there are almost no lumps. Plan for a no-rush situation in the end. (You may need to cook this a little longer at higher sea levels.)

    Think of the recipe as a company and all of its parts rather than food. Make a list of the departments in an average medium to large-sized firm.

    Make a list of those departments, then under each, make a list of the duties of each department. Online you can find information on department responsibilities in general terms, their objectives and goals. (If you don’t have coconut flour, search the Internet for a substitute. Sometimes substitutes need varied measurements.) (Or, see who got a gold watch at the last annual dinner and make him/her your best friend.)

    Now begin to find the rest of the ingredients. Look around your kitchen. Put out calls for current or former/retired/disabled experts who could head up a certain department. Run some cold water over the eggs and be prepared to ask them to commit to be heads of committees. Many ill people cannot commit but want to. Those need to have an understudy. (Sometimes you’ll find an egg without a yoke, sometimes you’ll find an egg with two yokes.)

    Not only are the groups great resources, think outside the cake box and outside the pain community. Look toward local senior centers, senior clubs, young peoples’ clubs, other types of FB sites. (I need some chocolate chips but my pained kitchen doesn’t have them, so I’ll just find a chocolate chip FB group and chat with them about this.) Use free media and advertise for who you need. So many resources, too little baking sheets, I know. But you have lots of friends who want to help.

    Now all you need is one, good, well-written, candy-decorated, solidly-baked, letter-type document or — better yet — an e-brochure, that can be mailed, emailed, texted (link), posted, etc., sitting in the cupboard, to fold into the technology skills you or one of your committee heads has. Technology is an important ingredient to this recipe.

    In making this dish, cookie or brew, you might just end up with one or several highly-qualified and enthusiastic people as your managers for the committees (the company departments). CEO, president, CFO, (etcetera), technology, marketing, design, writing, sales, travel, advertising, public/press relations, research and development, fact-finding, legal, fund-raising, food, procurement, medical, transportation, manufacturing, mail room, packaging, printing, shipping… heck, a meteorologist might be handy (with extra responsibility for procuring raincoats made of cheap leaf bags and a pair of dollar-store scissors).

    To all pain people, I am not saying in any way you don’t already have experts or anything I’ve mentioned. Many, many of you are experts in one or more areas, many areas. I merely see a way to reach without money and cover every angle that can be useful to grow this thing into an ongoing vehicle with the voice that we all have cried for for so long. Then someday we can all quit, relax, take our meds and get on with the things we really want to be doing.

    You got some really nice pre-press from the pain sites and blogs and surely from some media I’m not aware of. I am anxious to see what press you got or will get, besides this post.

    Now continue and get big, keeping professionalism at the highest level — graphics, videos, radio shows online, a string of personal stories written and published here, then reprinted, make case-histories out of personal stories and print them, have them linked using your identified committee members.

    Have your committee “committee head” form one group just to get more doctors involved, another to get PA’s involved, another to research and publish statistics that hit hard, another to study and provide information on suicides, with personal stories from families. Remember to reach out beyond the pain community.

    This is a science and it works for you. Now succeed even more than you already have. An organization will grow when people are working together like a smoothie of the very best recipe. A company, or a non-profit (which is what you have?) that is widely recognized, like the name Betty Crocker, will be done, and so will its purpose.

    Take everything that all of us have been trying to do and wrap it up, serve it up in a crystal bowl. Then when people start asking for your recipe, you’ll know you’ve made it right. When the government cites your recipe in its new guidelines, you’ll be the author.

  37. MLW at 2:42 pm

    I have always said that if takes any effort on part of our elected representives, it is easy to say no and there off the hook they then dont have to do anything and seems today it would take up there time on working on getting rich, I have never seen anything like this only during election years , buy a vote, or help the Obama health system as if they get everyone off opiates, look mqat the money the insurance company’s will save and make Obama h care look better, whats next,
    They really know what the problem with the opiates are but it would take effort on someones part to work on solving the problem again saying no and doing nothing seems to be the American way.. Our pain groups around the US could do a better job.

  38. BL at 2:01 pm

    I thought the purpose of the rally was to try and get federal politicians attention. I apologize for my error.

  39. Diane Gracely at 1:34 pm

    Thank you Lana Kirby for organizing this event and taking over where I left off. You’ve done a great job. Sorry I could NOT be there. I couldn’t take the COLD nor do I have the FUNDS to go to Washington D.C. I am scheduled for my neck fusion on November 9th. So far my meds have NOT been taken away from me, thank God because I would NOT get through this if they were. BUT it’s ONLY a matter of time. We HAVE to MAKE CHANGES, we are NOT GIVING P this FIGHT for TREATMENT of chronic pain. Our VOICES are and WILL continue to be HEARD. And we WON’T STOP until this is under control and EVERY CHRONIC PAIN patient is BACK on the MEDications they NEED to function daily. Thank you to everyone who attended!!!! Keep FIGHTING!!!!!!!!!!!!

  40. Donna Ratliff at 12:41 pm

    So, Good to hear that people went even though Congress wasn’t in session. Good to hear it’s resonating on social media too! That’s so important so we can get things changed for patients and doctors.

    If you do again possibly when when Congress is back in session. How exciting it would be to get lawmakers to stop and talk about their constituents who’ve become the Collateral damage,
    That theyve caused.
    At any rate, congratulations on the rally. Good to hear!! Btw,..The same thing happened to us when we did the FL rally. None of them were in session. We did get Rick Scott’s aid to come out and speak to us and we did have media.
    I Hope there is another one.:)

    Keep us all posted on what we can to do to help after the election.
    Again, congratulations and thank You!
    Every effort is so appreciated.

  41. Ashley Reber at 12:30 pm

    I appreciate that the rally was held, but in all honesty why did it have to be held when congress isn’t in session?? If a Rally isn’t held while they are in Session I don’t see that it will make any difference in getting the help we need.

  42. Laurie Otto at 10:36 am

    I’m sorry, Joan. I didn’t mean to offend ANYONE! Quite the opposite.
    The article said “chronic pain sufferers”, I didn’t see where it said ONE DISEASE ONLY qualifies for chronic pain.
    To be factual, when you are done yelling at me for not KNOWING that, there are quite a few of your ONE DISEASE sufferers among kratom users. This is not to say they are cured! Kratom does not CURE pain.
    Seeking chronic pain relief and seeking a CURE FOR ONE SPECIFIC disease are separate. Go ahead and draw a line in the sand. My point was only this: chronic pain sufferers of MANY DISEASES AND AILMENTS might do well to join forces. EVERYONE is being denied adequate pain relief in this country. By dividing issues, it separates us all.
    I’m sorry if I offended anyone. Kratom can be used as a tool in your belt, while it’s legal.
    It’s not the ONLY tool.
    People are miracles, not the tools they use. Gathering together to treat pain and stop the war on valid suffering needs to stop.
    I only know one person with your ONE DISEASE. He uses traditional medicine AND kratom, AND still gets suicidal during flare-ups. All I can do is be his supporter and friend.
    Good luck and I’m sorry my comment was misunderstood or perhaps misplaced. It had nothing to do with denying your pain or your disease.
    I have been reading the National Pain Report for over a month and found it very helpful.
    There is no “you must have this disease” line in my subscription.
    If your chronic pain group IS entirely ONE DISEASE only, I now understand why the meeting was so small (Thank God, in the case of the disease you are suffering. I’m not sure how ANYONE made it!)
    I thought it was an open report for people with chronic pain or related interests.
    I’m sorry I subscribed in error. I’ll cancel my subscription and wish you luck with your CURE, and I hope you find MANY tools to make the days easier until the CURE is found.
    Sincere apologies,
    Laurie

  43. Sandra G. at 10:03 am

    This is great. i wonder what would happen if every state would rally at their capital grounds on the same day.
    I wish I could have been in D.C. I would never make it…I’m in to much pain. I miss most all my doctor appointments due to pain. Please we need to stick together..
    we all need the right addresses to write to the people that will make a difference.
    I like what they did in D.C. I think it’s a good start.
    Did any news cover this ?
    Sandra G.

  44. Mark Ibsen MD at 8:59 am

    I am touched
    Moved
    Inspired
    By this start.

    Rally:( from Webster):

    1
    a : to muster for a common purpose
    b : to recall to order
    2
    a : to arouse for action
    b : to rouse from depression or weakness
    intransitive verb
    1
    : to come together again to renew an effort
    2
    : to join in a common cause
    3
    : recover, rebound

    Is this the step that begins a journey of thousands of people?
    Time will tell.
    What IS certain:
    We are “mad as hell, and we’re not going to take it anymore”
    AND
    We know that we CAN present our case in a powerful way that engages others in conversations that lead to solutions.

    The powerful 3 minute quote of Jeff Daniels ( from Network)about how America could be the best country states this:

    The first step in solving a problem is becoming aware of it…

  45. DParker at 8:39 am

    Joan Hamm,
    Somehow you missed the point. These folks were not advocating that they had been healed and no longer need medication. In fact, it’s just the opposit. They are in pain and need pain treatment that they have lost access to. It clearly states ,”Everyone had been taken off their meds, or nearly completely cut. Everyone was concerned about the future. Or maybe afraid of the future is a better way to describe it.”

    Translation= we have severe pain, give us our medication back.

    I do think this article could have been better written. The author directed this article to an audience who is aware of the movement that’s been gaining momentum and totally missed the mark of spreading the word to those who have are uninformed.

    He should have written this article as if audience had no prior knowledge of the group Rally Against Pain (RAP). If any group has what it takes to change the hostile environment chronic pain patients suffer its RAP, organized by the ever vigilant hard working advocate Lana Kirby.

    Thank you Lana!

  46. Joan at 8:33 am

    I really do appreciate all of your efforts in going to D.C. I just hope they now know that we are serious and we are not going away until this mistake is corrected. I’m not sure what the solution is, I just know that what they have done isn’t the right one.
    I also have never once gotten a high off from the medications I was given. I’ve been off pain medication since January and can not seem to find anyone that will help treat me for my conditions. It has been the most unproductive year since I was diagnosed back in 2000. I hate having to say I need pain pills to function but I do. Not knowing where to turn is humbling in itself. My life has been turned upside down once again.

  47. Dave at 8:18 am

    The failure of the federal government to take an interest in the pain rally- is proof positive that they are too far removed from the millions who suffer from pain. In this regard, they made a huge mistake to underestimate that the millions of Americans in pain will be passive and silent about the governments immoral indifference to their pain. We will no longer allow government to treat as serfs without rights. We will fight back and win. We can no longer tolerate their inhumanity and their b.s.
    We will need to get louder and more active to call for real change, new government programs and leadership that will recognize the right to pain relief. We need to call, for the removal of deadbeats in DHHS who served the interests of their organizations or professions without regard to the lives and wellbeing of people in pain We need to call for better political representation in the FDA, CDC, DEA, NIH. And as a new President will soon be in office- we need to do this as soon as the election is over. We cannot afford to miss this opportunity to ask the next President for real progress for people in pain.

  48. Joan Hamm at 6:10 am

    How many of these people had severe RSD CRPS??? How many if not all were brought or came to the meeting that were cured due to fast treatment??? Sounds to me this meeting was set up?!!! No way did going off pain meds cure or make these women pain free.!!!! Did God do a Divine Intervention on Them? I want to go to a meeting I can get to from Delaware with people with severe RSD CRPS!!!! There are no words that describe the pain without meds to ease the pain so we can live and function! It’s like having a baby in hard labor. One screams from the pain. Your nerves and anxiety is high due to the pain one cannot handle. It may cause a heart attack. People will die who cannot handle the pain for a day or so. It’s horrible!! Of course we don’t like taking medicines for anything but when meds were created to help people who need it we take the medicine that helps! Do not take away help from sick people who cannot survive without it due to the medicines go right to the damaged area and helps us to survive! Not once did I ever get high on medicine… The body knows where the medicines are needed. So I want to see a meeting with these types of sick people! Listen to their stories!!!

  49. Sheri Kay at 4:43 am

    A huge thank you to the organizers, speakers and all those that were able to overcome so many obstacles to attend! We, as chronic pain patients, know the depth of what it takes to do all you did! Starting from just getting out of bed! Thank you! Thank you! Thank you! Your efforts have began a snowballing effect!

  50. Donna Rubinetti at 4:41 am

    Please advise as to follow-up.
    Thanks.

  51. Laurie Otto at 4:38 am

    Dear Ed,
    The kratom users are ALSO rallying for help with chronic pain. And we marched BEFORE the place was deserted in September. We are using an herbal substitute for mass denial of opiates – kratom. Please read up on it. It’s treating some of the SAME people (we have overlap here) and it’s helping MANY. Over 120,000 signed the petition (the FDA and DEA want to outlaw it because it’s an untegulateable plant. But, it cannot be overdosed on! Nobody dies while mixing meds! Seems like your pain rally would be better off to join forces with ours!
    See the American Kratom Association, President Susan Ash.
    I’m happy to get you more education on these parallel groups of people fighting for freedom from pain.
    I have names of educators far better than myself for your reference. Let’s collaborate and stop all this needless suffering in a first world country?!