Don’t Agonize, Mobilize

Don’t Agonize, Mobilize

By Cindy Perlin, LCSW.

Are you a pain patient who has depended on opioids for pain relief, only to have your doctor cut you off or drastically cut your dose? Did your doctor do it abruptly, throwing you into horrific opioid withdrawal? Without offering any other effective pain treatment?

If so, are you feeling angry and betrayed? Are you taking to your bed because of the increased pain? Are you thinking about suicide? Thinking about or actually going to the street to buy heroin for relief?

Cindy Perlin, LCSW

While your feelings are understandable and the increased pain is real, the actions you take in response to them can lead to greater harm or to the path of healing. Staying in bed and stewing in your anger and grief about the loss can make your pain worse and your depression deepen. Turning to the streets to buy products of unknown origin and purity can kill you.

I think everyone can understand the risks of buying street drugs, though sometimes desperation drives actions. Most are probably unaware of the dangers of taking to your bed and fuming, so I’ll explain.

Most pain, whether it’s back or neck pain diagnosed as disc disease, arthritis, fibromyalgia or headaches, is actually muscle generated. Stiff, inflexible, weak muscles, muscle injuries called trigger points, and muscle imbalances generate most pain. Joints need to move enough to be lubricated and weak or imbalanced muscles don’t properly support joints and increase pain from joint disease. Because of all of this, staying in bed most of the time increases pain. You can lower your pain levels with movement, whether it’s walking, gentle stretching, range of motion or strengthening exercises, swimming or any other exercise that you are able to do.

Build up exercise gradually. When I injured my back 40 years ago, the conventional medical wisdom was to rest. I stayed in bed six weeks and felt even worse. Then a more astute doctor told that was the worst thing I could do and to get back to living my life the best I could.  I was so weak from staying in bed so long that I couldn’t manage a walk around the block. An exercise program for people with bad backs at the YMCA helped me get moving again. I subsequently took up swimming, which has been a lifesaver for me.

Unprocessed anger and grief also increase pain, according to numerous studies. We hold onto our feelings, which are the movement of energy through our bodies, with our muscles, which tire and end up in pain. The origin of anger is fear and it is part of the fight or flight response. Anger, if channeled properly, gives us the energy we need to save ourselves in times of danger.

Don’t just lie there, do something! Take action to take charge of your situation and you will feel better. Call someone and ask for help. Get on the internet and research alternative treatments, then try the ones that are accessible and affordable. Write your congressman to complain about the CDC and the DEA. Have a good cry because it helps your body get rid of stress hormones. Sign a petition to require insurance companies to pay for alternative pain treatments.

When you mobilize instead of agonize, you will feel much better physically and mentally. Try it.

The author, Cindy Perlin, is a Licensed Clinical Social Worker and chronic pain survivor. She’s the author of The Truth About Chronic Pain Treatments: The Best and Worst Strategies for Becoming Pain Free and the creator of the Alternative Pain Treatment Directory.

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Authored by: Cindy Perlin

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Mary

Wouldn’t it be wonderful if the CMS/HHS quickly pushed payments by licensed acupuncture clinicians? As quickly as it mobilized to demand 90MME that will put so many of disabled Americans back into pain. And dreading no analgesia for severe acute pain episodes when those happen? Horrific. Anti-American.

Angela

Call to action? Action would be suing the government and politicians for sentencing chronic pain patients to a life of misery. Doctors, mine included, are cutting legitimate pain patients off, many times cold turkey. This is incredibly dangerous, and depending on the medication, even puts patients at risk of seizures. Do no harm? That oath is an outright lie in this day and age. I know you mean well, but for those of us with very complex medical problems, by the time we are put on opiates, all else has been tried. I was a human guinea pig for all the “safe” medications for 25+ years. I couldn’t function and it was the worst time of my life. Proper pain medications and muscle relaxants allowed me quality of life, and the ability to actually do things, such as move. This is impossible now that these medications are being cut. The government is effectively issuing life sentences to pain patients.

Jim Moulton

I have done a lot in the last few months. Gone to community meetings, where the pain community was not given voice. Listened on phone conference meetings where one pain pt was allowed to give her problems. Talked to my local congresswoman who admitted she had witnessed a relative who left short procedure done on weekend, with one dose of pain meds to get them weekend. I am grateful I have some pain management , the battle leaves you weary.

M.Billeaudeaux

Even though I totally agree with “just don’t sit there do something”, this has become such a horrific problem right now, it’s unimaginable. To think that Pain Management physicians are actually stopping meds abruptly, or limiting prescriptions is an outrage. No one, NO ONE, should be in pain today. Millions take opioids on a regular basis without abusing the medication, without selling the medication, without having terrible side effects. Why punish the pain-patient? This epidemic has NOTHING to do with them…. at all. Some of these suggestions are nothing all of us haven’t heard before. I think it is a crime to treat the chronic pain patient like a fugitive or a child. Let one of the policymakers end up in an auto accident and in severe pain, or acquire a painful disease, or have a loved one in pain for days and see how they feel then. Beleive me, they will not feel the same and be so quick to past judgment and make unnecessary rules and regulations that work against the pain patient. YES, mobilize NOW. Write to everyone you can think of about this drug scare. Sure, people are overdosing but they are drug addicts, not pain patients. Certainly, something needs to be done about the abuse but not one pain patient should have to suffer because of it. Speak up, call, write, sign petitions, get involved so that our fight can be heard. Other countries are not having to do this. Something is wrong with the systems that treat drug abuse, they are not working or are unaffordable. BE INVOLVED! DON’T PUNISH PAIN

Marty

Please go to this link and sign the petition to block the DEA from another attempt to limit the number of meds being manufactured. And the ridiculous one size fits all prescribing guidelines. We need a 100,000 signatures!
Thanks

https://petitions.whitehouse.gov/petition/dont-punish-pain-victims-amend-cdc-90-mme-guidelines-reduce-dea-pressure-doctors-prosecute-illegal-drugs

Barbara Thurman

Sounds find but have done every alternative treatments there I’m sure.
Then Doctor gave me opioids finally small quality of life, no side effects thank God. Been through so much like others. I have never abused, why would a chronic pain patient take that chance and loose meds, not were loosing pain meds did nothing wrong. I’m a older person with chronic illness, my Doctors have said many times we don’t know how you made it guess on Gods time table. This time in life shouldn’t have to fight for pain relief. My Doctor I know is under pressure from CDC, DEA not right he can’t even do what he thinks is right. Every visit to Doctor takes down lower, going to eat my stomach up with aspirin. Never thought I would think about getting from streets but who knows now to old and tired for this fight.

CRPS Survivor

What about our human rights? Even dogs get pain management. So much for “The Land Of The Free!”

Alice Carroll

Cindy, have you ever gone through opioid withdrawal? The pain, anxiety, fear and sickness will force most mortals to do almost anything to get some relief. Any doctor who puts a patient through this deserves to have their license revoked. What kind of a country have we become?

In my experience most long-term chronic pain patients who are prescribed long-term opioid therapy have tried every type of therapy and drug other than opioids before they are prescribed opioids. Opioids are a last resort. As these comments state it is beyond the scope of many to do much advocating.

Our treatment brings to mind what the National Socialists did in Germany to people who they deemed a drain on society. I hope our country hasn’t become so callus and intent on cutting costs at the expense of those living with chronic pain. Plain sad.

Dian

Sorry but this just more encouragement to the powers that be to suck more of our truly needed meds from us…this is NOT the kind of help we chronic pain people need. I am a 73yr old responsible woman on low dose opioids, have EDS, RA, Osteoporosis, fibro..my body is slowly crumbling…no no…this does not make me feel the least bit encouraged…but thanks anyways

Kay W

Wow, maybe this is just what I needed to hear. I’ve been terribly depressed, in bed, to the sofa back to bed and feeling terrible. I really should try to get out and at least walk once a day.

Illinois Joy

Sign me up for the Call to action lawsuit. We have a right to live.

Dianne L

Thankfully, my pain situation did not arise until after I had retired. I cannot imagine trying to work when pain is a constant companion. If “movement” could fix anything, we would all be in motion non-stop. Simplistic suggestions are made by those who have no real experience in the world of chronic pain. All amateurs have to learn sometime. This is only one opportunity. Movement help some people some of the time. Many of us have been out here fighting for relief and actual help for more years than you have been alive. Me? I am going to be 72 and I really don’t care about what the government says about pain medications when it is the government that is skewing the statistics to make their point.

To all who have commented:
Please note that I am opposed to the practice of taking opioids away from patients who are in severe pain, unless and until they are given other treatments that work at least as well as their opioids, if possible. However, the reality is that drastic reduction or termination of opioids is happening frequently to patients. And the question I am trying to answer here, based on my knowledge and experience, is, “What can pain patients do to help themselves and to change things?”

I made the comment to my Dr. Over the phone ” maybe I should find a new Dr. ” And he quickly said. Ok I’ll get you a 30 day letter of separation in the mail. I was stuck trying to find a new Dr after being perscribed fentynol 7.5 mcg patch 200mcg atiiq sucker and 5 mg Norco . I even asked him if he would help me with a referral or send me to another Dr. Nothing… It was so hard taking myself off the 200 mcg sucker .. I had a few patchs left and found a new Dr after going to 4 pain MGMT places and being told no no no. What my Dr. Of 17 years did to me was CRULE and Mean
I would live the world to know my story and my separation from Dr.Steven Arbit

Kris Aaron

There has been mention on several pain sites about filing a class-action lawsuit against the government (CDC, FDA, DEA, etc.) regarding the loss of our opioid prescriptions. I spoke to an attorney the other day, and learned that it’s nearly impossible to sue the government.
Seriously. We would have to get the government’s permission to file such a suit or take it to the Supreme Court.
The legal website nolo.com explains the situation in depth, but here’s an overview: Historically, under the doctrine of “sovereign immunity,” you were not permitted to sue the king. Sovereign immunity has carried over to modern times in the form of a general rule that you cannot sue the government — unless the government says you can. Fortunately, the Federal Tort Claims Act (“FTCA”) allows certain kinds of lawsuits against federal employees who are acting within the scope of their employment. For more information, click on https://www.nolo.com/legal-encyclopedia/suing-government-negligence-FTCA-29705.html
But FTCA applies to suing “federal employees” — we would have to sue a specific person, not a department. Suing a department (CDC, for example) is entirely different.
We’ll keep looking for alternatives. We will NOT give up!!

Brian

I appreciate what you say, BUT using myself as an example, I respectfully suggest that beyond the basic goal of being reasonably active, you’re missing the mark by a country mile.

I was active in sports and working in heavy construction, and then even when I was immobilized by pain for a short time and my accumulated injuries became known to me, I got back to my old ways as quickly as I could. My doctor for many years told me that I was the only one of his chronic pain patients who he would ever say “Slow down!”

When that doctor retired a few years ago, his replacement has shown no interest in my care. He is oblivious to my activity level, even when I show him pictures of a building I did, including 15 cu yds of soil cement (dug out material, screened it, mixed with cement, placed and finished) which involves with rehandling about 35 tons moved by hand in four months. That doctor removed me from opiates despite the recommendation of my pain specialist and told me to do “stretching and bending and take a Tylenol”.

I’m sorry to say that your article smells like the old WCB thing about getting up a moving. In basic, that’s fine. But if you recall, BC’s WCB was exposed for paying bonuses to forcing people back to work before they were medically ready to return to work. No WCB person was fired and no bonuses were clawed back. Go figure.

To suggest that chronic pain person’s issues are primarily muscular and not neurology is missing the mark. When chronic pain takes hold, you get referred pain and spams, sometimes full-blown Fibro. Of course, laying around in bed or sitting for prolonged periods is bad, but you have to realize that for some of us, it’s painful just to walk. And in my case, I am still active so it’s not like I just haven’t had enough exercise lately to break through to a new level of activity without pain. I work through the pain even when I had meds, and it was tough then and it’s Hell now. I’m up half the night because I hurt too much to sleep. I used to be very productive and now my activity level and my accomplishments are hobbled by pain.

I wish that someone in the medical community had a really chronic pain story of their own, because hearing about someone who had an Owwie years ago and was lucky enough to heal isn’t comparable to folks with permanent painful injuries.

Neldine Ludwigson

Thank you Ms. Marvel! I’m your age and in the same boat. Even using the bathroom has become a voyage through hell itself. Every time I read one of these super perky get up and move stories I want to scream. Pushing myself through the pain, even now, only makes things much, much worse. Sorry you’re suffering in so many ways. Thank you again for your awesome comment😆

HAZZY

WITHDRAWAL IS HELL, THROWING UP AND [edit] YOURSELF IS NOT FUN, THEY NEED TO LEAVE US CHRONIC PAIN PATIENTS ALONE.

Linda

Yes, some of us forget – that the movement you can do “gets the juices flowing”, when and if you’re able to. My heart goes out to all who just can’t.

My PT told me that with movement, it sends blood and healing lubrication directly to the joint. (We were discussing my knee taking away my ability to walk because of the harsh pain)

So for me, that’s what I was told. Don’t know if it’s fact or not, just that my PT told me.. plus, we all know if we sit too long we’ll get stiff. (Us older folks!)

Great post with really nice encouragement. Thanks very much!

Kris Aaron

An excellent list of ideas.
Now what?
Chronic pain reduces our normal drives. We are left exhausted, barely able to make it from bed to bathroom. Demonstrating? Marching? Even meeting with our elected officials is more than we can manage.
Chronic pain patients have become collateral damage in the misguided but highly profitable “war on drugs”. Let’s run the numbers: There are at least 10 million chronic pain sufferers (people whose pain lasts more than three months) in America. If just half of them — 5 million — are willing to spend $10 per day for two illegal opioid tablets, that’s $18.2 BILLION a year for the drug cartels!
With the current and projected restriction on the manufacture of legal opioids, America’s drug warriors are creating a potential underground, tax-free economy worthy of a small country.
Taking opioids away from people in pain as a way to end addiction is as useless and misguided as stopping food production to end obesity. Telling people in pain to exercise and improve their attitude isn’t enough. We need to know who is lobbying legislators and what groups are fighting to restore sanity to the opioid issue.
I’m working to bring chronic pain patients in Wisconsin together so we can lobby our lawmakers — putting our faces — pain and all — behind our words. Anyone who wants to join in can contact me at kaaron657@gmail.com. I do NOT want to turn to illegal drugs to control my pain. But a lifetime of suffering is no life at all.

Sharon Marvel

Do you have Degenerated Disc Diease?? I had so much PAIN , i worked twelve hour shifts in a Doctors office. I was an Optician cutting lenses some days at least fifteen or more plus help patients pick out glasses, repairs, help the staff. I ended up cutting my hours after it went two hours and I was in so much PAIN bone rubbing on bone. Now i used to go chiropractor, acupuncture, injections, water therapy nothing helped. Then i started self medicating alcohol broke humorous at the top, have a beautiful scar, which reminds me to never drink again. Now i go to a Pain Management Doctor and yes i take opiates NOW i have a Life, can now do gardening, take my dog Stella for walks, house clean all in moderation because i will still get breakthrough Pain, and i’m on the lowest does. NOW before this like i said had to leave work and get disability!! When i Stand, Walk,Clean ,Sit too long PAIN. So don’t preach to people that have severe problems, and NO i don’t even want to think of people having to go out on the street to find something for PAIN!! There are an awful lot of people dying from drugs on the street most of them have Fentanyl in it killing people. I’ve had everything taken away Ballroom Dancing, Skiing, Yoga and i’m a responsible woman 66 years old, I DO NOT ABUSE MY MEDICATION!!!

BarbaraDH

Wow, if I follow your advise, I’m healed!
For your information, which is obviously limited, some of us have more complex problems than just lower back pain, and they are the reason we were on opioids in the first place.
I have Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. There is no cure, no treatment, and it’s degenerative. So my organs, muscles, tendons, blood vessels, skin, bones… virtually everything in my body… is abnormal. It causes chronic pain, joint dislocations, autonomic nervous system dysfunction, chronic migraines, digestive motility problems, and much, much more. I have secondary conditions as well, including fibromyalgia, ME/chronic fatigue, and postural orthostatic tachycardia syndrome (POTS).
I was cut off from my pain meds in May of 2016. I had to remove my fentanyl patch immediately, and was given 3 weeks to get off oxymorphone. And I was given no alternative treatment for my pain. I was just cut loose.
I had no CHOICE but to stay in bed. Exercise? Has to be done very carefully with EDS, because you may easily dislocate more than one joint, but even worse is the post exertional malaise from the ME/CFS, which lands some of us in the hospital.
And some turn to street drugs because they have been coping for so many years with the pain and fatigue that their intention IS to die. Some of us want the suffering to be over. And I don’t blame them. I have entertained the thought of suicide many times.
Don’t push your easy solutions on those of us who are dealing with much more complex problems that you couldn’t even fathom. If I take to my bed for a few days, it’s because I have no choice.
You might better use your writing skills to try to talk some sense into our government concerning chronic pain. That would be much more helpful than the condescending piece you just wrote to those of us who are suffering and are coping the best we can.

Danny

While I’ve had two discectomy procedures on two different lumbar discs, back pain isn’t my main problem. However, the pain leading up to those operations was awful, so I have great sympathy for those with severe spinal problems and pain.

My disabling condition causes severe, intractable head pain. Telling someone with constant, terrible head pain to “exercise” is like telling someone with severe spinal pain to try bull-riding. When I’m bedridden for 7+ days with head pain, my back gets terribly stiff and painful. But I literally cannot exercise. The title of this should’ve included back/neck pain, because “getting exercise” is NOT the solution to all causes of pain.

I can’t speak for anyone else, but I imagine those with botched back surgeries or congenital spine problems might have some choice comments, as well.

Just as for with many others, exercise is an option for SOME, but the one-size-fits-all attitude expressed here is just as callous, and ill-advised, as it is in other situations.

tabitha

The CALL TO ACTION IS A CLASS ACTION LAWSUIT AGAINST ALL THOSE RESPONSIBLE FOR EFFECTIVELY SENTENCING HONEST MEN AND WOMEN TO DEATH. Not Exercise.

Most Chronic pain patients would never to go out the street, but as the DEA and headline-seeking politicians keep pushing they are creating the next health crisis in America, . Those suffering in pain will respond in 1 of 4 ways .

1. The will seek relief on the streets. (very unlikely but i don’t blame them )

2. They will hoard what little medicine they have in order to take their appropriate dose prescribed to them back when doctors prescribed on the patients need instead of government mandates based on Heroin addicts

3. They will disappear into oblivion, sign up for disability and suffer alone until they die

4. They will kill themselves because no human should be expected to live to suffer every day in debilitating pain, A dog is now treated more humanely than a chronic pain patient. . After all a vet doesn’t hesitate to prescribe pain meds when clear indications of pain are there. ,

Your call to action is significantly lacking. We need to sue the hell out of these monsters. Once they take my meds away I will lose a 110k year job, be unable to work at all. I already know. If I do not have meds I am a cripple within days. No way I could maintain a normal life semi-free from pain without those meds that allow me at least some stability.

Jane Heinrich

I have read the book. I actually am already doing a good bunch of the things. She thinks pot and vitamins are going to cure you. Maybe they will if you don’t have bone pain. I passed it on to someone who might use but in reality intractable pain patients are the ones who are suffering the most and exercise is impossible at that level of pain and no narcotic meds.

tabitha

That is not even realistic. We take to our beds because if we exercise we are laid up for days due to the fact we do not have the medications to assist in getting that exercise and dealing with the pain. any exercise i do makes my pain worse and it stays worse until i stop exercising and stay laid up . It’s a ridiculous cycle. they are killing us. I can not imagine anyone suffering with Chronic Pain bad enough to be on meds is able to exercise without those meds. . CHRONIC PAIN PATIENTS PROTECTION ACT NOW

Nesi

Ok what I was hoping to read was something a bit more hard hitting like we have a leader in our fight for our rightly deserved medication and here is where to join… but what is ended up being was a bit like stating the obvious. Yes I know that if I lay in bed all day my muscles will blah blah blah. I am in friggin pain. Real pain scale top of the charts rated alongside cancer pain. For 23 years thank you very much. My medication has been cut by half. I am looking for our leader in this fight. No time to read about eating my vegetables and daily yoga. Gawd.