What Every Chronic Pain Patient Needs to Know

What Every Chronic Pain Patient Needs to Know

By Cindy Perlin, LCSW.

When I was 25 years old I hurt my back while running to try to get into better shape. I had been healthy and active up until then and was attending graduate school to earn a social work degree. I stopped running but everything I did made the pain worse until I was at the point where I was in excruciating pain 24/7. I had to drop out of school and my life virtually ground to halt while I made the rounds from doctor to doctor looking for relief. They couldn’t find anything wrong with me. They tried lots of drugs that didn’t reduce the pain and made me into a zombie. After more than three years of this, I ended up in the office of a well-respected orthopedic surgeon who seemed to be very compassionate and told me he didn’t know what was wrong with me or how to help me and that I might have to live with the pain for the rest of my life. He gave me a diagnosis of “chronic body pain” (by this time the pain had wrapped itself around the front of my body) and told me to just live my life the best I could.

Cindy Perlin, LCSW

By this time I was 28 years old and the rest of my life was likely to be a very long time. I didn’t want to live like this and I started thinking about suicide. Fortunately, a friend of mine suggested I read a book about the mind/body connection by a man who laughed his way to health after being diagnosed with a progressively crippling and painful degenerative joint disease. The book mentioned biofeedback, a treatment that measures physiology and feeds that information back to the patient in order to help the patient learn to control his body. A few sessions of biofeedback changed my life when I put what I had learned into day-to-day practice. I was eventually able to return to work and finish my master’s degree. Many years later I decided to go into private practice using biofeedback and other mind/body techniques to help others struggling with chronic illness.

I also decided to write the orthopedic surgeon who was compassionate but wasn’t able to help me. I told him in the letter about my healing journey and how I was now able to help others. I suggested we meet so I could explain to him how I might be able to help other patients like myself whom he wasn’t able to help. He refused to meet with me. It’s been 25 years and I’ve never gotten a single patient referral from him or any other pain specialist in my area that I approached about my work. Fortunately, many pain patients have found their way to me anyway and I have been able to help them through biofeedback and other mind/body interventions as well as guiding them to other kinds of alternative therapies that can relieve chronic pain.

I’ve had other pain challenges along the way, including a foot pain problem that caused severe pain whenever I walked more than a block or two. The mind/body approach didn’t work for that and it took 14 years to find a solution, a type of bodywork known as Rolfing or structural integration.

What chronic pain patients need to know is that chronic pain doesn’t have to be forever. The diagnosis of chronic pain only means that the pain has lasted more than three months. There are solutions out there that even the most seemingly knowledgeable doctors don’t know about and that even the most seemingly nice doctors won’t tell you about even if they do know.

It’s going to be up to you to find the answers. I don’t want you to have to stumble around for years like I did, without any guidance, suffering terribly and losing hope. That’s why I wrote my book, The Truth About Chronic Pain Treatments: The Best and Worst Strategies for Becoming Pain Free and why I recently created my online Alternative Pain Treatment Directory. Please check out these resources. Nothing would make me happier than to know that they helped you find pain relief.

Don’t know where to turn for pain relief? Enter to win a free phone consult with Cindy Perlin. Submit your entry Here by Friday, January 12 at Midnight Pacific Time.

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Authored by: Cindy Perlin

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Tim Mason

Sandy Sullivan, I started seeing pain management doctors back in 2008. I had already seen orthopedic surgeons, 3 infact, and all said I needed a lumbar fusion. Of course I ran from them. I stayed with one pain management doctor that gave me several lumbar steroid injections over 3 to 4 years. I grew tired of that after having the “elephant setting on my head” type headache.
I finally went to an Orthopedic surgeon and he said “You need to much done, I don’t think you insurance will pay for it”
Then I went to a neurosurgeon and he said I needed a fusion because one disc had slipped over another one. My radicular pain was minimal at that time but my scrotal pain was horrible.
I got the ALIF 360 with instrumentation (polymer disc, plate and screws) in 2014. My pain was gone for about a year. Then I go back to the neurosurgeon and he says there is no surgery for you, although you have a solid fusion you have a lot of epidural fibrosis and scar tissue is encasing the descending nerve roots, and extruded disc above the hardware. He sent me back to another pain management doctor.
They took care of my pain for three years but I was having to increase the potency of my pain medicine. My anxiety is very high. It got to where I could not stand or set for any length of time. Pain was constant and intense.
People at work would see me pause and set or lean on a wall in the hallway.
I have very few bills but I loved my job as a research chemist. I was having to take incapacity days every week. Very depressing.
I am tired of being house and bed bound. My mobility is limited.
Needless to say I get a FBS diagnosis from two doctors. But something tells me that all those injections had a lot to do with the shape I am in.
I don’t want to go any higher on my medications at 60. I have had 1 hip replaced and need another one but the post op pain while on these medications will throw you in shock. I have been there.
It is a living HELL.
Within a year my pain returned even worse than before.

Ibin

A a 23 year “chronic” pain patient, lower spine, very invasive surgery with the “fix” being decompression, with surgical plates and screws almost 25 years ago I have come to believe that the procedure has cost me a lifetime of incurable CONSTANT pain well above the human ability to tolerate. After all alternatives, and I mean even pschological treatment. I have found almost a quarter century of pain relief through opioid medications. Yes, the dosage has had to increase but…..after 6 years with a different spine pain management specialist, I was able to plateau on a dosagee of 33 percent less per day dosage now. There are many days per month that I still have very hard days to endure the constant pain but, I remained employed, self sufficient, enabled with “normal” body function until the first of 2017 when my provider avised me that he he must reduce my medication by 80 percent as it exceeded CDC reccommendations, new policy. HOW in the h can ANYONE short of my one on one pain management physician understand what is the most effecive, enabling therapy for my personal pain management? Bankrupt nearly now, suffering from anxiey AND clinical depression with daily excrutiating pain,.I will always advocate for the PHYSICIANS who realize the best pain management therapy.for every individual patient.. I can not be “talked” out of realistic physiological pain issues. I….as good physicians have dealt with incurable pain in the most effective, least invasive, self harming therapy for me I would have had a great deal LESS issues with an attempt at alternative pain management therapy IF not forced to surrender very quickly and forcefully from one pain management therapy that has enabled me for so long…..without personal detrimental, physical OR psychological effects

Tim Mason

If they are “In-House” they may be ok. But if it is an Out-House Psychologist forget it. They see way too many 18-23 year olds to be of any value to an adult.
I liked your comment on this thread.

Tim Mason, ever since PROP started to make way into the CDC the ‘pain psychologist’ has turned up in nearly every single pain clinic or primary care clinic [larger more common but my doc had *one* and she got fired…] My friend has Hashimoto’s, Interstitial cystitis and suffered many injuries to her body; we also just discovered a connective tissue disorder like Ehlers-Danlos. [she came to me for help getting her medical straight for disability and making sure these doc’s did her right. She’s watched me fight for 18 years now and remembers me before I was sick] The pain *counselor* told my friend repeatedly [before they confirmed Hashimoto’s which has all sorts of anxiety with it when thyroid goes off] but this pain counselor told her to *sit on the floor* and *GROUND YOURSELF* They almost kicked me out; in fact my friend had to sign paperwork to keep me in all her visits! Until I made a formal complaint. Then they got serious about figuring our my friend’s thyroid issues and confirmed Hashimoto’s via antibodies. They didn’t make her sign paperwork for me to be in the room. The doctor [and others] started to recognize my friend would ‘shut down’ without me in the room. I helped them figure out what was wrong with my friend by pointing them in the right direction. The counselor and I had a huge disagreement. I was so angry that her anxiety was dismissed! And she was still a ‘resident’ [clinic connected to a hospital] psychologist! She would get upset when I refused to use the term ‘doctor’ for her [not after that ‘grounding’ bs] Took her to *MY* psychiatrist who after several visits with me in the room [we had to explain how terrified she is of doctors, she’s suffered so much medical neglect and abandonment. One even accused her of….munchausen’s syndrome! [tho he never told her and never took action to protect her from herself, in the end; those notes were removed from her medical – lest he wanted a neglect charge?!] Talk about being put through the whirlwind! 13 surgeries in 6 years but it’s all in her head?! grrr. Today she is managing her medical without me. But still looks to me for guidance. Florida has medical MJ. Since she cannot even ‘get in line’ for pain meds [and like the rest of us; well proven and documented pain along with anxiety] her and I are going to sit down and go through the process. The concentrates mixed w/a strong CBD help her get through the pain and the few tablets for anxiety help ease both. PROP wants every doctor to have psychologists for patients on staff. Gee, wonder why? Could it be that most who have a psychologist degree work in other industries not connected to medical and this puts his people to work again? YES. You can refuse though especially if you have your own psychiatrist. The best part? Any time someone questions *MY* anxiety medication… Read more »

Biofeedback does work for some; just not for everyone. Though it would be great if this option was available to *try* for everyone. The day I became a ‘chronic pain patient’ was when I was rear ended while sitting at a light. I’ve Ehlers Danlos Hypermobility. It tore my neck apart – couldn’t lift it for a week, like a newborn. Never been the same since that night, Jan 16, 2000.

While searching for answers and relief; I ran across a doctor who talked a lot about biofeedback but when *I* requested it he said I wouldn’t be a good patient for it. Why? Oh he hated opiates that’s why. This was in 2001. Had to see him about pain because I seriously tried to kill myself. Not sure how I survived. But I did. Next time it will be overseas where there won’t be a mistake; as I’ll have professionals to help me end my life. 30 days after request and medical work up [we even joke that the EU docs will end up finding a way to help long term even if I was in the US or Australia again; making the trip to end my life a trip that saves it…well that’s the joke with my family. Who struggle but understand when I say no more; I mean it and that I’ve tried everything allowed to me..]

April 2001 I just couldn’t take this new life of agony. Especially with the uncaring around me telling me it was in my head which is the lazy version of “I DON’T KNOW” “So it must be you”
Doctors.
[oh it’s not my neck and spine have no disks, most are herniated or desiccated with bone spurs before 40 years of age! Im almost 47 and been unable to work since 38]

In the end despite the careless doctors who refused me biofeedback [insurance to cover it too] I taught a version of it to myself. I taught myself to remember what falling in love feels like; to flood my brain with oxytocin. It’s hard to do when stressed and a lot of demands but it has become one of my many go to tools. I tell my family “Im going to sit quietly for a while, not ignoring you. Just give me a bit” thankfully they do. As it doesn’t look like ‘meditation’ tho it is…. it looks like me sitting outside staring at the trees, birds and squirrels.

Robert Ivan

To: Bob Schubring,

Thank you for posting the link to this. As the pharmacist at my wife’s hospital states, the use of Opiates is least evasive for an individual who suffers from intractable pain as it mimics the body’s natural production.

The other host of anti depressants, anti anxiety, gabapentin, beta blockers, etc., are far more deleterious.

Every body is different as we know everyone’s pain is different. I admire the pain patients that try everything so they can reach a pain free day. I did it too, tried everything under the sun that my doctor’s could come up with. After the neuro-stimulator implant it occurred to me that this pain is not going away without a fight. I became a pain warrior and in the this I use opiates. It’s what works for me, I’m not getting the milligrams needed since the CDC and all the hype, I’ve been reduced and suffering once again. Still seeing my doctor monthly for the scripts, running out of money and still in pain. It’s my pain, it’s my body, it’s not fair to take my methods of pain relief away and leave me fighting again.

Tim Mason

A “Pain psychologist”??? You deserve a pain psychracist. You need someone with prescription writing credentials not some one that is going to suggest crayons, coloring books and green light rays.

Good luck with the psychologist.

Susan

I agree, but doctors are scared to death in prescribing opiods. They are afraid of losing their liscenses, their livelyhood. While many traditions have changed, the biggest is the doctor patient relationship is the biggest mistake, it is the rule of payment they have had to swallow. Don’t blame the doctor, blame the government for a lack of understanding of the chronic pain issue. The big Pharm is ultimately responsible for this mess and they should be held accountable and they should pay for correcting it.

My article was not meant to imply that pain is in your head or that biofeedback is the answer to every kind of pain. In fact, if you read the article again you will see that I state that I had a second pain problem that did not respond to biofeedback at all and needed a different kind of intervention because it was structural. The point of the article is that your doctor is probably not going to fix you and that you need to take matters into your own hands and find out what will work for you. Even though I have been at this for forty years, I am still learning about new ways to manage and heal pain. Among some of my recent discoveries: low level laser therapy, kratom, wild lettuce, PEMF, and just today, the Biomodulator. In addition, as a neurofeedback and biofeedback practitioner, I am learning about new options and protocols with neurofeedback that can reverse the brain changes that cause pain to persist despite physical recovery. There is so much out there. Don’t give up.

MichaelL

I decreased my fibromyalgia pain with biofeedback. I controlled tight muscles in my neck and upper back. It is part of a good pain doctor’s armamentarium. Sadly, most insurance won’t pay. The patients were also unwilling to pay for something that just “might” work. They wanted results, for their money! Sadly, too many “pain doctors” are just anesthesiologists who found a new way to pad their pocketbooks. My dealings with the “pain doctor”, that I was forced to see, had no better results! I found, on my own, that a TENS unit helped with the times when nothing seemed to work. That was nothing he chose to give me. He bragged that no one, that he saw for peripheral neuropathy, was on “narcotics”. Sadly, the fact that I had a graduate degree, in college, gave me a much better view of the entire field of pain medicine. Being a surgeon, who dealt with pain in, almost, every patient that I saw, also increased the knowledge base that I used. An added Certificate in Pain studies, from a two year university course, made me better educated than 99% of the anesthesiology based pain doctors. Sadly, “acting like you know more than us” resulted in my early demise as a physician. Burnt out, I self destructed. In the end, I suffered an injury while enjoying my unemployment. I then received a disability pay that allows me to collect full disability. Life is much less stressful when I don’t have to swim with the sharks, any more!

Doug Hilgers

All:Forgive Me sincerely if I offend Anyone commenting here or those very likely tens of thousands Whose feelings were tweaked to some degree by the “ mind/body control” perceptions and recommendations ( If Cindy is recommending): I was tweeted sufficiently to give Cindy a One :One phone conversation and apparently did not feel that I swayed Her opinion at the time and certainly not now .
As a retired RN of 45 years of what I feel was dedicated and SUPPORTIVE service to INDIVIDUALS suffering from pain , both acute and chronic ; I , myself with a vaguely diagnosed problem of CRPS and an inoperative neuroma .
In that effort spanning decades and At deference with Cindy ( and others ) I was taught and dedicated to the working principle, without exception , THAT : NO!, I can not begin to understand anyone’s pain: Would anyone disagree that pain is very personal: We own it ; try to live and love with it but We do it alone and with those wise enough and humane enough to support You/Me/Us -there is no “ recipe “ wether mind /behavior management , no medication or combination to cause it to abandon it’s grip on Our lives .
Yes , Cindy , there are avenues to “ disassociation “ of Our minds from the structural and/or organic seeds of this monster ( ie. Ketamine [ pethaps]) But to speak down to Us , to even infer a magic billet , or to command Our brains to ignore the remainder of Our body/ organs defies the oath that all Priofessionals must acknowledge :Cure or relief occurs through the reciognition of Our individualy distinct and very Human blend of the mind, body and spirit -Each distinctly individual and with any effective treatment addressing all parts of ever complex You , Me and Each One-Thank You
Doug

Tim Mason

Being a person with intractable pain and going thru pain management doctors, surgeons, physical therapy, etc. is like playing the game of “Monopoly” only this version was created in HELL.
Intractable pain DOES last a lifetime. I am not sure about forever though.
Instead of hotels I think I will have Kolodny addiction centers one can buy, or a CVS or Insurance companies for that matter. Of course one could always land on the test positive for a Schedule I and “Go straight to Jail”.
The game pieces get interesting. We have the Hyperemic syringe, the little Rx bottle, the speed pipe and the DEA badge.
..I will start working on it right away…

Cat

I am a long term chronic pain patient. I tried many things to deal with my pain, which is caused by a combination of birth defects, Lumbar radiculopathy, herniated cervical disks, Lupus and kidney disease. I tried homeopathy, chiropractic, hypnosis, biofeedback, acupressure, Bowen Therapy, massage, and a medical intuitive. In the end, the only thing that effectively and consistently keeps mu pain at a tolerable level is an opioid drug.

More and more I see articles from doctors, the CDC and others saying that pain is good and necessary and it won’t hurt us to feel it. I beg to differ. I think pain management should be between a patient and their own doctor, and definitely not by some nameless, faceless politician or administrator.

Steven Smith

They are killing us! Please, somebody do something. I have read this column long enough to remember when our Dr actually treated patients for pain. This is just offencive and downright dangerous to our health. I think you all know what I mean. Now, I am supposed to wait two and a half months to talk to the pain psychologist. Ridiculous!

Susan

I have had chronic pain for 67 years. I read Norman Cousins, “Anatomy of an Illness” and other books such as “Silva Mind Control”.
I used cannabis for 30 years, had very little pain. Then my MD said stop. I had to go on opioids. This is the doing of the medical profession, not mine.

Judie T Plumley

I am sorry you were so offended. There are a lot of people out there just like you. I am sure no one thinks your pain is in your head. I would have reacted just like you a few years ago. I was in that kind of pain. Thank God I am not now.
Every person is different. Most everyone reading this desperately needs answers and they need pain meds. But some do not have to go to that extreme.
Please, ya’ll, we are really trying to help each other here. What works for one may not work for someone else, but then again, it may.
I think every one here needs their pain meds. I think doctors ought to treat patients and the government needs to stay out of it. I also think there ought to be more than opiates in the pain tool box.
I am really sorry you are in so much agony. Hugs.

Alice Carroll

I too was not helped by biofeedback, glad it worked for the author but for some it simply does not. Please let’s don’t start the “It must be your fault if you are in pain.” I heard that from my surgeon after 2 failed back surgeries. (Have you ever had a surgeon admit a surgery was a failure? Not me.) Face it, some can only be helped by opioid medication and at this point that’s all we’ve got.

I would encourage all who comment here to refrain from jumping on each other or on Cindy Perlin. We are each speaking from our lived experience.

I’ve talked for over 20 years with people in pain. Many of them had tried various “alternative” therapies. It is undeniable that techniques like massage, acupuncture, creative visualization, Reiki, Chiropractic, and Rational Cognitive Therapy do help some people some of the time. But it is also undeniable that these therapies are not a reliable substitute for opioid analgesics or other pain medications in the great majority of patients.

In trials where patient outcomes are compared to sham therapies or placebo, the alternative therapies often do only slightly better than placebo. In many trials, there is no discernable difference. But we should remember that placebo can help as many as a quarter to a third of all patients. That’s a significant contribution even though medical science doesn’t understand how it happens.

A reasonable rule of thumb in these matters is “if it hurts, then don’t try to push through the pain. Try something different.” There are no perfect solutions. But kindness and courtesy are never wasted, even if we feel called to disagree with one another.

Bob Schubring

Cindy’s very fortunate that the back surgeon she saw, did not try to operate on her. Back in the days before MRI scans, some surgeons would do ‘exploratory’ surgery in cases like hers. That would leave the patient with tired muscles that had also been damaged with a carving knife. The pain would be worse instead of better. 30 years of US Government-funded studies have conclusively proven that the human body manufactures the opioid drug Morphine, from proteins we eat in our diet. Morphine and dopamine are part of the biological clock that wakes us up in the morning and puts us to sleep at night. (Folks interested can read about it here: https://www.academia.edu/35612995/Evidence-Based_Policymaking_Whats_Absent_from_the_Opioid_Crisis ). Every patient who uses an “alternative therapy” is simply making better use of this natural morphine supply to get relief. Cindy Perlin does not disclose anything about her past drug use and maybe didn’t even think much about it, but a great many young people who are trying to lose weight and get in shape, make the mistake of consuming “diet pills” that contain powerful stimulants. Students cramming for exams use the stimulants to stay awake and read, while having some sort of social life on campus in the daytime. Nowadays kids can start off on a stiff dose of Starbucks™ coffee, find some sugar-free Mountain Dew™, maybe try Monster™ or Red Bull™ energy drinks, and keep ramping up one’s intake of caffeine. More-powerful drugs are available from illicit sources: Ecstasy™ pills contain methamphetamine, the drug Hitler took so he could yell for 3 hours to an audience and not seem tired. For purists, crooks will sell them pure methamphetamine crystals that can be smoked or snorted. The stimulant landscape is a lot more varied, than it was when Cindy was 25, but the risks of using these drugs are increased muscle tension, which risks muscle injury. Worse yet, the 30 years of Government research reviewed in that linked article, conclusively shows that the stimulants remove natural, sleep-inducing, pain-relieving morphine from the body, replacing it with toxic metabolites of the stimulants. We come away with worse pain, feel more tired, yet are unable to fall asleep. Some people do desperate things to force themselves to sleep, while still taking the stimulants that are causing the problem…we read about those who mixed opioids, booze and sleeping pills who are dying and mistakenly call it an “opioid crisis”. Cindy didn’t think to discuss it in her article, but I think it is likely that sometime during her exploration of the mind-body connection, she cut back her intake of coffee and other stimulants, noticed that her body was telling her she was tired, and started giving her body rest, when rest was needed. However she came to that conclusion, it was the correct conclusion. To be healthy, we need exercise to challenge our bodies, then we need rest, so that our bodies can regenerate themselves to harvest the benefit of all the exercise. Muscle-tension pain is a clear… Read more »

Judie Plumley

Cindy,
This article is great. I believe there are many ways to reduce pain. Thank you for your work and such a hopeful article.

I’m not surprised the physicians responded (or lack of response) this way. They are not educated to think out of the box and sometimes believe alternative medicine is not legitimate. I however believe in all the therapies you mentioned. Mind over matter can work and biofeedback I believe is very important. Your unlocking potential.
I have recently started meditation, really listening to my body. Yoga, Pilates modified. Any way I can help my body and mind to gain strength and battle the pain I live with.
Keep up your good works! I believe mainstream medicine is starting to look into alternatives for pain management. It’s not just the pain your treating, we must look at ourselves wholelistcally to find some peace of mind and heal ourselves with what works best.

Danny Elliott

I can hear my Mom right now: “If you can’t say something nice, don’t say anything at all.” Except I became a master of biofeedback and relaxation techniques and neither reduced my pain one iota. I do still use them, however, while in the middle of an extended period of severe pain that entails 10-20 days in a dark, quiet bedroom – my head pain feeling like there are hot, searing knives being jabbed into my eyes, forehead and behind my ears; my back becoming stiff and then painful from the constant bed rest; the doorbell rings or a neighbor uses his gas-powered leaf blower and the noises pierce my brain like a mail-in. No, biofeedback doesn’t affect my pain at all. What it does do, however, is allow me to fall asleep for a while, escaping the torture of my brain injury.

If there are people who can be “cured”, like Ms. Perlin, using biofeedback, God bless you! You are one of the luckiest people on earth! But my experience shows that there aren’t too many people like that. (Probably should’ve followed Mom’s rule, but I can’t let this type of article pass without telling the readers about my experience. Not trying to be negative or ugly. It’s just that I want people to know that biofeedback isn’t a panacea for most people.)

Jannie White

Is everything chronic? Do people know the difference between acute, reoccurring and constant? I live with RSD/CRPS-constant. I have heard from a lot of different people who has told me. They have chronic pain when they have arthritis-reoccurring and those that missed the nail and hit the thumb-short lived Acute. Chronic with three different categories of pain.

connie

I know that biofeedback and such work for some people and some types of pain but sadly for me it didn’t. I worked with a therapist on biofeedback and guided imagery for over two years with zero success. I use various techniques to make it through the day but without pain meds I don’t get much relief. Chronic pain is emotionally and physically exhausting!

Andrea Monty

I do not normally comment but after thIs post I feel I must.

You do not obviously have true severe pain. Come back and say this again when you have bone grinding on bone from complete herniated disks and muscle atrophying because the pain is so severe you have to will yourself just to get out of bed. I have all this and none of it is my head. My doctors do know what’s wrong but unless I have surgery on just about every section of my spine they can’t really do anything. You said you have wide spread pain they can not diagnose but biofeedback helps?! Seriously do not offend me anymore.

I started following the National Pain Report a few months thinking it was advocating for very real and serious chronic pain patients. In the last month or so all I am seeing is posts that our pain is in ‘our head’ with mumble jumble of biofeedback and one person basically telling us to “get on the train” or stop bitching. It seems to me that politics and the so called ‘opioid crisis’ has gotten hold of people on here.

We are in VERY REAL AND VERY SERIOUS PAIN. Please stop insulting our intelligence and stop insinuating that our pain is in our heads.