My Story: Why I’m So Passionate About Alternative Pain Treatments

My Story: Why I’m So Passionate About Alternative Pain Treatments

Many of my posts in the National Pain Report, on my blog and Facebook pages that promote alternative pain treatments are often met with anger by chronic pain patients. They accuse me of trying to take away their opioids (as if I had that power). They tell me that I obviously have never had severe pain. Some go so far as to wish that I would be stricken by the worst, most unrelenting pain possible, apparently to punish me for the crime of mentioning that something other than opioids might have any impact on their pain.

Cindy Perlin

So here is my story. I am not claiming that it is as terrible as what some pain patients go through, but it is my story.

When I was 25 years old, in 1977, I was in graduate school, working towards a master’s degree in social work. I was healthy and active and living with my boyfriend. I enjoyed bicycling long distances and hiking. My boyfriend was planning a bicycling trip through parts of Europe with a friend and I wanted to go with them. They were stronger riders than me and my boyfriend told me that I could only go if I could keep up with them. So I started running to get into better shape. As I continued to run, my back started to bother me. I went to a doctor who told me to stop running and gave me a handout with some back exercises to do. I stopped running and hurt my back more doing the exercises. From then on, anything I tried to do seemed to injure my back more. The last straw was a yoga class with a poor instructor who was not giving proper guidance. After that class, I was in agony 24/7. I was in too much pain to attend my classes and had to drop out of graduate school. I could barely even tolerate sitting up to eat.

For the next 3 ½ years I barely functioned because of the pain. I went from doctor to doctor. None of them could figure out what was wrong with me. They prescribed narcotics, muscle relaxants and anti-inflammatory drugs. None of the medications helped and they turned me into a zombie. I was enrolled in one of the first HMOs and they refused to pay for anyone who wasn’t on their small staff, which didn’t include any chiropractors or osteopaths. I was pretty broke but I went anyway. Chiropractic and osteopathic manipulation helped only a little. I was still in too much pain to function. I went to an orthopedic surgeon who spent 45 minutes examining me and talking to me and seemed to be very compassionate. At the end of the appointment he gave me a diagnosis of chronic body pain and said there was nothing he could do for me. He told me I might be like that for the rest of my life and to learn to live with it.

By this time I was 28 years old and had lost everything. I had no income, my boyfriend had kicked me out because he wanted to date other people, my parents weren’t helping because they were angry at me for not marrying my boyfriend when I had the chance and my prospects for anything getting any better looked pretty dim. I was considering suicide.

Then a friend of mine who was a health reporter suggested I read a book, Anatomy of an Illness, by Norman Cousins. Cousins was a renowned intellectual, the editor-in-chief of a respected publication, the Saturday Review. Cousins was diagnosed with ankylosing spondylitis, a painful and progressively crippling joint disease. He was told he had only a one in five hundred chance of recovery. Cousins didn’t like those odds and applied his considerable intellect to finding a cure. He learned about the mind/body connection and started himself on a program of “laughter therapy”. He also ingested large doses of vitamin C, which he learned through his research is important for connective tissue.

At the time I was reading the book, I was watching the holocaust miniseries on TV and reading books about World War II and the holocaust. The topic interested me and distracted me from what was going on in my life. I had no idea at the time that focusing so much of my attention on such devastating world events would have any impact on my pain or mood. After my eyes were opened by reading the book, I changed what I was watching and reading.

Cousins also mentioned biofeedback, a treatment that uses sensitive electronic instruments to measure physiology and then feeds that information back to the patient so that the patient can learn to control his/her body.  The idea appealed to me and I found a psychologist in my area that provided the service. The psychologist told me at our first meeting that fear and worry caused changes in physiology that increase pain. He taught me a relaxation technique to counteract it, using hand temperature biofeedback to measure how I was doing. Our hands cool when we are stressed as part of the fight or flight response. He gave me a simple liquid crystal strip that measured my hand temperature to use for home practice.

My pain levels decreased about 50% in a day! My fear was from feeling out of control, and the biofeedback gave me a way to make a difference. With less fear, I felt better. I continued to monitor my hand temperature and work to keep my hands warm throughout the day. I also began to explore other mind/body approaches to healing my back. I was very weak from the years of inactivity and afraid to start moving again. I found a program at the local YMCA called “the Y’s Way to a Healthy Back” and enrolled. The supervision and coaching involved in the program were very helpful in getting me back on my feet. I also took up swimming to help my back. I was soon able to get back to work full time at an administrative job with the state and eventually finished my degree.

Unfortunately, after a few years back at work I started to have some foot problems. I developed a bone spur in my big toe joint on my left foot that felt like a stabbing pain with every step. After more conservative measures failed to contain the problem, I had surgery to remove the spur. After the surgery I experienced a different kind of pain when walking. I could only walk a few steps before I was in agony. Once again, no one could tell me what was wrong. I went to many doctors and physical therapists and none offered any relief. After I while I found that even sitting in a chair with my foot on the floor was too painful. My mind/body interventions were no help at all.

Fourteen years went by with me managing my foot pain as best I could. By this time, I had left my state job and set up my clinical social work practice. The social worker who was supervising me suggested that I try Rolfing, a type of bodywork that gets deeper into the soft tissue than massage. Also known as structural integration, Rolfing is based on returning the body to its natural state of balance. I realized that during the time that I was healing from the incision above my big toe joint I was walking on the side of my foot. This caused my muscles, ligaments and fascia to shorten so that I could no longer walk normally. After two sessions of Rolfing, I felt like I had a new foot!

Unfortunately, that wasn’t the end of my pain problems. Since my foot was feeling better, I decided to take a long walk one day. When I got home, I bent over the sink to wash my face. My hip muscles, fatigued from the  unaccustomed effort of walking, gave out and I sprained muscles in my hip. The injury was so painful that I could barely sleep for three weeks. The pain from that injury limited my activities for the next three years or so, but Rolfing, stretching and continuing to swim eventually resolved the pain.

A few years later, I experienced a repetitive strain injury that caused tendonitis in both my arms. My driveway and walkway were icy and I was using a small spray bottle to coat the surface with an ice-melting spray. After that, I had difficulty lifting anything with my arms. The pain and weakness persisted for about two years but did resolve with acupuncture.

I still wasn’t done with pain. About three years ago, as I was completing work on a book about alternative treatments for chronic pain, I developed another painful foot problem that was diagnosed as plantar fibromatosis. My left foot was inflamed with small benign growths on the bottom of the arch. With every step I experienced a very painful pulling sensation in my foot. I was told there was no effective conventional treatment for the condition. The growths could be removed, leaving potentially very painful scars on my foot but the growths would likely return. Once again, alternative medicine came to the rescue. While researching my book I learned about low level laser therapy (LLLT). LLLT uses red and near infrared light to reduce inflammation and pain and heal tissue. It also works for osteoarthritis, which was causing misery for my elderly cat. I  acquired unit to use at home and both of us got better.

Life had been going along pretty well for a few years. I was busy with my clinical practice, promoting my book and starting a website for people with chronic pain. Six months ago I walked into a home improvement store to pick up a hitch pin for my bike rack prior to a planned vacation and got tripped by a store employee. I fell and broke my ankle. I needed a surgical repair that included a plate and six screws. By this time I had been preaching the perils of opioids and the benefits of alternatives for some time. I was concerned about research that said that patients who used opioids for acute injury were more likely to develop chronic pain than patients who didn’t use opioids.

I believed, based on my prior experience and research, that I was better prepared than just about anyone to manage pain without opioids, so I decided to forgo them. I managed the pre- and post-surgical pain with CBD oil, another alternative treatment I had learned about in my research. I also took ibuprofen and Tylenol for the first two days post surgically and used homeopathic remedies arnica, ruta and hypericum. I used a pulsed electromagnetic frequency device (pEMF) to reduce pain and inflammation and speed healing. Once the dressing came off the ankle, I used the low level laser therapy, which has to be used directly on the skin, to reduce pain and inflammation and speed healing. I was also very concerned because I could not weight bear on my right leg for six weeks and I was afraid of reactivating old injuries by putting too much stress on previously injured parts of my body, including my left foot and hip, back and arms. I used the LLLT as a preventive measure and, miraculously, it worked and none of my old pain returned. After about six weeks, I started a course of physical therapy to restore strength and range of motion to my ankle. I’ve also been doing more Rolfing sessions. It’s now six months after I broke my ankle. I’m doing reasonably well. I’ve resumed all my usual activities except for long walks and cross-country skiing. I expect to get back to those activities sometime soon.

Now imagine an alternative reality without my use of alternative medicine. If, after injuring my back, I had never discovered mind/body healing and biofeedback but I somehow avoided killing myself. I found an opioid that would numb my pain. I had to re-dose several times every day and never got better. I went on to develop foot pain, hip pain, arm pain and weakness, more foot pain then broke my ankle. I would have not been able to work after my back injury so I would be on disability and too poor to afford any of the alternative treatments that have been helpful to me. Instead of enjoying my life and being a productive member of society engaged in rewarding work, I would be miserable and completely dependent on my family and friends.

And that, my friends, is why I am a passionate believer in, and advocate for, alternative pain treatments.

Cindy Perlin is a Licensed Clinical Social Worker, certified biofeedback practitioner, and chronic pain survivor. She is 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. She is in private practice in the Albany, NY area where she has been helping people achieve their health and wellness goals for over 25 years.

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Authored by: Cindy Perlin

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Louis Ogden

I am 68 years old and have had chronic pain since I was a child of five. Over these many years, I’ve tried LOTS of therapies but nothing worked until I went on opioids. For many people, this treatment of last resort is the ONLY thing that works. Now, I’m slowly losing my opioids. For the eight years on opioids – those were the best years of my life. Now, because I take too large a dose, I’m having them taken away and everyday my QOL goes down and my pain level goes up. I cannot believe that torture is my destiny after eight years of comfort.

Jody Hoffman

I am glad that you have found something works for you besides opiates that’s great for you, you have to understand something that you may not know, you are an alternative pain treatment practioner you make a living treating people who are in chronic pain and are being told that instead of continuing with opiates to treat their chronic pain they have to go to you & find a way to treat their pain. I was sent to a pain clinic and it was like what you do, after 8 years of being on pain meds I was told that if I meditate and try aroma therapy and massage and deep breathing among other things that I shouldn’t be in pain and my refractory shortness of breath will be gone. I have news for you it doesn’t work for me it’s not going to work because I have a honest to god physical illness that causes my lungs to literally fall apart and it hurts like hell. The government is stepping in & talking to people like you that are making a living treating people who are in chronic pain and suffering. Of course your going to tell them that it works, you are going to pull out files to prove that you have helped people but leave out the fact that they had pinched nerves or something as simple as that. You can’t help me with what I have but you are going to say you can and it didn’t work because of my attitude. I have been down that road and I am worried that I am going to have to be forced to deal with someone like you again

finlay cedar

Been diagnosed with multiple sclerosis in 2015, and I was a woman of 50. They put me on Rebif which I took until 2017 and was switched to Copaxone. I had two relapses on Rebif, none so far on Copaxone. I do notice my balance was getting worse, and my memory, as well as erectile dysfunction and spasms’ had no choice to sick for other solution and I was introduce to totalcureherbsfoundation.com  which I purchase the MS herbal formula from the foundation, the herbal supplement has effectively get rid of my multiple sclerosis and reversed all symptoms. 

I hope you bloggers are getting information from the U.S. Pain Foundation and Dr. Lynn Webster site.

Granny

Every one of us is different .. even if our diagnoses have the same name. Opioid is not a dirty word. Every one of us should have the right to use every mode of treatment that we can come up with to get relief. No silver bullets .. often the best outcomes result from several combined approaches. In communities like this, I find it best to share ideas without disparaging others’ results. I have been required to try all sorts of things .. everything the Docs and Insurance ppl could come up with… and endure all of the side effects and damages caused, as well as celebrating all small, incremental successes. Take it a moment at a time. All treatments that improve your situation are worthwhile. We are all different .. what works for one may not for another… share ideas, and keep what works for you!!

Linda Olds

I agree with the writer that it’s good to try treatments other than opiates. Some people have gradually come off of opiates and are able to function; that’s great too.
The problem is that there are many people who have tried all of these things, and found that nothing works to ease pain and allow them to function except opiates.
These people should be allowed opiates, under the care of a pain professional, without being looked at as addicts. However, some doctors are now saying that there’s no proof that opiates work for chronic pain, and in fact may cause more pain. This is wrong. Just because some people can do without opiates, that doesn’t mean that those who use them are addicts.

Joy Robinson

Reading the comments anger me toward this woman who wrote her **glowing article** ….
So many Chronic Pain Patients justifying their having to take the scandalous
Opioid
There is NO SHAME in taking Opioid Medication. They keep our pain in decent check, fairly sane and they keep us here.
Let’s be honest. As so many souls have taken their own life due to torturous pain because necessary medication was taken away.

Heather

I’m 39.

Heather

I also want to note that I’ve had injuries… I’ve done physical therapy, heat, ice…

Some have lasted months, like the plantar fasciitis.

The hope with injuries is that the body will heal itself if given time. Generally, doctors don’t say “Oh, you’re hurting so I’ll give you pills.” Not in my experience anyhow.

However, when I had widespread, chronic pain – especially pain that doesn’t have a well-documented treatment plan other than “live with it” as the doctors would say, then that’s when we tried things like an NSAID… we kept that on board but I was struggling to work. We tried Lyrica, Gabapentin, Topamax (for migraines), Prozac, Trazodone (for sleep and pain) and other sedating low-level antidepressants, muscle relaxants.

Meanwhile, I am going through physical therapy and warm water therapy and doing massage, yoga, self-massage, stretching…

I have arthritis in my feet, ankle, knees, hips, SI Joints, lumbar spine & cervical spine, shoulder, hands. I am diagnosed with fibromyalgia, which I have added more and more self-care therapies as I learn them… But can I continue to work and use just those therapies to manage pain?

Sadly, no.

If you think folks just “jumped onto an opioid” then you’ve bought into the media hype. And if you can manage without drugs, then good. I tried to take Tylenol instead of the opioid. I got an analgesic headache and was advised by the doctor that I needed to discontinue the Tylenol, and use the opioid IF I NEEDED IT. So, that’s what I do. I skip doses… A weekend off in the comfort of my home with access to self-care items is a lot different from my 9-5, though.

If I don’t work, I don’t get insurance and I can’t afford rent so I’d have to move back with my parents. I would not at all be surprised if I’d be on insulin too, by now, if the opioid didn’t allow me to stay modestly active. My mother, aunt, uncle, grandmother… all have or had diabetes.

Heather

I work 40 hours a week with the help of an NSAID and a mild opioid. I take a muscle relaxant at night. You may feel it’s sad that I have to rely on medication but I rejoice in my ability to work, to engage in modest amounts of exercise and to sleep (which is critical to my well-being).

I do ALSO use heating pads, epsom salts, over-the-counter creams, meditation, t’ai chi, stress management, trigger point injections, massage, TENS unit, foot orthotics, a compounded cream. I did try acupuncture but felt ill after the first session (the doctor practiced both Eastern and Western medicine and said I may be sensitive to it and she may have used too many needles at first).

Where I WILL take issue is when someone makes derogatory remarks about the treatment I’ve chosen. I won’t wish anyone suffering because of it, but I may become frustrated because frankly, we’re all fighting a battle and we CAN agree to disagree without taking a swipe at someone else’s choice. Some people are PROUD that they don’t use pills. Remember: THAT is YOUR choice and you do NOT make choices for someone else.

As much as we get angry when our friends and family don’t understand, and we wish that they could walk in our shoes so that they could understand… It’s terrible when chronic pain patients judge each other.

You don’t live in my body. I don’t live in yours.

I’m always happy for more information about things I can try. I feel like every tool I can add to my toolbox is a win.

But, if the person presenting the information causes harm to those who DO have improvements with opioids, then I’m far, far less receptive. Right now, chronic pain patients have a lot of worries because of what’s happening and no, I don’t need negativity. That’s where I WILL stand my ground. We have enough people making it harder for us to get treatment and you do need to realize that your publication can fuel the fire against people who are struggling.

Laurie

I do wonder. sometimes, if this benighted government allowed mercy euthanasia, like we do for our pets….how many would just opt for THAT instead of suffering for years and years and now, jumping thru hoops for official amusement?

” used homeopathic remedies ”

This is where I have a problem. I don’t believe the author knows what this means and makes other claims subject as such. True homeopathic “remedies” have NO active ingredients and is fundamentally based in complete nonsense and is no better than placebo. The science, the REAL science has been in for a long time. On acupuncture/acupressure (doesn’t matter where you put the needles/pressure the results are the same so “meridians” are quackery”) as well and the fundamental basis of chiropractic is nonsense and is often dangerous.

I suspect if the author is getting negative feedback from the CPP/IPP community it’s for good reason. And for MANY, CBD oil and marijuana simply cannot be tolerated. Both set off pancreatic flares for me so I’ll stick with the safe and effective medications I know of. I also suspect if the author is getting relief from products that have been proven scientifically over and over again to be no better than placebo that she’s employing a VERY active imagination.

1oldbroad

The only words that come to mind as you run on is Self Righteous! Do people not think those who suffer chronic pain have tried almost everything out there to the extent we could before we go onto opioids? That there actually are so many patients who take them responsibly and haven’t had to continue raising their dosage? Woohoo, you did it your way. But my gosh, we are doing all we can do so we can actually have a life worthy of living, and that to many is using opioid medications. Massage, just the thought of of it makes me cringe with more pain. I have suffered since I was 24 yrs old. I’m 57 now, please understand we are doing what we need to do to live our lives. Do not ever think you know my pain or what works best for me, please! I am glad you are doing better. Best of luck that you continue on the path you’re on…but please don’t block my path.

Maureen M.

Cindy, I am thankful for your story, finally. I’m sorry you have also gone through so much. You have had to have a lot of patience.
I am happy and I am jealous that you have found ways to heal.
But, I have to admit that I stopped reading your posts about a year ago since they always greatly aggravated me and brought on stress.
I agree with 99% of the previous posts. I won’t go into my long history but I suffer from Intractable Chronic Spine related pain, 4 failed surgeries, screws rods etc plus Systemic Lupus. I hate medications and most hate me.
I have tired every alternative treatment under the sun, including laser, CBD etc.
Yet, I need to remain on opioids to live. It’s the best tool for my survival.
I’ve tried to be without them more than once. There is no ‘healing’ in store for me. Nor for many many others. The damage is permanent. Believe me…I’ve tried to heal! Most of us have!
And it took me years to accept that fact. Not everyone can heal!! All we can do is maintain for the rest of our lives.
And this is what I would hope you would come to realize and empathize with. Only God could heal us.
I pay out of pocket to see an Energy therapist as well as a ‘hands on’ massage/body work therapist, each 2x/mth. for the past 2 yrs. I also do mindfulness and guided mediation, breathing techniques and on and on.
My measly monthly retirement funds go right to the the therapist instead of my savings.
I don’t know if either greatly help me but the hope in my heart to get better won’t go away, so I keep trying. I can’t give up, yet.
We all try in our own ways to keep our heads above water, to live/survive the best we can.
Please try to understand us and stop trying to push the impossible on those who can’t get any better than we already are. If we could, we sure would!
Thank you and keep well.

Ellen Lenox Smith

We are all on a journey of pain and have to learn how to cope with our situation the best way we can. This is not a competition that some seem to need to express – that one could not understand the pain they have that is so much worse. We all have to learn to cope in the best way we can. I do as you do and try to pass forward anything that just might help the next person. And like you, I get torn apart at times by others not believing I have a clue the horror they are going through and how dare I suggest cannabis, that happens to be all I can metabolize. There is so much anger out there right now but it will not stop me, like you, to share what has helped and I hope just might make a dent in someone else’s journey of pain. Those so angry might want to share their suggestions of what has helped them and use their experiences to help others instead of chewing up and spitting out those that are trying to help. No one says you have to do any suggestion – but maybe, just maybe you will someday read an idea you hadn’t thought of that can help. Open your heart, your mind and compassion and kindness towards others.

Biofeedback costs $125 per session where I live….there is nothing as affordable , or as effective, as opioids for pain relief. Wake me up when something comes along….I’ll be long dead, since I’m 72 now….

Cindy I invite you to read the story in which was posted after yours. Today’s story about Fred and Vi. Just what would you recommend to her?! How would you have handled having screws and such in your neck!? I don’t want to hear about laughter therapy nor about the way someone eats. My best friend died of an infection in 2011. She battled cancer for years, her hands were so sore from transfusions she opted for a stent in her chest instead. Things went horribly wrong. The next year would be her worst and her last. God knows she tried EVERYTHING on the face of this earth with the exception of opioids! When she learned of her cancer and the hideous pain that accompanied it she changed her way of eating, she became a macrobiotic counselor, she taught yoga, she became a massage therapist and tried acupuncture as well. Her medicine cabinet looked like a portion of the health food store down the way. The last year she was on this earth she broke down and began taking opioids. She was amazed! So what if she had to take another one when the other one wore off. That’s why it says what it does on the prescription bottle. No Cindy, opioids don’t cure a damn thing but they most certainly make life tolerable to those who’ve tried everything as well as “everything that everyone else” thinks will heal someone else. She knew I had “suffered” for years with NO help at all. She was among several that had prayed for me to receive the doctor that I have to this day. The one that made my life bearable and livable. The very doctor you told me, “I treat my patients the way I hope my doctor will treat me one day. The man that was in here before you needed pain medication about like I do, but you are a different story!” One of the last things she said to me before she passed was, ” I’ll never know just how you stood the pain as long as you did. I’m so thankful that God answered our prayers and sent you such a kind doctor!” You see Cindy, it’s just NOT a one-size-fit’s all world!

Karen Gayton

Cindy there are many sub-types of Ehler’s Danlos Syndrome. The things you have described about your injuries lead me to suggest to you that you may want to see a physician about an evaluation for possible diagnosis of Ehlers Danlos for your self.

Thank you for a very interesting and informative article, and glad you are doing well now. I have had chronic , abdominal pain from cancer surgery and have been through the traditional route as well as natural creams and cbd oil, to no avail. I also have low back pain, from spinal stenosis, which is secondary to abdominal pain now. Bio feedback, Rolfing, and low level Lazard therapy are interesting alternatives you mentioned, and will be looking into them further for my problems. Your positive attitude is also inspiring, despite the problems you encountered, and it sounds like you also know how hopeless things are due to the pain, and how society and people close to us, perceive us. Thank you again, howard

Rosanna Zaffiro

Cindy, you remind me of the old me. When I went off of opiods for pain, I thought everyone should and could. But my arrogance came back to haunt me. Little did i know, I know I was to have 2 more spinal fusions. In the end, I now have 5 lumbar fusions and 3 cervical fusions. Prior to these last 2 surgeries, I tried all the alternatives you’ve mentioned, except laser therapy, and even some I’m embarrassed to mention. Today I have all the bells and whistles, which includes, titanium cages, an 8 inch rod, screws and a hinge. With two young adopted children at this time, I had to hire a caregiver for me, and for the children when they arrived home from school. She worked here for 5 years, 40 hours a week, which ate up all of our savings. Eventually, I had an implant which helped some of the nerve pain in my legs. But does not help my back pain. I am very limited in what I can do today. Any amount of bending, standing, reaching and stretching causes problems. Sitting too long also causes problems.
I went from 160 mgs. of pain meds, 2 of these being 60 mgs. Twice a day of long-acting, to now 3 -15 mgs. pills a day. All of my own accord. I also found out I was diabetic a year ago. If I don’t take my pain meds, I am unable to get out of bed and move. Being diabetic, I have to move.
I have been humbled. I will never judge who and why a person needs pain meds. I can never know how much a person suffers. No one can tell from looking at me, what Im actually going through. I think my fellow pain sufferers would agree we’re very good at hiding our suffering, I don’t want anyone feeling sorry for me.

This narrative of one size fits all treatment must end.
I am very happy you were able to find solutions to your pain. But we’re not all the same.

Liz

It would be ideal for alternative treatment to be available as a first line of treatment I agree. As it stands right now, massage therapy of any kind is not covered by my HMO. Chiro, acup and PT is limited. For this I pay a hefty monthly premium and in addition shell out a 50.00 copay each time I walk through the door. Meanwhile a tried and true opioid is 4.00 a month. After dishing out thousands of dollars each year for alternative treatments, it is really the medication that allows me to work. I’m thinking when that is taken away so will my ability to work. Ms. Perlin I already use alternative treatment. The medication was added later, and Is ONE tool in my toolbox for managing chronic pain. I want that tool to be available to me as well as alternative treatments. Please keep advocating for them. We also need the tool of opioid therapy in the toolbox. Please stop advocating against them. Choices. We need as many as possible.

Just me

I also suggest you have a look at the McGill pain scale.
All the things you’ve experienced don’t even come close to what some of us deal with, every second of every day.

Joy Robinson

No, my dear Cindy, you’re right. You may not have the power to take away opioids. I agree with you 💯, but, from your mini-bio you came across as another voice, anti-opioid. And in the atmosphere in which chronic pain patients live today. That’s one less voice advocating for our right to use the medication that works best for us. I’m not going to deeply delve into my health bio, but I’ll say this. Long before my surgery I didn’t realize what was wrong with me. Chiropractors, TENS therapy, pool exercises. I resisted any form of medication as I wanted to treat this as alternatively as possible. When I couldn’t stand up straight and my leg was dragging. I drug myself to wall, convincing myself it was all in my head, trying to force myself upright. Because of reading about doctors and people similar to yourself. Reflecting back to that one act, trying to force myself upright brings tears to my eyes as I believed it was all in my head. But it wasn’t. And the pain was so much worse than the two natural childbirths I endured. Even after my surgery I resisted opioids. They are necessary now. And you seem to gloat how you managed without them. Also, many, many people are only able to work because of opioid medication. Do you realize the number of people who lost everything because their necessary medication was taken away?!?! And those who are not able to work and on disability are because of their disability. Not because of taking opioid medication. Chronic Pain Patients do not “get high”. Please, educate yourself. I’m done with you.

Just me

Not one of the ailments you’ve described having is an Intractable one.
Back pain is the closest but opioids are not always the best treatment for that, it depends greatly on what kind of back pain & what the underlying causes are.
Get back to us if you ever get CRPS/RSD or any other number of INTRACTABLE conditions.
I can understand why some people get snappy at you. You are only going by the things you have personal experience with and not trying to understand what exactly others may be dealing with. Look up some symptoms that others live with every single second of every single day, that will never, ever, get better no matter what they try or do. Yours got better because they are not considered an Intactable condition. Please learn the difference.

Christi

That book is a GREAT book to read.
This also a great story.

Tess

I think that is great that alternative treatments worked for u and I believe they should be available to everyone.Many patients get upset because they have already tried these treatments and it took very long time to find somthing that works for them.Many patients have real lives that live paycheck to paycheck and government and others feel these patients should try something they have either already tried when after years of trying they were stable and back to somewhat of their lives.Some patients can set aside months to years to try to fix themselves and others will be homeless.
Some patients have rare INCURABLE diseases that will never get better and yet someone other than their doctors get to dictate there palliative care.The big problem here is pain patients and the few doctors left willing to treat them have lost all power on what patients put in and on their bodies.You say as if u had the power to take their pain medication away, you do! And this is really happening.Pain patients doctors are forcing them to taper or cutting them altogether without patients consent, and without medical reasons.Doctors are actually telling patients for good reason that they are in fear and have no choice! This is against our constitution but is happening in record numbers.Patients that were stable without any problems are being left to suffer without anyone doing anything about it.This is why u are getting that response from patients.Cause we have lost all power In our treatment.

What is the suicide count up to now? I suffer from chronic pain “metal, screws and wires” due to an on the job accident, and multiple motorcycle and car accidents. I’ll be 50 next month and have been on oxycodone with a break thru pain medication for over 10 years. The Media scared me so bad I ask my doctor take me off the oxy n March of last year. I have not had a life sense (social) I asked my doctor to take me off all pain medications. I never imagined life like I live now!
I was scared that my doctor was going to over dose me like the news was telling everyone! I don’t have a life at all. I don’t want to die, but I can’t keep going like this!

It sounds as if you have a reasonable solution to manage your pain. Now imagine somone who had been assured by doctors your CMT 2 pain was managable and you would live a normal lifetime.circa 2002. For 5 years your main pain fighters and medications have been stripped away. First a hdrocodone reformulation. I had taken for 12 years just fine. After 1/1/2014 325 mg acetimetifen was removed an now it is useless beyond 2 weeks. Then ambien and ativan ripped away. Next put on opana only to have it taken off market. Finaly left now with hydromorphone/ultam/lyrica all the while the CMT progessing. Now since opiates are bad the govrenment takes over pain care and is going to reduce your hydromorphone until torture finally snuffs you out. We mean it !!!I No marajwana, liqour or any other drugs allowed. Stimulator was usless we can offer you an epidral now that you asked
but even if it works to some degree we will continue reducing hydromorophone to 90mme. I read your anatömy 15 years ago and have tried everything Kratom to quell machine. Now that is someone elses story. If you have any other helps it needs to be soon because I am not sure how much farther I can walk in the government death camp called America. That is the life and pain of a person unlucky enough too have a genetic defect in this modern Obamacare, insane, must depopulate world. Wish you ill? Not at all! Thank you for writing. What else do you have?

Louis Ogden

If I have ever bashed you, I apologize; however, I am 68 and have had pain since I was a child. I’ve tried some alternative stuff in the past but NOTHING ever helped like opioids. Each person should get individualized treatment and it never should have taken 50 years to finally get a good quality of life. The “so-called mind-body healing” or cognitive behavioral therapy (2 iterations) speaks to me as it’s all in my head. Some people may benefit if they are new to pain and haven’t learned coping skills but for a life-long painer, we have already learned coping skills. Too much Tylenol will damage organs. Please be carefull. Opioids are safe and effective for some people.

Cindy some of the reason you’re receiving backlash, you’re dealing w/ billions of people who were living productive lives only to wake up one day& find what worked for them was no longer available, on top of it our government was to blame! It left many sick, weak & scared. After that they were sent here, there & everywhere. I know, I was one of them. I tried everything offered with no avail! A few things hurt me worse than if I had not. Then again I’m no spring chicken. If this would have started when I was in my twenties as it did you I may have had the strength & insight to look into something other than opioids. We all have our cross to bear, our story to tell. As quoted below some folks just don’t have the same driven personality as others. God made every single one of us different. Thank goodness! I’m deeply sorry for your bouts with pain, glad to hear you don’t have to suffer with the rest of us due to lack of medication. Speaking of such I don’t know what you took that turned you into a zombie but that’s not the case with myself and the billions of others who are or were under a doctor’s care& are or were prescribed opiate medication! You mentioned laughter therapy. I’m afraid that won’t work on us because we have nothing to laugh at after the way we’ve been treated or shall I say not treated. The “way” you tell your story, well it’s like you’re agreeing with the media & government. I’ve heard many stories on here where people have tried alternatives but at the same time they didn’t down what we have come to know as our life saving medication. They didn’t predict the future as you did stating we would be poor, on disability and miserable. When you talk to a group of people that you don’t know what have been through in their past &deliver a statement as you did in your last paragraph, well you need to find a way to reword your story & add kindness for those that aren’t as fortunate as you claim to be.

Kristen

Glen and Dawn,Thank you ! Very well said.I also have tryed all other alternative options and they did not help.I will try to make this short.My Dr cut my meds just
Last week.I went to see a Neuro Brain and Spine Surgeon to review my newest MRI and the options.What Cindy has talked about are not an option for me to try again.He said point blank I’m beyond alternative treatments and felt PT would do more harm than good.I am going back next week so we can discuss surgery options because my conditions have progressed to the point I can barely get out of my bed and also due to recent Hospitalization I am under Visiting Nurse Care for the past month.They installed a home Health Monitor and I send my vitals every day 2 x a day and Thankful for the Nurses who noticed my Blood pressure has been very High since my Pain meds were cut.Now my med has gone back up to where I was because they were concerned I could have a stroke.Not sure how long they will let me stay on my regular dose but I am greatful they caught this BP issue before something tragic happened.I think we are all aware of these alternative options and most all of us have gave them a try most required before Dr gave Opioids.So sorry but glad they work for Cindy but unfortunately not for many others.I wish people would just let us be and let us take the meds that at least give of some quality of life and stop trying to push your treatments onto others just because it helped you.I don’t mean to sound rude and sorry if I do but im tired of people in pain being told what will work for them because it worked for you..My Heart goes out to all those living in Pain.No one wants to live daily in Pain and no one wants to be on med daily but in most cases its the only thing that works and gives us some quality of life.Wishing you all the best!

Susan

I was recently introduced to Dr. Cousin’s work with “laughter yoga” at a women’s group I belong to. I was extremely skeptical, but it DOES work! Would I want to only rely on that for chronic pain? No, but in conjunction with? Yes! And best of all, IT’S FREE. I’m sure there are tutorials available online.

Really, even if you think it sounds stupid (I did), give it a whirl…it can’t hurt more than you already hurt, right? And it doesn’t interfere with any of your meds, I promise!

Love and prayers of lessened pain and fatigue to all. ♥️

Mavis Johnson

There are too many of these people cheerleading alternative treaments. We are all being duped by these testimonials. The FTC needs to cracks down on these content marketers, and patient testimonials. To many peope with chronic pain actually saw their condiction worsen, when they persued these alternatives. No alternative practioner would ever tell a pateitns that they need medical care, there is money involved. Due to the decepetive advertising of this alternative medicine, and the failure to look at the negative outcomes, most of us have no idea if it is beneficial or merely wasting our time, money and health. Unfortunatly these pain groups would rather waste our time with this nonsense, than to come up with a way to evaluate any of this.

This kind of stuff, does more harm than good!

ElizabethR

I’m glad you found what works for you, and it doesn’t occur to me to be angry with you because you did. However, alternative medicine won’t be the solution for everyone even if it is available in their area, readily accessible and covered by their insurance. Many of those living with chronic pain are older adults on fixed incomes. I live in a very expensive area with horrific traffic congestion; accessing/paying for alternative treatment is not a simple matter.

You have for sure earned your Ph.P. (Doctorate in Pain). However, it appears that many of your injuries happened when you were younger and had stronger recuperative powers. I’m old (82) and do not have the energy or financial means to pursue many of the treatments you recommend; I have tried chiropractic, acupuncture, massage and a wide variety of non-opioid meds. In my 20s I had 3 back surgeries. During that time I also tried biofeedback, which did absolutely nothing for the pain I was in.

I hope your strategies continue to work for you.

Rakel

Recently informed by my Pain Consultant who is head of pain for five London Hospitals that there is zero evidence anywhere that marijuana medical or otherwise actually affects any pain pathways in the body. He says as it makes you feel better you don’t feel,the pain. CBD works for some types of pain this way and not others, for neuropathic pain only THC works with the side of effect of making you stoned so,you can’t do anything. No such thing as a free lunch. The other thing I’ve learned is the CNS cannot tell the difference between mind and body and we get chronic pain through an error of evolution: the body-mind wrongly thinks it needs to be in high alert state, It thinks the pain is helping us as a warning

Rakel

There is a middle way and that is the way preached as gold standard here in the UK. Yes if he have severe pain and tolerate opioid we get them. Personal,y I would be in screaming agony without mine and if I have a bad flare they have to dose by an extra 100+MMEs over 24 hours to control it. However in the inoatime rehabilitation programmes (free on the NHS) we are introduced to how to move, carryband lift safely, correct posture for sitting at a co outer and everything else , appropriate physio and hydrotherapy, meditation, mindfulness and other techniques and yes meditation does change the brain and reduce pain. All these are tools we can find what suits us and becoming responsible for managing our pain, albeit with the input of medication from our pain doctors as well and possible interventions like lidocaine infusions, epidurals and pulsed radio frequency nerve ablation,mew can improve our quality of life. Yes anise all we are taught how to avoid and manage stress as it raises pain. I don’t hear about these techniques being used in the US. I have to say I tried Rolfing once and it made me ill for years, we are all different and I am pleased for you Cindy you have found your own way. I’ve recently discovered using an earthing sheet to sleep on plus Cehamia cream (sold by Phat5.5 on Amazon as Eczema cream) gives me a 60% reduction in leg pain at night,

A. MacKenzie

Everyone is different and chronic pain is caused, obviously, by a variety of different injuries and conditions. What works for one person does not work for all. The very treatments that worked for you may exacerbate another’s condition. So – if you can afford it and live somewhere where they are available – I have no problem with trying alternative treatments to see if they work. But there is no reason at all that people who are helped by opioid pain medications should be denied them, simply because alternative treatments may work well for some people with certain conditions! Unfortunately, that is what I have experienced and seen in the media – i.e., that no one should be allowed opioids because (supposedly) there are alternative non-pharmaceutical treatments that work just as well. NOT TRUE FOR EVERYONE.

Heidi, Seattle WA

I am so happy Cindy that you didn’t have to resort to opioids for your pain relief. I am also sorry that you have been ‘attacked’ for your advocacy of alternative pain treatments that have worked so well FOR YOU; that is as unfair as attacking and belittling someone for using opioids as their effective pain treatment. I just hope we can all get to a point of agreement that everyone’s body needs or accepts different treatments for their pain, and that ALL treatment options, including opioids, can be beneficial!

It is true, as many of you can attest, that opioids reduce pain temporarily (until the dose wears off and another dose is required). In many cases that means more function and a better quality of life. However, I don’t know of a single claim, even by the drug companies, that opioids heal any condition. Therefore, I am a firm believer in continuing to search for solutions, many of which can be found in alternative medicine. I am an advocate for increasing insurance coverage for all treatments that might help, which is why I started a petition on change.org to that effect. If more pain patients would sign it, it would help. You can find it here: https://www.change.org/p/president-trump-and-congress-make-sure-that-the-100-milion-americans-in-chronic-pain-can-get-safe-effective-care

Judy, one person I know had success healing CRPS with diet. See her story here: https://paintreatmentdirectory.com/susanne-stratton-healed-complex-regional-pain-syndrome-with-nutrition/. Also, there’s some research that low level laser therapy (LLLT) can be helpful You can read my article about it here: https://paintreatmentdirectory.com/can-light-heal-pain/. Temperature biofeedback and neurofeedback can also be helpful.

Janelle Robinson

It’s really great you had the money to buy all that alternative medicine…But, please understand that good insurance and money buy Good Medical Care…

Jeff

I think it’s really great that you have found non-opiate methods to deal with your chronic pain.
Everyone has different pain thresholds and what works for some does not work for others.
unfortunately many alternative treatments are expensive and not covered by insurance.

Gary Raymond

It is obvious that you have not experienced severe chronic pain, Cindy. I think you just want attention. There are no effective alternative pain treatments. Particularly for diabetics. Humans have been searching for a solution for millennia. Scientists have not yet been able to manufacture non-addictive inorganic chemicals compatible with the brain chemistry. Ablating nerves is permanent and risky. God put sacred plants on each continent for a reason. There are facts of life that we cannot alter. Addiction is simply a chemical reaction. Addiction is not a crime. America must expand compassionate rehabilitation services for use when pain stops and addiction has occurred. Rehab may alleviate addiction but it will never stop chronic pain. You have not reinforced my negative attitude towards social workers. Your field destroys families and now torment those in pain.

Annell

Boy I wish it was that easy, reading. I hve several things if anyone reads this I think it was on Amazon called “unrest” for chronic fatigue. Been getting worse since 97 I lived in townhouse and would hve to crawl up the steps. Pain now in most places. Long story short can’t cook most days whatever I eat I hve to take to bed and lay on stomach. Just took me 4 days to be able to go to store I wanted to make sure kitty had food and had rx there that I had been out . It’s bad being female and get to bathroom and think I can wait, too much pain to take pants off and sit, but I also can not sleep in anything too much pain to move. Before they took pain pills away at least I could cook clean and shower. But glad it worked out for u. I pushed my self for years to work I retired 2003

Eddie Fen

Well Cindy, you’ve got it figured out. Since you can not handle opioids, then I guess no one could. Never mind that I’ve been using them for 14 years RESPONSIVELY. Yes I understand they are highly addictive. But I also understand they work incredibly well for me. No I don’t abuse them. No I don’t keep asking for higher doses because it doesn’t work anymore (that is addictive behavior). I use them for my CHRONIC PAIN. Not to get high. Yes I understand if I stop I would go through withdrawals. That’s the nature of this medicine. Which is why I don’t run out, unless there is an issue with the pharmacy. The Pharmacy….that is a another story. When I first got hurt I avoided opioids for fear of addiction. I tried all kinds of homeopathic remedies. And I mean all kinds. And ended up still in massive pain 2 years later. I finally listened to my Dr and tried opioids. I then went to the store for the first time in years without having to leave early because of pain. Good for you that your way works. So does mine. I am not a criminal. Or a hopped up druggie. I am Man who is trying his best not to live in pain.

Margret Hunter

That’s great that you know what works for you! I was exhausted reading how you found your solutions…sometimes other people don’t have the same driven personality despite the chronic pain. Plus, every chronic pain situation is different from every other. I would never presume to tell anyone how to manage their pain, I’m no pain management specialist, but I would encourage them to find a good doctor who works with many modalities.

Continued, reply to Cindy Perlin. The Dr.’s that have the education and medical history of their patients as well ss in many cases knowing the risk or lack there of , of a potential for a paticular patient to abuse medication. We are not talking about the crises that make headlines of people in the entertainment industry where excesses abound. There are enough safe guards in place to for our Dr’s to oversee that a patient is not obtaing multiple prescriptions from multiple sources so scaring Dr’s into not wanting to treat their patients where a problem never arose is extremely frustrating. I believe the forum you are addressing is thought of as many’s last hope of stopping the stigma we deal with on a daily basis to no fault of our own and be deprived of treatment that helps many maintain our lives without having to jump through so many hoops and have treatments that actually harm the underlying condition (such as steroids) being injected into our bodied that already have a degenerative disease…that is like putting a bandaid on that causes an infection, as steroids further deteriorate the bone and other tissue. Basically, We simply do not need anyone to make our only means of turning this travesty around being hindered by the few, especially when you stand to benefit financially from keeping the current stigma in place. Best regards. I hope this helps you to understand why you may have not have been recieved well in this community.

Continued response to Cindy Perlin.

Replying to Cindy Perlin, I am sorry if people have attacked you about alternative pain therapies that have helped you each time some new injury caused you such pain. Somethings you should consider is (especially as a person you was financially limited for awhile) many of us that live in pain can not afford to go to therapies that are not covered by our insurance and some personalities are not easily penetrated by the almost, if I believe it doesn’t hurt, it won’t. Much like hypnosis, some can not be put under another’s sugguestion due to strong personality traits. Many of us have been through many alternative treatments that have either not helped or actually aggravated our condition even worse. As for my self I have never felt like I was in a zombie state from the amount of medication I have been given to help me cope with the daily pain I live with everyday. I have no idea of the doses of pain killers you were given but as for my self, I take just enough to keep me from tears so that I am not left to wither in pain to the point of not being able to get up and about with aid of course from my PA, except on extreme days, possibly due to weather or flare ups or other situations outside of my control, such as long rides in cars with several brace in place due the many problem areas. I do not think that any one angry that you have found several different alternate means to addressing issues you have encountered through your life. However, my guess is that every situation is different and the cause of as well as the severity , in the atmosphere we find ourselves in today, where patients that are not abusers of medication that absolutely help us bare each days challenges, we are already fighty an uphill battle due to misinformation that begain this whole “state od emergency crisis” in the first place. If you do your research you will find that the information that was presented that brought about this travesty of politicians making decisions for Dr’s .

Sarah

Thank you for sharing your journey!