Seeking to curb their misuse, the FDA has come down hard on opioid painkillers, restricting their use, and making it more difficult for some people in chronic pain to gain access to them. Some fibromyalgia patients and their doctors have, not surprisingly, rebelled at the thought of a major source of pain relief disappearing.
Beth Darnall, PhD, believes there’s a better way. A pain psychologist from Stanford University, Darnell, who’s spent the past 15 years treating people with chronic pain, believes most chronic pain patients have missed better ways of dealing with pain. She’s written two books focused on reducing painkiller use, and has published over 50 articles in medical journals.
Darnall also personally knows of what she writes. Her wrenching, unexplained stomach pain had occurred for as long as she could remember. Despite being a competitive athlete and socially engaged, Beth periodically had to retreat to a quiet room to recover from the stabbing stomach pains that came and went without rhyme or reason.
Beth Darnall PhD believes most pain patients are missing out on non-drug ways to reduce their pain.
Her boyfriend’s death while she was away at college brought her stomach pain to a new level, and for the first time, she sought help – at an emergency room where she was given Vicodin. The drug reduced her pain and brought her a “soothing numbness” she found helpful. Aided by her doctor, she began taking more of the drug but after about 8 months dropped it, citing how spacey and passive she was becoming. (She now believes the excruciating stomach pains were the result of irritable bowel syndrome and stress.)
That was over 20 years ago, but Darnall’s long bout with mysterious pain made a mark. Her practice now involves helping people in chronic pain to reduce their pain while getting off or reducing their medications. Her book “Less Pain, Fewer Pills: Avoid the Dangers of Prescription Opioids and Gain Control Over Chronic Pain” is devoted to just that.
The Problem
First Darnall describes “The Problem” – poor pain education and treatments that have led to an over-emphasis on opioid pain drugs, increased pain overall, and a societal problem with opioid drug abuse. Darnall isn’t a blanket opioid detractor – she says opioid drugs can be one part of a patient’s pain care program- but her emphasis in the first part of this book consists of highlighting the dangers and costs of over-prescribing opioids.
Opioid painkillers like Vicodin, Norco, etc. certainly have an important role in treating short-term pain but there’s no denying that they’re over-prescribed in the U.S. Darnall notes that the U.S. consumes 80 percent of the entire world’s supply of opioids. In 2010 enough opioid prescriptions were sold to supply every adult in the U.S. with hydrocodone for a month. Opioid prescriptions and deaths from overdoses increased so much that the FDA has created much stricter guidelines regarding prescription use.
How did this happen? Darnall gives physicians something of a break in their role in creating the “opioid epidemic” currently sweeping the U.S. How can they effectively treat something, she asks, they’ve never been trained in?
As late as 2011, she reports, fewer than 4% of medical schools in the U.S. required that medical students take a pain course. Only 20% of medical schools even offered a pain course as an elective (!), and Darnall’s emphasis – the psychology of pain – which she calls “a critical aspect of chronic pain” – is hardly taught at all.
Most doctors have little or no training in treating pain
When doctors do learn about treating pain they often learn about how to prescribe, police and monitor the use of opioid drugs in order to catch addicts or protect themselves legally. Few have any idea of how to manage or treat pain without the use of opioid drugs. Many prescribe opioid drugs for types of pain they’re not suited for. It’s clear that medical schools have failed both doctors and patients with regard to pain care.
Plus, deceptive advertising by pharmaceutical companies lead many doctors to believe opioids were effective treatments for both short-term and chronic pain. Opioids are quite effective in treating short-term pain but are rarely very effective in treating chronic pain. (They can be quite effective in chronic pain but only for a minority of patients.)
The early short-term studies failed to uncover the problematic effects of long-term use. Excluding people with anxiety or depression – common outcomes of being in chronic pain – from opioid drug studies further negated their usefulness. Remarkably, given the number of Americans using opioids for long periods, it was only in 2013 that the FDA started requiring longer-term studies on some opioid drugs (extended-release).
Opioid drugs work best during the so-called “honeymoon” period in the first 6-8 weeks they’re used. After that tolerance – which requires higher doses to be used to get the same result – begins to loom. Besides tolerance a variety of side effects that have largely been discounted by the drug companies can result. Darnall asserts that few patients are made aware of the possible ramifications of longer term opioid use, or that the best opioids generally do is reduce pain by 25%.
In a long chapter Darnall lists the general risks opioid drug use carries including addiction, inappropriate treatment of anxiety, alterations in brain functioning, arrthymias (long QT syndrome), constipation, dependence, depression, difficulties finding a doctor to prescribe drugs, driving risks, emotional numbing, hyperalgesia (increased pain!), worsened migraines, increased muscoskeletal pain, irritable bowel syndrome, sleep issues (including sleep apnea), tolerance and overdose,
Darnall actually states that tolerance – needing more drugs to get the same amount of pain relief – is inevitable if opioids are used long term. (“Tolerance is a natural, inevitable physiological consequence that every patient experiences). She also states that “for the average person taking opioids long term, the opioids become less effective over time.”
If you’re a man, long term opioid use may lead to low testosterone (causing irritability, low libido, erectile dysfunction, lethargy), problems with neurotransmitters, increased inflammation and more.
If you’re a woman, long term opioid use may lead to infertility/loss of the menstrual cycle (while on the drug), reduced hormone levels (low testosterone, estradiol, DHEA, lutenizing and follicular stimulating hormones), sleep problems, depression, reduced libido, inflammation and increased pain and a modest increased risk of some birth defects.
A Pharmaceutical Soup
A particularly difficult situation – which Darnall says she sees frequently – occurs when opioid drugs cause problems like anxiety and poor sleep which then lead to more drug use, leaving pain patients awash in what Darnall calls a “pharmaceutical soup”.
Take Tim’s case. After Tim laid his motorcycle down while going 60 mph he required three back surgeries. Given his injuries and his long recovery period he needed significant pain relief and he got it. Eighteen months later, though, still on high doses of opioids, he was irritable, depressed, suicidal and in pain. Testing revealed low testosterone levels. A slow taper of the opioids, increasing his testosterone levels and the use of Darnall’s “personal empowerment plan” (described in the second half of the book) left him able to finally sleep, alleviated his depression, and increased his functionality. He still has pain but is now completely off opioids.
Opioids and Fibromyalgia
Tramadol, a less addictive and potent opioid than drugs like morphine, fentanyl and Vicodin, is probably the most commonly opioid drug used in fibromyalgia. A study (see below) bears out the fact that Tramadol, which is similar to codeine, has fewer side-effects than other opioids. Drugs.com reports, though, that while Tramadol is “well tolerated” with regards to pain it, like other opioid drugs, can also cause common and serious side-effects.
Darnall believes her methods can help reduce or even at times eliminate the need for opioid painkillers in chronic pain
A large (n=1700), long-term (year-long) fibromyalgia study suggested, that opioid painkillers may not be the best choice for FM patients. The study, which compared FM patients taking stronger opioid painkillers with those taking tramadol or no opioids or tramadol found that all groups reduced their pain levels over the year but that those not taking opioids made the most progress. Significantly, greater improvements in pain, functioning, depression, insomnia and disability were seen in either the tramadol or the no-drug group. The study concluded that “Overall, the findings show little support for the long-term use of opioid medications in patients with fibromyalgia given the poorer outcomes across multiple assessment domains associated with this cohort.”
Another study found that about 2/3rds of FM patients reported that opioids were “very effective” at reducing their pain but that those taking opioids for longer periods were more likely to be in more pain. FM patients were also less likely to discontinue opioids than other patients because of improvements in pain and more likely to report adverse experiences. Another earlier review acknowledged that opioid painkillers are commonly used in FM but “found no evidence from clinical trials that opioids are effective for the treatment of FM”.
Another study, citing the effects of opioids on cognition, found that “motivational interviewing” reduced pain severity, increased physical functioning and light to moderate physical activity in FM patients not taking opioids but not in those taking opioids.
Finally, a Mayo study indicated that FM patients undergoing an opioid taper program had significant improvements in pain scores, depression, catastrophizing, health perception, interference with life, and perceived life control.
Darnall reported on the experience of a fibromyalgia patient named Joan. The opioids Joan was prescribed for fibromyalgia and low back pain helped at first, but over time she required higher and higher doses to get the same effect. By the time she got to Darnall’s office she was taking two opioids around the clock and suffering from numerous side effects including memory problems, severe fatigue and pain, and difficulty standing and walking. Not surprisingly, she was also depressed – for which she was given another prescription.
A very slow (5 month) opioid taper that got her off opioids eliminated her depression, gave her her brain back (she said opioids robbed her of her memory and her sharp thinking), improved her sleep, and surprise of surprises, reduced her pain levels.
In Chapter 4, Darnall lists a variety of unexpected opioid pitfalls that less wary opioid users can fall into. They include trading pain relief for a loss of functionality, overlooking opioids as the cause of new symptoms such as anxiety, depression, and poor sleep, using opioids to manage anxiety, using opioids to treat the wrong kinds of pain (such as neuropathic pain), and worsened pain over time and others.
The Solution
Darnall effectively communicates the potential downsides of using opioids to treat chronic pain in the first half of her short book. The meat of the book, though, lies in the second half titled “Your Solution is to Gain Control”.
Darnall doesn’t promise an end to chronic pain (she acknowledges that some pain cannot be fixed) but does promise to provide a way to manage pain which will relieve suffering, reduce one’s dependence on drugs and increase one’s functionality. How she proposes to do that is up next.
Having SUFFERED from fibromyalgia for over 13 years, I was on tramadol for many. After developing degenerative disc disease and buldging discs, my pain mgmt. doc switched me to oxycodone. WHAT A RELIEF! Finally I felt like I could actually do some things during the day. I have been taking it for a year now, have not had to increase my dosage and at times have actually taken less. I’ve also ALWAYS TAKEN LESS THAN WAS PRESCRIBED. So much for your studies…
Well put. Years of studying the research for M.E. has taught me not to trust summings-up of academic research, least of all meta reviews. People are now being rewarded for coming up with reasons people are “mad and bad” or at best mis-led for taking opioids long-term; hence the books and articles are flowing. Also, this b.s. of “short” vs. “chronic” pain is meaningless without definitions. It is perfectly possibly for a cause of short term pain to continue to exist long term (talk to my top-ranked spine surgeon). Without precise discussion of molecules, neurons and receptors work like Ms. Darnall’s is of limited applicability.
It’s very true that studies can never capture individual variations. I, for instance, would never discard a drug simply because a study failed – because I’ve heard of too many exceptions to the rule.
Darnall certainly agrees that structural damage is going to cause pain whether you are on opioids or not; some conditions are simply going to remain painful. While molecules, neurons and receptors obviously are key players in understanding the chronic pain equation, I think Darnall would also say that if an approach works, it works.
In part II we’ll see what her approach consists of.
I so agree. I’ve had a long term chronic pain situation made much worse after a 2disc fusion surgery. A combo of tramadol and Vicodin together is what keeps me in the game of a normal life. Without them, I’d be in bed.
Thanks for letting us know 🙂
Good for you. As Darnall states in the book – and as I reported – opiates do work for some people with chronic pain, and you are one of them – so good for you!
Studies can never capture the individual variations in a disease – and we shouldn’t expect them to. The fact that oxycodone works for you does not discount the fact that studies indicate that the effectiveness of opiate painkillers tends to wane over time and the side effects build up.
By the way, they are not MY studies. I did not do them – I’m simply reporting on them. If they indicated that opiate painkillers were effective for long term chronic pain I would report that.
Although I am late in my response, it bears writing. I wanted it recorded here. I was on the same, exactly the same dosage and medication for over 20 years. I am currently in the process of weaning off. I am on less than 1/3 of the amount I was on for that 20 year period and I am in pain. I am past any withdrawal period as I have been weaning off over a period of 3 years. I was fine up until I reached this level of milligrams. I NEVER needed to go above the original amount. My life has changed and I have gone through menopause so that may or may not have something to do with it. But my pain doc says I may be at a plateau. I resent the ABSOLUTE assumption that opiates NEVER work for people with fibromyalgia. They enabled me to exercise, have somewhat of a life and feel pretty “normal” everyday. Now that I have reached this lower level, I may go back up to where I was comfortable. Every Fibro patient is different. That is what your research misses. Had to be said. Ask my family how I was for the last 20 plus years. They were very supportive of me because I had a life. Now I’m becoming less active and more house/couchbound. Sad but true. Please don’t put us all in one category. We are ALL different!
Thanks. You’re right. We are all different and we shouldn’t forget that. This blog, though, that opioids cannot be part of a pain management regimen e.g. “Darnall isn’t a blanket opioid detractor – she says opioid drugs can be one part of a patient’s pain care program”. For sure there are FM patients that opioids work well for. Opioids can also work well for other people in chronic pain.
Most studies, though, some of them quite large suggest that long term opioid use is usually not effective. That’s the point of this blog.
Congratulations, though, on being one of the people for whom they have been effective and thanks for sharing your experience.
This article assumes all patients are alike. That’s the problem with health care. It’s not one size fits all. Most who take opioids will tell you that it DOES help, studies be damned, as it indeed reduces the pain. A small percentage of us don’t get high, sleepy, constipated, ect from them either. That’s me. And guess what? I hit my opioid threshold due to tolerance and I’m reducing my dosage to get better pain relief. We just have to pay attention to that cycle and when it hits, reduce the dosage and it will work better! They don’t talk much about that, no it’s just get off them and suffer. It also has it’s place with long term pain relief. There are people, like me, who can’t take anti-inflammatory drugs. What’s our options? Opioids work well. The pendulum swung in the wrong direction and it’s time they start listening to us chronic pain patients who DON’T abuse their meds and DO get pain relief from them. Many are committing suicide and turning to illegal drugs NOT for addiction but for simple PAIN relief!! They need to LISTEN to the patients who are suffering. I rather be on an opioid for life than to be in bed in pain all day and not take care of my children. It’s my body and my choice, right?
Even for people who can take NSAIDs they are not necessarily safer than opioids. Most are Cox-2 inhibitors and contribute greatly to odds of heart disease — in particular for pain patients who may need maximum doses constantly and ad infinitum. That is apart from and in addition to possibly gastric harm or kidney damage.
Similarly, with acetaminophen/paracetamol/Tylenol regular ingestion at doses effective for pain may easily surpass the threshold at which liver failure occurs.
This is a tough time for people who need painkillers, that’s for sure. In fact, Darnall agrees that opiate painkillers can be part of a chronic pain regimen; i.e. they can have their place with “long term pain relief” – and many of her patients probably are still on them – just at lower levels than before.
“Darnall isn’t a blanket opioid detractor – she says opioid drugs can be one part of a patient’s pain care program- but her emphasis in the first part of this book consists of highlighting the dangers and costs of over-prescribing opioids.”
Darnall doesn’t promise that she will get people off of opioids. In fact, several success stories in the book refer to people who have reduced their dose – and feel better because of it – as you have.
She would also actually completely agree with your statement that “the problem with health care. It’s not one size fits all.” Right now, treating pain is often a one size fits all approach (opioids) for acute and chronic pain. In the book Darnall will present other options for chronic pain including other drugs and other means.
In fact, the book is basically about expanding options.
In my 25 years of FM, I found no painkillers that were either very effective or that I could tolerate consistent use of. Everything had a side-effect; constipation with some, diahorrea with others, horrendous dry mouth with others (I actually lost a saliva gland to this after a mere few weeks on Amitriptylene).
So I did without painkillers almost all the time. When I had very bad episodes of FM pain concentrated somewhere, I used Nurofen once a day only, for about 3 days. Several times a year. Nurofen was the only thing I found that gave noticeable relief to me. None of the others even gave much relief, to go with the side-effects.
As I have steadily improved over the last 4 years with luckily discovering a multi-disciplinary protocol that works, I am 80% better including in pain levels, and have probably used Nurofen only twice in the last year. But it is hard work and it would be much preferable if medical science actually found a cure. I am convinced that the underlying dysfunction is in the myofascia and its “lubricant”. All this research into CNS dysfunction and “pain channels” is a wasteful diversion of resources in my honest opinion. Of course the CNS is dysfunctional when there is real pain out there in the muscles, and they are not responding to commands from the CNS, to relax, because something else biomechanical has tensed them permanently. I say that focusing on the CNS is like focusing on the electronic management of a car engine that has sand in the engine oil.
I find it disturbing that these researchers are still using the measure called “CATASTROPHIZING” to determine success or failure of treatments. This is a misogynistic term which would hardly ever be applied to a MALE patient. As a person who has had Fibro/CFS since 1983 I can say that some things never change. Also opiods never worked for me…genetic testing by my doc determined that I am an ultra rapid metabolizer…Everyone is genetically different as to how well opioids will work.
Not until recently was Tramadol added to the opoid list and put as a class 4 drug to be monitored. For so long it was uncertain what made it work. It also works on all the neurotransmitters and is also a mild calcium channel blocker. I have found that it along with Bentyl (a few days a week) – helps POTS better than anything else I’ve tried. It doesn’t sedate and zombie me out or decrease my mental faculty. I have more energy, yet less sympathetic nervous system firing. It does however lesson over time it’s benefit and I cycle off of it for 2 to 3 weeks and then go back on at a half pill and it starts to work again. Then I will increase to 1 pill and and the most 2 a day – if an especially bad day. This is a 50mg dose and very small amount. (It also comes in 100mg) I was RXd this for FMS years ago, before it was regulated, at Mayo and told to take them 4 times a day – which I never did. I can cycle off them with no withdrawal and reset their effectiveness this way.
I’m a rare person to be able to use them this way. Many up their dosage when they become ineffective. But that could potentially lead to addiction and they may not work. More education needs to happen. If people knew my trick – it could help them. BUT….. they do not take away all the pain. They only tamper it down to tolerable. My benefit is to my autonomic nervous system and Hyperadrenic POTS. I still have significant pain and would love to find a way to help that. Looking forward to 2nd part on this.
Issie
Thanks for passing that on 🙂
Everyone is different…but the real thing that I find missing in this article is that it doesn’t discuss the ROOT issues.
When you know what the root issue is, that is causing your pain (and many other symptoms associated with FM/CFS), then you are in a position to actually fix it – and in most cases, naturally.
Two perfect examples:
1. Back, neck and hip pain – you go to the doctor – they give you drugs/pain killers that MASK the pain instead of treating the issues…and the issue? Most likely your spine is out of alignment…causing not only pain but headaches, constipation and and and. One of the biggest issues? YOUR MATTRESS. Finding someone who can properly (and gently and safely) put your spine back into alignment can make a massive difference.
And then of course the opiates cause dependence, you may require medications to stop the itching, the upset tummy and the constipation…you have become Big Pharma’s favourite type of customer!
2. Toxicity & Toxic Overload – I hate to tell you…but you are toxic. An EWG study in 2005 found close to 300 toxic pollutants and chemicals in newborn babies umbilical cord blood. Meaning…we are BORN TOXIC. Some of these chemicals found in this study had been banned over 30 years ago! Passed down through mother, even grandmother. Our babies are being born in a toxic soup…as have we been, also.
There is no getting away from toxicity – it is everywhere. It is in the aluminum foil you wrap and cook your food in (and aluminum is even in your deoderant…and baking soda).
Your lovely bag of organic spinach? Probably in a bag laden with the hormone disruptor BPA. And the BPA-free plastics? Findings are that BPS is just as toxic as BPA – at double the price (and excellent marketing ploy there!).
Heavy metals are in our water as are other toxins – such as fluoride. They are in our teeth – in the amalgams. How come mercury is so toxic, yet they are putting it in your teeth and mouth and have a bio-hazard container at the dentists for your amalgams?! But that is somehow safe? And if you remove it…equally as toxic, unless done by a professional…
Parasites – it is estimated by the Center of Disease Control (CDC) that millions of Americans (and elsewhere, even in non-third world countries) are dealing with parasite infections. And even if you are a vegetarian now, they can last over 10 years in your body from fish, pork beef….from your pets…from water and air….
You know how many people find that they have a flare up during a full moon? Apparently parasites are on a lunar cycle and that is when they are most active …and breed. They also burrow in your joints and muscles (and organs)…and leach vital nutrients from your body. You know how so many of us are B12 deficient? And how magnesium and vitamin D can really improve our health? Although our foods are also lacking nutrition, these little buggers are eating what’s left!
Oh…and they also eat away at your intestinal tract – hello leaky gut syndrome!
This is also where Lyme Disease is becoming more associated with fibro and CFS as a root cause – but it doesn’t just stop at Lyme, there are many (1000s) of types of other parasites that can be wreaking havoc in your body – and most tests (if you actually are able to get one from your doctor) will be almost guaranteed to be very narrow in scope – and come back negative.
Fungus – Many of us struggle with candida – and black mold!
Viruses and Bacteria – Most of us test positive for Epstein Barr Virus EBV. Just like chicken pox/shingles herpes (and other viruses and bacteria) linger in our bodies – until removed.
And then there are the contaminants in the food we eat (such as glyphosate – research has shown that fish exposed to glyphosate show digestive problems…in other words, you may not have a gluten intolerance or Celiac’s but actually, your body is reacting to the poison in your food – and not just sprayed on wheat -farmers are using it on a plethora of crops!).
Your body care products – the average woman is subjected to over 515 toxic chemicals A DAY in just body care products alone! And Johnson & Johnson’s have only recently removed FORMALDEHYDE from their products (and have a ways to go with their other products).
I fully believe that yes, we are sick. But there are actually root causes for what we are dealing with – and toxicity is a huge white elephant that doctor’s have no idea about! (Because Big Pharma can’t treat it…heck, Big Pharma is partially causing it! Ps Bayer Pharmaceuticals is merging with Monsanto the GMO seed producer and will have a licence to ill with their glyphosate (aka Roundup).
We are Big Pharma’s dream illnesses here folks! Once you step outside conventional western medicine, where our illness is profit, then that is where there are answers – and help.
Here is a good quiz that gives an example of how toxic you might be:
https://feelgreatnow.co/quiz-how-toxic-are-you/
Once I have had my eyes well and truly opened, I have been able to say goodbye to FORTY PILLS A DAY and treat myself naturally for the symptoms I was struggling with (half of which were caused by the medications!).
There is help. There are answers.
Please know I am an active advocate for fibromyalgia, CFS and chronic pain. My husband and I developed a 3x HealthLine award winning app for fibro/CFS (FibroMapp) and we have over 12,000 people on our Facebook page Fibromyalgia, CFS & Chronic Pain Life. In other words – I care. And I have been there – and want to get better myself and support others, too.
I have spent 9 years researching, being extremely unwell (and unhappy). Seriously, toxic overload syndrome is real. It is huge. And we are all affected. Here is a list of symptoms of toxic overload:
https://feelgreatnow.co/toxic-overload-symptoms/
I hope that some of this information is helpful to you. Perhaps it might resonate for some of you.
Alyssa
I agree – we are all born different, and just because most people seem to not be chronically affected by the many toxins in our environment, does not mean that there are not unfortunate people who end up suffering. It would be good if medical science could cure the “sensitivity” that affects some small proportion of the population.
FM is surely one of the conditions to which toxins contribute. It is not the only trigger but it may be an essential one. My own mix of triggers that led to me succumbing to FM, included high job stress, a Giardia infection episode, an operation, and of course toxins, of which Cadmium showed up as very high in hair tissue mineral analysis (years later, when I first tried this approach).
Maybe without the cadmium / toxins, I might not have got FM. Maybe without the Giardia infection, I might not have got FM. Maybe without the operation, I might not have got FM. Maybe without the high job stress, I might not have got FM.
I was very fit and a competitive cyclist, and my succumbing to FM first showed up in inability to recover, and a humiliating drop in stamina. So there are various hypotheses about FM that I categorically reject, such as the “attitude” / mind one. If it was about attitude, I wouldn’t have got FM. I knew I was good, and spent a long time in denial, believing in myself even as my body was being further and further sabotaged.
I have used opiates since 2005 for ME/CFS and fibro and while they work well, I do not like being forced to take them regardless of pain level in order to avoid withdrawal. I have never had the desire to take more pain meds over time and would love to see the pain management industry find an effective non addictive drug that does not have the side effects of opiates. I sure hope they are looking instead of cashing in on the current trends in pain management.
Cort, you do very valuable work in providing both information and analysis, which makes me all the more concerned to see you quoting the irresponsible and ill-informed Mayo Clinic as a source readers may presume to be accurate. You know how totally wrong and distorted and downright cruel their work on M.E. has been?!?
Plus, beyond any mere error, they have been unforgivably cruel and dismissive of M.E. patients fool enough to seek out help there, leading to ill-conceived alienation and lack of support from families. They do great harm.
Ergo, quoting Mayo on FM, ME, CFS or any related neuro-immune phenomenon is analogous to quoting Eichmann, Goebbels et alia regarding diet, weight loss and the merits of assisted suicide.
Thanks for your nice words. Honestly I didn’t even think about that. I would note that Mayo clinic has to my knowledge never done an ME/CFS study but agree that their website with ME/CFS is horrid..
I functioned well on long term opioids (Norco because I can’t swallow extended release pills as they get stuck in my LES)–over 5 years with hardly any dose increase and no other issues excepting constipation. Tramadol gave me the worst migraines and other troublesome side effects. When I changed my insurance carrier, I got hooked up with Stanford and thought I should try LDN (Low Dose Naltrexone) since it is their policy to not prescribe opioids for chronic pain.
LDN, for me, is not as effective as opioids, but the constipation is gone so it’s sort of a wash. Too bad there are not more doctors trying ULDN (Ultra Low Dose Naltrexone) as it is purported to mitigate dose escalation in opioid use and so individuals can go for longer time periods and with far less dose escalation–if opioids indeed do work for them. Unfortunately this is very tricky to do…lots of experimentation.
Chronic pain is such a problem. I am going down the list trying to find what works for me. So far, medical marijuana makes me too lethargic, opioids give me constipation and are way too politically incorrect now, NSAIDS, ‘pentin’s, SNRIs and other methods are not so effective. Can’t spend my life under a heating pad or trying to do ‘mindfulness’ or the like. I have a life I want to LIVE! Kratom has promise but not while I’m taking LDN because it hits some of the same receptors that opioids do (and the Naltrexone is an opioid antagonist). So, what to do? Oh, what to do?
Pain is one of more difficult conditions to treat I have heard because it is so complex and people react so differently to pain medications. My guess is that chronic pain is always going to respond best to a variety of approaches. I imagine that sometimes a trade off has to be made between pain relief and functionality. We’ll see what Dr. Darnall suggests in Part II.
Naproxen helps when I really need help. But I only take one or two doses.
Kratom works as well as tramadol for me but with much less negatives (i can take kratom at least every 2nd day and not have to worry about tolerance or withdrawal)
I also have found that kratom and ldn together work fine for me. I usually take them several hours apart but as far as I can tell ldn has never precipitated any withdrawal symptoms. So really I wouldn’t worry about taking them together. It should be fine
Also ULDN is pretty easy to make. Put a 50mg dose in 50ml of water. Next take 1ml of this and mix it in with 999ml of water in another container and now you have a solution that contains 0.001mg/ml.
This technique is referred to as volumetric dosing
This may help someone. I have fibromyalgia. Recently I was diagnosed as almost diabetic. My dad died same age as me (66) from heart attack and had type 2 diabetes. So I cut out almost all sugar and forced myself to walk even though I was exhausted at times- 20 mins every day. in 3 mths I lost 10 lbs. I felt better with less weight to carry. (now 9since 2lbs). But more importantly my pains have eased.And my energy is building up. It was a huge effort but I had no choice. I know this may sound simplistic but if someone gains from it….
I am convinced that you have stumbled across a “multi-disciplinary” approach that results in significant improvement in FM. I made a similar discovery about 4 years ago.
Are you “low carb” or just eliminated refined sugar? I went “low carb” completely. Atkins or Ketogenic diet.
Exercise of the right intensity is perhaps the most important ingredient in any multi-disciplinary protocol that has worked for anyone. You may have stumbled on the right intensity for you. My mistake for 20 years was always exercising too hard. But people who don’t exercise enough, get even worse because deconditioning results in routine activities ending up “too intense”.
In every single story I have ever learned of, where someone with FM improved significantly, they either intentionally or accidentally were doing exercise of the right low intensity with sufficient regularity.
Many other ingredients to a protocol may speed up the improvement, but are not as primary as the above. I think many things I was trying for years, suddenly became effective once I was exercising at the right intensity (in my case, it was trying less hard that was the secret).
Taking high doses of magnesium is important. Use Hair Tissue Mineral Analysis to determine what is the right level. HTMA will also reveal other deficiencies or toxic overdoses, and addressing these all helps, especially the de-toxing. In my case I was prone to cramp attacks all the time once I started to lose weight and to de-tox, this was a guide to increased magnesium doses as well as the HTMA. This is partly because sugar and carbs help the body hydrate, if you are doing without sugars / carbs, you are at risk of dehydration – but increased magnesium supplementation remedied this in my case (and potassium).
There are numerous other things that will become helpful as you improve – when you are in the full grip of FM, most things are a waste of money. Magic supplements like CoQ10 or whatever else may be offered to you, don’t even get through to the cellular level where they are supposed to work. Massage therapy and trigger point therapy and other hands-on therapy just causes a whole lot of pain, and any “releases” that happen reverse within minutes. I could say a lot more. But basically, the better I get, the more I can add to the program, and things start to work instead of being a waste of money, and I get better even faster. I rate myself 80% better after 4 years.
By the way, the body and muscle tissue detoxes progressively, and as some areas lose the toxins, unfortunately they do tend to flow back to some extent, into areas that lost them first, so that symptoms are constantly in flux, recurring and shifting around the body. It is necessary to focus on the overall improvement and stay positive. The Renal system especially may be saturated with toxins that cause these relapses and discouragements as they are flushed out. The longer you have had FM, the worse it is likely to be. I am infuriated with one practitioner who had a success story with a client in the very early stages of FM, the practitioner now thinks everyone with FM can be improved in a spectacularly short time. And the practitioner does not understand that the lucky client accidentally was doing the right intensity of exercise, she thinks it was other therapies that “did it”. Detoxing was one, along with a Paleo low-carb diet, and I agree that that would have been a big help.
But my hypothesis about exercise that is too intense, is that the waste by-products of exertion at the anaerobic level (and one goes anaerobic very quickly with FM) linger in the muscle fascia (when in a normal healthy person these toxic by-products are cleared within minutes or hours at the most) and contribute to the stickiness of the fascia and the formation of adhesions between adjacent layers. This explains the horrible lumps, knots and ridges everywhere in our muscles. Inadequate exercise, on the other hand, foregoes the “muscle flushing” effect of keeping the muscles moving, so that whatever toxins are present, cause the stickiness and the adhesions anyway. And deconditioning results in more and more activities of lower and lower intensity, to become “anaerobic”.
I think this makes sense. I find I have to be active. Even though it hurts. It’s worse if I give in and don’t move.
Since I have CIRS also, one of the issues is with the ability to detox both mold and biotoxins. I have the genetic inability to do this – HLA- DR. But one thing that is stressed with the protocol for this is binders. It’s known that we recirculate toxins as we eliminate them from certain areas. We are to use binders to help eliminate them. I had a time finding one I could use. But Rice Bran with Citrus pectin or Apple pectin is working good for me. I feel I’m turning a corner. I’m also using cistus tea with whole leaf green stevia and sasperilla in it. My naturopath also added recently added Calendula to help with pain.
Issie
Thanks for your comments. It’s good to hear you are so much improved. You have done your research and worked hard to achieve where you are. I have halved carbs as well and eat less fats because my cholesterol was 6.2 (now lower) and I was told it was important in light of risk of diabetes to lower it. Have a dessert once a week. My diet was pretty good before. Never eat chips Chinese, fries etc but there was room for improvement. My diet is now pretty much protein veg fruit low diary and low carb- increased good carb but lower overall. A little glass of wine. Boring but you get used to it. The changes I have had to make have really helped. You are right about amount of exercise. As soon as I try to go past my daily routine I get a setback. I was doing so well I got overconfident and did a really long walk yesterday. Am now in bed and unable to do anything. lol. and probably will feel similar tomorrow but will walk if I can. silly me. I know now to build up gradually. Thanks for advice regarding dehydration and magnesium. I’m a bit wary about potassium as my levels spiked suddenly short time ago and Doctor felt it was linked to magnesium supplement? I now use a magnesium spray but not every day. Your post is very informative. thank you. Will read again when my brain is working properly! I have never heard of HTMA. I have also found painkillers are generally best used sparingly. I tend to believe in minimising use of drugs anyway, also food additives. Rarely eat out and very careful when I do. Being diagnosed prediabetice has been good in a way. I can’t believe how much changing my diet and exercise has helped. I am able to get up earlier get to my art class more regularly and socialise more. I feel more normal and when I have bad times it doesn’t get me down so much. And as you say it’s a case of adding gradually to your regime. Thanks for info and encouraging post. Wishing you continued recovery.
Forgot to say yes massage is not helpful.
What works for my fibromyalgia, osteoarthritis and degenerative disc disease, is a combination of white willow bark, boswellia, ginger (herbal anti-inflammatories), MSM, and hyaluronic acid. I cannot take ibuprofen (causes gastrointestinal pain, burning, and diarrhea), and am allergic to Vicodin. A chiropractor told me that based on the state of my lower back, he couldn’t believe I’m even walking around. I’ve managed to bypass pharmaceuticals totally, and am very grateful this works for me.
Congratulations Cynthia. It’s great to hear that you’ve found non-drug alternatives. I love it when that stuff works 🙂