This commentary was initially published on Pain News Network and is being reprinted here with permission from the editor.
I’m trying to figure out why certain medical organizations think they know more about treating my chronic pain than my actual doctors. It seems every single one of these groups shares the same opinion: Opioids are bad. Antidepressants, exercise and meditation are good.
That’s the takeaway from new treatment recommendations for fibromyalgia and other forms of non-cancer pain recently released by the European Pain Federation and the United Kingdom’s (U.K) National Institute for Health and Care Excellence. Both sets of recommendations are on trend with opioid prescribing guidelines adopted by the U.S.-based Centers for Disease Control and Prevention (CDC) in 2016.
The federation’s guidelines recommend against using opioids to treat fibromyalgia, low back pain, irritable bowel syndrome and other forms of non-cancer pain. Opioids should only be used for certain types of non-cancer pain in instances where other treatment options such as exercise, meditation and non-opioid medications have failed.
The U.K.’s guidelines are even stricter, advising physicians not to prescribe any kind of painkiller to those with fibromyalgia, chronic headache, chronic musculoskeletal pain and other conditions for which there is no known cause. That includes non-opioid painkillers like paracetamol (i.e. acetaminophen), non-steroidal anti-inflammatory drugs (i.e. ibuprofen, naproxen, diclofenac), gabapentinoids (i.e. gabapentin, pregabalin), corticosteroids (i.e. prednisone, prednisolone) and benzodiazepines (i.e. valium, xanex).
(Read more: European League Against Rheumatism’s revised fibromyalgia recommendations are more of the same)
As someone who lives with fibromyalgia, chronic lower back pain and chronic daily headaches, I thank God I don’t live across the pond, as they say. I’d probably throw myself off a bridge if my doctors adhered to either of these guidelines.
And no, I’m not being overdramatic. I’m sure I speak for many of the readers at Pain News Network and my own website, Fed Up With Fatigue, when I express alarm over how authoritarian and inhumane these guidelines aimed at chronic pain patients are becoming.
Of course, things aren’t much better on U.S. soil. Physicians here are still running scared due to the CDC’s opioid prescribing guidelines. It’s becoming increasingly difficult to find doctors who will prescribe opioids or even accept a patient who is already on opioids. It matters little if the patient has been using them responsibly for years or even decades.
A few weeks ago, one of my readers at Fed Up With Fatigue shared that she used to be able to work and manage her home when her opioid dosage was at a certain level. But then the CDC decided to stick its nose into her personal health journey by recommending that general practitioners should not prescribe opioids to patients with fibromyalgia.
Her doctor saw those recommendations and cut her dosage. Now, she’s basically homebound. The little bit of life that she had as a chronic pain patient is no longer.
How is this fair? Or humane?
It isn’t.
And why is she being punished because a small number of opioid users were irresponsible and became addicted? That is not the fault of the millions of opioid users who do use them responsibly!
It’s easy for the board members of these medical organizations to condemn opioids when they’re not the ones in pain.
And it’s a slap in the face to have them tell me I should take ibuprofen for a migraine, or worse yet, to go take a walk. Obviously, they haven’t experienced the headaches that I have – one of which was so bad that I curled up in a ball on the sofa and whispered to my husband through tears, “I just want to die…”
And yes, it really was that bad! To suggest doing some deep breathing or talking with a counselor is going to help that level of pain is completely asinine.
But I think what pisses me off the most is that these government agencies and organizations constantly say over and over and over again that opioids don’t work for fibromyalgia. There’s no way they actually took the time to review the existing research because if they had they would know that statement is based on opinion, not fact.
The truth is very few research trials have actually studied if opioids are an effective treatment for fibromyalgia. In 2016, I took a deep dive into the research on using opioids for fibromyalgia and was stunned by just how little data there really is.
In 2011 and 2013, there were a couple of larger studies out of McGill University in Montreal, Canada, involving around 300 fibromyalgia patients who were being treated with opioids. The researchers concluded “opioid-treated patients were more symptomatic and were more likely to be unemployed and to be receiving disability benefits.”
The inference from that statement is that somehow the opioids increased the patients’ symptoms when there’s no way to know for sure if that’s what really happened. It’s more likely those patients were on opioids because their symptoms were already more severe, which would also explain why those particular patients were also more likely to be unemployed and on disability.
You’d think these researchers would remember a simple principle that many of us learned in college: Correlation doesn’t equal causation.
Then, there have been at least three studies (2000, 2003 and 2011) that looked at the effectiveness of Tramadol, a weaker synthetic opioid, at reducing fibromyalgia pain. All of these studies confirmed Tramadol improved fibro-related pain.
A small Swedish study from 1995 found intravenous morphine did not improve fibro pain, and a 2003 study from the University of Cincinnati College of Medicine concluded opioids were not effective.
I might have missed a small trial here and there, but that’s basically the gist of the research that has studied the use of opioids for fibromyalgia.
(Read more: What the research really says about using opioids for fibromyalgia)
Little has changed since I reviewed the research five years ago. There still haven’t been any large trials testing the efficacy of opioids in fibro patients.
So, looking at the scant research that’s available, how can the people who develop these treatment guidelines honestly say opioids don’t work for fibromyalgia patient? They can’t.
As the saying goes, “absence of evidence is not evidence of absence.” In other words, you can’t say opioids don’t work when you’ve never even taken the time to study whether opioids help fibromyalgia pain or not.
And it is disingenuous to suggest otherwise.
Now it’s your turn: Has your physician stopped or reduced your opioid prescription? Share your story in the comments below.
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I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.
Thank you for writing this article. I absolutely concur. Too many of us are helped by opioids and use them responsibly. We have been caught up and punished by the wide sweeping “opioids are bad” political sentiment. People with fibro have a 10x higher risk for suicide than the average population. There’s a reason for that. We are in tremendous pain!
I am one who used opioids responsibly and sparingly for my 24/7 migraine and all over pain. It took me seven years to get to a place of functioning enough again to have a semblance of a life and was no longer bedbound. Then my pain specialists stopped prescribing Norco and gave me Tramadol instead. I’d only been taking 2 per day~that’s hardly abusive! And, I’m no addict, having had no withdrawal symptoms.
With the significant increase in pain, I went back to functioning at the level I had at onset of fibro crash 7 years earlier. My life, once again, became all about managing the daily 24/7 migraine. I essentially lost my ability to function twice…once from fibro and again, 11 years later, from my pain specialist.
Studies show that current treatments are only helpful temporarily, if at all. Endocrinologist, Dr St Amand did a study on fibro and pain treatment. He found that out of 434 women with fibro, the highest effectiveness scores for pain management were for opioid narcotics and guaifenesin. http://www.fibromyalgiatreatment.com/scientific-research-papers.html
I am grateful to have found Dr R Paul St Amand’s guaifenesin protocol for reversing fibro. Without it, I wouldn’t be here. While I’m still not 100% better, by 12 months the pain went from severe to mild. At 22 months, the fatigue was gone and I opened my own business.
I was allowed 30 pills per month of Oxycodone 5 mg for many years for my fibromyalgia. Some days I needed one or two, some days I didn’t need any. Then the pain specialists decided it didn’t work. Thankfully my pain doc warned me a year or so before. I switched to large doses of ibuprofen (800-1000 mg per day) to make up for the loss of opioids. Now at age 65, the ibuprofen has affected my kidney function. So, no more ibuprofen. Acetaminophen (Tylenol) is a joke. Doesn’t do a thing. So now I have less mobility, less activity, more pain, and an additional medical problem in the kidneys that is really not treatable. I use cannabis tincture and vaporized now but only when I don’t have to function or drive. And this is progress? Our medical system has failed us badly.
Yes, it certainly has failed us.
I was diagnosed in March (2021) with fibromyalgia in the walls of my abdomen. My so-called PCP cut me off of gabapentin because I didn’t have any in my system.i take nortriptyline at bedtime which is for fibromyalgia. I also take rabixin,750mg,( muscle relaxer. My PCP is so stupid, she thinks 30at 3 times a day will last me a month.
Oh…my…gosh…don’t even get me started on the asinine way people are treated with fibro! After being disabled for 20 years with fibro, arthritis and bulging discs, they slashed my fentanyl patch from 75 mcg to 12 mcg. All this does is force me to go to said doctor for nerve blocks and ablations on a near continual basis lining his pockets and draining mine! I got to sit there 2 hours yesterday waiting for him to grace me with his presence in an uncomfortable chair, IV and a tube up my nose! Then he doesn’t even talk to me! I love how the first thing out of their mouth is that pain meds are containdicated for fibro. But is that all I’m dealing with? No. But can you get physiotherapy? Maybe 10 visits a YEAR, 20 if you’re lucky. Ok, now on your $1200,00 a month that doesn’t pay your rent or food already, you get to add a gym membership. Oh, but Covid hit and no gym pools are open for a year and a half? Great. FIGURE IT OUT. With as many people that have this disease, you’d think they’d be able to do SOMETHING to help us. I finally found a new doc in my area, but within 3 visits, all I got was, “Well, you know pain meds DON’T help fibro!”🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯 Really?
You nailed it!
The war on pain medication has gone too far…. It was one thing when I was denied meds for my chronic illnesses after moving from one state to another in 2010 because I had access to natural and later alternative treatments that worked better for me. At that time everyone told me to keep looking for a doctor who would prescribe opioids, but I knew deep down that sooner or later I would be in the same boat. What bothers me the most is that not everyone is as lucky as I have been in finding alternative options. Some people rely on prescription medication and should not be denied pain relief.
Thanks for this info, I will share it in my FB group. I have a feeling they will have a lot to say about it.
Hi, I’m in the Uk and have for many years been prescribed pregabalin, cocodamol (which is paracetamol and codine) and antidepressants for fibro. I have regular updates with the NHS pain management consultants and team and they agree that this is the correct protocol for treating my fibro. I take mebeverine for IBS plus other medication for other health issues.
While the theory is to try other meds first, many of the other drugs recommended cause horrible side effects or I have a bad reaction to, they therefore prescribe any and all drugs that are suitable for my pain.
Along side the drug therapy I have attended a pain management course, had several blocks of hydro therapy but had to stop as I developed a bad allergic response to the water, I meditate and attend and adult colouring group regularly. All these things have helped enormously. I also had CBT therapy which was extremely useful. I have regular osteopathy sessions which help to keep me mobile. I have a massage chair which I use for intense back and leg pain when necessary.
Everything apart from osteo, colouring and meditation are provided by our fabulous health care system and as I am on a low income my meds are free.
Although I am disabled and have mobility problems I try and walk 10k a week using a walker, pain permitting. I do three days then have a rest day. I walk with a friend and have a rest for coffee en route which makes it manageable.
All of these things make my fibro manageable on most days but I am never free from pain nor have improved mobility but can cope. Some days are not so good and then I take a muscle relaxant for a few days until the pain is more manageable.
I know you have a different health system in USA and you may not be able to access many of the things I have. But some of the things some people from this site might find useful.
I am a 64 year old lady who has had fibro since childhood. It has become much worse over the last 26 years. I had to give up work from teaching 2009 dye to this condition.
Big hugs and lots of love to all my fibro warrior friends.
Excellent article. Thank you so much
I live in the US and so far I’ve been lucky. I have a wonderful pain management doctor that listens to what I have to.say. He actually increased my hydro prescription when I was switched to his office and I have had no problems with refills. I take as prescribed, for fibro as well as arthritis, low back pain and headaches. I am so thankful for him.
My mom’s had fibromyalgia since ’96. I have since ’91. In 2013 my rheumatologist took me off Vicodin and Klonopin, after
i took one pill a day for decades. My mom’s doc stopped giving her Percocet in 2018. She’s been in heightened pain since. In March, 2 doctors refused to give her pain meds, even though she’s 82 and not likely to become an addict or sell her meds on the black market. Fast forward 4 months. It turns out she has Stage 4 lung cancer. To the question, “What do I have to do to get adequate pain relief? Die?” Yes, you have to be dying. At least she’s getting enough medication in her final months. It makes me angry because it’s cruel. They’re violating their Hippocratic Oath to “Do no harm.”
Another problem: sexism. We know a man in our town (same age as her) who does get pain medication. He told the doc “I don’t think I should be in this kind of pain,” and he was given opiods. Double standard, unless you’re terminally ill.
I’m so sorry to hear about your mom, Margaret. My mom died from terminal lung cancer. It’s tough to see them like that.
It is tough, Donna. Sorry your mother suffered the same. I just got a baby monitor to hear when she needs help. Full circle moment. Thanks for your kind thoughts.
Why won’t doctors in the UK prescribe Low Dose Naltrexone(LDN)? This is a drug that has helped thousands with the pain of fibromyalgia yet they seem to be turning their backs on it. It this because they can’t make as much money on it as they can on other lousy fibromyalgia drugs offered by big pharms? This is at least one way that they could be relieving fibromyalgia pain. It is a possible answer to getting people off of opioids, so why are so many getting refused in the UK? I agree that it may not work for all, and those that it doesn’t help may continue to need the help of opiates. Read about LDN at ldnscience.org, and ldnresearchtrust.org . There is no good reason for any doctor to not try this miracle pain reducer on their fibromyalgia patients. Why is there not more tak about and education of doctors on this promising medicine?
Hi, I’ve had fibromyalgia and chronic fatigue for about 30 years now. I have worked for the same company, full-time for 37 years. BUT, there were so many days I struggled and still do! Honestly, I’ve had to lie about my whereabouts in the office to cover me going to my car to sleep, cry, or just manage. And some days it was a struggle just to get up from my desk to go to my car! I’ve had a few surgeries over the years but noticed every time I had one, I felt really good after (besides the pain from incisions, etc.) but all the other body pain would be gone! The day I had in/out surgery for breast cancer, I told my husband, I want to go for a walk around the neighborhood because I felt so good….it was from the pain meds numbing all the other misery! He would tell me “slow down”….”don’t do too much” etc. Of course, as soon as the meds wore off, I was miserable again. And that is why the medical community are so paranoid to prescribe them because “they say” you will get addicted and want more and more…..and more. But, for anyone that lives daily with chronic pain FOR YEARS, you learn to use the least amount of meds and balance it out to be able to also work, and live a decent quality of life (if you can even do that….I’ve been lucky!). It is so hard to even get any pain meds as all the doctors treat you badly like you are a drug seeking addict! I get so tired of that feeling….even if they don’t say it…just the look is enough (or maybe it’s in my head sometimes because they make you feel guilty)….but it’s not an easy feeling when you cannot quit your job (need the money to survive and benefits), and by just taking a little bit of the meds here and there, you can continue to function and keep a job! Plus, sometimes I want to do other things besides work, and on those days, I know I can resort to a ¼ or ½ of a pain pill to function and enjoy myself to take the edge off…..or as an after affect because God forbid, I had a bit of fun and danced that evening….or rode my bike, or took a mile or two walk, or just had to work some OT to catch up….it is sooo helpful to know that on those days, I can take something instead of laying wide awake in bed all night, in pain, and in tears! 30 years of this and they think we are making things up!! They have no idea what it feels like to live with all the MANY symptoms EVERY SINGLE DAY! We know what we live with, we do the VERY best to manage it (because NO ONE wants to be in this much pain….EVER, and we deal with symptoms ever day…..for 30+ years. I like to say on the days that I resort to pain meds (about once every few weeks), that I’m taking a nice little vacation…..a vacation to get some quality sleep, less pain, and perhaps a smile on my face for once! Because maybe I have a big meeting presentation the next day…..or my kids football game, or graduating from school….or needing to take care of an ill parent. Sometimes, we just need a little support…..and that’s all we ask for!!
I take slow release codeine every night and codeine for when the pain is getting me down.
My doctor keeps an eye on how much I use and has never refused another prescription. I’m in New Zealand.
Hi Donna,l live in the UK,l get nothing at all for my fibromyalgia,not even any help any where,l live on paracetamol,l buy myself,l can only get two packs when l shop,this is all your allow to buy,at one time,so have to have some of my husbands tablets,he can have some as he recovering from cancer..
Had my fibromyalgia for 50 plus years,gave up a long while ago on a cure, just take one day at a time.. Jean
Same here. I rarely see or speak to my doctor. I take paracetamol and/or ibuprofen when I need it, which is usually just last thing at night. I was taking codeine for several years, but took myself off it because I recognised that it was not a safe long term option/I had got addicted/wasn’t even helping to reduce my pain any more. I am not able to work outside the home now and my mobility has worsened due to foot pain (have applied for a disabled parking permit). I am 50 and hopefully I have many years ahead of me, but living with Fibromyalgia and Psoriais is difficult every day.
Hi,
Please see my comments. I thing if you are getting no help you should change your doctor. There is so much help you could be getting from NHS and if your doctor is failing you you should complain to your practice Partner and manager in writing.
Also sed a CAB advisor for other help that may be advisable. With a doctor to support your diagnosis you may be able to reduce your hours and the government will top up your earnings. Also CAB will be able to support a claim for disability but you have to have medical evidence to support your claim.
Good luck.