New Model for Explaining Pain to Fibromyalgia Patients Improves Lifestyle Changes, Communication Issues

New Model for Explaining Pain to Fibromyalgia Patients Improves Lifestyle Changes, Communication Issues

A new model for fibromyalgia (FM) provides a rational explanation for the patients’ symptoms and helps communicate between patients and doctors. The model also motivates patients to engage in lifestyle changes that can improve disease outcomes.

Fibromyalgia is characterized by symptoms of pain and also commonly by fatigue, sleep disturbances, dizziness, and gastric problems. One of the challenges for healthcare professionals is communicating the health concerns linked to the disease with patients.

Patients may feel their symptoms are evidence of their body being damaged and require stronger pain medication, but doctors suggest exercise and psychological interventions. These communication problems are frustrating for both physicians and patients.

Evidence-based data has shown that exercise and psychological interventions improve the outcome of fibromyalgia. But when doctors suggest these approaches, patients appear unwilling to adopt them. One reason is that patients simply fail to realize why such interventions would be helpful. This suggests that a new explanatory model is needed to assist the communication between chronic pain patients and their doctors.

The study, “Explaining unexplained pain to fibromyalgia patients: finding a narrative that is acceptable to patients and provides a rationale for evidence based interventions,” published in the British Journal of Pain, describes the development of a new explanation model based on the Complexity theory, which applies mathematics to biology.

The theory forms the basis of artificial intelligence, and according to it, the body is seen as a system in which errors in the network can occur and that need to be reprogrammed.

Researchers wanted to create an explanation model that can be accepted by fibromyalgia patients and motivate them to participate in the recommended interventions. The new model was developed with the help of 15 fibromyalgia patients recruited through a pain management service. Feedback from the patients led to modifications in how the model was presented.

In its final version, the model was presented to patients as: “The body creates ‘stop signals’ that prevent damage and promote recovery. These stop signals include pain, fatigue, nausea, and dizziness. If the person is unable to respond to those stop signals and does not stop what they are doing, then over time the stop signals increase and become fixed. The body is then sensitized to anything that creates a stop signal, such as stressors.”

The final model was evaluated in three “body-reprogramming” courses, where 25 fibromyalgia patients (22 female, three male) and their relatives participated. Only patients willing to experience interventions other than medication were included. The course continued for seven weeks (two hours per week), and patients and relatives were asked to make comments and evaluate certain factors after the sessions.

They included an explanation of the model; relaxation techniques; mood enhancing techniques; exercise; diet and medication.

Two sessions on individualized implementation using patient-specific insights from the model were also conducted.

“I have implemented changes already, such as drug reduction and more exercise. Also, I have learned about relaxation and meditation. Meditation has now become an everyday part of my life,” said a fibromyalgia patient who participated in the study.

”This has been a revelation and has given our family hope where we thought there was none,” a parent said. “This illness has not only affected my daughter but the whole of our family. We have spent years trying self help, but it felt like we were just stabbing in the dark.”

Hope is an important aspect in the experience of chronic pain. For example, when doctors say “I can’t find anything wrong with you,” patients get no explanation for their illness and don’t know if they will ever be able to get better.

This new communication model not only provides an explanation of why the patient is ill, but also why the doctor has not been able to “find anything wrong” – because the problem is often a software malfunction rather than a broken component.

“Fibromyalgia patients appear to respond positively to a technology-derived narrative based on the analogy of the body as a computer,” the team concluded in their report.

Researchers also found that body-reprogramming courses are helpful, motivating patients to engage in lifestyle adaptations to improve recovery, and believe that the model may help improve adherence to treatment.

33 comments

  1. Heather says:

    Hello, I have fibromyalgia. Prior to my recent diagnosis, I was a very active person as a nanny. I am not overweight and aside from fibro, in good health. Unfortunately, my activity level has dropped astronomically. I find now, that the more active I am, the more I suffer and can be pretty sick for long stretches at a time before a “flare” eases up. An example would be that my sister came to Chicago for a 5-day visit. we had a great time about the city and sight-seeing together. However, when she left, I was in an extreme amount of pain for over two weeks. This was just from your average daily activity level. This did not include any sort of exercise. I am very open to a new exercise routine, but I gather it would require me to start out extremely slow and work my way up. I would not expect to be pain-free though.

    • Linda says:

      That’s exactly what happens once one is afflicted. It took me three years to realize I could no longer live as I once had. One must do chores and projects in steps. Rest frequently. Don’t plan on doing everything the way you once did. It will now be an event to complete every task. Hopefully you will accept this realizations much sooner than I and save yourself a lot of pain. Pace yourself and NEVER over do. Once you understand your limitations and work within them you will feel better.

    • John says:

      It has to be low impact. You can go up to medium intensity, but low impact. So, no aerobics, Zumba, Pilates, weight training, spin class, etc…
      Swimming (at a moderate pace), water aerobics, yoga, tai-chi, walking, etc are all about we can do.
      I understand it can be difficult staying active, but being less active worsens the pain.
      And try to get good sleep. That helps tremendously.
      It is almost like we are allergic to resting or being lazy

    • Erma says:

      I disagree with Drs. Who keep telling us that we need to move and make changes… I would like to ask people who don’t have fibromyalgia if when they have the flu, if they feel like going to the gym, or be more active if they had the flu for extended amount of time. Now let alone, the pain does not cease.

  2. Danielle says:

    I also have fibro and, before I began experiencing symptoms, I worked out at least an hour every day, on top of walking and biking to all my destinations around town. The fibro now makes all of that impossible. I get incredibly fatigued just walking around the block, and if I push harder than that, I suffer for days afterwards.
    I had also been working with a therapist and a psychologist before the fibro came on, and I’ve continued working with them since. Despite all of this, I’m very nearly housebound and unable to work or do basic chores because of fibro.
    Obviously, mine is just an anecdotal case, but my experiences make me entirely suspicious of the model discussed in the article. To say nothing of the fact that doctors hardly need to be encouraged to tell fibro patients that the pain is “largely psychological” (read: “all in your head”), and that being told as much is mentally and emotionally devastating and profoundly invalidating for people who already face huge stigma in both mainstream and the healthcare industry.

    • Jill Jensen says:

      I couldn’t agree more. NO ONE denighs the importance of exercise, but you surely don’t push yourself to do it if you suffer extreme pain for several days afterward. I’m so sick of hearing I need to exercise more I could scream. Let those with that advice just TRY to literally walk a mile in our shoes and see what they say then!!!

      • Shonna Dove says:

        I just came from seeing my rheumatologist, she says pro athletes when they started they were sore to but they pushed through it I need you to do the same, if you keep it up everyday to won’t hurt. I tried all this before almost ended up in the emergency room the pain was unbearable. My husband says good I’ve been trying to get her to play tennis yeah ok, its not easy when you have arthritis tugging you in the back.

  3. yop says:

    Bullshit. Stop trying to convince us of being ok or getting better doing what “theory” (of theorist with economic interest) tells us that will get us better. We know when we get better, we can feel our body and limitations much better than any external mind or theory and be sure that we won’t stay away from doing exercise just from lack of confidence on it, we are desperate to get better and have been told the exercise thing so many times that we have been completely able to check (better than any “expert doctor”) that it hardly helps at all. Meditation is another world, one you need at least some energy to get in and many FM affected that also suffer CFS/ME won’t be able to afford easily, but it cannot be considered exercise, in any case, it is a complete different and hollistic therapy that doctors aren’t able to provide us, a recomendation to meditate for FM is like a prescription to pilot a plane for stress, it could help but it’s just not accesible in any easy or quick way.

    • Cindy says:

      BS was my first thought.

      It is the HSV-1 virus (cold sores) attacking the central nervous system. IMC-1, which suppresses this virus, is fast tracked by FDA in stage III clinical trials.

      British psychiatry wants to take over this disease like it has ME/CFS.

      • Sandy Brooks says:

        Cindy, I agree with you. Are you involved in the study?? I spoke with the MD that is conducting this clinical trial. I would love to hear more of your thoughts on this

    • Jacqueline D Reid says:

      I am a long time FM person. I did not believe in meditation, until introduced to me by a friend. No cost. Home group of friends. Has worked miracles in managing my illness. There are also books and utubes to get you started.

  4. Jan says:

    I have found that making myself get up and going for a walk wether short or long even though I start the day in extreme pain. ,makes me feel better. Don’t know if I could do any other excersise but a little light gardening helps too

    • Metti Palmer says:

      Hi I have suffered with chronic pain since 2012. In the last six months I have developed Fibromyalgia. I’m gradually dealing with the various pains and accepting it as part of me. It’s those exhaustion days that get me! I call them my sloth days as even breathing is an effort. I’m fed up with so called specialists telling us to do this and do that! I’m fed up with them not accepting Fibro affects us all in different ways and we aren’t all the same. I don’t get anxiety and I don’t suffer with depression as an example. I have found Acupuncture and hydrotherapy is the only two things that help me. Yet these two treatments aren’t available at the Pain Management centre where we get shoved over to! Don’t you find that ironic?! In the uk you are only allowed an 8 session taster of these! It’s about time this was changed. I can’t afford to keep going private n pay £45+ for an hour of acupuncture yet I know it has helped me immensely. There is money set aside to help cancer patients, dementia stroke and various other long term illnesses but there is nothing to help Chronic Pain sufferers! However Chronic Pain is also a long term illness and it’s time we were recognised as such!

  5. Shy says:

    Ha I share the thoughts of some of the other commenters – Typical british BS trying to push CBT, GET, and anti-depressants on people who aren’t necessarily depressed. Also finding hilarity in the distinguishing of FM -depressive vs FM- non-depressive. Unfortunately the typical “let’s fix this with therapy” mind set has caused the alienation of patients who are both physically symptomatic with one disease or often MANY physically illnesses (obviously there can be a neurological and mood component in these)- has lead to patients who are both mentally and physically ill often being blammed for this nonsense ^. Basically since I have been depressed since I was a child I am unwelcome to participate in the patient community like someone who isn’t. It’s alienating, it’s frustrating.

    I am sure that it helps those who have never had a mental illness in their life besides a “blue day” or a little anxiety to distance themselves from us. There is no way for a disease to be taken seriously unless you can “prove” there is no psychological component now- dysautonomia does it: “POTS patients are less likely to have psychiatric disorders than the general population without POTS,” ME and CFS have had no choice but to do it since people are literally dying from ME getting these treatments and CFS patients being offered no alternatives or futures unless they resort to literal quackery or expensive, but legit researcher/doctors.

    I have had fibro symptoms since I was pre-teen. No one caught it until I was in my 20s. Since then I have been on 5+ antidepressants including ones for fibro treatment. I have been in therapy for years. They have never helped my pain, and only once have the meds helped my depression. When my depression was helped? My pain was just as bad, and no I didn’t feel “better” about my outlook and pain, and it never would have. I used to exercise when I was young but I have stopped over the years, and no longer can due to ME/CFS symptoms- when I overexert myself by leaving the house for an hour or two and walking from the car and back I sometimes am unable to move essentially.

    I think it is a flawed theory honestly. I think going the direction of nerve wear like the other article that just came out this week in the retinal/nerves and mitochondrial basis make more sense. I think genetic components make more sense. Pretty much anything makes more sense then “try CBT, GET, and anti-depressants.”

    Doctors keep dismissing fibro patients and telling us to lose weight- weight is NOT easy to lose, no study has ever shown it has. Infact studies have shown the more you try to lose you often gain more at times. But then while scolding us like little children for not losing the weight- which they perceive as our biggest problem- they give us anti-depressants. Almost every anti-depressant on the market causes weight GAIN and it is very hard to get drug related weight off- harder than just overeating weight.

    Meanwhile no study on fibro, CFS, or anyother illness will be taken as legitamate unless it is done on thin, non-depressed people. That might help the soccor mom who just got diagnosed, but what if those who have been sick far longer, far worse, etc are different after progression in the disease? Doctors keep saying “we know this isn’t progressive” yet all the patients I talk to almost everyone who hasn’t been helped by the sub-par treatments, has gotten worse over time. It is interesting now that they are saying that there is damage in our eyes. It is just annoying that instead of being taken seriously we are told our illness is manifested like a somatic disorder- IE hysteria.

    Just because you can’t find something on a test doesn’t mean it isn’t there. For example we know some with autoimmune illnesses have interstitial lung disease- but that doesn’t show on the exams they run until the damage is severe and irreversable.

    Yes deconditioning could play a role, but I know many fibro patients who push through being in constant pain and still exercise or live their lives. I was doing my best before I was hit with ME or CFS and horrible dysautonomia symptoms.

    It is just interesting how they still are finding ways to blame patients for being sick, it’s something doctors are exceptionally good at. My solution isn’t obviously to throw opioids at everyone, nor is it to dismiss people who have gotten help through these methods, but it is annoying that these treatments have to be marketed and sold rather than proven as real to us. If they really worked for us, don’t you think we’d all be using them? And yet many of us continue to suffer, and you can’t say it’s to scam welfare because there’s more people with fibro, more people with depression, more people with CFS then there are people on welfare. Most people with these work and work full time at that and very rarely ask for accomodation despite having the quality of life of someone in heart failure or with moderate-severe COPD (because that’s what they say about dysautonomia and most people with CFS and fibro I have met also have dysautonomia symptoms).

    TL:DR; I’m tired of researchers who don’t really know what these illnesses look outside of their research bubble – taking government money for the only things the government wants funded and the diseases being consistently ignored.

    And I can’t wait for the lawsuits that will happen when they do find proof that these illnesses are identifiable and progressive and we were simply given 10 sessions with a therapist straight out of school and told to jump rope while our bodies declined. But the UK, US, and CA govs all know this and it’s too late now so they have to prevent any such thing from being proven because they can’t afford lawsuits for having ruined peoples lives.

    Also looking forward to the whining “But we are doing research on your disease to help you! Why aren’t you happy we are finding things we think work for you? We did a trial with 15 whole patients- isn’t that proof that all 20 million+ with this disease can be helped by time with Dr. Phil? 🙁 Why are you soooooo mean to us? We feel we are being taken advantage of for our hard work and are underappreciated… Maybe we will just stop researching your silly malingerer disease and never research for you again see how you like it!”

    Mmmm yeah because your help so far has really benefitted us so much so far. It’s almost as if we are taken less seriously than before thanks to the research for CBT, GET, and AD’s came out. At least before they were willing to believe we could actually be helped or looked at. Instead now we will have people die from cancer and other diseases because “well it’s probably just your fibro/fatness/depression that causes that.” It’s already happening, of course things will get worse. And they expect us to not be depressed when this is the outlook. Of course, suffer and be happy about it- at least we figured out CBT might help 0.5% of your pain, you should be greatful.

  6. Liz Nakazawa says:

    I find that if I walk from 10 to 30 blocks a day I feel much, much better. One can slowly work up to this by doing a few blocks a day,
    then five, then ten,etc.

    I also try to avoid toxic people: people that complain, people that try to control and people that generally talk non-stop. Those people give me flares. Being by oneself is preferable to these people.

    • Jill Jensen says:

      So help me understand, how long did it tale you to work up to the distance you are currently walking? How long did you suffer in debilitating pain after each walk?

    • Venus says:

      Bully for you! I used to run marathons and walk for miles until I got sick. I felt like I was trying to exercise myself to death. Now I have psoriatic arthritis (with no psoriasis), to boot! So my soft tissues and joints are all killing me. Yes, I’m depressed, who in their right mind wouldnt be? I try not to think about what I used to be able to do: it’ll make me completely suicidal. I’m happy your program worked for you but you sound rather judgmental about the state of affairs of others to me.

  7. Nini says:

    Ok. A study that came up with this profound wisdom. IT WAS COMPRISED OF FIFTEEN PEOPLE! And it can’t be stated that exercising more helps. I call B.S. . It may help some…or more than some. However…for MANY it creates more problems such as extreme flares…more pain..exhaustion. I’m sorry….in order for me to validate the research…I feel it has to be a much wider study with many more people involved.

  8. Meirav Leshem Gonen says:

    I am a coach and i have coaching groups to train how to live with fibro. I am interested in the model and would like to have more information about it.
    Thanks

  9. Brie says:

    With my fibro (&everyones is different!) I find that the level if activity depends on how my body is feeling thar day & time; some days are better than others and i can do an easy to moderate workout..then there are the bad days and sometimes those are kicked off by exercise done the day/hour before but no doctor seems to understand that and they continue to push exercise..doctors need to stop and really listen to what thier patients are saying and stop pushin that thier way is the ONLY &RIGHT way to go about things..listening and understanding more needs to be done on both sides of the table..

  10. Amy says:

    I was diagnosed 20 years ago at age 25, and had symptoms for many years prior. I work full time since I own my own business. I am very lucky that I am highly functioning, but in order to do that I use a wide array of treatments and therapies that keep me functioning, including several medications, physical therapy, exercise, eating healthy (or at least as healthy as I can ;), and I recently started seeing a psychologist and am going to try meditation. That said, a study of 25 people is hardly convincing. It really has very little scientific merit, and I agree with those who have said that it feeds into “this is your fault – if you would just try a little harder” mindset of many physicians. Doctors like things that fit into nice little check off boxes with a prescription to fix the problem. Issues like fibro and others frustrate them, but patients shouldn’t pay the price by being told that they need to exercise, think positive and eat their vegetables. It’s a huge disservice to people who are truly suffering.

    • Erma says:

      I agree with all those who to others sounds like a cry baby… I’m glad we are all speaking about how we truly feel. It has helped me to believe that I’m not crazy and that my illness can be validated by reading about the exact same symptoms. I try and we all do, live our life’s, because we have to; but we would gladly give up the pain to have our lives and bodies back. Let’s continue to speak and help each other for support.

  11. Kris-Tina Paskett May says:

    I not only have fibro, but I am also, bi-polar, OCD, ADD, and an addict. Extremely active my entire life. An ex dance instructor and single mother of 5 awesome kids. I attend my meetings,take classes see my councilor once a week,exercise daily, and work as a cook full time. I meditate practice mindfullness, but I don’t eat right. I take cymbalta, reperidone, trazadone, etc. (Addict, I haven’t to be careful) I am 42 now and I can trace symptoms back to when I was 17yrs. Misdiagnosed and wrong meds for years, and I haven’t gotten steadily worse.
    My family gave watched me suffer through my life and haven’t felt fusterated not bein able to do anything but get the newest thing out to try. My Mother got the quell for me just recently, I was again awake at 3am hurting so much I bawled like a baby, I remembered the quell and wrapped it around my calf and turned that baby on. At first it was uncomfortable, next thing I knew was waking up late for work. I finally slept! The pains lessened! It doesn’t work right away for some for me it helped to dull it enough I could relax. I don’t remember a time I didn’t haven’t pain or soreness but relief is heaven. 60 on 60 off little electric impulses going through the calf of my leg to battle chronic pain all over my body, this quell is my way of pain management, of course I still do all the other but this is an addicts prayer! And it’s all ready paid for itself in saving a months supply of meds! Lol anyway I just want to share. I haven’t to work can’t let this fibro win anymore.

  12. Rebecca Wolf-Williams says:

    Living life, it’s what we all want to do. Without constant pain, without feeling like something that got run over by a semi truck, without having to worry IF we’ll be able to even walk across the room tomorrow.
    I would love to exercise, I was a certified low impact aerobics instructor for years and taught classes 3 to 4 times a week but my fibro isn’t predictable, it’s like living in a constant changing flux. And, I have major arthritis issues, including bone on bone arthritis in my feet. It take all I have to get thru the day doing what needs to be done, I have nothing left for exercise or even anything remotely enjoyable. If I did, I would but when daily walking, moving, driving causes pain and exhaustion, it ain’t gonna happen.
    I do sneak away sometimes to the woods or the barn and just “chill” though, and that must be as good as meditation because it helps clear my mind and give me strength to keep on pushing.

  13. Barbara Bloom says:

    This insulting to the Fibro community. The UK study result that promoted exercise and cognitive therapy has just been shown to be false. The reason why patients did not accept the Rx of exercise etc is because it didn’t work and flared up all our symptoms.

  14. Jill says:

    I have no doubt that exercise of any kind helps some who suffer from FMS. But I find it suspicious that the majority of those who suffer find most physical activity causes pain flares. In my case, I don’t begin to feel my symptoms escalate until a couple of days after making the effort to exercise. That effort is usually nothing more strenuous than 5 minutes on a treadmill at a casual pace. I strongly suspect that the studies recommending exercize are not made up of a broad enough, let alone large enough, sample of people diagnosed with FMS. The FMS community will never consider these small “studies” credible enough to be viable courses of treatment until we start hearing about studies involving SIGNIFICANTLY more participants.

  15. Mr. B.E. Wright says:

    I am a male with Fibromyalgia, no male’s I know has this disease! It took doctors 18 months to tell me what I had. They pushed me to exercise for 2 hours every day. Pain was getting worse every day, vomiting, cramps, headaches, stabbing
    Pain all over 24/7. Stop moving when the pain starts! Don’t wait for someone to tell you to stop!

  16. LaRissa says:

    A year ago I was running an operating room as an RN by myself. I worked for 8+ hours five days a week and could lift 30lb trays of surgical instruments without thinking about it. On an average day I walked more than 5 miles! Last December 3rd I was kicked in the chest by a patient waking up from anesthesia, fell on a concrete floor, and have not been the same person since.
    Today I can take a whole day and barely get one room of my house cleaned. I haven’t walked my dogs more than 0.3 miles in months and feel like I’m going to fall over.
    When the doc told me that fibromyalgia is my diagnosis, I came home and cried for hours because I have heard all through my 23 year nursing career that fibromyalgia=psychosomatic pain. I wish I could give all those docs just one day of how I am now!

  17. Wendy says:

    With all due respect to Fibromyalgia News Today and Dr. Andersson, ‘reporting’ (regurgitating) studies like this do not serve FM patients well. All one has to do is read the posted comments.
    As a patient of a FM-clueless doctor (a PCP) who is dealing with undertreated chronic pain, I am concerned.
    I am reminded of a quote by William Osler, “It is astonishing with how little reading a doctor can practice medicine, but is not astonishing how badly he may do it.”
    Last week my doctor informed me that he had just read that SSRIs are not effective in treating FM. Really???!!! Even wikipedia states that. My conclusion is that my doc did a quick Internet search to come up with that.
    Doctors get very little training in pain management, unless they decide to specialize in pain management and obtain the specialized training.
    There is no specialized medical training for FM. Leaving us as patients with doctors who spend less time than we do researching.
    Articles like this can become easy fodder for doctors who do a quick perusal and don’t even realize that the “study” utilized a whopping 15 patients. “There are three kinds of lies: lies, d*mned lies, and statistics.” –attributed to Benjamin Disraeli. Fifteen patients hardly constitutes a statistic, or a study. I doubt very seriously this study was peer reviewed.
    I encourage Fibromyalgia News Today to be more circumspect when considering what is reported as news. Do no harm.
    Again, I offer my comment with respect.

  18. Alexandra Andersson, PhD says:

    Dear All,

    I agree with some of you about the study sample of 15+25 patients are far from optimal, and I can really understand why this article may seem provoking when living with severe everyday pain in life and the feeling of not being listened to.

    Unfortunately research may have some work left to do when it comes to understanding the complex mechanisms behind fibromyalgia and what causes the everyday suffering for so many people.

    There is still no effective cure for this condition and I don´t think this research study is trying to provide one here. Rather it seems like a try of improving the frustrated communication that often seem to build up between doctors and patients (understandable).

    Also, in the lack of an effective cure (and knowledge), those interventions and life changes have shown positive effects in patients with fibromyalgia in previous studies and could be worth trying.
    Exercising produces pain-relieving and mood-lifting substances in the brain that may have positive effects in anyone.
    But if life changes was the solution the fibromyalgia wouldn´t exists, so it´s not “the cure” and also everyone is different, like someone here stated.

    Another thing…It is important to have in mind that just because science doesn´t yet understand what causes fibromyalgia, it is NOT the same it´s being “psycho-somatic” or “your fault”!

    I also want to say something about “publishing ‘bad’ studies” that was brought up here:
    Until science solves the questions about fibromyalgia, I think it´s important to report all sorts of news to you, even if you find limits in them (which is a good thing to see!).
    You can always learn something from a research study and it would feel wrong to deny you the chance of following the true research process and educate about your condition.
    It should be up to you to decide what you think is useful information or not!

    Best regards
    Alexandra Andersson

Leave a Comment

Your email address will not be published. Required fields are marked *