You’re not entirely wrong, but you’re definitely NOT right either.
It really drives me nuts the way doctors and the general population misunderstand fibromyalgia. Fibromyalgia literally means “muscle pain” in Latin. Of course, the muscle pain is real and it can hurt like hell, but it’s not a diagnosis. It’s like going to a doctor complaining that your head hurts, and having the doctor diagnose you with “a headache.”
You’re no closer to knowing the cause of your pain than when you walked in. Just as a headache can be due to any number of conditions, (head injury, sinus infection, dehydration, too little sleep, a stroke, a brain tumor, etc…) fibromyalgia is caused by a whole host of other conditions.
Doctors do a tremendous disservice to patients by throwing some Lyrica at them, telling them to exercise, and chalking it up to fibromyalgia. Fibromyalgia has become a catch-all for illnesses doctors don’t properly understand or are too lazy to test for.
It took me 10 years to find out my fibromyalgia was due to a connective tissue disease called Ehlers Danlos Syndrome. Meanwhile, my obsessive exercising to stop the pain of my fibromyalgia was just ripping my joints apart and forming scar tissue, because I actually had EDS and had no business running, jumping, and engaging in high-impact workouts.
I take the heat on here every time I write about fibromyalgia, but I’m sick and tired of doctors dismissing people in real, chronic pain with a fancy-sounding term that gets them no closer to discovering the root of their pain. Not determining the real root of their pain can put patients at risk for further damage, pain, and even death.
The causes of patients’ fibromyalgia are many and varied. What helps one patient may make another much worse. It’s dangerous to think every patient with fibromyalgia is the same.
But most importantly, of course, pain causes depression. I’ve had some really dark, despondent times when the pain is at its worst. Stop judging your friends!! Stop speculating on their mental health!! Just be a friend. Be supportive. Listen. Be present. Your friends have been through the wringer. It’s a horrific thing to have your life stolen by pain.
On a good day, my body aches as if I have the flu. That is my normal. That is how I have to go to work, take care of my family, keep my house in order and live life. On my worst days, I’m bedridden and unable to walk on my own.
Before getting an Ehlers Danlos diagnosis, I had been dismissed by several doctors as a fake or a pill seeker. I didn’t tolerate that from my doctors and I certainly won’t tolerate that attitude from my friends. Please, don’t pretend to be a doctor or a psychologist. Just be a friend. Pain can be lonely and isolating.
No one recovers from FMS. There is no cure. If someone tells you that they “used to have” FMS, they are mistaken. Their diagnosis was wrong.
You learn to cope with FMS. You learn what your limits are and how to protect your energy. You may have many comorbid conditions such as clinical depression, chronic headaches, irritable bowel syndrome, sleep disturbance, chronic fatigue syndrome, etc. You learn how to deal with each of these conditions. You learn what modalities help you feel better. You learn what drugs help you.
You exercise to the best of your ability without exhausting yourself or your energy. Walking and water exercises are the gentlest. You have a sleep study to determine if you have apnea or if you need sleep aids. You may need narcolepsy drugs to keep you alert at work.
You continue working if at all possible. Studies have been done that show that those who continue working do the best in the long run. Effort on through and keep being active.
FMS does go into remission from time to time. Enjoy it while it lasts. Stress or injury can trigger flares. Retirement helped me a lot! Less stress and time to rest led to a reduction in pain and fatigue. I’m no longer plagued by chronic fatigue.
Constantly read about FMS and about strides being made in diagnosis and treatment. Stay up to date on the current FMS news. Also, read Lyme Disease materials. The symptoms are very similar.
Persevere! For another perspective on what we face, read about the “spoon theory”. The author of this piece has MS, not FMS, but her coping method works for us also.
Above is one theory for which people said fibromyalgia in not recoverable, Read the 2nd theory below for more information.
Defining Recovery in Fibromyalgia
Before addressing statistics, it is essential to define what recovery means in this context. Unlike acute illnesses that can completely resolve, fibromyalgia often follows a long-term course. For some, recovery may mean complete remission of symptoms. For others, it may refer to significant symptom reduction to the point where daily life is no longer disrupted.
Recovery can be classified into several categories: complete recovery, partial remission, and functional improvement. Complete recovery implies a return to pre-symptom health with no ongoing medication or therapies. Partial remission involves reduced symptom severity and improved quality of life, though some level of discomfort may remain. Functional improvement means individuals are able to resume work, maintain relationships, and engage in daily activities, even if some symptoms persist.
What the Statistics Show
Research suggests that complete recovery from fibromyalgia is relatively uncommon. Most studies estimate that between 5 to 10 percent of individuals may experience complete remission over time. This number varies based on the population studied, the definition of recovery used, and the type of treatment applied.
A larger portion of individuals—approximately 30 to 50 percent—experience substantial improvement in symptoms with consistent treatment and lifestyle adjustments. These individuals may not be fully cured but reach a point where fibromyalgia no longer dominates their lives.
Children and adolescents diagnosed with fibromyalgia tend to have higher recovery rates compared to adults. In some pediatric cases, up to 40 to 60 percent of individuals may experience complete or near-complete recovery. The reasons are believed to involve differences in neuroplasticity, stress resilience, and early intervention.
Factors That Influence Recovery Outcomes
Several variables affect the likelihood of recovery from fibromyalgia. Early diagnosis and prompt intervention play a significant role. Patients who receive a diagnosis early in their symptom progression and begin treatment quickly tend to have better long-term outcomes.
Psychological resilience and mental health also heavily influence recovery. Those who address co-existing issues such as anxiety, depression, and trauma through therapy often report more improvement in physical symptoms. Mental and emotional wellness creates a foundation for sustainable progress.
A multidisciplinary treatment approach, combining medication, physical therapy, cognitive behavioral therapy, and lifestyle changes, has been found to increase the chances of functional improvement. Physical activity, particularly low-impact aerobic exercise and stretching routines, has shown consistent benefits in symptom management.
Another critical factor is patient engagement. Individuals who actively participate in their treatment plan, maintain consistency, and make informed lifestyle changes are more likely to report improved health and reduced reliance on medication.
Socioeconomic status, access to healthcare, and support systems also influence recovery. Those with consistent access to medical care, strong family or community support, and stable life conditions often have better outcomes.
Why Complete Recovery Remains Rare
Fibromyalgia is still not fully understood. The condition involves central nervous system sensitization, abnormal pain processing, and sometimes co-existing conditions like irritable bowel syndrome, chronic fatigue syndrome, and autoimmune disorders. These interconnected issues make it difficult to achieve total resolution of symptoms.
Furthermore, because fibromyalgia does not present with visible physical changes or markers in diagnostic tests, it can be misunderstood or dismissed, leading to delayed treatment. This delay significantly reduces the chance of full recovery.
Another reason recovery percentages remain low is due to the chronic nature of pain processing disorders. Even when external stressors are removed and symptoms improve, the nervous system may retain a memory of pain that continues to produce discomfort without a physical cause.
Living Well Without Full Recovery
While the percentage of people who recover completely from fibromyalgia is limited, many individuals can live fulfilling lives through effective management. Acceptance of the condition, realistic expectations, and long-term coping strategies can empower individuals to reclaim control and improve their quality of life.
Modern treatment focuses less on a cure and more on self-efficacy, lifestyle modifications, and symptom management. Programs that teach pacing, stressreduction, nutrition, sleep hygiene, and physical activity have transformed how fibromyalgia is treated.
Many patients report that while their symptoms remain, they become manageable. They learn to identify triggers, adapt their routines, and develop a sense of agency over their health. This transformation is not measured solely by medical standards but by the ability to live a purposeful, joyful life despite the condition.
Conclusion
The percentage of people who recover from fibromyalgia completely remains low, with estimates ranging from 5 to 10 percent. However, a much larger group achieves significant improvement and functional wellness through dedicated treatment and lifestyle changes. Fibromyalgia may not always be curable, but it is often livable.
Understanding recovery in fibromyalgia requires a shift in perspective—from expecting a complete resolution to aiming for meaningful progress. With the right tools, mindset, and support, many people do more than just cope; they thrive.
My 16 years of experience facing Fibromyalgia and 30 years of CFS
Pain medications taken too often can lead to a pain cycle, where every time you take an analgesic, the pain will come back sooner and stronger. Once you are there, you have to stop all painkillers completely. I just had my cycle restarted by a week in the hospital where they gave me Tylenol every 6 hours. That’s a whole bottle of Tylenol in a week, and it was completely unnecessary. Now I am suffering the consequences.
People with Fibromyalgia find relief with gentle exercise. If you have CFS with your Fibro, that’s a different story. But for “just” Fibro, go for low-impact activities. Swimming/aquafit is the best thing you can do for your body if you have any sort of joint, muscle, or soft tissue problems.
Fibromyalgia has a flare/remission pattern like many autoimmune diseases (although it is technically not one….yet), so when you are flared, do as little as possible. Don’t be afraid to ask people for help or even get community nurses to come to help you through the worst of it.
Other things that help:
Remove all toxic people from your life – also from social media
Reduce stress as much as humanly possible (I stopped watching the news long ago – especially political)
Don’t push yourself. If your body says it’s done, respect that and go lie down
You have a certain amount of energy each day. Plan accordingly by spreading your errands and chores out.
Don’t be afraid to nap. Our bodies heal when we sleep.
Get a TENS machine for those stubborn muscles in your shoulders. Just make sure to keep it on low, no matter how good it feels at the time. If you crank it up, your body will ding you for it the next day
Try not to rely on sugar or caffeine too much. These cause spikes and crashes in your energy levels, which actually reduce the amount of energy you can spend in a day. It’s hard though.
Do your research. Read scientific medical studies, research medications. Use logic. Avoid any website that uses the terms “leaky gut” or “homeopathic“, or claims to be able to cure Fibromyalgia. It is not cureable. It can, however, be sent into remission, where your symptoms will be minimal. This is done through stress and energy management.
Work with your doctor. There are many non-painkiller medications that can help, although most doctors wouldn’t think to use them for Fibro.
When I had a bad flare a year and a half ago, I asked my doctor about something to turn my immune system down, so I wouldn’t be so reactive (I have an undiagnosed autoimmune/autoinflammatory condition as well, which has caused a lot of allergies on top of the Fibro / CFS).
This question made her remember something from another patient. As a result, I got prescribed Doxepin, which suppresses the immune system and is also the strongest antihistamine known (bonus). I haven’t had a serious Fibro flare since I went on it. Everyone’s Fibro is different so this may or may not work for you. But it is always worth asking.
Someone suggested CoEnzyme Q10 which has helped a lot with my pain. It doesn’t help everyone. Other supplements are similar.
You need to find what works for you, but please do not take any supplements without speaking to your doctor first. They can screw you up as easily as they can help. Your doctor will probably want to monitor your bloodwork to make sure you don’t develop any imbalances due to supplements, and some of them may not be suitable for your particular form of Fibro.
I have had fibromyalgia for 14 years now. It has a permanent effect on my cognitive attention, memory, focus, and movements.
I struggle almost every day to do simple things as I get exhausted after movement of any kind. In addition, I suffer this chronic at random pain from severe to awkward to annoying to bearable, it varies so much it should have driven me crazy.
It has taken away bits of my personality and especially my sense of humor (as no one would find much joy in constant mysterious sensations however light or intense for a long period of time).
I used to feel like a tortured body/soul. Without sympathy and understanding from other people, I’ve had to learn to accept this existence still with frustrations.
I can find relief very short-lived from any therapies(+altenative) so I tend to ignore what my body tells me in order to actually do some of the normal everyday living activities.
I used illegal drugs but didn’t want to be addicted so I stopped. Prescribed drugs didn’t help. I would do anything to heal from this nightmare.
Pain starts at the back of my head when I wake up lying flat, then starts spreading throughout different parts of the body. Throughout the day, the pain will decrease and increase for no obvious reason I used the think each time weather would vary I would be affected by it. (I live in England).
You become desperate to know why you have been triggered by pain sensations. It has generated anxiety and depression as a result. This condition seems to occur to a positive person with a long experience of stress. I would be willing to participate in any health research on the planet to know more.
Although fibromyalgia symptoms are often written off as being sleepy, it’s really a much more serious disorder than it seems. With over 5 million Americans over the age of 18 diagnosed with Fibromyalgia, fibromyalgia requires more treatment than just taking a nap. Finding the right treatment depends on the individual, but the risks of not treating Fibromyalgia at all can be devastating and more dangerous.
A major risk of leaving fibromyalgia untreated is that symptoms such as chronic pain, fatigue, headaches, and depression can worsen over time. Anxiety and mood disorders can also worsen if you don’t treat fibromyalgia. The chances of all or any of these symptoms disappearing or improving on their own, with no treatment or medication, are very slim. In fact, these symptoms can also lead to permanent changes in your body.
It isn’t just the symptoms themselves that can worsen. If left untreated, the chronic pain associated with fibromyalgia can lead to permanent changes in the way your body perceives pain resulting in increased sensitivity to stimuli and abnormal pain sensitivity. To prevent further disruptions in the way your body’s pain-signaling system works, it’s crucial that you seek treatment for fibromyalgia immediately.
The longer you wait to treat your fibromyalgia, the harder it will be to get relief from the symptoms. Research has shown that those who treat pain associated with fibromyalgia earlier react the best to certain drugs and treatments. In fact, waiting too long to treat fibromyalgia can make it more difficult to heal or experience any relief from the pain, no matter which treatments or medications you try. Alone, it’s best to develop a plan for treating and managing the symptoms you are experiencing as soon as possible.
Because the symptoms of fibromyalgia can become debilitating and worsen over time, especially if left untreated, you risk permanent lifestyle changes. The pain, headaches, and depression likely won’t allow you to stay used or take part in day-to-day activities. These types of changes also affect your family members and relationships. When dealing with fibromyalgia, the worst thing you can do is ignore it and hope it goes away.
Fibromyalgia is a difficult and complicated disorder to live with and is even harder to explain to friends and family, or those without fibromyalgia. It’s important that you remember you aren’t alone and are diligent in taking every step possible to treat the symptoms the best way you can. Waiting and leaving it untreated can only lead to negative results.
There’s only one thing you can do: educate, educate, and educate. Show him websites about it, tell him about it, explain to him how it influences your life.
There’s only one thing you can do if he refuses to listen: just leave him.
I’ve got an invisible and untraceable illness too. Mine is called Ehlers Danlos and due to firstly the limited amount they know about it, secondly the fact that they decided to diagnose it on basis of 7 symptoms, and thirdly the absence of most of those symptoms in me, I don’t have the official diagnosis.
My wife had a lot of trouble accepting it too. And I’ve got to admit: it is hard to accept. I am a very vivacious and lively woman, I move with purpose, I talk with purpose, come across as very lively, loud talker, loud laugher, when the music is playing I sit here swinging on my chair. So suddenly when household stuff comes up I’m sick? Hm-hm.
So yes, explaining explaining explaining
Explaining that one test said I only have 15 % of the normal amount of energy. And anything under 70 is problematic.
Explaining that I worked very hard to get out of borderline so I could live my life. And I did not do all that to waste the rest of my life laying on the couch as I am doing now.
Explaining that not having the diagnosis does not mean that I don’t have it, because of the two things I mentioned above.
Explaining that I am sick, regardless of whether the scientists are able to pinpoint WHY I am sick.
And then she’d ostensibly be satisfied and the subject would be settled for a while and then it would come back up. The last time I told her that she’d have to accept it or I’d have to go. Because I can’t live with someone who can’t accept this. And we talked and talked until every little detail was clear to her. And now she accepts it. But it took over a year.
Some relationships are worth that effort, some are not. You are the only one who can say if that’s worth it. Because you can’t get a guarantee that you can get him to understand it, or accept it even if he DOES understand it.
Don’t hesitate to contact me if you want to rant or want to talk some more in detail, or if you think your husband would benefit from talking with someone else with a chronic invisible illness about this.
My Age is 43 years and suffer from Fibromyalgia since 2004
I was twenty-two when I noticed pain in both my wrists and forearms during typing on my laptop. I was initially diagnosed with carpal tunnel syndrome, a diagnosis that made sense at the time—it was my last quarter of college, I was typing a lot, I also had a job as a barista working an espresso machine—but which later, I think, turned out to be entirely inaccurate.
By the time the orthopedic surgeon was recommending carpal tunnel surgery, I was experiencing pain in my neck and shoulders that started one night when I was binding books for my creative writing degree and has never completely gone away since. Ditto for the pain radiating up from my right foot that I first noticed as I was stuck in traffic driving to one of my first job interviews.
A few months had gone by and a trip to run errands with my roommate resulted in the first time I noticed pain in my low back, hips, knees, and feet after standing for longer than twenty minutes.
By this time I was seeing a rheumatologist who was advising against carpal tunnel surgery. Obviously, I had bigger problems than carpal tunnel syndrome, and a repeat nerve conduction study did not indicate that diagnosis.
Fast-forward two years later, and I woke up one morning with horrible migraine symptoms after surfing the Internet the night before. I’ve had headache symptoms arising with screen use ever since.
I’m thirty-seven at the time of this writing and as of last year, fifteen years after my initial symptoms, sitting upright in a chair has also become incredibly painful for my low back, hips, glutes, and thighs, to the point where I can’t maintain gainful employment with this new development on top of my other symptoms.
I feel rather dismissed when they say fibromyalgia is not a progressive disease. That is true, I think, in that it does not cause damage to tissues—at least not damage we are good at detecting—but it can get worse.
It got worse for me, even as I was exercising regularly, eating right, and taking care of my mental health with psychotherapy. These things are helpful with overall coping, but I don’t feel like they target specifically whatever started going wrong in me fifteen years ago.
The research exploring the idea of fibromyalgia as a disorder of the brain and/or central nervous system is interesting to me, but I find most of the new treatments being developed to be woefully ineffective. Here’s hoping for the future.
IMHO, I blame two things. Misogyny, and a lack of high-tech diagnostic tools.
Misogyny: 95% of sufferers are women over “a certain age”! A lot of the medical cohort, particularly the senior ones were and still are male. Recent studies have shown that even today, a woman with chest pains, is more likely to be discharged than a man, and as a result, more are dying from heart attacks! Men don’t take women’s reports of pain as seriously as men.
It was literally only a few years ago that actual neurological change in FM patients was proven using state-of-the-art MRI and similar tools. Until then there were literally no measurable symptoms, the only patient-reported ones.
The two together led to a disastrous mix of lack of belief. Then some idiot insurers decided, on very scant evidence that more exercise was what was needed for a cure. This made many FM sufferers even worse and was followed up by more misogyny– “you’re not trying hard enough” Of course in the US, you have crappy health care, so this was pushed down every doctor’s throats at every opportunity, and had a worldwide impact, even on countries with great healthcare like the NHS here.
However, the NHS finally listed it as a lifelong condition a few years ago, and more evidence is stacking up. Reduced blood flow, massively more capillaries, drugs that act on the affected pain sensors that are working incorrectly. Finally, it’s on the way to being understood.
Maybe the doctor you followed some patients with the presumptive diagnosis of fibromyalgia. And maybe after years of following them, and checking for objective signs of disease- lab abnormalities, physical changes, etc. your doctor never found anything to document a medical illness.
But the patients always had the same complaints, always complained of fatigue, not sleeping, muscle aches and not being able to work (I am not saying that this is a description of many patients with fibromyalgia).
So your physician decided that there was nothing to this diagnosis because he/she could find none of the traditional signs of a disease, it responded to no treatments, and there was no progression to a measurable pathological state.
Now there are diagnostic criteria for fibromyalgia. The latest I can find is from the American College of Rheumatology 2010.
Widespread pain index score of 7 or more, and a symptom severity score of 5 or more. Or a different mix with lower WPI and higher SS score. So it’s kind of vague.
So let’s see if we can use these criteria to diagnose people with fibromyalgia.
So do you know of some people who complain about some of these things? I know… let’s see, pretty much everyone I know over the age of 40 has some of these complaints, and more of them the older they are. So these complaints are very common.
Are these complaints associated with other conditions? Poor circulation, obesity, osteoarthritis, rheumatoid arthritis, Lyme disease, AIDS, hypothyroidism, collagen vascular diseases, poor nutrition, sleep apnea syndrome, depression, cancer…etc. etc. So yes, these symptoms are very common in other diseases.
Are these symptoms subjective? Let’s say I have a viral illness and I’m out of work for a week, because I am too fatigued and “achy” to work. You have the same virus, but don’t miss a day. We both fall off our bikes. Our injuries look exactly the same.
You get up, go home, and put ice on it. I wait on the ground for an ambulance to take me to the ER. I miss working the next day. You show up. Did I “hurt” more than you did? So yes, all of these criteria are “subjective”. If you do the point tenderness test on me and every place you touch I say that pain is a “9”, is that real? How can you tell?
There is a blood test being evaluated for Fibromyalgia, the FM/a test. This tests for elevated cytokine levels in your blood. However, elevated cytokine levels can be found in everything from Autism to Zoster. They can be found in high levels in depressed and suicidal patients.
Any inflammatory disorder that activates the immune system will increase cytokine levels. If all other pathological conditions have been ruled out (could take years and 10s of thousands of dollars worth of tests) and this test shows that your cytokine levels are elevated, then your doctor can say you have an occult inflammatory condition in your body, Maybe it’s fibromyalgia. Maybe it’s a disease that will show up later.
I hope you can see why some doctors are skeptical of the diagnosis of fibromyalgia. Because the doctor can’t diagnose it. Only the patient can. And that can sometimes be misleading.
Disclaimer: This is not medical advice. This is a personal opinion based on the situation of a close one.
Like you have the flu constantly. Affecting your concentration and memory. And the pain itself is very distracting and tiring. Generally just feeling physically tired all the time. Sometimes worse than others.
Numerous fibromyalgia symptoms come and go. From hour to hour your symptoms change. Often ith little reason. Other symptoms can last for years.
And chronic pain can lead to clinical depression. The symptom of Fibromyalgia includes many symptoms that are common with depression. Sometimes being difficult to separate the symptoms of fibromyalgia and the symptoms of clinical depression.
For me, it makes work very difficult and many people are unable to work. Due to the physical symptoms and clouding of the mind. All the symptoms distract from activities.
Exercise needs to be limited and slowly increased as can be tolerated. Overexertion leads to significant increases in pain and physical and mental exhaustion.
Using medications can add to the confusion. It may be difficult to find the best balance of medications.
Most people with Fibromyalgia have a hard time getting a diagnosis and getting effective support from doctors. GPs will often misunderstand the symptoms. Usually, a diagnosis of arthritis or depression is made. And most of the correct diagnosis comes from rheumatologists.
They are the doctors that are likely to make the diagnosis. And in the case of a diagnosis of depression, a psychiatrist may be able to provide a better diagnosis. The GPs are improving and can now diagnose fibromyalgia better. Or refer a person to a rheumatologist or psychiatrist for a clear diagnosis.
Support groups are great. That is where people can better understand your situation. Even with very strange symptoms. It may be hard to explain to a doctor the feeling of ice or electricity running up and down your limb bones. But most people with fibromyalgia will recognize the terrible sensations.
The shooting pain in your bones, usually limbs, with the sensations of chills or electricity can be one of the most painful symptoms. Usually when your fibromyalgia is really bad.
Depression that may be caused by fibromyalgia also has bad effects on your thinking and concentration. If the mental symptoms are very bad a psychologist could be able to assess your level of functioning.
