IMPORTANT UPDATE (please read)
Since writing this post I have become more aware of the huge amount of symptomatic cross-over between Fibromyalgia and ME/CFS. While it is possible to have both of these illnesses, some treatments for Fibromyalgia are contraindicated for ME/CFS. This issue becomes even more complicated when you consider the high rate of misdiagnosis between these two pathologies, the fact that we do not yet have confirmation of the exact cause for either, and the fact that some research indicates that the two could even have similar underlying mechanisms.
If you have ME/CFS, suspect you may have ME/CFS, or experience an adverse reaction to any of the treatments discussed below, please proceed with extreme caution and consult an ME-informed medical professional. I acknowledge that such providers can be hard to find, and I recommend looking at Millions Missing, Emerge, or ME-Pedia for further information on how to educate providers and tackle the stigma assocated with this debilitating illness.
Eventually I would like to update this post with further information about this issue, and a reflection on how my personal experiences of Fibromyalgia treatments were likely coloured by undiagnosed ME/CFS, but unfortunately, I do not have the spoons right now. Please keep this mind while reading the article.
Content warning: suicidal ideation, medical negligence, medical gaslighting, trauma, grief, depression, depictions of medical symptoms.
Please note: This post will make reference to the pros and cons of certain treatments for Fibromyalgia. However, this is not medical advice. Please speak to your doctor.
Why do so many of us refer to Fibromyalgia as “The F Word?”
Well, because it is one of the most underrated and disparaged diagnoses of modern medicine, and yet for some, one of the most debilitating.
Although research shows that patients with Fibromyalgia have a significantly lower quality of life than the general population (on par with chronic health conditions such as Rheumatoid Arthritis), it continues to be written off by many medical professionals as psychosomatic or simply something that doesn’t exist at all.
Of my many diagnoses, Fibromyalgia is the one that I receive the least medical treatment for, and the one that elicits the least sympathy from doctors and laymen alike. However, it is also the condition that I feel is the least well under control after 9 months of full-time rehabilitation, and the one that imposes the greatest limits on my day to day activities.
Today, we will be discussing what exactly Fibromyalgia is, the diagnostic process (including limitations of the current diagnostic criteria), treatment protocols, and the harsh reality of living with this “controversial” diagnosis; with thoughts from Fibromyalgia veteran and advocate Melyssa Corrigan.
So, what the F is Fibromyalgia?
Previously Fibromyalgia was simply seen as a blanket term for any person who was experiencing chronic widespread pain without an obvious cause. Unfortunately, this attitude has persisted among some medical professionals even though it is now recognised as a unique disorder with specific criteria and symptoms.
Fibromyalgia is a disorder that causes widespread musculoskeletal pain, fatigue, sleep disturbances, digestive problems and cognitive difficulties. It is often accompanied by co-morbidities such as Dysautonomia, Migraine, Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome, Depression and Temporomandibular Disorder.
If you look on any Fibromyalgia forum you will also see anecdotal evidence of several other complaints such as numbness, tingling, muscular spasms, and a burning or itching sensation on the skin.
Although the exact mechanism that causes Fibromyalgia pain is unknown, it is currently believed to be a neurological disorder. Experts believe that it is due to the brain and spinal cord overproducing pain signals in response to normal stimuli.
This hypothesis lines up with the majority of patient’s experiences of Fibromyalgia. Many report experiencing pain in response to physical touch, exercise, psychological stress or even the rubbing of clothing against their skin. However, pain can also sometimes appear completely idiopathic.
The development of Fibromyalgia symptoms is often linked with severe trauma. This trauma could be either physical or psychological, ranging from a car accident, to a severe infection, to being the victim of abuse.
What the F is the Difference Between Primary and Secondary Fibromyalgia?
Some doctors still distinguish between primary and secondary Fibromyalgia. Primary Fibromyalgia being when symptoms present as entirely idiopathic and secondary being when symptoms appear to be the direct result of trauma. Among these doctors, secondary Fibromyalgia is generally seen as more severe, almost like a symptom of an underlying disorder (such as Ehlers-Danlos Syndrome or Rheumatoid Arthritis) rather than a separate diagnosis. Primary Fibromyalgia on the other hand is often brushed off as psychosomatic and/or blamed on genetic factors.
I am currently diagnosed with Primary Fibromyalgia even though my symptoms began after a severe sinus infection that required 6 courses of antibiotics AND around the same time that my level of Hypermobility suddenly escalated…
Dr Anne Dumolard, one of the world’s leading experts on Fibromyalgia explains that onset is most common when there has been a combination of psychological and physiological trauma over the course of a patient’s lifetime. For example, if a patient suffers from severe depression and then sustains an injury in a car crash OR if a patient has a chronic physical health condition and then experiences an emotionally traumatic event.
As I have never met ANYONE who has lead a completely trauma, injury and illness free life, I have serious doubts about whether there is really a difference between primary and secondary Fibromyalgia. Sadly, I’m not qualified to speculate on that…but there are some qualified people who agree with me, an example of which will be linked down below.
So, what the F happened to YOU?
Before we move on to how Fibromyalgia is diagnosed, I’d like to take a moment to tell you about my personal experience. I was not diagnosed until about three years after the first onset of my symptoms and this was largely due to my inability to articulate what was happening to me. I hope that by sharing my story I can make it easier for other people to recognise the early warning signs in themselves or their loved ones.
I had a flu-like illness in July 2017 which really knocked me around. It had come off the back of a few upsetting events in my personal life and a big flair up in my PMDD symptoms. When I finally felt like I had recovered (after about 6 weeks), I noticed that I had developed a strong resistance to exercise and other physical activities. I initially put this down to de-conditioning, but even once I was back to full fitness, I was experiencing strong pain my joints and muscles after exercise and physical tasks (such as climbing a flight of stairs).
A few months later, I started waking up in pain and with a heavy feeling in my body. At first it felt similar to the way in which one might feel the morning after a gruelling workout, so again, I ignored it. After about a year though, I was waking up in pain everyday and was having repeated sinus infections that were seemingly coming out of nowhere. I was also extremely fatigued and frequently waking up in bed or on the couch during the day with no memory of how I got there.
At this point I decided to check in with my GP. She did some basic blood work, saddled me with the label of post-viral fatigue, and told me that nothing could be done for me. She did not warn me of the dangers of post-viral fatigue turning into chronic fatigue syndrome if the patient keeps pushing past their physical limits during recovery, something which I now find very regrettable.
I continued to force myself to work long hours and my symptoms worsened to the point of barely being able to get out of bed on some days. It might seem crazy that I did not get a second opinion at this point, but keep in mind that I have been chronically ill with other conditions since childhood, and at this point in my life I was still dealing with the trauma of previous medical negligence and gaslighting and was very resistant to seeking medical attention.
This continued for another 18 months, by which point I had dug myself into a deep hole of denial about what was happening to me. It wasn’t until I had my first severe flare up in January of 2020 (after yet another sinus infection) that things changed. My pain became so bad that I couldn’t eat or sleep and was starting to entertain suicidal thoughts. I was fainting frequently and had to crawl to get up and down the stairs in my apartment.
After a few days of this nonsense, my fiancé threatened to take me to the emergency department if I didn’t agree to immediately phone my (new) doctor.
Fortunately, my level of distress was clear to my doctor over the phone and she gave me an immediate prescription for tramadol while we waited on further test results.
The penny finally dropped when I took the first capsule. My body went quiet. I realised I had been living with perpetual buzzing and burning sensations throughout my entire body for literal years. Even when I didn’t consider myself to be in a pain flair up, it had always there, simmering away in the background.
I knew then and there that my life was about to change. I could never go back to the way that things were now that my eyes had been opened. I had to get to the bottom of what the hell was going on inside of me.
I went back to the doctor shortly afterwards and spoke to her in more depth about what had been happening to me over the past couple of years. I also mentioned that I had been hypermobile since childhood, but had been having more and more frequent dislocations in the last few years. She told me that Hypermobility was sometimes linked to a family of connective tissues disorders which were associated with several comorbidities to do with the dysfunction of the autonomic nervous system. Furthermore, she told me that severe infections and increasing age were linked with a sudden worsening of these disorders.
A few referrals later and I was lead to diagnoses of Generalised Hypermobility Spectrum Disorder, Orthostatic Hypotension, Sinus Tachycardia and Fibromyalgia.
How the F do you diagnose Fibromyalgia?
The old diagnostic criteria for Fibromyalgia was fairly useless. The term was simply applied when a patient had persistent widespread pain (both above and below the waist and on both sides of the body) for at least three months with no other obvious cause. The potential for misdiagnosis here should be painfully obvious, and yet, I STILL SEE THIS LISTED ON AT LEAST A DOZEN SITES ABOUT FIBROMYALGIA.
The American College of Rheumatology (ACR) developed new guidelines in 1990. However, there were still some issues with this update.
The ACR proposed an examination of 18 different “trigger points” on the patient’s body. Pressure was applied to each point by a physician to guage if the patient experienced a feeling of tenderness in these areas. 11 out of 18 positive responses were required along with a history of widespread pain in at least three of the four quadrants of the body for a positive diagnosis.
The main criticism of these guidelines was the level of subjectivity involved in the evaluation of the “trigger points,” and the varying levels of pressure applied to them by different doctors. The 1990 guidelines also ignored a large number of other symptoms that are now officially recognised as features of Fibromyalgia.
In 2010, new criteria were added to include the patient self-reporting the extent to which they were bothered by symptoms such as fatigue, unrefreshing sleep, chest and abdominal pains, and cognitive difficulties.
The criteria was revised once more in 2016 with clarifications of certain terms and to assert that a diagnosis of Fibromyalgia could still be valid even if the patient had other pain related disorders. This was very important as it helped Fibromyalgia patients to continue to be diagnosed with their other co morbidities and ensured that patients with other disorders could still access information and treatments for Fibromyalgia.
Although this is a good start, there are multiple things that concern me about the current criteria. The first thing is that the trigger points do not include the hands and feet which are anecdotally some of the most painful areas for many patients. Secondly, many physicians continue to refer to the self-reported symptoms in the second half of the criteria as psychosomatic.
Finally, the criteria does not encourage physicians to address or even discuss any initial physical or emotional trauma that may be linked to the onset of symptoms. I hardly think is conducive to developing an effective, personalised treatment plan.
Fortunately, there may be further evidence on the horizon which could lead to a more specific diagnostic criteria for Fibromyalgia. For example, a small study was recently conducted in which mice were injected with the antibodies of Fibromyalgia patients. These mice had increased muscle weakness, nerve pain, and sensitivity to temperature compared to mice that were injected with the antibodies of healthy individuals. This strongly suggests the involvement of the immune system in Fibromyalgia, something which was previously undiscovered. (Further details linked below)
So, how the F do you treat Fibromyalgia?
Unfortunately, this is an F’ing hard question to answer for a number of reasons.
First of all, many doctors take the approach of treating the cause of Fibromyalgia (injuries, infections, psychological trauma etc.) first, which means that patients are often in very different places with their recovery by the time that they start Fibromyalgia specific treatment.
Secondly, Fibromyalgia symptoms and severity vary a lot from person to person, as do patient responses to treatment.
A combination of gentle exercise, physiotherapy and hydrotherapy are usually the first treatments recommended to patients after this. While these treatments certainly have merit, they often fall down when you take into account the high rate at which patients have comorbidities such as Ehlers-Danlos Syndrome or Chronic Fatigue Syndrome which can make certain exercises difficult or even dangerous.
It is very important to be monitored by a medical professional who is not only knowledgeable about Fibromyalgia but who is also willing to listen to your unique needs and the way your body responds to activities when starting a rehabilitative exercise program.
I have personally found hydrotherapy to be helpful for my balance and core strength. I have also found physiotherapy to be very helpful for stabilising my hypermobile joints. However, I have not found any forms of exercise that help with the pain, cramps and fatigue associated with Fibromyalgia. If anything, pushing my limits with exercise often exacerbates my symptoms further and I have spoken to many others who feel the same way.
Medication is usually offered in conjunction with exercise programs. This is a difficult part of treatment to define because the line is often blurred between which medications are being prescribed for Fibromyalgia and which are being prescribed for co-morbidities.
For example, I was originally given Duloxetine for PMDD, but found that it greatly reduced my Fibromyalgia pain. (This is a common experience, Duloxetine helps seretonin and nonadrenaline to circulate in the brain for longer without being reabsorbed into the nerve cells, effectively overriding the excess pain signals that are fired off by the brain in Fibromyalgia patients. Duloxetine is now being increasingly prescribed for other neuropathic pain conditions such as diabetic neuropathy.)
Similarly, I have found that taking L-Carnitine has improved my muscle strength and energy levels, whilst taking CBD oil helps with joint pain and muscle spasms. However, I have no way of knowing if these medications are specifically tackling the symptoms of my Fibromyalgia, or the symptoms of my other pain causing conditions.
Patients may also take NSAIDS, opiates, muscle relaxants, SSRI’s and many other forms of pain relief. I have decided against going into the specific mechanisms of other medications in this post, as patient responses are highly individual. Many of us spend months, if not years trialing different medications, trying to find something that works for us.
Lifestyle modifications are also an inevitable part of adapting to life with Fibromyalgia. At first, this term really irritated me, as I felt that it was nothing more than a passive-aggressive way of telling patients to eat healthy and get enough sleep. However, with time I realised that what it really meant was modifying your life to work with your illness rather than against it.
A big part of this for many patients is learning Pacing. Pacing is an activity management strategy that was developed for Chronic Fatigue Syndrome patients in the 1980s. It involves establishing a baseline level of activity that does not exacerbate symptoms and then very gradually increasing activity levels with frequent short rest breaks during the day. Pacing is highly individual and takes time to learn. Action for M.E has an excellent guide to pacing which I will link below.
Please note: Pacing is not the same as Graded Exercise Therapy (GET) from the 2010 PACE trial; a study which has been widely criticised and is linked to the deterioration of a large number of it’s participants.
Sadly, pacing often includes reducing (or completely stopping) working hours, changing career or field of study, and maybe even eliminating certain hobbies or household activities from the patient’s life.
Many patients take up the use of adaptive equipment to help them stay active in their lives. This could include the use of a cane, crutches or wheelchair during travel. It could also include the use of special equipment in the home such as a shower chair, lap desk, ergonomic kitchen tools, body pillows and many more.
The need to manage food intolerances and digestive issues is also common. Many people with Fibromyalgia develop an inability to digest certain foods or food groups, but which foods exactly vary a lot from person to person. A lot of time and energy often goes into experimentation and dietician/allergist consultations to try and get to the bottom of things (don’t tell us to just cut out grains because it worked for your friend, it really annoys us!).
Finally, many Fibromyalgia patients feel gaslit by doctors at one point or another and so are understandably hesitant about being referred to psychological services. However, these can be very helpful in different ways:
1. Receiving support to cope with life’s changes. Patients may have had to leave their job, they may not be able to contribute to their household as much as they would like, they may have had to give up all foods that they love…of course they need and deserve support and advice to get them through all of this!
2. Managing stress. This does not necessarily mean that patients have poorer coping skills than other people, but that stress may physically impact them more than other people due to their illness. A therapist can help patients develop strategies to reduce and manage stress as well as help them gain a deeper level of self-awareness about which triggers (psychological or otherwise) could be aggravating symptoms.
3. Working through grief and trauma. Being diagnosed with an invisible illness is often a very traumatic experience. Patients often deal with chronic symptoms for months or years before they receive any treatment. Many of us lose faith in the medical system during this process and may even develop a fear of seeking medical care if we have had negative experiences. Sadly, we may also see the true colours of friends or family members who decide to show us their real values when we are no longer “productive” members of society. We owe it to ourselves to work through these issues at our own pace so that we can make new social connections and continue to seek medical care without anxiety. We also deserve support to re-discover our identity and self-love after our lives have taken an unexpected turn like this.
This whole thing sounds like a mess….what the F can I do about it?
I was being plagued by this very question when I stumbled across Mrs Q’s Pretty in Pain Podcast where the wonderful Melyssa Corrigan (known to many as Holyfibro) was being interviewed. After hearing her speak and realising how similar her story was to my own, I just knew that I had to talk her about the Fibromyalgia community and what we and our allies could do to help improve the future for other chronic illness warriors.
The main themes that arose were finding the courage to unapologetically share our stories and how we are affected by this disorder, taking the time to work through the grief and trauma associated with becoming disabled and navigating the (sometimes) inadequate medical system, and finally, finding a balance between accepting that not everyone is capable of understanding our situation, but still pushing for awareness and acceptance of our community where possible. Although we are far from having all the answers, I thought that sharing the highlights of our discussion would be the perfect way to end today’s post.
J: Hi Melyssa, thanks so much for agreeing to share your thoughts on Fibromyalgia with me! You recently published your incredible essay The Beauty in Being Dismantled and I thought it was very interesting when you said that you didn’t truly understand your own story until you started writing it down. I feel like up until a year or so ago I spent a lot of energy unconsciously re-shaping my life story into the narrative that I thought it was supposed to have, rather than embracing my true, whole self. By contrast, can you please tell me more about what is what like to write the story of your life in such a raw and honest way?
M: I have always felt that something was “wrong” with me – (I have) been searching bookstores since I was a kid trying to find answers. It wasn’t until I worked through (and worked through, annnnnd worked through) The Beauty in Being Dismantled that everything became clear. I could link the dots, link the experiences, link the shame. I understood, for the first time, that I have always been broken on some level, physically. Many situations I felt ashamed of were not my fault. I had a reason. I had a REASON.
J: You mentioned that at your lowest point (before you had clarity about your diagnoses) that you thought you could be dying. How has that impacted your life going forward?
M: I honestly was just waiting for the diagnosis that told me I had weeks to live. I felt that sick. I’ve always lived with one foot on Earth and the other in the sky, in the sense that I know death is imminent. I know to be aware of moments that are precious. But when that sick, it reinforces the fact that simply having your basic needs met is everything and enough and a privilege.
J: Is there anything you wish your loved ones would have done differently to support you during the low points of your chronic illness journey?
M: Personally, no. People can only help you when you let them in. If you let them in and they don’t want to see, believe, acknowledge or accept your truth, then you have two choices: continue to engage and lose your mind or FIND your people. I am astounded at the depth and breadth of the chronic illness community online. Especially Instagram. I only joined last month and I’ve never felt more understood.
J: So you were eventually diagnosed with (among other things) Fibromyalgia. Coming from Australia, I had never even heard of Fibromyalgia before I was diagnosed. It seems like in the US there’s a lot more awareness, but unfortunately also a huge stigma connected to Fibromyalgia. Do you have an opinion on why that is?
M: I am slowly diving into this topic and I am sure there are many, many reasons I am unaware of. From my personal experience, in the simplest of terms, I think they just don’t get it. And I think that’s because it’s not something they are taught to get. And I think the system does not allow them the time it takes to dig into and diagnose a chronic illness. So we are viewed as something they’d like to avoid.
J: I see so much misinformation about Fibromyalgia online that makes me want to gouge my eyes out! As two people who are writers and active on social media, is there anything that you think we can do to help combat this?
M: SPEAK OUR TRUTHS AND HELP OTHERS SPEAK THEIRS!!!
J: Finally, what advice would you give to someone like me who is in the process of trying to turn their life around after finally coming to terms with the fact that they can’t keep going the way they have been?
M: Allow yourself, first and foremost, to fully grieve the life you thought you were going to have. We are all dealt blows along the way. Feel the blow. Learn to live with the blow. The longer you fight it, the longer your body is in turmoil. I don’t mean give up. I mean choose to live, when ready, as you are, where you stand.
You can follow Melyssa on her Instagram @holyfibro for more of her wisdom.
Melyssa, thank you again for taking the time to discuss this difficult topic with me, you speak with such empathy and generosity and are a true asset to the chronic illness community.
Thank you for making it to the end of this supersized post! Despite it’s length, it’s still been impossible to hit on all aspects of Fibromyalgia and represent everyone’s experiences. If you feel something is missing or there is idea you would like to elaborate more on, I encourage you to do so in the comments!
Some of the images in today’s post were courtesy of Unsplash.
PLoS one is an example of a study that reports a significantly lower quality of life in Fibromyalgia patients. I favour this example because it acknowledges the psychological impact of a Fibromyalgia without making this the scapegoat for its overall debilitating nature.
The Mayo Clinic provides a good, short overview of Fibromyalgia and it’s possible causes.
Dr Anne Dumolard’s Book Comprendre et Reconnaître la fibromyalgie is an amazing read for my Francophone friends. It covers all aspects of Fibromyalgia and provides excellent advice for patients. Sadly there is currently no English translation available.
The Journal of Rheumatology agrees with me that Primary and Secondary Fibromyalgia have identical symptoms and are probably the same thing…
ScienceAlert’s summary of the study involving mice injected with human antibodies
London Pain Clinic ‘s explanation of the use of Duloxetine in the treatment of Neuropathic pain
Action for M.E ‘s guide to pacing
WebMD has a good explanation of the link between Fibromyalgia and food intolerances and provides some basic tips on how to get started with finding the right diet for you.
ME-pedia ‘s explanation and criticism of the PACE trial.