Can I recover from fibromyalgia?
I recently gave a talk to a local fibromyalgia support group. Part of my aim was to give the group members hope that it is possible to recover from fibromyalgia. I decided to write up my talk for this blog, as I’m sure lots of other people are asking the same question: “Can I recover from fibromyalgia?”
In my experience, people with a diagnosis of fibromyalgia have often encountered negative attitudes from professionals, members of the public and even friends and family. Some people have had to battle to get a diagnosis, some have been led to believe that fibromyalgia is not a ‘real’ illness, and others have been told to “pull it together” and treated as though their pain was somehow being caused by an emotional weakness. For this reason, any professional who thinks they have answers to offer people with fibromyalgia needs to do so with a big dose of humility. Not only is fibromyalgia very real, but many people who live with this diagnosis are true survivors – survivors of the pain itself, but also often survivors of traumatic experiences or abuse.
From an early age, I used to get headaches and stomach aches. In my teens, I developed more bizarre symptoms: things like itching all over, nausea, extreme fatigue, a crushing sensation in my temples, sensitivity to strong smells, and not being able to stand the feel of my clothes on my body. I never received a diagnosis; in fact, the doctor barely acknowledged my symptoms.
Because of this, I developed a deep sense of being labelled a ‘hypochondriac’, even though it seemed to me that I must have a chronic fatigue/ME-type illness.
When I got to university, many of my symptoms suddenly resolved within weeks of arriving. I thought this must have been because all my previous symptoms were caused by oversleeping! I now think that it was much more to do with leaving behind some emotional stresses (such as bullying), as well as gaining my independence and feeling like I had truly become an adult.
After this initial sudden recovery, some of my symptoms crept back, and by the time I finished university, I used to get terrible headaches, which persisted throughout my twenties. I would take ibuprofen every day, and when I started to become worried about the impact this might be having on my insides, I went to see the doctor.
The doctor prescribed amitriptyline (an antidepressant which is sometimes used in chronic pain), which had no effect on the pain, but did heavily sedate me. I was then referred to the pain clinic, where they advised me to take vitamin D supplements and suggested that I read a website about chronic pain. I glanced at the site, but it didn’t appear to have any useful advice, so I dismissed it.
In my continued search for a solution, I self-referred to my employer’s occupational health physiotherapist, who tried acupuncture, but again, no effect.
I figured I was going to have to live with the pain.
By my thirties, on top of my headaches, I developed IBS.
I was so miserable with bloating, spasms and fatigue that I hardly ever wanted to go out in the evenings or exercise. I cut foods out to try to help, but my symptoms got worse, and my diet became more and more restricted. While the doctor was kind, no solutions were suggested.
So what’s this got to do with recovery from fibromyalgia?
The more I have found out about chronic (long-term) pain and recovery, the more I have begun to see all chronic pain as having the a shared root cause. It seems to me that chronic pain is on a spectrum, with fibromyalgia at the most severe end. This means that people can recover from fibromyalgia in much the same way as I recovered from headaches and IBS.
My recovery started by reading a book called Think Away Your Pain by Dr David Schechter, which a friend encouraged me to read. If you have fibromyalgia, you may have a sense of how I felt about this book title! Nonetheless, I read it, and was surprised at how much it seemed to make sense. Because of this, I decided to follow the advice in the book, figuring that I had nothing to lose.
The main advice seemed to be to write a journal, focusing on expressing hidden emotions.
Almost as soon as I started doing this, my symptoms started to subside. I can still remember the triumphant day when I woke up with a severe headache, decided it wasn’t going to beat me, and got writing. Within an hour, the headache had gone.
I had never previously had a headache subside without taking painkillers.
You are probably asking yourself how journalling could help you to recover from fibromyalgia, especially if you have already tried all sorts of treatments with no success.
Recovery doesn’t come through journalling alone, but it can be a very helpful tool along the way. In order to understand why, it helps to know a bit about the science of how our bodies respond to stress.
The science of pain is complex, but there are some key concepts which can really help us begin to understand what might be going on in our bodies when we experience long-term pain.
Fibromyalgia research and the autonomic nervous system
One person who has carefully studied the scientific research about fibromyalgia is Dan Neuffer, author of the book CFS Unravelled. Dan isn’t a professor or a doctor: he’s someone with a science degree who has himself lived with debilitating fibromyalgia. He found himself getting frustrated that no-one could tell him why he was unwell or how to get better, so he looked into the fibromyalgia research in order to try to figure out how he could get well.
Dan came to some fascinating conclusions.
Dan noticed that all of the research, in spite of its very different findings about fibromyalgia, seemed to point to a single root cause: dysfunction of the autonomic nervous system, or ANS. Dan ultimately used this knowledge to get better. In this respect, fibromyalgia has a lot in common with other forms of chronic pain.
Dan Neuffer found that there is a way to put right the problems with the autonomic nervous system, and he used this to recover from fibromyalgia.
The autonomic nervous system is the bit of our brain that controls things like breathing without us having to think about it. It also regulates two crucial human responses: “fight, flight, freeze” and “rest and repair”.
Fight, flight, freeze
You may well be familiar with the idea of the “fight, flight, freeze” response. It’s our body’s way of responding to danger of some kind. Interestingly, it happens whether or not the danger is physical, emotional, or both.
To illustrate this, we can consider two contrasting examples.
Firstly, imagine that you are crossing the road one day.
Suddenly a car comes speeding round the corner.
Before you even know what’s happening, your heart starts to pound, the blood rushes to your face, and you feel a surge of emotion, perhaps fear.
These changes in your body propel you to run for your life and hopefully reach the kerb in time.
However, in your hurry, you stumble and hit the ground, leading to cuts, bruises and a sprained ankle.
That evening, you tell others about your near miss and how angry you felt at the car for speeding in a built-up area. Mixed in with the relief, you feel run down, tired, swollen and in need of a sugary cup of tea.
You can probably imagine this situation quite easily. Notice how the body’s response to this situation is equally emotional and physical.
Contrast this scenario with a second example.
You hate your job. Your boss is a bully and your colleagues aren’t supportive either. One day, your boss comes up to you in front of the whole room and says “can I have a word?”.
As you get up and follow her to her office, a familiar response kicks in. Your heart starts to pound, the blood rushes to your face, and you feel a surge of emotion, perhaps fear.
As you boss criticises you yet again, you feel some other strong emotions; maybe shame, maybe resentment, maybe rage. Nonetheless, you don’t express these emotions; you listen to what she has to say and quietly return to your desk, counting down the hours until you can go home.
You can hardly focus on your work for the rest of the day; your thoughts and emotions are all over the place.
In this situation, the threat from your boss represents an emotional danger, but just like in the first situation, your response was physical and emotional: this is the nature of “fight, flight, freeze”.
In the first situation, you fled to the kerb. But in the second situation, you couldn’t fight (unless you wanted to be dismissed for gross misconduct); you couldn’t flee (same situation), and most likely, you wouldn’t freeze either.
These two scenarios help to demonstrate the autonomic nervous system in action.
In the first situation (nearly getting run over), the autonomic nervous system triggered a neat cycle. In the moment of danger, you experienced a surge of certain chemicals, like adrenaline and cortisol. These spurred you into action and protected your body from the anticipated attack. Then you headed home in relief. Your autonomic nervous system switched off “fight, flight, freeze” and triggered “rest and repair”. This encouraged you to take it easy, have a cup of sugary tea, and generally lay low for a bit until you were feeling better.
In the second situation with the nightmare boss, the cycle is interrupted. There is still a surge of chemicals, but there is no fight, no flight, and no freeze. Added to this, you face this kind of emotional danger day in, day out. This is stress. In your stressed state, your body may well not trigger the rest and repair response. There is no opportunity to hide away with a cup of tea to rest anyway; you have to be back to face it all again tomorrow (or even in five minutes’ time when you pick up on the fact that your colleagues are whispering about you).
Fibromyalgia and stress
The autonomic nervous system works well in situations where we are in occasional physical danger. However, in modern life, we may be more likely to experience emotional dangers, the type of situations that cause stress.
It’s a well known fact that many people live with chronic stress. Over time, this sends our autonomic nervous system out of balance, leading to a regular low dose of stress chemicals being released into our bloodstream. This is especially the case or people who experienced an abusive or stressful childhood.
This has a knock-on effect to other systems in the body.
Take breathing, for example. It is very common for people in the West to breathe in a quick, shallow way. This affects the speed and rhythm of our heartbeat, which in turn affects every other bodily system.
What about fatigue? Cortisol (a stress chemical) is designed to regulate our sleep patterns. It should surge and taper down at different times of the day, giving us a spur of energy to get up in the morning, and causing us to feel sleepy at night. However, if we have a constant low dose without these peaks and troughs, it can lead to constant fatigue, never truly feeling alert.
Perhaps you can begin to see how this knock-on effect might explain some of the symptoms of fibromyalgia. This is the premise that Dan Neuffer outlines in his book.
Stress knocks the autonomic nervous system out of balance. This chain of events wreaks havoc on all of our bodily systems, which can set us up for pain. Once pain takes hold, we are likely to feel a range of negative emotions in response to the pain itself. Pain can make us angry, frustrated and low. These emotions themselves trigger our fight, flight freeze response, because our body perceives that we are in danger. If we continue to experience stress, our fight, flight, freeze response goes into overdrive, and the negative cycle continues or gets worse. In this way, stress is a huge factor behind fibromyalgia.
Fibromyalgia and the role of emotions
At this point, you may be able to see how emotions play a role in fibromyalgia.
On the other hand, you may have a strong reaction to this idea. I used to be very resistant to the idea that addressing my emotions could help my physical pain. It seemed to me that anyone who suggested looking at emotions was implying that my pain was just an emotional weakness, and that my symptoms weren’t real.
However, I can now recognise that although my symptoms were very real, there was an emotional driver behind my physical pain.
Just as stress is an emotional and physical response, so is pain.
One research study helps to illustrate this powerfully. Researchers looked at people who were experiencing chronic back pain. They took brain scans called fMRI scans of the people who had long-term back pain, and compared them to fMRI scans of people who were experiencing acute, short-term pain.
The brain scans of the people experiencing acute pain “lit up” the circuits which are linked to pain receptors in the body. However, the brain scans of the people experiencing chronic pain lit up emotional circuits, not pain receptor circuits.
This helps to show just how deeply long-term pain is related to emotions.
If this is true, what do we do about it?
Processing avoided emotions
The advice I received when I read Think Away Your Pain was that I needed to acknowledge difficult emotions, especially those from the past; emotions I didn’t even want to admit to feeling. Things like rage, shame and bitterness. The rationale was that avoided emotions cause our unconscious mind to continually think we are in danger, triggering the fight, flight, freeze response.
Recently, I attended a talk by psychiatrist Dr Rob Waller, of The Mind and Soul Foundation. He gave an illustration which helped me to understand why this might be.
Rob explained that our brains have a type of filing system for emotional memories, which we can liken to an index card system. He said that in order to ‘file’ our memories, we have to examine them, decide where they need to go, and then file them in the correct space.
Rob said that when we have unpleasant emotional memories, we have a tendency to try to protect ourselves by avoiding them instead of filing them. He likened this to wrapping the index card around with bubble wrap and brown paper. Rob described how this over-sized package bumps around in our brains, causing distress. He said that in order to deal with the memory, we need to unwrap the layers of wrapping, look at the index card and acknowledge it. Then the brain can file it away and it stops causing distress.
Some of us have more of a tendency than others to avoid difficult emotions, because we have more of a need to protect ourselves.
Perhaps we are keen to please others and therefore find it intolerable to acknowledge an unkind thought towards someone else.
Perhaps when we were children, we were given the message that we had to be perfect, that any mistake would be punished.
Perhaps we have grown up with a rigid religious background which has given us the impression that it is sinful or evil to ever have negative emotions.
Perhaps we live with shame because of what we have been through, and feel that if our real emotions were to surface, we would not be able to cope.
The reality is that everyone experiences unpleasant and unpalatable emotions. It is a universal human experience. Avoidance of our emotions can seem like a good strategy; it seems protective.
But if we do not address these emotions, they will continue to bubble away under the surface: maybe in the form of anxious thoughts; maybe in the form of disturbed sleep; maybe in the form of pain.
If we do not deal with the emotions, we may find our brains shouting more and more loudly, amplifying the pain to try to get us to take notice.
It is important to say that acknowledging our unpleasant emotions does not mean we have to act on unkind or hurtful thoughts, or even tell other people how we feel. But we do need to acknowledge that we feel these things, and process them in order to be able to move on.
So, to summarise what we have covered so far:
Stress triggers our natural fight, flight, freeze response. In our modern lives, we can experience stress so frequently, that this response becomes over-sensitive, leading to a constant low-dose release of stress chemicals. This problem is even more pronounced in people who have experienced abuse or trauma, particularly in childhood. These chemicals can put our body’s systems into chaos, leading to pain and other problems like fatigue and sensitivity to chemicals.
Chronic pain is deeply tied to emotions. Unresolved or unacknowledged emotions trigger an ongoing danger alert message. Our brains will then try different methods to try to let us know that there is something wrong, including sometimes physical pain. We have to acknowledge and process the emotions to allow our brains to switch off the pain.
There is one more piece of the jigsaw which I want to share and it relates to our brain’s process of creating neural pathways.
Our brains love to automate things.
In modern society, we have automated as many everyday tasks as possible.
Shopping online? Sign in and pay with one click.
Bills to pay? Set up a direct debit.
Want your house to be warm and welcoming when you get home? Set the heating and lighting remotely via an app.
It’s not surprising that humans have come up with so many ways of automating things, because our brains have been doing this forever. Setting up automatic responses is a way to free up our brains to focus on other things.
Consider it this way.
Whenever we learn a new skill, it takes a lot of effort initially. But if we keep practising, it becomes second nature.
How is this the case? As we practice the new skill, our brains set up an automatic process, otherwise called a neural pathway. Over time, we find that we can do the new thing with very little thought.
This can be very useful, but at times, it is unwanted. Take, for example, biting your nails. Over time, nail-biting becomes a deeply ingrained automatic process. If we want to address the habit, it takes a concerted, consistent effort. However, if we stick with it, we will create a new automatic process, one in which we don’t bite our nails.
The same is true of pain. Chronic pain is automatic pain. Our brains have set up a neural pathway and pain becomes the default.
It takes an effort to reverse the automatic process but it’s totally possible! We can teach our brain that we no longer want a default pain setting, and tell it to switch the pain off. This is just as true for severe and widespread pain like fibromyalgia as it is for localised pain like knee pain.
At ACACIA Freedom from Pain, we use the SIRPA approach to teach people how to switch off pain.
What is the SIRPA approach?
It’s essentially a toolkit to help you re-tune your brain so that it stops automating pain.
We can help you using the SIRPA approach
Firstly, we help you learn about what is causing your pain. Once you’re informed, you’re in a much better place to do something about it.
Secondly, we provide you with SIRPA techniques which help you find ways to control the fight, flight, freeze response. We help you identify and deal with stresses in your life, and enable you to find coping strategies for dealing with stress in the future.
We provide you with support to work with difficult emotions. SIRPA techniques enable you to find ways to uncover and deal with the hidden, unpleasant emotions which may be triggering pain. (Note that depending on your life experiences, your mental health and your personality, you might need or prefer to get additional help to explore these emotions in a safe way, by seeing a trained counsellor or psychotherapist who understands the link between emotions and pain).
Finally, we provide you with the help you need to encourage your brain to create new neural pathways; to turn off the automatic pain response. Using the SIRPA approach, we can support you to find ways to give your brain the message that pain is no longer required and can be safely turned off.
In this way, you can recover from fibromyalgia.
If you would like to find out more about how the SIRPA approach, you can do one of the following:
1. Read Chronic Pain: Your Key to Recovery by Georgie Oldfield, the founder of SIRPA. This book goes into a lot more detail about the causes of pain. It also contains a selection of SIRPA tools you can use to work towards recovery by yourself.
2. Follow the SIRPA Online Recovery Programme online at your own pace (this is an affiliate link – if you access the Online Recovery Programme by clicking here, I will receive a commission).
3. Get one-to-one help from ACACIA Freedom from Pain. If trying to get better on your own sounds overwhelming, we can help. We will support you with every step of your recovery, providing the encouragement you need to get better. We will carry out a full assessment in order to understand how fibromyalgia uniquely affects you, and we will help you throughout your recovery by listening to you and providing guidance at a pace which works for you. We will provide email support in between sessions (included in the cost) so that you know there is always someone to talk to if you experience a set back or just have a question you would like to ask.