The Key For Fibromyalgia/ME/CFS/POTS/MCS Recovery
As I write this, I wonder if this is perhaps my most important blog for people experiencing ME/CFS, Fibromyalgia, POTS and MCS to date!?
In a recent recovery snippet, I spoke about the problem with overwhelm of information when it comes to ME/CFS/Fibromyalgia. And it made me reflect on my own efforts to help the wider ME/CFS/Fibromyalgia community including publishing CFS Unravelled 3.5 years ago.
It has been wonderful to get so much positive feedback about CFS Unravelled over the years. Much of it has been about appreciating the detail on how the dysfunctions we experienced in Fibromyalgia/ME/CFS occur.
But occasionally, even my staunchest followers (dare I say fans), suddenly see a post or see me share a recovery story of someone who used a particular approach they don’t like, and express disappointment. Whilst I may or may not agree with some approaches, in the end what really counts is when something works for someone. So it’s not so much about whether we agree with their approach, but rather about understanding WHY it worked for that person.
The real problem is that despite my summarising comments in CFS Unravelled, because there is so much information, and because inevitably we always focus on and filter information according to our own interest, the message sometimes get lost. So here is my effort to bring clarity to the whole message behind the ME/CFS/Fibromyalgia/POTS/MCS pathogenesis and the recovery framework:
The Single Dysfunction We Must Focus On For ME/CFS/Fibromyalgia/POTS/MCS Recovery!
My message is this – ME/CFS/Fibromyalgia/POTS/MCS is a one illness, with a huge list of dysfunctions and ways symptoms are created, and how most of this happens is understood!
HOWEVER, treating these dysfunctions whilst helpful, in isolation rarely produces lasting results, let alone a recovery from the illness.
When I was ill, one of my biggest frustration when seeing physicians and alternative practitioners was that whilst their treatments addressed problems, they never answered me WHY these problems were occurring.
And whilst some of these dysfunctions perpetuate in their own right, or are triggered by other dysfunctions, the whole point of CFS Unravelled was that SOMETHING has to be creating all these problems in the first place. And in the book I explain how I came to the inevitable conclusion, that the Autonomic Nervous System (ANS) is that something and how neuroplasticity is central to recovery from the illness.
How Does ANS Dysfunction Impact How We Approach Recovery?
Sometimes metaphors are a good way for us to get our head around things. I often share this one about ME/CFS/Fibromyalgia/POTS/MCS recovery:
Imagine you come home, and your kitchen is flooded with water. What do you do?
Well, it’s only natural to clean it up – wipe it up, mop it up, dry it – yes? THEN WHAT?
Do you just say, OK that’s fixed?
The next day you come home, you see the kitchen floor is covered in water again. Mop it up again?
What about the next day? The day after that?
OBVIOUSLY, we don’t just clean up the mess without finding out what is wrong. Is there a broken pipe? A leak in the roof? Some other obvious SOURCE OF THE PROBLEM?
I tell this little metaphor, because whilst it seems completely obvious that in life we look for a reason for our problems, it seems in the health world that we just focus on fixing it a lot of the time, which in my view is not logical. For example:
“Your adrenals are low – here is something to boost your adrenals.”
“Your thyroid is low, here is something to increase your thyroid function.”
“Your salt levels are super low – start super increasing your salt intake.”
“Your gut isn’t coping, here is something to help with that.”
“You can’t sleep, do this.”
ETC. ETC. ETC. (lets face it, I could fill pages with that train of thought)
Surely, the first question has to be WHY these problems are occurring, rather than just how to ‘fix’ them. Because only once you address the root problem (broken pipe or leak in the roof) that is creating the symptoms (The puddle on the kitchen floor), are you really going to make a lasting change - right?
Hence my repeated message that I have been working so hard to make clear to others seeking recovery from this syndrome:
TREAT THE CAUSE, NOT JUST THE CONSEQUENCES!
Now, notice I said, not JUST the consequences. Because of course, (returning to our metaphor), if you realised that the pipe under the sink was leaking water, surely besides fixing the pipe, you would also replace the swollen cupboard doors that no longer shut. And you would ensure that the carpet in the adjoining room is dried out as well as the kitchen tiles. The water marks on the skirting boards are addressed and so on.
How ANS function normalises for recovery from ME/CFS/Fibromyalgia/POTS/MCS:
If you have been listening to recovery interviews, then perhaps you have glimpsed some common themes and approaches. Heard about common physical treatments, common mind/body approaches but also common changes in terms of how people look at the illness and how they approach life. So how does that fit together?
Well, let’s start by stating the obvious – the Autonomic Nervous System is in the brain!
And of course, anyone who has experienced chronic pain (research has shown that the ongoing pain in fibromyalgia is primarily caused by central sensitisation where the brain experiences pain more strongly than in normal healthy people), brain fog, irritability, mood swings and sensitivity to lights, sounds and touch, can clearly see that there are issues in how the brain functions.
So clearly, that means we need to focus on changing how the brain functions! You might even ask, is that even possible?
Neuroplasticity, the Key to recovery from ME/CFS/Fibromyalgia/POTS/MCS
Even though most physicians trained last century were emphatically told that the brain is fixed by the time we reach adulthood, wonderful research scientists like Dr Michael Merzenich have proven that this is not the case and opened up the science on neuroplasticity. Neuroplasticity, meaning that the brain is plastic, that it has the ability to reorganize itself by forming new neural connections throughout life, and pruning old ones no longer used. Neuroplasticity allows nerve cells in our brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment.
In other words, our brain can unlearn how to feel excessive pain. Our brain can unlearn to react inappropriately to stimulus, like lights, smells, sounds and even physical stressors like low blood sugar, poor gut function and so on. Of course, inappropriate responses to psychological stressors can also be retrained, but this has been long-known and much more acceptable in the field of psychology.
So if we want to effect change in how the brain works, if we want to affect neuroplasticity for ME/CFS/Fibromyalgia/POTS/MCS, we have to do BRAIN TRAINING. But what does that mean?
Well, most people think of brain training as something that is mental. And of course, that is the most direct route. People train their brain to remember things, to be able to do special things like computations, or respond faster like you might see in a fighter pilot or athlete. But brain training for healing as opposed to performance can take multiple forms.
A good example of this is stroke victims, where a part of the brain stops working leaving them unable to perform physical activities like walking or speaking. The solution? BRAIN TRAINING! Their brain training is usually done with a physical therapist, where they re-learn to move their legs. It’s a combination of physical and mental efforts and feedback. So not only is it about attempting to engage in movement with our mind, but also the feedback from our body. So by someone moving the body for the stroke-affected person, their brain is being trained to refire the appropriate nerves to engage those muscles. And once they are able to somewhat engage their muscles with their mind, the learning can accelerate.
In ME/CFS/Fibromyalgia, the issues are of course quite different than in a person with a stroke. It is more about dysfunction than injury per se. But the same lessons and opportunities to retrain the brain still apply. For example, pain psychologists have been using the insights gained from researchers for many years now, to help tune down excessive chronic pain for people like burn victims in hospitals.
But whilst it’s my absolute conviction that all people experiencing ME/CFS/Fibromyalgia/POTS/CFIDS/MCS/EMHS all share the same root ANS dysfunction, we must recognise that there is still a great deal of variation, not just in terms of the secondary dysfunctions and symptoms, but also in the way the illness is triggered.
And hence the need for a multi-lateral approach where your brain training is customised to your own experience and preference, but where you also support and treat severe physical imbalances and dysfunctions to assist with recovery and reduce the pressure on the ANS. In other words;
Recovery from ME/CFS/Fibromyalgia/POTS/MCS is always an individual process, not some magic cure!
If you wish to learn more about the dynamics of the illness and how recovery happens, you can watch the free introductory portion of the ANS REWIRE program by requesting the lessons here.
As always, feel free to share your thoughts below this blog.
Here are some images for sharing on social media:
Does this mean you can train your body not to slip into the sympathetic nervous system. I’m not sure what triggers it.
Hi Jan – there are a range of triggers, physiolgocial, neurological and psychological in nature (like foods you eat, exercise you do and even mental stress like noisy places or smells etc). Indeed it is about retraining the nervous system to react normally to these. We explain how this works in detail in the introductory video series which consists of 4 videos. You can request these here, they are completely free! 🙂
Even though I was a nurse practitioner and could read and understand all the research, I still couldn’t put it all together until I took Dan’s ANS Rewire program.
Doing the protocol–dietary changes, rest, destressing and rewiring the nervous system–I found insights that helped me start to heal and continue to get stronger. I’ve rewired the fibro pain and the total, mind-numbing exhaustion that I felt for a decade is gone.
I have no words to adequately thank Dan for helping me regain my life.
Thanks for your feedback and kind comment. 🙂
Indeed it’s not just about understanding the dynamics, but also about putting it into context in terms of actionable steps. It’s so easy to get lost in the sheer volume of information which is why I wrote the blog here to help readers ensure they get the main message!
How do we know you are not just advertising for him? You have any proof of you being sick before and healthy now?
Looks like he..she..it didnt want to reply to that robin..😊😂
What would you like me to say? The old ‘if you recovered you didn’t have the illness’ is a bit wearing and old hat. I have been publishing interviews with people who recovered for nearly 10 years – was kind of hoping we are getting past this sort of thing.
How do we know that you’re not some sleazy troll that comes to peoples websites to try to tear people down who are trying their best to recover from devastating illnesses and who want to express their appreciation for help they received? Troll.
Thanks for your reply to mine. Your blog regarding the brain’s connection in all of this is a very good one. Some of my worst days have occurred after big gatherings or even going down town. Over-stimulation is a problem. I’m working with someone to help with some of that re-training of the brain. That and the Paleo diet are helping. -Elaine
Hi Dan, thanks for making such a great resource. I’ve recently been diagnosed with CFS/ME and have inevitably trawled the net for recovery stories and positive inspiration and its certainly a lot easier to come by the negative stuff. I’ve made all of the obvious changes diet wise and started taking various supplements. I’m also going to try the Perrin Technique and I bought Annie Hopper’s neural retraining DVDs before I discovered your site so I’m currently watching that which is a similar approach. The hardest challenge I find is to stay positive and focused on recovery in light of… Read more »
Indeed it can really affect us. Taking active steps and making choices to shield ourselves from negative influences is an important step in recovering from Fibromyalgia and ME/CFS.
It’s great to hear you are taking positive steps forward and making great connections. I hope that CFS Unravelled helps you bring it all together. You might also find some helpful insights from the free videos of the ANS REWIRE program.
Look forward to hearing about your recovery one day soon!
I don’t seem to get the link for the free introductory courses. Could you please email it to me @
Sometimes you have to check the spam/promotional folders of your email service. I have removed your email from the comment to protect your privacy and initiated the request on your behalf. If you have any difficulties receiving, fee free to contact me here: http://ansrewire.com/contact/
Your article makes sense to me, and as I have H-EDS aka EDS hypermobility type along with IBS, multiple sensitivities,(they are not classed as allergies here unless your body goes into shock, which is ridiculous, but that is how it is.) & I also have an endocrine condition. We have CBT, but I’ve found it useless as it only touches behaviours, not the mind. And while I have good ways of controlling my pain, & have taught others my ‘box’ method, I can only put it away for it to pop out again later when it begins to really hurt.… Read more »
Well Cynthia, what you are doing regarding pain sounds like an excellent step in the right direction. But rather than ‘controlling’ our pain, it is about changing our relationship with pain, so that the brain can change how it responds to it. It is similar with MCS – the reactions(the flare ups) are real, but indeed their are a neuro-immunological response rather than a ‘pure’ allergy. You can learn more about the ANS REWIRE program by watching the first 4 lessons through this page: https://cfsunravelled.com/ans-rewire/
Well Cynthia, what you are doing regarding pain sounds like an excellent step in the right direction. But rather than ‘controlling’ our pain, it is about changing our relationship with pain, so that the brain can change how it responds to it. It is similar with MCS – the reactions(the flare ups) are real, but indeed their are a neuroimmunological response rather than a ‘pure’ allergy. You can learn more about the ANS REWIRE program by watching the first 4 lessons through this page: https://cfsunravelled.com/ans-rewire/
Hi Dan I am curious about your education and how you came to realise about this solution for cfs. Thank you
I have a science background (physics), but I am not a doctor or medically trained in any way.
In CFS Unravelled I explain how I arrived at my conclusions – you can check out this short video series that summarises it somewhat.
I understand where you are coming from and it took me a while to grasp it. But I can now. Something I notice when hearing Pain conventions is “those in Pain must have some kind of support. Holing up pain , grieving the life that was, trying to raise teens, and there were no cuts or bruises from the accident when a 16 year old hit me 3 times. My head was going ever which way. There was brain shearing, Dystonia, Fibro, CFS, HHV6, Epstein Barr (the stress level was very high, as I had a job I loved at… Read more »
Hi Cathy These very rough experiences leading up to ME/CFS/FMS are common, and I explain why this is in the video explanation as well as the introductory module of the ANS REWIRE online recovery program. The struggles of ‘invisible illness’ like ME/CFS/Fibromyalgia seems to be ongoing and there is still much we need to do in terms of awareness. You can follow me on twitter or facebook – I try to share some awareness posters from time to time. Cathy, looking after yourself is probably the number 1 priority. Whilst lots of people recover from the illness, it’s from a… Read more »
What bothers me is that I am always ALWAYS tired!! Exhausted!! And when it comes time to sleep I can’t sleep. Oh and the soreness omg I have been taking tylenol&ibuprofen constantly 6-7 times a day EXTRA STRENGTH and I’m tired of it😩 I just want to feel better, more awake when I should, energized and sleep when I should, awake refreshed instead of feeling awful😒
These are the typical symptoms of the syndrome – hopefully, the video explanation and book are helping you understand how they are created and how recovery is possible! 🙂
Hi Dan. Have you joined forces with any neuroscientists or related physicians to aasist you further in your understanding of FM and neuroplasticity?
There are some connections, but it’s difficult to get funding for formal studies wherever pharmaceuticals are not involved.
My daughter got ME/CFS since her last Gardasil injection. It took us 3.5 years to have a conclusion of ME/CFS. She got brain fog, excessive sleep, HRV causing her to keep waking up, fatigue, can not focus, sensitive to light, noise, tinnitus, sore throat, light fever, OT. She can hear the TV when it got switched on, even though her room is 20m away from the TV. On a bad day, her tinnitus got louder.
Do you know if anyone ever recover from tinnitus?
Sorry to hear about your daughter’s experience.
Yes I have heard others recover from tinnitus – in fact I myself had tinnitus for some time (not sure now, I think it might have been a year or so). In many cases it is about addressing allergens that are creating fluid in the ear and sometimes infections. In cases where tinnitus is due to excessive noise damage, I am not sure – it may be more challenging to get rid of it. I think Stuart also mentioned tinnitus in his interview.
Hi Dan, can you point me to some resources about tinnitus? It’s the one thing that still plagues me. Thanks!
Hi Lynne I don’t have specific symptom resources. What I can say is I think a similar approach to CFS/Fibro recovery is appropriate, in that we seek to address any physical issues and the neurological side at the same time. For the physical side, my experience suggest that fluid in the ear can play a role, so addressing any allergies may be helpful. On the neurological side, the brain-training mechanism of changing how you relate to the sound, how much you focus and anticipate also play a part. So steps like white noise, CBT to change how you relate to… Read more »
Hi Kim, I’ve heard of people have excellent results for tinnitus from a psychological therapy called ‘Rapid Transformational Therapy’ created by therapist Marisa Peer. Best, Caroline
Hi Dan, I found your website when searching neuroplasticity. That search was a result of finding an audiologist who has a program for treating tinnitus, which I have had since 2002 after a rock concert (and many concerts in my younger years). I watched your first video, and finally someone — you — brought up the excess energy in the body that makes one twitch! I have fibromyalgia pain, and I get these episodes where I HAVE to twitch and jerk, especially my neck. It seems to be trying to make adjustments. I can usually control myself and make myself… Read more »
Just a somple question. For my brain to process. So the answer is to train to brain to not feel pain anymore? Is this the right understanding?
Certainly that’s the view of many people regarding central sensitisation.
However, my question is WHY is the central sensitisation there in the first place!
It’s my view that the root cause of central sensitisation causing pain is ANS dysfunction – hence the focus should be on resolving both simultaneously.
Whilst brain-training is an important component of that, it’s important to understand all the triggers of ANS dysfunction including physical dysfunctions – so it’s about addressing all these things in once concerted effort as I describe in CFS Unravelled.
Hi Dan, I’ve had ME/CFS for 5 years now, brought on, I believe, by prolonged psychological stress when I was a teenager and later when at work as an adult. I have had great help from nutritional supplements provided by a specialist ME clinic which addressed mitochondrial dysfunction. However, I make good progress then crash when I overdo it. Yes, sometimes there is associated stress but not always that I can see. When I do crash, rest is absolutely what gets me back to feeling well again. My clinic would say that my ATP has run out when I crash… Read more »
Hi Caroline, Well, the book will explain this better, but I’ll share some thoughts briefly. Whilst the dynamics of ATP replenishment make sense, and most likely contribute to the symptoms for many people experiencing this syndrome, the more central issue is ANS dysfunction in my view. So yes, stress can trigger you, but as you put it, it takes very little ‘stress’ to create a setback once the dysfunction is established. The ANS responds to all stressors, so just because it’s not psychological, doesn’t make a difference. Because the nervous system is sensitised, it can take very little to create… Read more »
Does that mean you offer people thier money back if you can’t guarantee people won’t recover if recovery is so individual, like say Gupta?
We used to offer a 6-12 months warranty like that, but changed it to a first 30-day warranty so people can request refunds (less the admin fee) sooner if they feel the program isn’t the right fit.
You can see all the details in the ANS REWIRE Terms and Conditions.
Some people find this preferable, some find the old offer preferable.