Further to the written story, I have also shared my story in numerous interviews. Ultimately, they end up somewhat about my experience helping others, but I felt this interview with Phil of the Chronic Comeback does capture my story pretty well.
Dan's Recovery Story in Words
I thought that the best way to start my ME/CFS/Fibro/POTS Recovery Story, was at the beginning.
A couple of years before my the illness started, I made a major career change from my science work as a physicist specialising in lasers and optical systems to a technical specialist in the financial services industry. The change was driven by my decision to get married and start a family and not wanting to have to chase work interstate or overseas.
Then, following a very rough year during which I nearly lost my wife during the birth of our son, I was working hard on my career change and had also started another major undertaking outside of work.
When a colleague’s husband had come down with the chickenpox, I quickly organised a vaccination as time off sick was the last thing I needed. However, within a week of receiving the vaccination, my first ME/CFS symptoms appeared, which were extreme fatigue affecting my ability to walk.
Dan’s Experience with ME/CFS/Fibromyalgia/POTS
My illness quickly morphed into a large range of classical ME/CFS symptoms. I suffered from a staggering range of symptoms over the years, but my main ones included ongoing extreme fatigue not alleviated by rest, bouts of fever, pain and other flu-like symptoms, gastrointestinal symptoms as well as night sweats, cardiac symptoms, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, and neurological symptoms such as fibro fog. My symptoms changed over the years and my fibromyalgia pain symptoms became more prominent during the second half of my illness.
Like many others, I soldiered on as best I could until eventually I had to work part-time and later on was unable to work at all for extended periods of time, especially during the later parts of my illness.
I often say – “Only a CFS/Fibro sufferer knows the feeling”. That was probably one of the worst things besides the actual illness. People often think they understand you because they have experienced exhaustion or fatigue, but ME/CFS takes it to a whole new level. And like any chronic illness, over the years it can become difficult to cope with all the challenges that brings.
It’s the same with pain, I was able to take it in my stride for the first 3 years, but in the fourth year when the pain became a daily experience outside of my flare-ups, coping with it became very difficult for me.
But it wasn’t just the illness that was a problem for me, one of the worst things was not knowing why I was ill or what was causing the problems. For several years I thought it was some mystery virus or some other sort of illness. It was only after numerous exhaustive (& exhausting) investigations with multiple doctors that it was clear that I had ME/CFS. Whilst I got some comfort from at least having a label, given the official lack of understanding and poor prognosis, it was a double-edged sword.
Coming into my 5th year of illness, I had managed to somewhat steady my cycle of symptom flare-ups and basically resigned myself to this being a lifelong condition. I just wanted to try to live with it as best as I could. However my base-line, health had declined and Fibromyalgia and POTS had become part of my condition. Coming to accept this actually gave me some sort of peace, but then my health took a drastic turn for the worse, I was pushed towards my turning point.
Dan’s Recovery from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Fibromyalgia/POTS
I have heard it said that things have to get worse before they get better. Well, there was no “getting better” in sight and all I managed to do is “get worse” over time, even though there were some moments of respite.
However, after my illness reached its low point, I had dedicated myself to stop reading about the usual CFS/Fibro/POTS info out there, to stop searching for other’s recovery stories and to stop that rollercoaster of hope and disappointment of trying treatments that had never worked out for me. Instead, I wanted to try to find out what was really going on, what was driving the illness. So I started my own research project by collating commonalities and differences amongst sufferers and investigating what could be causing some of the measurable physical changes.
Given that I don’t have a background in medicine or biology, and that I was still very ill and had some difficulty concentrating for any period of time, this was a difficult and frustrating journey for me. However, soon more and more pieces of the puzzle started to fall in place until I started to form a clearer picture of what goes on with ME/CFS, Fibromyalgia and POTS.
My confidence in the validity of this hypothesis grew more and more over time, especially as I discovered other researchers who had similar views on significant aspects of the explanation. However, I realised that translating this knowledge into a recovery was by no means certain.
My recovery was in stages and actually included many treatments that I had previously used without success. I think the biggest realisation was the importance of having a comprehensive plan to see through to completion as opposed to the shotgun approach.
Initially I healed my gut and changed my diet under the guidance of a very skilled doctor. I also used various supplementation to improve my metabolism, my detoxification, and to reduce the oxidative stress I was experiencing. I treated a variety of the common dysfunction in CFS/Fibro/POTS using reasonably well-understood treatments, but my new understanding allowed me to avoid those that would be detrimental to my recovery.
One of the key things for me was also creating a healing environment. I made lifestyle changes and meditation also played a big part during my recovery. As I progressed, I used a range of additional brain-training strategies to address what I believe to be the central cause of Chronic Fatigue Syndrome, Fibromyalgia and POTS.
But without a doubt, having a deeper understanding of how Chronic Fatigue Syndrome, Fibromyalgia and POTS works was the absolute key to my recovery. (You can get access to the Free Video Explanation HERE) That is why I don’t always focus on talking about exactly what I did, because whilst much of it is very relevant to most people and already widely understood, I believe that the KEY TO RECOVERY is tailoring a plan that addresses the underlying triggers particular to each CFS sufferer.
All in all, my recovery started after being ill for 5 years and took me around 18 months. I made some very significant progress in a matter of weeks but other improvements took many months – and of course, there were setbacks along the way, which was often very disheartening.
Dan Now that he has recovered from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Fibromyalgia/POTS
My plan initially was just to get back to my life and do some catching up on all aspects of my life. But after not having met a single other person with CFS/Fibromyalgia/POTS in over 6 years, I suddenly started to meet them all over the place.
I quickly realised that something so complicated needs a structured explanation – so I went to write a short book to explain my research to post somewhere on the internet.
However, trying to put it into words and finding the right way to share my understanding turned into a major project! When the book was finally finished (CFS Unravelled), I realised that I had so much more to share, but it wasn’t easy. At first, I tried sharing the book for free, but stopped when I realised that something given for free isn’t valued and often isn’t even read. (that’s ignoring the fact that without spending the time/money to market the book, hardly anyone finds it anyway – it turns out a site on the internet really like finding a needle in a haystack!!). So I have kept changing my strategy and continue to give it my best efforts to give others the same opportunity for recovery that I have had.
What is my life like now? Busy! But I have learned to live a balanced life and appreciate every day I have. I am living a full life, working full time, but also enjoying time with my wife and two small children (those trips to the park or the beach have taken on a whole new feel since my recovery). And I am exercising again – never thought I would see the day.
Goodness, I even enjoy a few glasses of wine with dinner or the occasional Octoberfest again – who would have thought that after years of barely being able to take a sip of alcohol without falling into a deep hole, that this was possible?
My message to all CFS/Fibro/POTS sufferers is don’t lose hope – recovery is possible, even if not easy. But stop looking for the magic bullet quick solution – you most likely won’t find one that will work for you. My recovery was driven by my understanding and having a comprehensive plan, but whilst some understanding is critical, I realise that many others will take a different route.
If you have Chronic Fatigue Syndrom, Fibromyalgia or POTS – I wish you my kind of recovery. Please always stay hopeful. Because I realise the importance of hope, I will start to collect CFS/Fibro/POTS recovery stories to share with you.
Best wishes,
Dan
Words can’t express my feelings! For someone to offer those with the same illness, a free book on how to heal ourselves! You’re right! Only someone with CFS/Fibro etc can understand. Our financial resources are drained. In my case, with 4 of my kids still at home and still relatively young. Its not possible for anyone to understand the stress we live with, and the sacrifices we have to make, just to survive – in our case, just to have the very absolute basics/necessities. I so look forward to your book, and i hope in all my ‘fibro-fogginess’ that i don’t miss the free book day, but i doubt I’ll forget, with lots of reminder emails coming thru. I have a couple of friends with fibro that have been a great support to me and I’m going to pass this info on to them.
Thanks to you Dan, and to your wife and family who, i know, have also had so much to cope with through all of your suffering also.
Sincerely,
Carol Marie
Thank you for your kind words – it is a difficult road travelled with this illness, but there definitely is hope for recovery.
Just realise that there is no magic cure – so the book offers an understanding and framework, but it is always your personal responsibilty to take the action and follow through. Ultimately, you should get help from various professionals.
Best of luck, the book should go free in hours from now!
Sincerely
Dan
Got ME 42 years ago. Severe IBS. Recently I had crashed, (was in hospital last year, gall bladder probs, on antiobitics for 15 days, off for 4 weeks, then back on 10days, I know this has destroyed my gut again, why now I’m crashing. Took me years to get it right, and when I did, began to recover) and was unable to pick up any email or go online even – too much energy needed.
I therefore missed out on the book. I cannot watch video, I don’t have enough broadband for that, as I live on a tiny pension, therefore how can I get a copy of your book?
Read article on BacteroTherapy (I call BT) – v.interesting; seems it works most of the time. Maybe medicos could concentrate on that. Probiotics expensive here in NZ. Have to squeeze them out of my food budget or go without petrol (no transport close), so fixing the gut may fix whole lot of us.
Thanks
Sandra
Thank you for your comprehensive video. You have obviously given this a great deal of thought and walked around it from all angles. My experience is one where without help I don’t think I would have been able to figure out my personal triggers. It was similar to yours in a sense that it was caused by a vaccination. The vaccination was from childhood though and it was a virus in the vaccine, not one that the vaccination was used for, that ultimately led to CFS for me. With menopause, CFS hit me hard. Though it was written off to menopause and hormones were prescribed. As I look back it was always there throughout my entire life but not drastic enough to get a diagnosis. Just seen as stress, not enough sleep, long hours, divorce, etc. As you so wisely pointed out, addressing the consequences and not the cause will not provide true relief. I worked with an amazing practitioner, Anthony William, who has impressive results in pinpointing the exact cause for each person. I am on the road to recovery and have a bit more to go. I am seeing improvement and understand fully what will bring true healing and what feeds the underlying issues causing the CFS. Thank you for your wise videos and website.
Thanks for your comment Marina, it’s great to hear that you are on your way towards recovery. Yes, it is a challenge to get through this without some help, I was lucky to be able to do that. Having somebody experienced in CFS/FMS help you identify where you are at and what you are doing is very valuable. Few people can evaluate themselves and their experience objectively and see what is happening and how to move forward. Thank you for sharing the name of one person that may be able to help.
As a physician and researcher interested in chronic pain disorders, I am very interested in hearing from people who have overcome various types of chronic pain conditions. Along with two colleagues, I am currently conducting a study of individuals who feel they have overcome their chronic pain. A detailed description of our study can be found at studychronicpain.com.
If you or any of your readers would like to participate in the study, please contact us at our website and we would be delighted to interview you.
Thank you,
D. Joseph Meyer, MD PhD
I to have Fibromyalgia and CFS, I’m still battling fatigue but I can say I’ve been Fibro flare free for 3 months now. I know that isn’t long but its very encouraging and I’ve been treating it naturally. My life experience can’t be compared to most people with CFS/Fibromyalgia, I’m only 24, but I believe my first Fibromyalgia flare happened when I was only 15 years old, I didn’t even know what it was. Unfortunately through my journey doctors haven’t been so helpful, it wasn’t until I was in a walk-in clinic once that a doctor mentioned CFS and I finally knew.
Doing research on Fibromyalgia and CFS has also discouraged me greatly and basically all I’ve found have been people completely depended on pharmaceutical companies and refuse to believe that they can help themselves. I know the pain can be excruciating and by the middle of the day exhaustion is overwhelming but you are right we can help ourselves.
I was the classic over achiever balancing school (Chemistry major), work, life, and doing everything one my own. I believe that this along with not being able to emotionally deal with past issues ultimately lead to me being ill. I started focusing on myself, I quit my job, I moved in to my own place to lessen stress, I started seeing a school Councillor just to talk, and then I changed my diet completely.
I don’t know if you’ve ever heard of it FibroSense, its a premade suppliment package, you can find it in a natural foods/suppliment store. It was actually made by someone who suffered from Fibromyalgia. I started taking FibroSense, and a host of other vitamins and minerals, I started seeing results in weeks and now all the pain that I felt before is gone. I’m still suffering from fatigue, luckily not as bad as it was last summer, and I hope to someday soon make a full recovery.
Hi Stephanie,
It strikes me that your instinct has led you on the right track.
Hopefully you will find the video explanation and other resources helpful.
Warm wishes,
Dan
Dan just a quick question, it could be addressed to anyone who has recovered from CFS/ME. When you conducted all of these tests were your EBV/CMV levels high positive? I do believe that there is some sort of viral proponent, but I am just interested to see if anyone with high viral loads for these fatigue based virus’s has recovered. Thank you.
Hi Stathi
Many people have all sorts of infections – basically you name it, we get it. Because the system is so compromised in ME/CFS/Fibro, the body becomes a playground for infectious agents.
Yes, the EBV virus is very common and I have seen people recover when they had this. However, I am not convinced it even triggered their illness, often it is just latent and comes out when the immune system crashes. In my view, whilst certainly a big stressor, it is parallel to the illness.
So yes, recovery is possible.
Dan
I love to learn about people and you sir are very interesting now that I have seen into a part of your life. First, God Bless that you are healthy today and can enjoy your wife and children.
I commented on one of your many videos on youtube and you replied. So after I replied to your comment I noticed your linked and because I truly believe the world would be better if we all just communicated and shared the important things. So here I am reading all these stories of people who have made it out of the misery of Fibromyalgia. I came to read your story.
I think some people with fibro get comfortable with being uncomfortable and accept it in the end. Some people, that was me at one point but because I believe I was place here for a higher cause. I could not accept it any longer. Some people get offended that I say they get comfortable with it. It’s what I felt, it’s what I saw in other people. So for me it was my truth along with others. It’s a disease that captures you and you surrender because it’s easier then the battle to beat it, not knowing the victory is so amazing. When we are sick it is so impossible to think we can be better. Most doctors don’t know how to treat fibro, they go based on text book theory, not by patient experience.
Hi Josephine
Indeed we resign ourselves to being unwell, and try to be as comfortable with it as possible (after all, what choice to you have whilst you think recovery isn’t possible).
It is quite a journey from thinking we are stuck, which is why the ANS REWIRE recovery program for ME/CFS/Fibromyalgia is so heavily education based!
Have you recovered from the illness yourself?
Dan
Hi Dan,
I have CFS since a couple of months and I am looking for some advice. All doctors I have seen have no idea how to treat this and this is very depressing.
I bought your book and found it interesting. I changed my eating habits trying to eat lots of vegetables, fish and poultry. I am still working but it seems still ok.
But at home. I am a single mother and I try to do only the minimum (cooking, small cleaning things, ironing) but then I get lots of pain. I have got a lot of acidity and headaches. Do you have any idea what is the best way to manage it? don’t do anything? thanks for youzr advice. Miriam
Hi Miriam,
It’s always important to ensure we know exactly what we have – chronic fatigue and CFS are different things. So make sure you can an accurate diagnosis.
Assuming you have CFS, then as per the book we need to focus on much more than just physcial strategies for the symptoms, we need to really address the root brain dysfunction as well. Managing symptoms was not something I ever found easy – my view is that the best effective treatment for CFS is to focus on a coprehensive recovery action plan – this is what the ANS REWIRE program focusses on.
Hey Dan!
I suffer from exhaustion and sometimes flu-like symptoms since September 2016.
Since then I have been to many doctors and have been checked from all kind of different specialists. Because I have a panic disorder and anxiety I also stayed in a mental departement of a hospital for 1 month to check if a burn-out or depression might be the problem. But unfortunately nobody could tell me what I have, the anxiety is under control because I had a therapie. The only diagnosis I heard of was “too much training” because I went to the gym 4 times a week before i got ill. So I decided to search the internet and found out it can only be CFS / ME based on the symptoms ( exhaustion and pain getting worse up to 48 hours after heavy activities and has been a part of me for over 8 months now ). Everytime I’m trying to tell a doctor or psychologist my problems I’ll only get answers like “CFS don’t exist” or “I’ts just like a burn-out und should be threated that way with pills and therapie”….
Therefore I diagnosed myself because nothing else seem to fit and my problems are still there. In a facebook group other sufferers confirmed me that my symptoms are real and that they went through to hell too to find out what they are having. First I was shocked and scared to loose everything like many others with severe CFS. But after I found out about you and others who managed it to beat the illness somehow and recovered from it I also found hope for my future. Currently I’m able to work in an office and can go for a walk in the park. But if I have stress or do something like carying something with more weight then I experince heavy exhaustion and the flu-like symptoms which last a couple of days sometimes and make it impossible for me to work or even go out.
Besides my anxiety problems I have also a mild form of asthma and a chronic gastritis since October 2016 ( they appeared suddenly ) and hashimoto since 2007. The gastritis is caused by a low carb diet based on many milk products for years and an unhealthy cheatday every sunday I guess. Asthma could be developed because I used to smoke up to 20 cigarettes a day before I quitted it last year in October.
I hope you can give me some advice how to start trying to recover. My plan would be to eat like a vegetarian or vegan to cure my gut. Because I’m not breathing correctly ( due to bodybuilding ? ) I want to learn how to meditate. And to fix my anxiety problems I think about buying the gupta program. Last but not least I try to think positive and never loose hope because all negative thoughts made me feel worse.
What do you think about my plan to recover ? Am I on the right way or should I try something else ?
I’m sorry for this long text and hope you can understand me even if my English isn’t that good 🙂
Hope to hear from you, I would really appreciate an answer !
Hi Stephan,
It’s unfortunate that ME/CFS/Fibromyalgia is still sometimes treated as not being a real illness.
This is partially due to it being poorly understood by much of the community.
I would suggest that you watch the explanation videos and then the free intro videos on ANS REWIRE to help you understand the connections between your experience and the dynamics of the illness. The program will give you a framework for recovery which is very much in line with some of your thoughts already.
Yes, it’s indeed very difficult even to explain my health issues to other persons wheter if it’s friends, colleagues or family members. They all think I’m doing fine and it’s all in my head because they know I already had anxiety problems and they see mee walking around and even laughing. CFS / ME is mostly unknown and due to it’s name only associated with beeing just tired which is the main problem it dont get no attention as a life destroying illness I guess! Unfortunately you don’t see exhaustion and how hard it’s for me to get to work every day with this illness….But I’m also tired of trying to explain everbody what I have and learned that the only chance of recovery I have is to do something myself if doctors can’t help me. At least I can be glad that I’m still able to do soemthing and I don’t have severe CFS yet as many others.
I will watch your videos an try to build something like a master plan tailored for me 🙂
You’re really a inspiration to me and if if’s wasn’t for you or other recoverers who shared their stories it would be much harder to have hope, thanks for sharing your knowledge with the public !!!
It’s a real shame that this issue still exists after all these years. In my view once ANS dysfunction is more widely recognised as the root cause and better diagnositic tools become available to measure this, the illness will become more ‘legitimised’. In the mean time, we all simply have to do the best we can and ignore these frustrations as best as possible.
Thanks for the kudos. 🙂
Hey Stefan, were you able ever to cure yourself? I ask because I was at a similar age 7 years ago when I responded to this thread? Either way I’d love to discuss if you’re open to it.
Hope all is well,
Stathi
Thankyou for sharing your cfs/ me / fibro story. However frustrating it becomes as time oves on, I also believe in positivity as this mind set will help the healing process prevail.
Positivity is great – but recovery from ME/CFS/POTS and Fibromyaliga, in my experience, also needs a large range of actions tailored to our experience with the illness.
Can it also help orthostatic hypotension or does it only help POTS?
Thanks
Hi Dan, sorry my question should have been: does it only help POTS or any form of Orthostatic Intolerance (like orthostatic hypotension or low pulse pressure)?
The program is to help people recover from the syndrome – ie. POTS. Singular symptoms like orthostatic hypotension in isolation can be addressed more directly and easily and one would expect to have good response from appropriate mineral balancing and hydration and adrenal support.
People experiencing the syndrome don’t tend to respond, at least not in a lasting fashion, until they overcome the syndrome.
Hi Dan I wonder if you wanted to detail my recovery? I was signed off work in 09 feeling like I had constant flu etc and it spiralled from there. Now I am a Mum and I’d say I’m 90% back to where I was before I became sick which is amazing.
That’s fantastic – congratulations.
Happy to explore sharing your story – please contact me and let me know how you recovered and what you think is missing from being 100% well (keep it brief, it’s just to start the conversation) 🙂
Dear Dan,
I just ordered your book and it’s the only hope i’ve got right now. I was wondering if there is any way one could have a chat with you? (Say via skype). I know you must be very busy and are constantly asked for private consultations. But I’ve just been diagnosed and I think I am at the lowest point of my life. I need to speak to someone who’s been through it, I need to find a reason to continue living.
If you can spare half an hour, I’d be eternally grateful.
Dear Yasmine
If you are looking for hope, the best place to start is the recovery interviews here: https://cfsunravelled.com/cfs-fibro-recovery-stories/
Have you listened to any of these yet?
I have been supporting people and giving up my time for many years now – the key really is to say, how can I help you most effectively. What can really be achieved in half an hour? What areas am I best able to help people?
To find the answer to the question you are asking, the best person to assist you would be a psychologist/ counselor who specialises in supporting people through these kind of emotional and existential crisis challenges.
I hope you find that the recovery interviews inspire you, the book and other resources guide you forward with your recovery. But remember Yasmine, the most important thing is to first look after your emotional health, so get some professional help in that regard.
Hello Dan. Is there a connection between CFS, Lupus and type 1 diabetes which are all auto immune diseases as far as I can see and it’s the gut that needs healing. If so would it be beneficial to go on your programme? Many thanks.
Hello Kathy
CFS is not an autoimmune disease but actually is a neurological disorder that often leads to autoimmune diseases.
If you have ME/CFS, I would encourage you check out the free intro lessons, the program is designed to help you recover from ME/CFS.
Thanks so much for your reply. My daughter who is a type one diabetic with Lupus had CFS about 20 years ago. This could well have lead to her contracting Lupus. I believe she would benefit from your programme.
It’s interesting because in his book Medical Medium Anthony Williams who has been a medium since age four helping people heal. He talks about the cause of Cfs/ me and other “mystery illness” that take years from us. The real cause that Drs have not discovered is a virus, with many strains, one that gets stronger over time, and feeds off of certain foods, stress hormones and heavy metals. The virus is often dormant (unless it’s a aggressive strain) until it is triggered by something, usually a stressful event or toxin; which fuels the pathogen. Whose goal is to bring down our nervous system, going after the nerves. Excreting a neurotoxin that affects the body and the brain. Which is why we have such an array of different symptoms. How to heal? Know what it feeds the virus and avoid them, strengthen the immune system, and target foods and nutrients that kill off the virus. Which ironically he says can take up to 18 months.
Of course this is only a fraction of what I recall from his blogs and books and radio shows. His Instagram has details of success stories in abundance.
I think everyone who has been through this, or is going through this condition needs to come together to grow our understanding collectively.
It is such an isolating condition and those of us who are healing from it or have healed from it, need to share that with others. As you are doing yourself and much appreciated.
I share this information incase it resonates with you and your own journey, and incase it adds anything to anyone’s healing journey.
Blessings.
I have been suffering from CFS for 30 years
Dan. Thank you for all you do, you are really a voice of hope for many of us.
I have a question. Since POTS patients have adrenalin spike every time they stand up, does it mean that they have to be mostly in horizontal position for the duration of recovery to avoid that stress?
Hi Jay
Thanks for the kudos.
I don’t think that taking any extreme position makes sense.
However, generally, we seek not to experience an excessive amount of triggers – so one wouldn’t seek to push oneself. But avoiding standing up ever is probably not the way forward either. It’s about being gentle and working towards re-educating the nervous system to behave normally.
Thanks!
Forty-eight years ago I was diagnosed with fribromyalgia. No cure. Nothing helped any of the symptoms except for mild tranquilizers, which told me it had something to do with the brain. Lived life with various crashes and read everything I could on this ‘syndrome’. Seemed to go into remissions but it was always something that came like a phantom and left the same way with no rhyme or reasons. After quite some time all the ‘experts’ stopped writing and talking about fibromyalgia. A few years back it seems they changed the name to CFS which I could NOT relate to. So, I stopped reading and accepted the fact that I would mysteriously go in and out of feeling really bad even sometimes for years at a stretch. Just something very wrong with my brain. It is only recently that I have come to find out that CFS is a more encompassing reality for what was really going on while we were all following trigger points and various nonsense and guesswork. It took me a few years to see that Dan was not just one of those trigger people that had nothing substantial to offer. I started listening to his recovery testimonies and found this great hope. Felt immediately better. That lasted about three days before I went downhill again. I am in a crash cycle and previous problems I thought I had completely licked (like panic attacks) are now returning. I am still listening, but now it is out of desperation.