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[mycfsrecovery]

My CFS/ME Recovery Story!

Hi everyone. I’ve been away from my Instagram account (realtalkaboutm.e) for almost two years now! I’m sorry to all the friends I made there that I just disappeared, but I had to make the difficult decision to leave in order to put my health first and allow myself to fully recover from CFS/ME. 🌸

A lot has happened in the last two years and I’m so pleased to say I AM FULLY RECOVERED FROM CFS/ME!!! 🎉

It’s definitely not an easy journey but I promise you will get there too. Anyone who I spoke to regularly in this community will know just how sick I was - I could not leave the house for six months because I was so unwell. So I ask you to please have an open mind when you read my recovery story, because I did not recover through conventional medical interventions. I found a program called ANS Rewire, and the explanation for the cause of CFS made sense to me because it related to how I had gotten sick in the first place. I’m a skeptical person who researches everything in depth before making big decisions, and I decided that I had nothing to lose from trying out this program - the last thing to convince me was the money back guarantee if I made no improvement at all, because I had not seen that offered on any of the other programs I’d come across. The person who has created it, Dan, also appeared really genuine to me and I trusted him as he had gone through this experience himself and genuinely wants to help others recover too.

Most of you will be aware of my symptoms from when I talked about them on my Instagram account, but I’ll briefly describe them before detailing my recovery journey. I had terrible exhaustion/no energy to do anything except sit in front of the TV (or on bad days I had to stay in bed), POTS (my blood pressure dropped when I stood up, I had heart palpitations and I felt very faint), chronic pain, headaches, brain fog, no exercise tolerance (I became very breathless with little exertion and would “crash” for days/a week after exerting myself - which could just be attending an appointment), dizziness and many other symptoms that I honestly cannot remember now.

I rarely left the house for six months due to these severe symptoms. When I did, it was usually for doctor/specialist appointments or the very occasional lunch with my family (often to celebrate a birthday or other special event). I did not see my friends for a long time as I was too unwell to socialise.

When I was sick and I saw someone who had recovered, I wanted to know EXACTLY what they did to recover. So I’m going to do that for you, because it really frustrated me when most people could not give me a clear answer or wanted some sort of commitment or money from me to hear their full story. However, first I need to highlight that recovery is a very individual thing, because we all have different experiences, trauma, and other health issues that influence how we become sick and how we stay sick.  

In my case, I had a multitude of factors that I believe led to CFS (which was basically my body saying “I can’t cope anymore”). I have an autoimmune disease (coeliac disease), I used to experience severe anxiety, I was a people-pleaser and perfectionist who would push myself beyond my limits, and I had some stressful family issues happening in the lead up to becoming unwell. These things all added up and contributed to my CFS/ME. Even after fully recovering though, I still could not work out the specific trigger that almost created a domino effect, causing or worsening all of my other issues. I did not have this major realisation until I returned to university earlier this year (beginning my honours in psychology), thinking it would all be much better and easier now that I was fully healthy - I was wrong! Going back to university was what led me to discover that all this time I had been living with undiagnosed ADHD. I could not work out why I was feeling so overwhelmed at university and why everything took me so much longer than everyone else. I literally switched to part-time study within a few weeks of starting my course because I just could not keep up with the full-time workload. Thankfully, a lot of researching led me to discover that I related to many of the symptoms of ADHD. I’ll go into more detail about ADHD in another post but I really encourage you to research the symptoms in depth because there are a lot of misconceptions about what it is (spoiler: it’s not just hyperactive boys!), and many women go through most of their lives undiagnosed. Some symptoms are forgetfulness, poor time management, disorganised, overwhelmed with complex tasks (like assignments) and following instructions, poor emotional regulation, and finding it very difficult to concentrate on uninteresting tasks. Everyone might struggle with these things from time to time, but if it happens frequently and is disrupting your life, that’s when it might be ADHD. For me, I felt chronically overwhelmed (despite having few commitments or responsibilities) and I couldn’t understand why I was underachieving whilst all my friends passed me by, despite myself knowing I was just as smart.

Back to my CFS recovery though…I went to many doctors and specialists which ended up being unhelpful as most did not understand CFS and I ended up feeling worse after all those DISappointments. For a long time I was desperate to “find out what’s wrong” but unfortunately my many specialist appointments just demonstrated to me that just because someone is a doctor, it doesn’t mean they know everything. And that’s understandable, humans are complex and it’s impossible for a GP or even a specialist in one area to understand everything that is going on in your body. Advocating for yourself is so important, because YOU know your body better than anyone else, and usually your gut instinct is right. I know it is wearing though, especially when you are already so exhausted from CFS.  I became quite tired and frustrated of either being dismissed completely, told I would not recover, or getting my hopes up by someone telling me they could “cure” me and then being upset when it didn’t work. I learnt that I had to do my own research to see how other people had recovered from CFS, it gave me so much hope when I came across quite a lot of recovery stories. However, it was confusing because everyone recovered in different ways, so I did not have a specific treatment plan to follow. I also had to accept that I had CFS, a real and valid illness, and it was not something else causing my symptoms. For example, I would come across different people saying it can be caused by viruses, or parasites and this one treatment would make it go away and cure you. ALWAYS, these “silver bullet” treatments NEVER worked. I realised that treating CFS had to be done with a holistic approach, I was not going to recover by taking a pill or antiviral medication that would instantly cure me. It would be a long, and at times difficult process to recover.

So, in a rough order of what I did to recover:

• May 2019 - I found a great integrated doctor who listened to me, understood CFS and ran any tests I wanted, he was open to trying different things and gave me confidence that I’d get better. He prescribed me Low Dose Naltrexone (LDN) and this helped me get out of the house for short walks for the first time in months. The benefit seemed to just be right at the start because further increasing the dose did not improve my symptoms. So I think LDN gave my body a push towards recovery, but the most powerful thing was it gave me hope that I COULD improve and get better, and getting out the house after six months was amazing.

• August 2019 - I began the ANS Rewire Program by Dan Neuffer. Dan’s recovery interviews (found free on YouTube - his channel is CFS Unravelled) inspired me that I could recover and I was determined to become one of the people who had recovered from CFS like those in his interviews. This led me to finding his recovery program and I 100% believe this program led to my RECOVERY. It is easy to follow, affordable compared to most other “recovery” programs and most of all it gives you hope that you will recover. I was very skeptical of anything like this but Dan’s genuineness and the money back guarantee persuaded me to try it as I had nothing to lose.

• September 2019 - I began seeing a really helpful naturopath who also listened to me and was very understanding. She prescribed B12 injections and after a few months I noticed my brain fog was lifting and my mental abilities were improving greatly, I finally felt like I had the mental energy to make conversation and think more deeply about things. She also suggested different vitamins, for example my vitamin D was quite low so I think taking this supplement really helped too. I also took magnesium powder for my body aches and a few other supplements to help my gut and energy levels. However, I did not overdo it with supplements. The naturopath was also the person who told me my iron levels were actually really low - for some reason my doctor didn’t pick this up because they were in the “normal” range but only just! I learnt that there is a BIG difference between normal and optimal levels. Iron tablets were amazing for me and cleared up my POTS symptoms within a few months!

• October 2019 - March 2020 — With the help of the ANS program I noticed many improvements in my health, I was able to go for short, slow walks and make short outings with my friends. I still could not walk far or fast until probably January 2020. As I went out more and did more, my anxiety around getting sick decreased and my exercise tolerance improved. Just before the pandemic hit I had an amazing trip to Byron Bay and did loads of activities and hikes. This was the real turning point for me, where I realised I could do anything during the day and I would not get sick! By March 2020 I was doing longer hikes, regular outings with friends and regular walks with my dog. I still had some lethargy during the day though. I began to come off my anxiety medication (that had also helped with my sleep) as I felt like I no longer needed it.

• April - June 2020 - I began noticing improvements in my energy levels during the day. I had built up to 60 minute meditations. Around April/May time I knew I was 100% well! It was an amazing feeling to have great energy levels all day, everyday! I had to remind myself that healthy people get tired by the end of the day too though as I still had some anxiety about this. I finally realised the difference between CFS tired and healthy tired - as you all know, they are NOT the same!!

• June/July 2020 - I felt healthy enough to start looking for work 😊

The only remaining symptom I have from my nervous system dysfunction is muscle tension in my neck and shoulders, which I think I am more prone to anyway especially when studying a lot. This has improved greatly and I know that it is not going to last forever. I’m continuing with the REWIRE technique along with massages and muscle strengthening and I know eventually I will not have an issue with this 💪

Finding out I have ADHD has been a massive relief to me, because now I can figure out ways to work with my brain instead of against it. And I can stop trying to push myself to keep up with everyone else because some things are just much harder for my brain to deal with! I’m really optimistic about my future now because I can find better ways to manage university, I can find work that is more suitable for me, and I will hopefully achieve my goal of becoming a child psychologist!

So, that’s my recovery story and I really hope it inspires you that if you have CFS/ME, you CAN recover. Do not listen to the doctors who tell you it’s permanent, it’s not true. A major thing I’ve had to learn is that even medical professionals don’t know everything, the human body and brain are extremely complex and we still do not know how it all works. Anyone who knew me when I was posting on this IG knows that I was genuinely sick with CFS and it was pretty bad. I also want to make it clear that I am in no way suggesting that CFS is a psychological disorder because it is definitely NOT! It is a neurological condition. The ANS Rewire program also recognises this, which is why I felt comfortable signing up because it validated that my illness and symptoms were real.

Of course we are all different, and I can’t guarantee that this program will 100% give you a full recovery, but I can guarantee that you will see at least some improvement. A holistic approach is the best way to tackle this illness, and this is what the ANS Rewire program offers. You need to believe in the theory behind it, that it is what has caused your illness because if you feel like it does not apply to you then it’s unlikely to work effectively. If you are determined and persist through the course (I think it’s 6 weeks or so), you will see some symptom improvement and hopefully it will lead you to a full recovery! Dan knows what CFS is like and so the daily activities are very manageable, even if you cannot get out of bed.

Lastly, I’m not telling you that the only way to recover is to complete this program, because you need to do what feels right to you. This program might make no sense to you and you do not think that it explains the cause of your illness at all. If that’s the case then that’s fine, it might not apply to you. All I can tell you is my experience, and the ANS dysfunction explanation felt right to me and applied to my situation. This is not some a promo or sponsored post about the program either, I just really wanted to share how I recovered and this program was vital in my recovery. You might find another more suitable way to recover from your own CFS/ME. All I can say is that I will be forever grateful to Dan Neuffer and his ANS Rewire program, because without it I would not have made a full recovery, or it would have taken me a lot longer to recover.*

I might hang around to respond to messages on here and my Instagram account but please don’t be offended if I don’t reply to you - I strongly believe in self care and I might decide not to return to this account. However it was really important to me to update you on how I recovered, because I really want good health for all of you and I hope you also get there one day 🙏 🌻

*I want to emphasise that this post is specifically about my recovery from CFS/ME, directed at those who currently have CFS/ME (it may also apply to people with similar conditions like fibromyalgia). I completely acknowledge that it is not possible to 100% recover from all chronic illnesses. This approach is what worked for me and my illness, we are all very different.