Published on April 28, 2020 by Dan Neuffer
Last updated on June 9, 2020 by Dan Neuffer

1 comments

CBT for CFS: Luke shares his frustration with the suggestion that CFS is in his mind

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Luke shares what CBT for CFS had to do with his recovery

Life was frustrating enough for Luke without being referred to CBT for CFS, but reading some books finally put him into action mode that led to him explore his own methods.

He shares his experience with his own version of CBT for CFS which reminds me of other people’s experience with psychotherapy for ME/CFS, Graded Exercise Therapy for CFS and how the idea that ‘CFS is in the mind’ was extremely offensive – he knew it simply wasn’t true!

Here is his CFS recovery interview where he shares his message of hope.

Transcript:

Dan:  Welcome to another recovery interview. This interview is with Luke from Australia. Luke suffered poor health for two years before things suddenly got worse, leading to two years of ME/CFS. What makes this interview particularly interesting are the paradoxes. Luke was deeply offended when people suggest that the illness was in his head. He knew that there was something going on in his body and he used many physical recovery strategies and treatments. And yet, he studied cognitive behavior therapy and applied CBT for CFS for his recovery.

             Luke knew that exertion made him worse. He suffered strong post-exertional malaise. Yet, he also believed that exercise is good for him and persisted, even if he had lost 80% of his capacity due to ME/CFS.

             Luke shares the different treatments that helped him, including the ones that made the biggest breakthroughs in his recovery. There are many powerful insights in this wonderful interview. So listen carefully.

             I hope you enjoy Luke telling his story.

             I’m very excited to do a recovery story. I get the opportunity not just to speak to a fellow Aussie, but a fellow bloke. So I’m not the only man here who’s had CFS and recovered.

             Luke, thank you very much for coming on to share your story. How are you doing today?

Luke:  I’m doing good. Doing good. I feel quite refreshed. I just had a nap. I have to admit. After work, I was a bit tired, but I feel good.

Dan:  That’s good to see. Listen, Luke, I always like to start in the beginning. I gather from our previous conversation, you are a very busy person. You’re a very athletic person and then you started to get sick. Can you tell us a little bit about what happened when you first got ill?

How Luke’s CFS Started

Luke:  Yes. So it felt like there was a slow progression into it. So about 2011, I noticed myself just feeling rundown a lot and I would get recurrent colds and it just seemed like a bit too much to be normal. And I suppose recovery time was impaired as well in the sense that it seemed to take me about a month to fully get over a common cold. And for me, that was uncommon because it will usually only take about a week.

             So like you said, I was very busy and I had a lot going on in my life in terms of sports and work and other things. And it was just getting to a point where things were becoming stressful and it was becoming a bit too much.

Dan:    So you think stressful because you were feeling so unwell? Is that what you mean?

Luke:  Stressful for a lot of reasons. Mentally exhausted from work. I had moved into a more senior role in the workplace and also, played basketball and that had picked up. It had been slow for a couple of years and I started playing state basketball again. And I was also having to travel a lot, to and from work. So long exhausting days.

Dan:    So look, I mean, everyone I suppose, if they’re really pushed, they get rundown and they get exhausted. Was there like a defining moment where you suddenly realized, hang on, this is more than just being exhausted and rundown?

Luke:  Absolutely. For me, it came when I got a flu in 2011. In 2013, I got a flu and I was bedridden for about three days. Literally couldn’t stay awake for more than a couple of hours each day. And I was there and my brother was living in the house at the time and he knew something was up. And I suppose at that point, I realized, this can’t be normal.

             I know people get really bad flus and it can really knock people about. But I had that happen and it happened a second time in the space of a few months. And that combined with the fact that I was getting rundown and not able to kick it off, not able to get rid of it with sleep. So my sleep was really unrefreshing.

             And then I started to notice myself get weaker. Being an athletic person and doing a lot of weights and playing basketball, I did notice my output was starting to diminish and my muscles were getting very sore very quickly. And so, I knew something was wrong with my body.

Dan:    Did this affect you with work?

Luke:  With work, definitely. Slowly, I started to get a lot of brain fog and obviously, it was hard to get up in the morning, but having an office job, it’s hard to sort of sit there and keep my concentration up. And the brain fog slowly got worse and worse to the point where I couldn’t read more than say, half a page without forgetting what I was looking at. And I had no attention span and my problem-solving skills just plummeted. And I’d sit in meetings and just, I was there physically, but I just wasn’t there mentally and I knew there was something wrong with that amount of brain fog and cognitive dysfunction.

Dan:    How did you actually keep working?

Luke:  I had to cover a lot of it up and I had to try and slip it past management in a way, because it was embarrassing for me. And I eventually, I got to a point where my contract had come to an end and I had to apply for the position and I was unsuccessful. And I attribute that to the chronic fatigue. I was not able to prepare for the interview process. I was not able to put in a good application because I couldn’t concentrate on something for more than 10 minutes. And I didn’t do very good in the interview and I remember attending the interview knowing that I hope this doesn’t go for more than say, 45 minutes because I’ll be completely exhausted and I’ll forget what I’m there for and what I’m talking about. And it turned out that I was unsuccessful.

Dan:    So did you then go and change your job after that? Did you work fulltime after that? Did you have to work part time? Or did you stop working altogether?

Luke:  I stopped working for about two or three weeks. And then I started back doing three days a week and that was a good move for me. I’m kind of glad I didn’t get that position because fulltime was too much for me. And I was struggling to get through … I could barely manage doing three days a week.

             So I’d get up, I suppose in a way, I was lucky that it was an office job and I would just need to sit there at my desk for most of the day, not a lot of movement. And then I could go home and have a nap for an hour or so, two hours, because it took so much out of me. So little physical activity, but it would take so much out of me.

Dan:     With the three days a week, I guess you were probably able to manage that a whole lot better. Tell me, what other symptoms did you have? Obviously, you had the brain fog and the fatigue and obviously, the problems in the mornings and the immune dysfunction. Did you have other symptoms like disturbance with your gut? Or did you have problems with lights or sounds or busy places or any other sort of symptoms like that?

Luke:  Yeah, definitely. Look, I had post-exertional malaise. So any type of activity just wiped me out. If I did a weight session or if I played basketball, I would be out for a few days at least and got to a point I had to stop completely. Also, I had a lot of lactic acid buildup in my muscles. Even if I wasn’t exercising, I would get sore hands a lot as if I’d been using my hands all day. And so, I knew that’s obviously not a good thing and I think it’s a sign of chronic fatigue.

             Also, I used to get twitching in my muscles. So that would happen most days, I’d just get random twitches that would last for a few minutes at a time, as if my body was fully depleted and I suppose my magnesium was down.

Dan:     Okay. And so, what did the doctor say when you went to the doctors?

Luke:  Yeah. Look, so over that course of time from 2011 up to 2013, I’d seen about four doctors and each time I’d go in for either a prescription to get some antibiotics just in case it’s a bacterial infection with the flu and stuff.

             I’d tell the doctors, “Look, there’s something wrong here. I feel like I’m tired all the time. I’m fit and healthy, but I can’t seem to get better. And I seem to be getting sick quite frequently.” And they would dismiss it and they just said I need to rest more or I need to eat right or I’m overdoing it with exercise, but I knew my body and I knew what I was capable of and I got to about the fourth doctor and we started doing some blood tests and then that came back all clear.

             I then saw a specialist, a sports doctor and did some more tests, all clear. He referred me to a specialist because there was one thing that popped up in the blood and that was my creatine kinase levels were high, which means that my muscles are not recovering properly and getting that lactic acid buildup. But after further testing, it wasn’t enough going on to say that there’s a myopathy or a dystrophy happening.

             Now, I was lost at that stage. So I went back to the fourth doctor and I said, “Look, I think what I’ve got is chronic fatigue.” After getting the results and the blood tests where they check for virtually everything, she said, “Well, it’s probably a good late.”

             And that was the start of recovery for me. As soon as I realized that’s what this is and reading the literature I could get my hands on online, my symptoms were way too identical with chronic fatigue for that to be any coincidence. So I was convinced enough through the scanning, the doctor was convinced as well that I had chronic fatigue.

Dan:     I mean, that’s obviously a necessarily positive identification because I mean, if you did look on the internet and everything, I mean, what did you think was your way to recover from there?

Luke:  I was lost for a few months and worried and trying to finance this and there’s not a lot of recovery stories out there. But where I started to find the resources that I need was probably started when I downloaded a book off Amazon. I started reading a book by Kristina Downing-Orr called Beating Chronic Fatigue Syndrome. So she recovered herself and she did a lot of study and she put together a recovery model just around diet and supplements and pacing and things like that.

             And then I went … and is it okay, Dan if I go further into the recovery?

Dan:     Sure.

Luke’s CFS Recovery Turning Point

Luke:   That was a book that was sort of a gamechanger for me and I realized that it can be beaten and the motivation for me was getting up every day and being completely exhausted and having no answers and I’d also walk around because my mind was in such a bad state. I was confused and I was worried. I had those feelings over me 24/7. And I didn’t realize at the time that that was making me even worse.

             I suppose the breakthrough for me was when I read another book called Fatigued to Fantastic by Jacob Teitelbaum, who’s an American physician that specializes in chronic fatigue, and he uses the S.H.I.N.E. Protocol, which you might be familiar with. So that’s sleep, hormones, infection, nutrition and exercise as able.

             So I realized that I needed a holistic approach to this. One thing that was consistent in both of the books, I noticed, was that you need to address the mental component, psychological component. You need to make sure that your mind is right.

             And so, Jacob Teitelbaum, I remember in his book, was describing, get into a zone of no blaming, no comparing and basically, none of it is negative thought patterns that we seem to develop naturally as humans when we get quite ill and we don’t know what’s going on. And I knew at that stage that that was a key to recovery as well.

Dan:     But I mean, obviously, the illness is a real physical illness. I mean, many people sort of get accused of making it up or they get accused of being depressed which ironically, often does actually happen that we do get depressed, we get depressed. But I mean, did you ever experience anything like that? Where people were suggesting that it was all in your head or that you were making it up? Did you ever get accused of anything like that?

Luke Deals with the old: CFS is all in your Head!

Luke:  Absolutely. And I remember a fellow that was an acquaintance of mine, we were chatting about it and he said, “Listen here, Luke, I know a lot about these things. It’s all in here.”

             And I thought, “Well, you haven’t been through this. You don’t know what it’s like.”

             So that was one instance. When we came to the diagnosis of chronic fatigue, immediately, the doctor wanted to dismiss me and refer me to a psychologist because I thought that’s the only way to recover.

             I haven’t found a doctor in Perth that actually knows about supplements and treatments, cognitive behavioral therapy, pacing and all those things. We seem to be limited to the fact that this is all in your head and it’s not. And there was another doctor actually, later in the mix. You can say that I’ve kind of been going around the health system trying to finance this.

             One of the doctors said, “Look, chronic fatigue has a psychological component. So it’s very hard to treat.” And it was very, very undermining because I know that this is a physical illness and if anybody has been through this, you know that it’s not in your head. This is a real thing that’s happening to your body. Your systems are out of whack and you can’t just shake it off.

Dan:     Mm-hmm. And so, but you made this connection, you felt still that there was a psychological component. So you explored that as well as the physical treatment options.

Luke:  Yeah, absolutely.

Luke Explores CBT for CFS

Dan:    Specifically, what did you do from a psychological point of view?

Luke:  Yeah. Look, so it popped up in a lot of the literature that I was reading and I started to notice that little things that will cause stress would actually make me feel worse. I’d feel more tired and sort of exhausted and I’d feel really down from little stresses and it could be little things like while you’re driving, sort of getting cut off or something that just triggers a stress emotion. I noticed that my body would respond to that.

             So what did I do? Through these books, I read up on cognitive behavioral therapy and it’s basically identifying negative thought patterns that you have and getting to the root of them and changing them and it wasn’t an easy thing to do, but whenever I felt bad or if I felt depressed or down emotionally in any way, I would ask myself, why do I feel bad?

             And then I would do sort of a method of deduction to get down to the root cause of the emotion. Now, I’ll give you an example of this, Dan. I was really stressed out at work and I felt very anxious and worried and I asked myself, “Why do I feel this way?” Because this is bad. And it’s because I had to prepare for a presentation in a short space of time, a few days and I didn’t have much time to do this.

             So what I did was, I asked myself, why is that a problem? Well, it’s a problem because I wouldn’t be able to prepare what I need to. And then I asked myself, why is that a problem? It’s because I won’t be ready for the presentation. Then I’d ask myself, why is that a problem? It’s because I’ll look bad in front of people and that’s where I got to the root cause. So that’s what was worrying me and stressing me out and it had a very … the mind and body had very strong connection.

             I think this is probably consistent with all CFS sufferers in that, little things can trigger us and sort of spiral our health downward and sort of perpetuates the illness.

Dan:     Do you think that’s actually what started your illness?

Luke:   I think it was a whole host of things. So I think it was, look, in my opinion, chronic fatigue is caused by chronic stress on the body. And in my opinion, I got sick because of the physical workload that I was putting on my body. So the physical stress, along with the mental stress and exhaustion from work, along with recurrent infections.

             So I think this all created a perfect storm and just sent my systems out of whack.

Dan:     Yeah. Yeah. Okay. How did your recovery then unfold? I mean, did you have help from any other doctors or anything? Or did you just continue in your own journey?

How Luke’s CFS Recovery Journey Unfolded

Luke:  Look, it was mostly my own journey. I had little pockets of help along the way. I saw a naturopath that was very understanding and she got it and she knew that … I don’t think she had a full understanding of chronic fatigue, but she knew that there was an adrenal component and infection, viral component. She had a good grasp of, a lot better than the doctors at least. So she got me onto some really good supplements and it was good just knowing that somebody else was out there who kind of understood this and got that it’s not just in my head.

Dan:    Yeah. That it’s a physical thing. So what kind of supplements are you talking like Vitamin C’s and the B vitamins, magnesium, that sort of thing?

Luke:  Yup. All three of those. Vitamin D, Acetyl-L-Carnitine, Ribose. I was on probiotics, got on some CoQ10, rhodiola, silymarin, just a host of things that you can find sort of online and most sites that know a thing or two about chronic fatigue. They will alleviate the symptoms.

Dan:    Okay. So they made you feel better? And then, how long did it take for them to help?

Luke:  Look, along the way, I noticed each of them contributed a little. So they were all worth trying for me and they all had an effect to some degree. But it wasn’t until I got on the methylation protocol that I started to see some sort of drastic results. I was recovering steadily the whole way. But when I got on the methylation protocol which is, it’s been developed by Rich Von Konynenburg. It’s a combination of B vitamins and folic acid and whatnot. That’s where I really started to improve. And it could indicate that I’ve got faulty, I think it’s MTHF. I haven’t been tested for that but genetically, I think I have that susceptibility.

Dan:    Yeah. Luke, I mean, just by listening, there’s people with chronic fatigue syndrome who have that and there’s people with chronic fatigue syndrome who don’t and there’s healthy people that have it, then there’s healthy people who don’t. So I think I understand why it can be helpful. I certainly think methylation is an issue, but I think sometimes people get too involved with it and they think they can fix everything by going down this road. Then I think they get very frustrated. But it’s great to see that it really had an impact on you. Were you also doing your cognitive strategies at this time? Or did that come later or before that?

Luke:  That came before the methylation. And that was slowly building my health back up.

Dan:    Okay. That’s the combination of all these strategies that seems to really have been the key for you.

Luke:  Absolutely. There’s no one short answer to it. And I’ve talked to a lot of sufferers now that are looking for an answer and they know that I’ve recovered, but they’re not really hearing what I’m saying. They want to hear that there’s one supplement that they take and that’ll be it for them. They want a short answer. They’re not open to the fact that it’s a whole combination of things.

             Fix up your diet, experiment with eliminating gluten, eliminating dairy, fix up your sleeping patterns, get rid of stress.

Dan:     Did you have … sorry to interrupt you, Luke. Did you have gut problems?

Luke:   Did I have what, sorry?

Dan:     Problems with your gut and your digestion?

Luke:  Absolutely. I had IBS and my gut would rumble day and night, nonstop. I could hear it rumbling and it took me a long time to get over that.

Dan:    Did you find that diet changes made a big impact or were they just another contributing factor?

Luke:  It’s made a big impact. I’ve eliminated gluten completely and my health is much better as a result. I don’t believe I’m celiac and I haven’t been tested for it, but I know for a fact that when I take out the breads and pasta and everything else that has gluten, I know for a fact that I feel much better.

Dan:    Yeah. So how long did it take for you to make your recovery then?

Luke:  Look, it’s been two years and at my worst, I was probably functioning at about 15% to 20% of my lifestyle, and I noticed I could quantify that in the gym as well, because I’d always take notice of the weights I was lifting and the repetitions I could do, and I notice I’d diminish to about 20% in the gym.

Dan:    It’s very interesting that you say this. That’s an interesting attitude because a lot of people just completely stop when they feel really terrible. But it’s interesting that you persisted. You’re clearly very driven with your exercise. It’s a very important part of your life. I have met other people, by the way, who have continued to exercise all the way through, but most people sort of just go, “I feel terrible. I can’t do anything.” The last thing they think of is exercise. I mean, if you felt worse after doing exercise, what made you continue to do it?

Luke:  I was a bit crazy, I guess. But I wanted to … I knew that exercise was good for my body. And I suppose I had the hopes that eventually, slowly, I’d recover and I’d kick this and I probably overdid it. And I mean, I would suffer as a result.

Dan:    Because you were saying that you were feeling often worse after the exercise. Did you try changing how you were exercising to try for that not to happen?

Luke:  Yeah. I just had to do a lot less. So in the gym where I’d be lifting say, 80 kilos, I would drop that right down. I mean, slowly, I got to a point where I was lifting half of that and less like down to the 20%. So I really had to slow down and my sessions went from being say, an hour, an hour and a half down to just 30 minutes. And I’d take my time and I still wanted to exercise because even though it made me feel bad, like immediately after exercising, half an hour to an hour, I’d feel kind of sick. Like a flu has just come over me. But then after that, I’d bounce back and I’d actually feel better for doing it.

             That’s just a personal thing. I know that everybody’s different. I know that a lot of sufferers with chronic fatigue stopped completely. But I was convinced that it wasn’t the answer for me. I was convinced that exercise was still good for my body. And I suppose some people dismiss how severe my condition was by saying that I was still able to do one or two sessions a week. But you got to look at the fact that I went from doing basketball say, four times a week and doing gym work five times a week. So nine sessions down to one. That’s quite significant.

Dan:     That’s a very interesting point you make because interestingly enough, the people that I have seen continue to exercise throughout, even when they were very ill, were actually people who were tremendously fit and tremendously active beforehand. So it is perhaps a very interesting point you raise because it is perhaps really just a reflection of the fact that we drop maybe by 80% activity and our capacity and for the average person dropping by 80%, given the fact that they may not be starting all that high, basically means that they end up in bed. Whereas other people who are very active, that do a lot of sports, when they drop 80%, they can still stumble around in a fog.

Luke:  Yeah.

Dan:    And then, as you did all this, I mean, at what point did you then, so it took about two years, did you say? To recover?

Luke:  Mm-hmm.

Dan:    Did you turn around? I mean, when was it suddenly obvious to you that hey, I’m getting back to normal? Was there any sort of AHA moment?

Luke:  The whole time through, before I even started recovering, I created the reality in my head that I was going to get better and I would say to myself, “I can and I will recover. I can and I will.” I convinced myself mentally that it’s possible. That was hard to do.

             Once I did that, I’d notice little things along the way. And I couldn’t directly connect them with a particular supplement or a particular strategy. Was it the Vitamin C or rhodiola? Or was it the extra sleep or was it the pacing? It was a combination of things. And I would just notice, I’d go back to the gym and I’d start to feel like, “Hey, I can lift a bit more here and I’m there for a bit longer.” And I suppose that’s how I knew that I was getting better. Each step of the way, I’d see small pockets of recovery. And it was encouraging and it kept me motivated.

Luke’s “Graded Exercise Therapy for CFS”?

Dan:     Did you basically try to increase your activity on purpose? Or did you just increase it when you felt better?

Luke:  Just when I felt better.

Dan:    You didn’t push yourself per se?

Luke:  Yeah. I mean, I did push myself sometimes and I went beyond my envelope and I had relapses at times, but I realized that if I go in and do just some light stuff, weights or just a light jog, I realized that just a small bit was going to be enough to keep me feeling better and start to recover.

             I’ll give you an analogy. One of the doctors who dismissed me with nothing, he did give me a good piece of advice, because I told him about my exercise and he said, he asked me, “Luke, when you exercise, do you feel buggered afterwards?”

             I said, “Well, yeah.”

             And he said, “Well, that’s not supposed to happen.” And he said, “What you do is go out, do a light walk, a light jog. As soon as you start to feel a bit of sweat, stop and that’s enough for the day.”

             And so, he was getting across to me that you have to slowly build your body back up. Don’t push it to the point of pain and then stop. And that concept, I applied through my recovery as well.

Dan:     But didn’t he know, no pain, no gain?

Luke:  I think it was one of the doctors that didn’t give me any more than a couple of minutes.

Dan:    I’m just making a joke because it is really such an ingrained thing in our society. No pain, no gain. And this thing, this whole concept of overextending ourselves all the time is considered to be normal as opposed to something that might not be very healthy for us.

              I always gain new insights and different perspective when I speak to someone that recovered. What would be your main advice to someone else about recovery?

Luke’s CFS Recovery Mental Approach

Luke:   I think the first thing is to get positive. I did come across a quote that inspired me and that was, “The energy of the mind is the essence of life.” And one thing I haven’t actually mentioned was I started to do brain training as well. I had a Lumosity account. I was doing brain games to try and boost my cognitive activity and build my brain back up.

              My advice to people is to get positive and believe that you can recover. If you don’t believe it, it’s not going to happen. I’m convinced that you’re not just going to suddenly get better. You’re not going to stumble across a prescription drug or a supplement that’s just going to heal you. It’s a collection of a number of different factors. You also need to make changes in your life.

              So I tried to change things up as much as I could to change my environment because I knew that what I was currently in, I just had a sense that it was perpetuating my illness. And so, I would say to people who want to get better, have an open mind. Don’t necessarily dismiss something straight away. Don’t look for that golden bullet. And when I say golden bullet, that magic pill to recovery. It’s that old school advice from your mum and your dad about sleeping and eating right and staying positive and really paying attention to and nurturing your body.

Dan:  Mm-hmm. Very sound advice. What was it like for you to go back to work fulltime? Was it scary? Were you worried about relapsing?

Luke:  Definitely. I did go back to fulltime, probably prematurely. And I was scared that I wouldn’t be up for the job. I was scared that my mental abilities would not get me through at work. But I just found ways to hide that when I needed to and to try and take advantage of the most productive hours in the day. So whether that would be 10, 11 o’clock in the morning or in the afternoon, whenever I felt good, I’d just go at it and get the most important things done.

Dan:  And then, when you came to a point where your brain was sort of working again, normally, I mean, was that a big relief for you? Was that a big part of your whole experience?

Luke:  Absolutely. Not just a relief, but such an excitement. I mean, I was so happy. I felt like I regained my life. I felt like I was open to new opportunities and new things, because at the worst of my illness, nothing would make me happy. Nothing would excite me. I just felt very flat all the time.

Dan:  It’s difficult, isn’t it? When the brain isn’t working properly, I think most of us don’t really appreciate that until it happens. And I have come across many people who often are quite intellectual and deep thinkers and perhaps were quite good at school and when this part of the illness strikes them down and they can’t use their brain anymore, they often find it very, very upsetting. So I certainly can relate to that myself too and it’s quite something when you can get your brain back.

              Okay, Luke. Thank you, Luke. I really appreciate you sharing your story and your insight and your inspiration and thanks for showing someone else that light that recovery is possible and I wish you all the best and your continued health.

Luke:   No problem. I appreciate the time and I’m just glad that I can share my story and I hope it helps other people.

Dan:    No worries. Thanks, Luke.

Luke:  Thanks very much, Dan.

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Britt

Thank you Luke for sharing your story. Very interesting😊

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