Remarkable recovery after over a decade of illness:
From bedridden with Fibromyalgia/CFS/MCS to fully well in 12 months
If you are bedridden, bedbound or couchbound, however, you like to describe it, it can be easy to wonder if that changes your possibility of recovering from Chronic Fatigue Syndrome, Fibromyalgia or Multiple Chemical Sensitivities.
Peter shares his emotional journey including some of the low points of his illness and what life is like now.
Peter recovered using the ANS REWIRE recovery program and made a full recovery after 11 years of illness in about 12 months. As he describes, he is more than 100% recovered – sounds odd right? Well, he highlights how we lose perspective of what is normal and only really fully rediscover it when we are fully well again. Those in the program can also watch his insights interview where he discusses the different aspects of the program.
Please leave a comment at the bottom of the page!
Dan Neuffer: Welcome to another recovery interview.
This interview is with Peter from California.
Peter recovered after a decade of severe illness, experiencing CFS, fibromyalgia, and multiple chemical sensitivities.
I’ve been sharing interviews now for many years, with people who recovered of all manner of ways, but these days, it’s my privilege to also share stories with people that were touched by CFSunravelled.com and ANS REWIRE.
Peter had been bedbound for two years when he started his recovery journey and enrolled in the program. Whilst, of course, I understand intimately what he did to recover, I’m still completely inspired by his determination and resourcefulness to move forward when things were so difficult for him. I had the opportunity to speak with him recently, and he told me his whole story of how he had been ill and what he did and how he recovered. He shared his insights to recovery.
Here is his story. I hope you’ll enjoy the interview as much as I did.
Today, I’m speaking with Peter. Peter is in California.
Hi Peter! Thanks for sharing your insights from recovery.
How Peter's Journey To Being Bedbound With CFS, Fibromyalgia MCS began
Peter: Hi Dan! My pleasure.
Dan: Now, you obviously got to see some of these videos. How does it feel to be doing one?
Peter: I never expected to be here. I have to be honest with you.
Dan: Yes, for sure.
Just to start off with a little bit of background for people, obviously, when you started the program, you were very severely ill. You had been sick for about a decade.
Dan: At the point you started, you were actually bedbound. Is that right?
Peter: Yes, that’s correct.
Dan: Can you just very quickly tell us, was there anything in particular that triggered your illness initially? Or did it just come on slowly?
Peter: Well, my thoughts are, yes, that it was triggered. Looking back, I think triggered from severe emotional trauma. I had a really rough childhood. At some point in my life, my dad ended up committing suicide. I was just emotionally and physically abused. But then, you know, I didn’t really tell anybody, and I was pretty successful in my younger years, and I went to college and had my own business, but then things started just kind of gradually sneaking up on me, but I did not relate it to anything emotional. I literally thought it was allergies at first, and then digestive problems, but then it just kept snowballing – one thing after another. It got to the point where I had to give up everything, basically.
Dan: Yes, I know you went through the usual road of seeing lots and lots of doctors, lots of alternative people, spending enormous amounts of money.
Peter: Yes, I nearly went bankrupt. I was $50,000 in credit card debt from doctors. That was just from doctors.
Dan: Yes. And then, at the end of that, you ended up being bedbound, struggling to do anything.
Peter: Yes, and that came on, you know, the first eight years, I was able to work and I just kind of toughed it out. And then, I had basically another traumatic emotional event related around my family. It was basically a couple of things – like, three or four really, really traumatic things that happened in about a year’s worth of time.
Peter: You know, every time something happened, I just got knocked down two steps lower. And then, from that point, I didn’t recover. From then on, I didn’t know what to do
Dan: Yes, so you were at this point.
Peter: I thought I was dying.
Dan: Yes, and those words are not to be taken lightly, and I don’t think that they that they are hyperbole in any way. I think anyone who experiences some of the feeling when we’re bedbound can relate to those words. It gets pretty rough
Peter: Yes. You know, sometimes people think “bedbound,” that you’re just hanging out in bed, watching TV all day. But, for me, bedbound, I literally felt like I was almost in a coma. I had trouble literally lifting my limbs. I was unable to climb. I was more like couchbound than bedbound because our bedroom is upstairs. I was unable to walk up a flight of stairs. So, yes, it was rough.
Dan: Now, you also have pain, is that right?
Peter: I did. You know, I had pain, and the doctors basically said, “Unknown origin.” I had severe pain in my hands, and I use my hands. I’m a musician and I also work with my hands for a living. I’m a furniture repair specialist. I got to the point where I was unable to open up a door and I couldn’t turn the key in my ignition in my car because of the severe pain in the joints in my hand, and I also had severe pain in my shoulder, one of my knees, and I had severe pain in my foot to the point where I was on crutches for six months. All the while, I was seeing orthopedic surgeons, and I was going for physical therapy, and I was seeing acupuncturist, and nothing was working.
Now, I’m good to go – I mean everything. I’m playing tennis. I mean, playing tennis puts a lot of pressure and also woodworking. You know, today, I started work at 6:00 in the morning. I worked an 8-hour day. Here I am, and my joints don’t hurt, and I feel good.
Dan: Yes, it’s wonderful to hear.
Can you tell us a little bit more about what it was it like during those many years that you were sick and the range of symptoms that you had? Can you tell us a bit more about that?
Peter: Some of my worst symptoms were severe environmental allergies, severe fatigue, flu-like symptoms, irritable bowel syndrome, nausea, extreme cold hands and feet, difficulty with speaking, visual disturbances, electrical jolts throughout my entire body, severe insomnia, very dizzy and off balance. I also had a feeling in my body like my whole body was vibrating with electricity. Basically, the symptoms, some of them would come and go over time. But, at my worst point, I pretty much had all of these symptoms.
At some point, for the first maybe eight years of the illness, I basically was still able to work. However, there were often times where I had to stop or miss out on family activities, parties, restaurants – that kind of thing. I often had trouble thinking clearly. I had severe brain fog. The last two years of having chronic fatigue syndrome, I was unable to drive a car. I ended up having to sell my business, I owned a furniture repair business. I was no longer able to do that. My wife had to drive me to all of my doctor’s appointments because I was unable to drive. She also had to fill out all of my paperwork because it was almost like I just couldn’t comprehend what was written down. I barely could even write my name.
Peter's experience with Multiple Chemical Sensitivities
Dan: but you did also experience chemical sensitivities, multiple chemical sensitivities, is that right?
Peter: Yes, I started out about ten years ago. I woke up one morning. It started out with environmental allergies. I woke up and my eyes were swollen shut. My wife took me to the hospital, and they said, “Just allergies.” They sent me home with some allergy medication and it did not work at all. I never had allergies in my life at all and then literally they came on in one day. I had them. I had no allergies and then the next day, I had severe allergies. Along with that came severe allergies to cigarette smoke. I used to be a musician. I used to play in smoky night clubs all the time. It never bothered me at all. Now, I couldn’t even walk past somebody outside without my throat burning and my sinuses burning.
Dan: You smell it. You’ll just smell it a little bit and – boom – you’d have the symptoms, yes?
Peter: Oh, yes, it was intense. I’m talking about outside, being 20 feet away from somebody outdoors. That’s how sensitive I was. And then, I also had chemical sensitivities. I would go out to dinner with my family and I would drink the water and I’d say, “Did you guys taste that? What’s with this water? It tastes like chemicals,” and nobody else could taste it except me. So, I’d end up bringing my own water everywhere that I went.
You know, my daughter would put on nail polish with the windows open and I’d be horrified. I could smell it from 500 feet away and it would make me dizzy, it would give me a headache. I literally almost feel like I was going to faint from it – gasoline and all those things.
When first started having these symptoms, I did find an alternative practitioner who did some kind of energy work on me, and it helped with the multiple chemical sensitivities. However, you know, she treated me for those, but I found that every time I got treated for something, it would just morph into something else, if that make sense. I didn’t understand why. You know, I thought, “Oh, I’m going to rid of these allergies then I’ll be great.” And then, literally, as I was getting treated for the allergies, something else would come up, you know? Then, you know, the whole room would start spinning. When I’d go in an elevator, I’d get off and I’d literally almost fall down. Crazy vertigo.
Peter's long list of symptoms with CFS, Fibromyalgia and MCS
Dan: Did you experience any other sort of symptoms?
Peter: Sure. I had severe insomnia. Even though they call it chronic fatigue syndrome, to me, it felt more like chronic flu syndrome. I constantly had a low-grade. My hands and feet were ice cold. I had electrical jolts shooting down my extremities. My arms and legs would fall asleep in a matter of, like, ten seconds and for no apparent reason.
Peter: I had severe digestive issues where I thought I couldn’t eat anything.
Peter: That was a nightmare. I don’t have that now.
Peter's strange experience being diagnosed with Fibromyalgia
Dan: No, it’s all good.
Can you tell us a little more, Peter, about how you got diagnosed?
Peter: At one point, I had injured my shoulder and I went to see an orthopedic surgeon. One of my other symptoms that I had not taken seriously was I had lost a significant amount of weight and they’d noticed that I had lost about 15 to 20 pounds. I hadn’t weighed myself during this time. I knew that I’d lost weight, but I didn’t really know if it was an alarming amount of weight, but I actually lost so much weight that most of my muscle tone had also gone. I used to be a runner and I was very athletic. I played soccer and tennis. I used to work out. That put me on my quest of trying to find out through the mainstream medical establishment what was finally wrong with me.
When I saw the orthopedic surgeon, he basically told me that he thought I had cancer and that I needed to go to the doctor the next day and do whatever test necessary to eliminate or to find out if I actually had cancer or just to find out what was going wrong with me.
At the end of all of the testing that I did, I finally ended up going to Stanford Medical in California to see a specialist there. I had a CAT scan, MRI. I had to swallow a camera, all kinds of imaging and blood work. As other people who are watching this probably have gone through a similar experience, it’s a diagnosis of elimination, I believe.
They basically are just trying to eliminate brain tumor, cancer, autoimmune diseases, and it took me a year of testing to eliminate all that stuff. There’s a long waiting list for a lot of the tests that I had to do, and the tests themselves, they brought me down too.
You know, when I started doing the tests, I wasn’t bedbound. But, by the time I was done with all those tests and done with dealing with doctors who were telling me that they were sometimes getting frustrated with me and they were telling me that I just needed anti-depressants or anti-anxiety medication. I did not feel depressed as I know some other people have described it. I really wanted to do things. I know, when I’ve heard other people talking about depression, they don’t want to do things sometimes. At least for me, I just wanted to get better. I tell them, “Well, yes, of course, I’m depressed. You’d be depressed if you felt like I feel,” but I honestly think that any depression that I had was a result of my illness. It wasn’t just the depression that was causing any of the symptoms.
Dan: For sure.
Peter: Finally, they eliminated all the major things that they thought could be wrong with me. The doctor basically casually just told me that he said I had chronic fatigue syndrome and fibromyalgia. I was happy to hear that. It was actually kind of a relief to get some diagnosis even if it didn’t really seem like a very good diagnosis.
After he told me that, he turned his back and started walking out of the room. I said, “Hey, what’s going on? Where are you going?” He said, “I’m going to be honest with you. There’s nothing we can do for you.” They just told me that there was no treatment or no treatment that they said would actually cure chronic fatigue syndrome or fibromyalgia. And then, he just walked out.
Now that I had a diagnosis that I believed to be true, it gave me something to work with. With the vey little energy that I had, I did spend time – every minute I could – scouring the internet, trying to find some kind of complete cure or partial cure for chronic fatigue syndrome. That’s when I came upon ANS REWIRE.
Peter's turning point leading to his recovery from Fibromyalgia, CFS and MCS
Actually, before I found ANS REWIRE, I found CFS Unravelled and I think I watched all the videos in about two or three days of the recovery stories. That really boosted my morale because, actually, at this point, I was suicidal. I had been bedridden for almost two years and I just felt like I was a burden to everybody. I basically couldn’t even take care of myself. I have two children and a wife.
Leading up to the ANS REWIRE program, I had been trying to get well for approximately eight years. I had gone to mainstream medical doctors – all of which basically found almost nothing wrong with me – at least for the first eight years.
Basically, my experience has been, if they don’t find anything in blood work or some basic imaging like an MRI or a CAT scan – at least for me – they didn’t really want anything to do with me after that point. They just kind of said they couldn’t figure it out and sent me on my way.
I had a different experience with alternative practitioners who were more than happy to deal with me, but I didn’t really see great results with most alternative medicine. It was mainly people saying that I likely had candida. I had one practitioner that thought I had mercury poisoning. As a result of that, I ended up getting all my teeth extracted that had root canals in them. I also had all of my mercury fillings removed. That ended up costing me about $20,000 and I thought for a while that I was feeling somewhat better, but then I ended up – you know, a year or two later – feeling worse than ever. My thoughts were that probably had little to do with why I was feeling so ill.
Every two to three years, I’d find another alternative practitioner and I ended up taking huge amounts of very expensive supplements. Every time I saw a new doctor, I did a diet change, and all of this helped a little bit, and it kind of kept me going for a while until I had about the eighth year and then I just started progressing downward from there. I was working with an alternative practitioner who basically just said I had to be patient and do whatever she said. The longer I stayed with her, the worst I got – until I was finally bedridden. I guess it was at that point that I had found ANS REWIRE.
Dan: Everything you’ve tried, nothing worked. You’ve been diagnosed by Stanford University with CFS and fibromyalgia. You decided to go on the internet, and you find an online program. What on earth were you thinking enrolling in that?
Peter: You know, to be honest, your program, I felt like I had nothing to lose. I don’t know how much it costs now. It was very affordable. I had spent tens of thousands of dollars over the last ten years, and not one of the programs that I did was geared specifically towards chronic fatigue syndrome or fibromyalgia.
The previous doctors that I had seen, you know, the alternative doctors had said that there was something else wrong. They never used the words “chronic fatigue.” They thought my fatigue was due to digestive issues or poorly functioning liver or kidney or candida or parasites or any number of things I was treated for. None of it worked.
Dan: What I’d like to ask – you know, for people who are listening – how do we go from being bedbound, struggling to get out of bed, struggling to do basics like looking after yourself and even communicating and all this kind of thing? Where do you go from there towards being recovered? I mean, what are the steps in-between? Obviously, you were watching the videos and you were finding it a challenge at times even getting through the videos, is that right?
Peter: Yes, when I first started watching the videos, I was listening to the video and, while I was listening to it, I thought, “Oh, this is great!” You know, I’m listening to somebody – Dan – who has had chronic fatigue syndrome and who has recovered and is actually explaining to me what he believes to be the root cause. I had never heard anybody have this theory. All the mainstream doctors that I talked to said, “Hey, we don’t know, and we don’t have any treatment.”
Yes, listening at first was a challenge. As I was listening, I thought, if it was a half an hour video, the whole way through listening, I was thinking, “Yes, this is great information,” and then, after the 30 minutes was up, I literally couldn’t remember anything. I mean, I could remember maybe a general concept, but if there was anything specific that I was suggested to try on my own, and maybe there were some steps involved – like, step one, two, three, and four – I’d try to repeat them back to myself and I couldn’t remember.
What I did for me, you know, I’d listened to the videos maybe three times in a row – an individual video – and as I started getting just a tiny bit better where I could actually sit up in a chair and hold the pencil, for me at least, I’ve always liked to physically write things down so I can refer back to them, so that helped me a lot – making notes.
Sometimes, I would actually write what I felt to be the most important passage that I would just write out word for word, and then I would review it. I’d just glance at it every day. I’d go through my notes for the video. I went through the whole series of videos and then I would review my notes. Pretty much the first day that I went to the last video, I would start over from the absolute beginning again. I did that probably four times all the way through. Even the fourth time that I went through the videos, I was still picking up on things that I either didn’t quite understand at the time or they were just reinforced to the point where I was like, “Oh, I get that!” At some point, it almost just became a part of me – like I just know it now.
Dan: That’s obviously a great sense of persistence. Obviously, as you were watching the videos, it strongly resonated with you and gave you the confidence to persist. Otherwise, you wouldn’t have done so much work.
Peter: Yes. You know, to be honest, I didn’t really get better that fast. I know I’ve heard stories about other people recovering very fast. I had this vibrating, electrical – like, my whole body was vibrating with electricity. This went on for over a year and I was feeling extremely weak and winded where I would see my car in my driveway and I’d be running low on food and it would take me sometimes two days to get up the courage and energy to actually make that trip of a hundred steps out of my house.
Dan: At what stage did you then decide to start taking the actions? I mean, in the beginning, you were just watching. How do you go from watching and feeling at your very worst to actually starting to do something? What could you do in the beginning? What were your first steps to get you out of that really low point and how did you progress with your action?
Peter: Well, one of the first steps was listening to the videos and then also doing the meditation every evening. I felt that was a huge help for me – just calming my mind. Basically, I know, in the ANS REWIRE program, you were talking about taking this on from multiple different aspects at once.
I decided that I was going to start doing yoga again – just very, very basic yoga – even if it was just holding a pose for a couple of seconds at a time. I was also doing the meditation every night along with the CD that comes with the ANS REWIRE program. It sounds kind of corny, but I heard on one of the CFS Unravelled recovery stories where a woman was giving herself a massage every night in the bath. Basically, just loving yourself.
At some point, I almost had to give up fighting in the way that I was fighting – maybe not fighting but just being okay with being in the situation that I was in with my illness and just being more loving towards myself and more patient and trying not to get angry with myself. That went a long way with being patient – being loved. I was doing that every night. I would give myself a massage in the bath. After that, I would spend about 15 minutes – not out loud, but just to myself – you know, picking out things that I was actually thankful for. It didn’t seem like I had too much to be thankful for at the time but, if you start searching, you can find things.
You know, I had a feeling that this was going to take some time, so doing those little things – the meditation, the yoga, the self-massage, and nurturing myself – gave me a little bit of extra strength so that I didn’t quit. It seems like it would be easy to give up. To me, that wasn’t an option.
Dan: I think what you’re sharing, Peter, is really, really insightful. Obviously, surrendering to the illness – not giving up, but surrendering and accepting it – and the self-nurturing that you’re talking about, you know, gratitude is very, very powerful. I would say that tapping into gratitude is one of the most powerful emotions because it becomes very all-encapsulating. If you want to get rid of anger and all the frustration and all of this, if you tap into gratitude, it’s like a shortcut.
Peter: Well, I was one angry fellow for a number of years. I guess I kind of had a lot to be angry about, but I guess I didn’t realize – on some level – the impact that it was having on me. I agree with you. I feel like I’ve come a long way.
Peter expands his recovery strategies as he make recovery progress
Dan: Obviously, you started with this nurturing and watching the videos and doing the meditation. You’re getting to the point where you are able to somewhat get out of bed, even to hold a few yoga poses, and things like that. Is it at this stage that you’re starting to introduce more strategies?
Peter: Yes, I did. Since I did the ANS REWIRE which I found online, I was just still researching what other people were doing to help themselves out with recovering from chronic fatigue syndrome or just helping them in their lives in general. I came across this practice called Qi Gong. I don’t know exactly how to describe it, but it’s basically what I was doing was movement and breathing at the same time. I was almost looking at it like meditation while moving. I found a website that had video-recorded classes and they were about maybe 20 minutes each. It was beginners. Qi Gong is very gentle, and I ended up adding that into my routine. I did that at least once a day for probably a year and a half. You know, I think that helped.
It's hard to say which one helped the most, but I would say that helped. I did change my diet. I had stopped completely drinking alcohol. No alcohol which turned out to be easy for me. I stopped drinking coffee. I was eating only organic food. I stopped taking 95 percent of the supplements – almost 100 percent of the supplements – that the last couple of alternative practitioners had told me to take.
One more thing, I started going every other week to see an acupuncturist. She was giving me fresh acupuncture herbs where I’d have to make my own tea and drink that throughout the day. It had to be hot. I lost a lot of weight, and my hands and feet were extremely cold even when it was 80 degrees out. I went to see a neurologist at some point when I was at almost my lowest point and I took off my shoes for the exam and my feet were blue. That’s how cold they were.
The acupuncturist basically had me wearing long underwear and a hat indoors, taking a hot bath twice a day, drinking this hot tea all day long. Yes, I guess I was doing a lot of things. And then, at some point, when I started to feel that I was maybe 40 percent recovered which was at the point where I was driving again but I was still feeling disoriented and weak pretty much all the time, I had lost a good portion of my muscle mass along with any kind of fat on my body.
I started exercising again, but it was very, very gentle. It sounds kind of pathetic, but I started out doing one sit-up a day for a week. I actually had trouble – believe it or not – doing one sit-up. I guess some people call this graded exercise, but for myself I can only do graded exercise with doing all these other things because I thought I was going to crash again if I exercised too hard.
Basically, I did one sit-up a day, then two sit-ups, and blah blah blah. I eventually got to the point now where I’m doing 120 sit-ups a day. I was also doing light weights. I was literally using one-pound weights and just exercising my arms and using some exercise bands. It was rehabilitation – like what a stroke patient or somebody would go through.
Dan: Peter, with all this exercise, now obviously in the past – I’m imagining, and I don’t know, but I’m expecting that, in the past – when you exercised, you would get flare-ups or setbacks from that, no?
Peter: Yes. You know, the thing is, it sounds kind of pathetic because I hear all these other people saying that they exercise, and they had a flare-up. I never knew what was causing my flare-ups because I always exercised, and I always worked physically hard. I would find myself in bed for two or three days at a time – almost unable to move, severe digestive issues. I literally just thought it was that I ate some bad food or that I had some kind of virus.
I never knew it was from exercise and that it could be corelated until after I got diagnosed wit chronic fatigue and I started doing your program and I started learning about other people having it. I was kind of almost forced to work one day for a couple of hours. I had to do something around the house that just had to get done. I was assisting somebody else. I felt bad for about a week after that. I’m like, “All right, this is what people are talking about.”
Now, I don’t get that though. Now, I go out and I push myself. I feel like I used to feel after I exercise. I come home and I feel calm. The next day, I wake up and my muscles aren’t sore. I don’t feel like I have a hangover. It’s almost unbelievable.
Dan: Obviously, one of the key things is the REWIRE process. Presumably, that was part of your exercising as well – how you looked at your activities.
Peter: It still is! One of my things that I say every night before I go to bed when I’m doing my little gratitude statement – I think you are number two on the list; you’re right after my family – I say, “Neurons that fire together wire together. Make every choice your best choice.” And then, I follow that up with “stop, think about something else, do something else.” The “stop, think about something else, do something else” has helped me immensely – not just with my chronic fatigue syndrome but with the way my mind works. I feel like I don’t tend to go down these rabbit holes of my past where I’m reliving episodes that happen that were traumatic for me.
Now, I can think about them and it’s much more on the surface. I’m aware that it happened. And then, I just think about something else which is awesome. I used to spend three or four hours dwelling on these events that happened. Now, I’m able to think about it or I can even talk to somebody about it and I don’t get upset. And then, I go and enjoy my day. It's been helpful on numerous levels.
Dan: Well, all these things are obviously interconnected. I guess one of the things I want to tap into is, you know, when we are so severely ill and we’re couchbound or bedbound, and then you started with the REWIRE. Did you start easily with the REWIRE process? Did you do that early on? Or did it grow or change over time?
Peter: I don’t remember how fast it came up in the videos. It came up fairly fast though, I think. I started doing it as soon as I was able to write it down because I couldn’t remember it. It’s a very simple process but, when you have chronic fatigue syndrome and brain fog, nothing is simple. As soon as I was actually able to write it down, and I would refer back to it numerous times during the day, I started doing it. It’s one of those things. It’s a fairly simple process, but it’s like anything. You actually have to do it.
To be honest, I wasn’t sure it was going to work because, for me at least, the results were so gradual that I honestly wasn’t sure if it was going to work, but I was not going to give up. My motto when I went into this was, even if it took me ten years and I got ten percent better every year, that was fine because the alternative to not getting better was not having a life.
Dan: Obviously, as you’re building this momentum and you’re not – let’s say – halfway recovered, I mean, at this point, I guess you must be feeling more confident about the whole approach, giving you a boost in terms of your persistence, yes?
Peter: Oh, yes, absolutely! That’s one of those things where then, you know, I started doing more. I know it says that in your program at various points. I started pushing myself, but just a little bit because I kind of felt like, if I didn’t, you know, I still had some fear, obviously, because nobody wants a relapse, but I figured, you know, if I was at 50 percent, I would try doing something that I thought was maybe five percent above where I thought I could do.
It was kind of like doing the exercise where, if I was up to ten sit-ups, I would say, “All right, I’m going to do 11 tomorrow.” I would go out for a walk. I literally started out, I’d go for a walk down to my driveway and back up to the house, and then I would literally add, maybe every week, I would add 50 feet to that. And then, at some point, I was able to walk around my block which was amazing.
Peter's experience of losing chronic pain and fibromyalgia recovery
Dan: Let’s me ask you then, let’s take another tack and talk about pain. How did you progress with the pain and resolving the pain whilst you were in the program? Because you had pain in your hands and your knees and all over the place.
Peter: This sounds kind of weird, but I actually didn’t address the pain. I listened to your videos a couple of times, and I did the REWIRE technique. But, at the time, I thought the pain that I was having was from something else.
I honestly didn’t really know that much about fibromyalgia. I know that people said that they have pain with chronic fatigue syndrome. I just literally thought – and wrongly so – that maybe my pain in my hands was just from being a furniture repair person or the furniture builder and that I had used my hands too much, but they never really bothered me when I was working. It was only when I was unable to work.
The same with my foot. You know, I used to run five or ten miles – no problem. And then, as soon as I got bedridden, I was having all these problems with my joints. I didn’t address them specifically, but I did recover from all those pains. I’m assuming that whatever I did just worked on everything.
Peter's experience with setbacks during recovery
Dan: Tell me, did you have any setbacks or any crisis of confidence during your recovery?
Peter: I had a little bit of a crisis of confidence. I wouldn’t really necessarily call it a setback, but I probably started back into working a little bit sooner than I would have liked. Unfortunately, I ran out of money. I was on disability for about a year which didn’t really amount to very much. My disability ended. I had sold my business when I got sick, and I had made a decent profit on it, but we went through all of that – every penny of it.
I started back work when I was probably about 80 percent recovered. I’m just very thankful that I had the sense to start off very slow and trying not to get mentally or physically overwhelmed. Luckily, I still considered my health progress with ANS REWIRE and all the other things I was doing – the yoga. I said, “No matter what, I’m not going to give that stuff up in exchange for work.”
What I did was, the other things came first, and I really got into work fairly gradually. Luckily, my brain fog started clearing and I was able to do my own website. I schedule with customers, my own marketing – all those things. I just assumed when I had chronic fatigue that I could probably still do those things. I didn’t realize it was going to be so much of a brain thing.
I don’t know if I’d call that a crisis of confidence. But, you know, at some point, starting off work when I wasn’t 100 percent, it was hard. It was challenging because, you know, being 80 percent, there was a big fear factor. If I got to a job and I was supposed to be there for five hours, doing something physically, I didn’t want to overdo it and I also didn’t want to let customers down because I had done that before. You know, I’d scheduled this big job that was supposed to be ten days working in this hotel, and then I crashed, and I was two years until I was entirely recovered. That was still haunting me in my mind.
Dan: Because you’re feeling very fragile, obviously.
Peter: Fragile, yes, definitely. I didn’t want to blow it. I didn’t want to feel like I had to start over again because I had come so far. I guess, coming so far, you realize how much you have to lose, if that makes sense.
Dan: Yes, absolutely.
Peter: I did not want to be back where I was.
Dan: At what stage in your journey did you go, “This is actually going to work”? I mean, when you were first stuck and you’re bedbound and you’re watching these videos, at what stage did you go, “Wow! I think I might get better”? At what stage did you go, “I think I’m actually going to get all the way better”?
Peter: Well, believe it or not, I guess I thought I was actually going to get better when I first started watching the videos. I thought that at least I had a chance, and that’s all I wanted – a chance.
You know, watching other people’s recovery videos made me think, “Hey, you know what? I do have a chance.” Even though it took me a long time – at least it seemed like a long time when I was going through it – just knowing that I had a chance and that I was not going to hard on myself and that I would literally take it one day at a time – sometimes, one hour at a time – and that I’d wake up in the morning. For a while, I just thought, you know, I’m going to wake up and, all of a sudden, I’m going to snap out of it. I’m going to be 100 percent. It didn’t happen, but I was okay with that.
Dan: I think that’s really insightful that you were okay with it.
Peter: I don’t know exactly how I got to that point. Maybe I got to the point of being okay with it because I hit rock bottom, I think. I was literally suicidal. If I was going to be like that, I just had decided that this was not the life that I wanted to live. Seeing other people’s recovery stories was probably what did it for me – to know that I had a second chance at life, and I was going to try to do it right, and I was going to try to take my time with it. I figured, “I’m in it for the long haul” – like an investment. You know, an investment in myself.
Dan: Absolutely. Well, you’ve come full circle now, haven’t you?
Peter: I have, yes. I feel good, and I wake up every day and I feel good.
Life after recovering from a decade of Fibromyalgia, CFS & MCS
Dan: Look, I know you mentioned that it’s really impacted every part of your life. Just for people listening, can you also just share some of the things you’ve been able to do that you never thought you’d be able to do again? What’s life like now for Peter Brown?
Peter: Well, one thing is I never thought I’d be having my own business again in any capacity. I just didn’t feel like I’d be able to do that. I’d since started my own furniture repair business and it’s been extremely successful. I feel like this is very rewarding. It’s physically challenging and mentally challenging and I feel like I’m up for it.
I’m also back to playing guitar again. I’m writing songs. I’m in the process. I just made my own website and I’m going to be marketing my music to film and TV. I think that’s going to be successful. I’ve got enough energy to do that.
You know, my favorite pastime right now is playing tennis with my wife and my son. I feel like I can pretty much play any day I want. Before, I always had to say, “How am I feeling?” Usually, I wasn’t feeling very good. You know, that’s another thing as far as my symptoms. I was having a lot of trouble with my eyesight – like, perception. That was another severe symptom for me. The lighting would look dim.
My hand-eye coordination – I’d see the tennis ball coming at me and, sometimes, I’d know that I have to swing my racket, but sometimes the ball would go right by me before I could even. My judgment was just off. It was the weirdest thing. Now, I can see the ball coming, and it’s almost like slow motion, and then everything just feels perfect. I don’t have any worries that I’m going to hurt my joints anymore – like, my knees, shoulder, ankles, hips.
I was plagued by pain. I always just thought I was doing something wrong physically, you know what I mean? “Oh, I hurt this shoulder because I swung the tennis racket wrong.” Now, I’ve been playing for six months and I haven’t had any injuries so far, and I feel good after I exercise. You know, I wake up in the morning the next day, and I’m not sore. I don’t feel like I have a hangover. I don’t feel like I have the flu.
Dan: Yes, absolutely. Is there anything in particular that you’ve done since you’ve recovered that were really big moments where you went, “Wow!”?
Peter: Yes. I mean, making my own website for my business might not be a “wow!” moment for somebody else but, for me, I had the hardest time learning anything new for the whole eight years. I just really struggled with technology or just information in general. I learned how to do it myself and I made a music website for my guitar.
Dan: It’s nice to get your brain power back, isn’t it? Not just your physical power.
Peter: Yes. You know, at some point, it’s really hard not having your brain or your physical abilities at the same time, you know what I mean?
Peter: You know, being able to have clear thoughts is huge and being able to write down a list of things to do and actually do them. I had this list of things to do and I just couldn’t get through the list, you know?
Dan: Yes, the list for decades.
Peter: Some of the things that I had on the list were challenging things that would take weeks and months to accomplish. Now, I’m able to break that down, one step at a time, and I’m able to actually get these things done that I just couldn’t get done before.
Dan: Fantastic. Listen, Peter, your recovery took probably what – a year? It took you about a year until you were fully recovered.
Peter: Yes. I mean, I thought I was recovered earlier. At about six months, I thought, when I got to be about 80 percent, I kind of thought that was it because 80 percent was about where I unfortunately had been. That was my best for the last ten years – 80 percent. I thought that was 100 and now I’m actually way beyond where I thought was 100, if that makes sense.
Dan: Yes, I know exactly what you’re talking about.
Peter: Better than new.
Dan: Absolutely. Many people feel that because we lose our perspective. But, you know, there’s people obviously in the program, some people do very fast. I think it’s more expected that something like your experience of taking a year, but some people are in the program for maybe some time – three or six months – and I’m not seeing much progress or maybe don’t feel that necessarily. I wonder, what would you say to them? What would be your advice to people who are sort of maybe struggling a bit with their progress?
Peter: Well, for me, I really think it was doing multiple things. You know, I was doing the Qi Gong for myself, doing the acupuncture, the meditation, the self-massage, the ANS REWIRE technique. I really felt like, now that I know I have chronic fatigue syndrome, I’m going to do as much as I can. I wasn’t really going to leave it up to chance. Maybe I was doing more than I even needed to, but I just felt like my whole day is going to be about getting better every day.
Dan: Absolutely, very deeply focused.
Peter: You know, I wasn’t feeling good while I was doing this, but it was not easy. I don’t want to make it sound like, you know, it was an easy recovery, but it was the most worthwhile thing – one of the most worthwhile things I’ve ever done.
Dan: Peter, are there any final parting words you have for people in the program? Or for people in the wider CFS community who may not be in ANS REWIRE?
Peter: Yes, I would say to listen to other people’s recovery stories. That was one of the things. That’s how I came to believe that I actually had a chance with ANS REWIRE because I still know a couple of acquaintances who have chronic fatigue syndrome, and they’re not recovered. They’re in the same boat that they were when I found out that they had it a couple of years ago. I don’t know. I guess everybody’s different, but they’re still trying to do hormone replacement, and steroids, and stuff like that. They’re not really having too much luck.
The other thing would be to be kind to yourself and patient. Maybe not treating it like a fight, but just to be kind to yourself and be okay. Consider this a long-term investment in yourself and that it’s worth it.
The alternative to not doing this, I think, is being ill – at least for me. That wasn’t an option.
Dan: Yes, it’s a hard slogan, I guess. Sometimes, we almost have to feel like, like you say, it’s not an option and it gives us a very strong focus and push forward.
Look, I want to congratulate you on your recovery.
Peter: Thanks, Dan. I want to thank you for helping.
Dan: It’s my pleasure. This is what it’s all about. You should be very proud of yourself. It’s an amazing achievement, and you get to reap the rewards now and inspire other people. I want to thank you for your recovery insights.
Peter: Well, thank you for giving me the opportunity to share.
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