ME/CFS & Fibromyalgia Recovery Story Introduction

Diane's ME/CFS/Fibromyalgia Recovery Interview Video:

Dan:                     Hello, I am Dan Neuffer. Author of CFS unravelled and the creator of the ANS REWIRE recovery program. Welcome to a very special recovery interview at about four minutes this is probably my longest intro to an interview that I have done because I feel somethings need to be said. Today’s interview is with Diane and her story stretches most people’s perception of what is possible. A story is truly amazing and inspiring. In fact, I continue to be inspired and touched by her ongoing experiences since she recovered. Diane was sick with CFS and fibromyalgia for an incredible 31 years, her experience started with post-traumatic stress syndrome. After a home invasion, after eight or nine years of fibromyalgia pain, it was very difficult for her to cope with her health, suddenly declined and the most unexpected thing happened and the fibromyalgia pain was suddenly gone forever. It happened as a side effect to some treatments for her lungs. No more muscle knots and pains, no more joint pains, but the CFS remained and a herniated disc caused daily pain to be a part of her experience again. And she will do it two more decades of being mostly housebound. Never a holiday or a trip away and she was never able to return to work again. And then the most incredible thing happened and she made a complete recovery. She tells of how her back pain ended in an instant in a supermarket and how she made a full recovery from three decades of CFS in as little as 90 days. Wow, three months that is amazingly fast. Perhaps, this is one of my favourite interviews ever, but I still had some concerns about publishing it. Her experience is wonderful, inspiring. And of course, it is valid and real, but I wanted to make sure that people listening to her story got the right message. That message is that fast recovery is possible, but if we don’t experience that if our recovery takes longer that is okay. We just want to be making progress. My own recovery took 18 months, but I have met people who take three to six months and people who take 12 to 24 months and I have met people that have taken several years. You will hear all types of stories on “cfsunravelled.com”, it was my privilege to be a part of Diane’s recovery journey because she recovered after she enrolled in the ANS REWIRE program, but it is not even greater privilege to know her afterwards and to do this wonderful recovery interview one year after she first recovered. Diane blows any misconceptions about what is possible for long-term suffers of ME/CFS, POTS, and fibromyalgia out of the water. And she shows us that at age 71, age is no barrier either. So, sit back and meet this amazing lady. I am sure you will be inspired by her like I am. And I am sure you will find her just as endearing. She is simply wonderful.

Dan:                     Well, it is my pleasure to bring to you another recovery story today. We have a recovery story with a long-term sufferer of fibromyalgia and CFS. Her name is Diane from the U.S. So, welcome to the recovery interview, Diane. How are you doing?

Diane:                  Thank you. I am doing very well thank you.

Dan:                     It is great to be asking you and it is a loaded question, so I always appreciate that about the recovery interviews.

Dan:                     So, Diane, I would like to start really at the beginning, so we will be looking to get a bit of an idea about your journey. I believe you fell ill about 32 years ago, is that, roughly right?

Diane:                  That is right. Yeah.

Dan:                     And can you tell us a little bit about what happened.

Diane:                  Well, I suffered a severe trauma. I was attacked in my apartment in the middle of the night in 1983, I think it was 1983 and after that, I suffered from PTSD and really couldn’t sleep. I would often sleep an hour at night and then go to work the next day. And so I believe that it was the PTSD and the prolonged lack of sleep that brought on chronic fatigue syndrome.

Dan:                     So, obviously that sounds like a terrible experience. A very scary experience. Obviously, you had the PTSD and then lack of sleep, so what happened? What were your first symptoms that started to come on out of symptoms?

Diane:                  Well, actually I used to play the violin and the first symptom that I noticed was my fine motor skills started to go. And I think if I didn’t play the violin, I might not have noticed it, but that was the first thing and then fatigue started. And my stamina diminished and I would have periods of time where I would be okay and then I have periods of time where I had these symptoms: muscle weakness, fatigue, no stamina, no energy, and of course the sleep problems. And so that is kind of how it started, but then after a couple of years it changed and kind of became that way all the time.

Dan:                     Right. Did you also notice that you started to get other symptoms like sort of flu-like symptoms and things like that?

Diane:                  Yeah, I always felt unwell. I would describe it as either like flu-like symptoms or a bad hangover, either one.

Dan:                     Yes, I think the hangover one actually almost fits better most of the time, doesn’t it?

Diane:                  Yeah, I do think so.

Dan:                     It is a toxic feeling, isn’t it?

Diane:                  Yeah, it is.

Dan:                     And so, what happened when you went to the doctor?

Diane:                  I actually gone to doctor for something else and I just mentioned. I have been mentioning when I go for other things how tired I was then, one day he said; “you’ve been talking about being very tired for a long time.” So, he tested me for Epstein Barr virus, and actually, at that time it wasn’t called chronic fatigue syndrome, it was called chronic Epstein Barr virus syndrome. And just chronic Epstein Barr virus and I had an extremely high titer. He had me come in and he talked to me and he said that I had an extremely high titer which indicated that I had chronic Epstein Barr virus and that I would probably be sick for two years.

Dan:                     Interesting.

Diane:                  And so, I should make arrangements with work and things like that.

Dan:                     Okay.

Diane:                  I was horrified thinking that I was going to be thick for two years.

Dan:                     Yeah, of course. I mean that is a long time.

Diane:                  Yes, at that time, it felt like a long time.

Dan:                     Of course, yes.

Diane:                  And then of course it ended up being 32 years or 31 years, but I also developed asthma and eczema they came along with it. And I had allergies, new allergies, and the one that I had got worse. I already had allergies. I had digestive problems early on the first five to ten years, but I really worked on my diet and that helped a lot. And Fainting episodes I had.

Dan:                     And fainting episodes. I think we will into it a little bit more about the fainting side of things shortly, so obviously the gut issues, the malaise, the fatigue, it is all there. Did you find that you would get flus and colds very easily as well?

Diane:                  Yes, every illness it went through the office where I worked, I would get it and mine would last much longer than everybody else’s.

Dan:                     And so as it progressed as I understand things got worse over time as the years went on. When did the pain start to become a problem?

Diane:                  That was kind of early. That was a couple of years. That started and I remember that I was taking Tylenol every four hours for the pain.

Dan:                     Goodness!

Diane:                  It is through the night too and I just ignored warning on the bottle because I felt like I had to do it.

Dan:                     It is difficult to bear it, isn’t it?

Diane:                  Yeah.

Dan:                     Where did you feel the pain?

Diane:                  I felt it all over in all my joints.

Dan:                     Your joints and also, in your muscles?

Diane:                  In my muscles, yeah.

Dan:                     And did you also develop any sort of knots in your muscles?

Diane:                  Yes, I did. But I didn’t know that for a lot of years until somebody was trying to massage my leg when it wasn’t feeling good and found all of these knots.

Dan:                     And then what? They found the knots all over sort of thing.

Diane:                  Yeah, exactly.

Dan:                     So, what did the doctor say when you reported the pain?

Diane:                  He didn’t pay any attention!

Dan:                     Okay, so he just didn’t say anything!

Diane:                  He didn’t really say anything. I don’t think he had any idea how bad it was. And I am not very good at making a fuss.

Dan:                     It’s just boring. So, as the years went on did you find the pain was getting worse over time?

Diane:                  No, and eventually it did go away.

Dan:                     But we are going to talk about that one first. I think that’s a quite interesting experience because you had all of the classic CFS and Fibromyalgia and things were had been progressively getting worse as I understood for about 10 years when something happened to change the pain side of things, but just before we talk about that 10 years period. would you say that you were progressively had gotten worse over the 10 years, so had somethings gotten better or was it up and down? How would you describe that first 10 years?

Diane:                  Day-to-day, it would be up and down a little, but over the course of the 10 years I was getting worse. I needed more downtime even in my better times.

Dan:                     How did that affect your life at the time, your social life, your church life, your working life?

Diane:                  I actually, I didn’t go to church then. So, I was working, I had to quit work after a couple of years. It got harder and harder and harder until I was spending my lunch hour with my head down on the desk and people would let me use their cars to lay down on the backseat during lunch and things like that. And finally, I just was forced to quit work which is kind of scary because you don’t know where the money is going to come from, but I was able to get some disability.

Dan:                     You were able to get some disability to support you, okay. And did they use a particular label at that time to pay you that disability? Did they say it was Fibromyalgia or Epstein Barr or did they just say it’s a mystery?

Diane:                  I think they said it was chronic fatigue syndrome because by then they had that name.

Dan:                     Okay, fair enough. So, it is 10 years, you haven’t been working. What is the rest of your personal and social life like?

Diane:                  Pretty non existing. I did a lot of laying down and watching old television reruns and reading when I could and I spend enough a lot of time alone.

Dan:                     It is very isolating, very upsetting, isn’t it?

Diane:                  Yeah, I did have friends, but they worked and they were busy and it was hard for them.

Dan:                     And then when you go to catch up, they want to do something and you kind of feel like you can’t do anything?

Diane:                  Right, yeah.

Dan:                     Did you stop playing the violin I believe, is that right?

Diane:                  Yeah, I had to stop playing the violin long before I had to stop working because I was gradually bearing of my activities and I of course work with the last thing to go.

Dan:                     How did you cope with all of this? It is like your whole life seems have stopped. No working, no social life, not even playing the violin. It is a very tough experience.

Diane:                  Right, it was very hard.

LIFE AND SYMPTOMS DURING THE FIRST 10 YEARS OF CFS AND FIBROMYLGIA

Dan:                     And then on the back of having experienced that so terrible trauma as well. Well, let’s talk about what happened next because 10 years or eight, nine years something like this of pain on top of Fibromyalgia pain as well as chronic fatigue syndrome and then you got the cough that changed everything. Tell us what happened?

Diane:                  The asthma was very bad then. They said I have no asthma symptoms at all, but part of it was my husband and I had a couple of cats and actually, I met him while I was sick, but that’s another story. But he had two cats and I turned out to be very allergic to cats and that made the asthma really bad and then I had this asthma, this emergency where I was really having a hard time breathing all the time. So, the doctor sent me to a specialist and she put me on Prednisolone and about seven different medicines all at once and it all helped, but somehow mysteriously this combination of medicines must have somehow affected the Fibromyalgia because when the emergency was over, I didn't have the pain anymore. I have no idea why!

Dan:                     It is quite remarkable, isn't it? And the thing about it is that even when you stopped the medications, the pain didn’t come back. Because you only took the medication for? How long did you take the medication for?

Diane:                  I don’t remember, I was so sick then. I don’t have a good sense of time.

Dan:                     Sure, of course. But it wouldn’t have been a year. It would have been months, maybe weeks.

Diane:                  No, it would have been weeks or a month maybe.

Dan:                     Okay. So, there’s going to be lots of people going; “What! Where are those medicines?”

Diane:                  They got all.

Dan:                     But it is an interesting experience. So, let’s go on a little bit further from that, so were you in contact with a doctor at that time like a regular physician?

Diane:                  I had a regular physician, but I hardly ever went. For one thing, it was so hard to go anywhere.

Dan:                     Too sick to go to the doctor, isn’t that a crazy world?

Diane:                  Exactly, that was the problem. It’s too sick to go to the doctor, but also I didn’t feel like he had anything to help me.

Dan:                     Did he learn? I guess it sounds like your pain wasn’t really paid a lot of attention to, even I know it was very bad. Did you tell him about your experience? Did he say anything?

Diane:                  No, I never was able to.

Dan:                     So, it must have been a great relief for you?

Diane:                  Yeah, it was except that I still couldn’t do anything.

Dan:                     Still sick with the syndrome.

Diane:                  I still got everything else, so it was a relief and a disappointment at the same time. Why can’t it all be gone!

Dan:                     Why can’t it all be gone, of course. Because always you are taking that pain medication, it is kind of dangerous. Not really good for your kidneys and these kinds of things. So, you must be pleased not to be doing that anymore.

Diane:                  Yeah.

LIVING WITH ME/CFS/FIBROMYALGIA FOR 20 MORE YEARS

Dan:                     Okay, so we then we go on, we are 10 years on and there are another 20 years to go. How this one sum up 20 years of more illness?

Diane:                  I know

Dan:                     Did you, go ahead.

Diane:                  And at some of the chronology is a little hard to remember too.

Dan:                     Yeah, of course.

Diane:                  Because it is such a long period of time.

Dan:                     Absolutely, that is right. It just becomes your norm you didn't really think about it. when we get sick for a week and this happens and that happens and that symptom, we go to the doctor and tell him everything. When you have 30 years of history it all becomes a bit of a blur.

Diane:                  Right.

Dan:                     But would you say then I mean at the 10-year mark things always you had been extremely bad. Do you had to sort of had given up many things in your life? When you say the next 20 years, do things is getting worse except for the pain or whether about stable or better?

Diane:                  No. For quite a while it was stable.

Dan:                     Stable, yes. Bad, but stable?

Diane:                  Right and then I felt like I could start going for walks, but I could walk for only a few minutes. So, I started doing that and then when I felt like I could walk a little more, I walk a little more. And so, I started daily walking because that was always one of my pleasures in life was going for walks. So, that made me really happy. I remember being thrilled I made it around the block and I called my husband at work to tell him I was so excited.

Dan:                     How many years into it was that?

Diane:                  It would have been 15 maybe, 16 maybe.

Dan:                     So, you are saying that really for 15 years or so you weren’t even able to really leave the house very well by the sound of it, if you couldn’t even walk around.

Diane:                  Most of the time. there were occasions when I did when I feel just a little bit better and I would leave the house, but it was always hard, it was always very hard.

OUTLOOK IN LIFE WITH ME/CFS/FIBROMYALGIA DURING THE HARD TIMES

Dan:                     So, what is your outlook on life like at this time, before you started to be able to walk a little bit, what was your outlooking life like?

Diane:                  I was doing pretty well because I meditated every day.

Dan:                     Right, you found that helpful?

Diane:                  I think that helped me a lot and I had started some sawing because that I could do in very small increments, you could saw for five minutes and get something done and not do it again until the next day. And yes, it will take you a long time to get a project done, but you can do it and I would do that. And that really helped my mental outlook.

Dan:                     Well done Diane, I am always inspired and amazed by helping people cope with their illness and I think it is one of the most remarkable things about people with ME/CFS and fibromyalgia and POTS. It is how they manage to just keep going and I always take my hat off and I always think it is good to hear someone’s coping strategies. Just to hear there is always something we can do even when we feel absolutely terrible and even if it is doing nothing like meditation. And obviously, that gave you a lot of mental support. With up to 15 years and you had not been able to even walk any sort of kind of distance, what were your friends saying? What were other people about you? What were they thinking?

Diane:                  Well, I know that was at least one person who definitely, implied that it was all in my mind and so we didn’t stick it out very long, but there were other friends who were really great, who really supported me and could see how hard it was for me.

Dan:                     That is good to see that we get at least some understanding. Did anything change? Did anything spark this shift where you suddenly started to be able to walk? Had you recently started meditation and then were able to do a bit of walking or did anything happened that allowed you? Obviously, I am not talking about a little walking, but it is at least being able to get out of the house, was it just that you decided you were going to do it, but how did this happen?

Diane:                  I think I just been feeling things have been fairly stable for a little while, so I just felt like I wanted to try.

Dan:                     Wanted to try again, yeah. This is in the past, I guess?

Diane:                  Yeah.

Dan:                     What would happen in the past if you want to go for a walk or something, what would happen?

Diane:                 I would crash, I would feel terrible for a while.

Dan:                     Like for a few weeks you mean or days?

Diane:                  Yeah, sometimes days, sometimes weeks.

Dan:                     So, it is kind of scary you started walking alone.

Diane:                 But I took it extremely slowly.

STARTING TO BE CURED OF ME/CFS/FIBROMYALGIA AND TREATMENTS DONE

Dan:                     Okay, so then you sort of getting a little bit of quality of life back and I guess we will then look at the next 15 years also. It is hard to sum it all up, but would you say that things pretty much stayed the same as that you were still sick and couldn't do too much, but you were able to just move a little bit and walk tiny amounts.

Diane:                  No, I gradually was able to walk more, so I eventually got myself up to a half-hour a day of walking and that made me very happy.

Dan:                     What would happen if you went off that half an hour, would you still get the flare-ups?

Diane:                  Sometime I would have a fainting episode.

Dan:                     Right, okay. would you also get like the fatigue and the malaise coming in the days after if you pushed yourself more than that?

Diane:                  Sometimes, yeah. So, it seems safer to stick at the half-hour.

Dan:                     Is there anything else that has ever happened during this time that you would want to share during this later 15 years or did you go to any more doctors? Did you try any more strategies? Did you try any treatments over the years, a lot of treatments?

Diane:                  I didn't try a lot, but I did try some. Early on, I would read in different chronicles about the illness, I would read about supplements that different people would claim helped and I tried some of those and non of them worked, some of them gave bad reactions. So, I finally stopped doing that. I tried going to a clinic actually a friend, one of my friends who was very supportive took me to a clinic in Massachusetts and stayed with me there, she was wonderful, but unfortunately, they claimed to be able to cure chronic fatigue syndrome with homoplastic remedies and other treatments, but under their treatments, I actually got worse, so that didn’t do me much good except that it meant a lot that my friend was willing to do that for me.

Dan:                     That’s nice, isn’t it? That is really special. And so then did you try engaging with your doctor again about this or any other doctors about treatment for CFS? I mean, I guess the pain was gone so that was at least a blessing.

Diane:                 Right. No, I didn’t. Because what I was doing was I was keeping in touch with research on chronic fatigue syndrome. And had I read about anything that would actually help, I would have gone to the doctor and ask for it, but I knew that I would know about it more than the doctor did.

Dan:                     Fair enough, so but something also developed as personal later 15 years as I understand and correct me if I have got the dates wrong here, but you mentioned this fainting and did you also get like orthostatic intolerance like when you stood up that you would get dizzy and all this kind of things.

Diane:                  Yeah, not all the time. No.

Dan:                     Not all the time, no?

Diane:                 No.

Dan:                     Okay, so it was the symptoms when you stand up and you would get dizzy, is that right? And sometimes you would faint?

Diane:                  It was more standing for a period of time than when I got up.

Dan:                     Right, okay. And did you have any other sort of symptoms like any cardiac symptoms? Like did you have irregular heartbeats or any feelings with the heart?

Diane:                 Well, I guess a palpitation, but don’t most people have those anyway?

Dan:                     Yeah, well it varies I suppose. But did you find that they came on during the illness like with the fainting at the same time?

Diane:                  Let’s see, let me think. I am not sure.

Dan:                     Not sure, no?

Diane:                  I am not sure about that.

Dan:                     But they weren’t with things that you specifically reported to the doctor, were they? Or did you ask the doctor about the fainting or anything or you had just thought of?

Diane:                  I did ask the doctor about the fainting especially when I had a very dramatic episode in public and so I did ask him about it, but he just had me have an MRI for my brain and when it came up normal he said it must have been a virus and I said I didn’t have a virus and he just ignored me.

Dan:                     Fair enough. So, how many years did this fainting and some of these kinds of symptoms go on for? Happening for many years?

Diane:                  Many years, yes. Actually, that started early on, within the first two years that started.

Dan:                     Right, and that was all the way there until pretty much the end?

Diane:                 Yes, it was. And it would happen…

Dan:                     Kind of scary symptoms?

Diane:                  Yeah, it is and it would happen often in the shower, and it would also happen often whenever I would exert myself physically and the last six or seven years that I was sick I did use a shower chair.

Dan:                     Right, it is just not a good place to fall. Not that any place is a good place to fall, but the shower especially. Okay and so again but in these last six or seven years it would be like you would exert yourself too much and then you would faint, but you wouldn’t necessarily get dizzy or anything like that was it where you are getting like periods of feeling dizzy and faint.

Diane:                 Yes, I did get dizzy.

Dan:                     Dizzy and faint, okay. Well, right and then actually fainting.

Diane:                  Yeah.

Dan:                     But it wasn’t so much when you were standing up necessarily or when you are doing something like that, it would just come on more whilst you are standing for a while, is that right?

Diane:                 Yes.

Dan:                     Okay, that is interesting. So it doesn’t quite fit the standard sort of POTS description. All of those many symptoms obviously with the palpitations and the fainting. So, did you also have like a little brain fog during the time you were sick?

Diane:                  I had thought I had not, I thought I had thought that I didn’t until it went away. Because I heard a lot of people talking about brain fog, it is not that bad and then when I started the different diet, I went gluten-free in the fall before I started your programme. As soon as I cut out the gluten my brain got so clear and I remember going to church thinking I can understand what the sermon is about, I can follow everything and before I couldn't. I could sort of following it, but if somebody asks me after what it was about, I couldn’t tell you. So, I did have it, but I didn’t really know.

Dan:                     That’s interesting.

Diane:                  So, I did have it, but I didn’t really know it and also my husband would say sometimes that I had brain fog, my brain was absent and I didn’t know it, for some reason I didn’t know it!

Dan:                     Well, I guess you used to your experience, didn't you?

Diane:                  Yeah, I guess that is it. It feels normal. It is what is normal.

Dan:                     So then were there any others of really weird symptoms that you had? Like any other symptoms on top of it. Did you have any problems like with smells or any other sort of weird symptoms that people would raise their eyebrows at?

Diane:                 No, not smells. I had sensitivity to light and sensitivity to sounds. In fact, it would be horrible going to a grocery store with the fluorescent light and so on. And just recently I went to a regular grocery store like that and it was amazing. I didn’t enjoy being there, but I didn’t have any of that. It was interesting, I just noted that I was not having any problem there.

Dan:                     Isn’t that amazing after three decades?

Diane:                  Yeah.

Overcoming PTSD Symptoms

Dan:                     So, I guess the other question I would have again 30 years is such a long time. It is actually my view that PTSD is along the same spectrum of CFS and fibromyalgia, but they express themselves differently because PTSD is usually a psychologically triggered event from a trauma where CFS and fibromyalgia can obviously happen from all kinds of things. They don't have to have an emotional upset. Sometimes people have an accident, or they have a surgery, they have a childbirth, they have an immunization. So, they can be lots of physical things, over-exercise, things like this. Whereas PTSD is in my view it is actually the similar dysfunction, it is along the same spectrum. So, I guess the question I asked is during that time did you feel you have resolved your PTSD symptoms and how would you describe the PTSD symptoms that opposed to the CFS and fibromyalgia? Because that is normally considered like a psychological experience, isn’t it?

Diane:                 Right, except it is in the brain. I think it is in the amygdala. It involves the amygdala, but I had flashbacks and I had all the classic PTSD symptoms, flashbacks, nightmares, hypervigilance and that is of course why I couldn’t sleep, so that was the PTSD and the CFS and fibromyalgia were very different.

Dan:                     Yes, they did different symptoms, so how long did it take for the PTSD to resolve?

Diane:                  Well, the worst of it was over after five years, the very worst of it was one year and then it eased a little bit and then after five years, I would say the PTSD was pretty much resolved.

Dan:                     Okay, did you do anything, in particular, to help you with the PTSD?

Diane:                 I think the meditation.

Dan:                     Did you have a lot of counselling as well?

Diane:                 I had a few months, I hade about six months of counselling, but it was during the counselling that I discovered meditation. Not through the counselling, but separate and when I discovered that I realized that was doing me much good than the counselling was, so I quit the counselling.

HOW ANS REWIRE PROGRAM HELPED DIANE RECOVER FULLY FROM ME/CFS/FIBROMYALGIA

Dan:                     Okay, so look here we are now, it is 30 years down the track and everyone of course is saying; “well, what happened? How did you recover?” Now, you actually found the ANS REWIRE program, my program, so most of the recovery interviews I have here I have tried always to be independent stories where people have all kinds of journeys, but yours is actually now through the ANS REWIRE program so I probably better mention that. I guess my first question is I don’t know I am always just amazed because I personally after I don’t know how many years it was maybe four years or something like this, I have tried everything I have been into. I tried things that were sensible and I tried things that were crazy, that I would be too embarrassed to even tell people, but desperation will throw you, get you to try strange things and nothing had worked. I think I probably gave up after the fourth or fifth year of being ill. So, I just think, how amazing that after 30 years that you are still looking for answers, did you always think you would be able to recover again one day or were you just..?

Diane:                 The attitude I had was that maybe I won't recover, but I am going to make the best of my life. If this is my life, but I am open to the possibility that something might come up. That was my attitude.

Dan:                     I find that really admirable and perhaps I find it admirable because I have become so close by myself because I had given up after trying everything. So I think that is amazing. And I always find that very, very inspiring. So then you came across and tell us a little bit about your experience. How did things progress from 30 years of illness to being well? Because I guess the thing that is so unique about you is not only that you had 30 years of severe illness, but you actually recovered very quickly. So, tell us a little bit about your experience. What happened? You found the ANS REWIRE program. And what were you thinking?

Diane:                 I watched your first four videos and read everything you had there. And I was thinking, this is the first thing that really sounds like it might be the cure. this actually sounds like it might be it.

Dan:                     Right. And then you decided to enroll in the program.

Diane:                 Yeah, I debated, I thought of enrolling right away and I thought I am going to wait until tomorrow. I am going to just sleep on it and see.

Dan:                     I think that is good advice.

Diane:                 And the next day I said, I am doing this because it sounds like it is going to work.

Dan:                     So, you obviously sounded like you were quite positively expecting to make that step. I mean to do commit to such a process which again, I can't help about saying, but I just find it remarkable after 30 years given the fact that I peated out after four or five, so you decide you  are going to do it and sort of how quickly or was it that the things started to change for you?

Diane:                 Well, actually I had my first breakthrough, my first change just two weeks in, after two weeks, which was pretty amazing. I thought.

Dan:                     So, what happened, what kind of breakthrough?

Diane:                 Well, my energy changed. This is a little difficult because I might have to go into some detail about the program.

Dan:                     That is okay. Well, you share what you do like.

Diane:                 Okay.

Dan:                     And you have got people listening, obviously it is a bit difficult with the nitty-gritty details, but I guess ANS REWIRE is a multilateral program, so it has many strategies from brain training strategies to physical strategies. So, you just share what you sort of the kinds of strategies you engaged and what happened.

Diane:                 Okay. Well, it was the postural rewiring that made the first difference. Well, of course, I was starting to get more aware of things because your program helps you to get more aware of what is going on in your body. And I noticed this intense tension in the middle of my upper back in the grocery store. So, I used a technique that I had just learned that morning in your lesson to start releasing it and I had to keep doing it and keep doing it and keep doing it all the while I was doing my grocery shopping. And by the time I got out of the store, it was completely relaxed, but the other thing was my lower back pain, which I'd been having for years was gone.

Dan:                     What do you mean right then or over a period of days or weeks?

Diane:                  Right then.

Dan:                     Okay, that must have been weird.

Diane:                  It was weird, but it was also wonderful and I felt a little more energetic.

Dan:                     Did you tell your husband and what did he say?

Diane:                  I did. We were in line going out the grocery store and I said; “this is weird, but…” and I told him and he was amazed.

Dan:                     All right. So then what happened next? You kept progressing obviously with some of those physical techniques and some of the other brain training and the other strategies. The program also involves lifestyle changes and diet and things. Had you already done a lot of those things?

Diane:                  I had, yeah.

Dan:                     So, they weren't necessarily new.

Diane:                  Well, some of it I had done and some of it I needed to do. I had made some significant dietary changes the fall before. I started the program and they made a big difference but didn't get me better. But then when I started your program, I made more changes to follow your advice.

Dan:                     So then tell us what happened? How did you progress from that shopping experience?

Diane:                 I just kept doing all the techniques and my energy kept getting better. Occasionally, I would have a day where I didn't feel as good, but generally, I kept feeling more energetic and then I had exhilaration going for me because I was exhilarated and about getting better. And I remember at one point, I don't know exactly how far in it was, but I just said to my husband; “one day”, I said; “I am going to get better.” because I knew then that I was.

Dan:                     That must have been a weird moment for you?

Diane:                  Yeah, but it was wonderful.

Dan:                     What did he say? I mean, 30 years of you sort of lounging around the house, struggling to get out and do anything. And now you are speaking like this, it must have been odd for him.

Diane:                 I think it was, but he was happy too.

Dan:                     Fantastic! So, do you progress now? Obviously, if you say you are progressing and you are starting to do more physically, would not you worry that because up to this point, if you did more than your little bit of walking that you’d build up to, or if you pushed yourself to do other activities, you get a flare-up, you get sick, you get all these stuff happening. How are you able to extend yourself? Weren’t you worried about that?

Diane:                  No, because I felt so different.

Dan:                     Right, okay. So, do you think you were feeling better before you were doing the things that supposed to pushing yourself to do them?

Diane:                  Yes, definitely.

Dan:                     So, you were not pushing yourself with the exercise per se?

Diane:                  No.

Dan:                     No, Okay. And I think that is a really interesting thing to listen to it because some people suggested you should just be pushing yourself and increasing and in a linear fashion, but I think just about anyone who genuinely has the illness know that when you do that you get sick, right?

Diane:                  Right.

Dan:                     So, I think there is a real message here, about listening to your instinct that if it doesn't feel good, perhaps we shouldn't be doing it.

Diane:                 Right.

DOUBTS AND FEAR ABOUT THE ME/CFS/FIBROMYALGIA RECOVERY PROCESS AND GETTING BACK AT IT

Dan:                     So really from two weeks to nine weeks, I guess it was a pretty much a linear process? Did you at any stage go; “Oh, maybe it is not going to work” or did you have a setback where you start to doubt things?

Diane:                  There were a couple of days, not one day after another, but a couple of days where I was a little more tired again. But It is a different quality of tiredness. It was definitely had a different quality to it, but there were a couple of days where I would be a little more tired and I would be just a little bit worried maybe I am not getting better, but then the next day I would be better again.

Dan:                     You were still getting a little bit of that malaise, that toxic feeling at times. Or was it just gradually improving?

Diane:                 A little bit, just a little bit.

Dan:                     You get a bit of a flare, a mini flare once in a while, okay.

Diane:                  Right.

Dan:                     And what about I mean, you are going out and you start to increase your activity. You're walking and things. Obviously, you were still fainting if you were doing more than normal and you would faint this sounds really brave. Were you not worried about this?

Diane:                 No, I was definitely feeling better and then I did at one point have a fainting episode start while I was walking, but I used one of your techniques and took care of it.

Dan:                     Took care of it, Fantastic! And then, I guess things kept going and it was pretty much at the 90 day-mark, where you made the brave proclamation that you had recovered. What is your life? let's talk at just 90 days. You were symptom-free, right? You have had all these huge lists of symptoms for 30 years now, you are feeling like symptom-free and you have more energy than you can remember. As I understand you said in that little interview. What is going through your head at this point?

Diane:                  I was very exhilarated and what was going through my head?

Dan:                     Was it disorientating?

Diane:                  Yes, very much and it was kind of like what am I going to do? But that is very quickly, that problem very quickly went away.

Dan:                     I asked about this Diane because I think for most of us that recovered that I know most people tend to feel quite disorientated, especially when they have been sick, very sick, bedbound or sick for a long time, you feel like you don't know what to do with yourself. You almost don't even know who you are because life kind of, it is almost like when you are so sick, you don't do anything in life because you are so sick and now that is gone and you sort of go well, then what, you know what I mean?

Diane:                  Right, yeah. Exactly.

Dan:                     So, what have been people saying around you? Your friends, your family, your husband. Not today's it is not very long. That is like maybe you caught up with them once or twice for some people. What are they have saying?

Diane:                 Everybody was just thrilled for me. They were thrilled for me and I only told a few friends when I started the program and they were very excited for me because I was excited thinking that was going to get better and they were very supportive, but even people that I don't know that well when I tell them about it, they are very happy for me.

Dan:                     That is nice. Did you go back to your doctor and were you in touch with the doctor at this stage?

Diane:                  Well, that doctor retired quite a long, long time ago and I do have a doctor on the books right now, but I had never met her.

Dan:                     Okay. So, you hadn't been in touch with the doctor for some years?

Diane:                 Yeah.

Dan:                     Okay.

Diane:                  That was my way of giving up. I gave up on doctors.

LIFE AFTER ME/CFS/FIBROMYALGIA RECOVERY & BEING SYMPTOM-FREE

Dan:                     Okay. No-fault of the doctors there, if there's any doctors, listening. Okay and so what did you then do with yourself? Tell me how? obviously, you are symptom-free, but you are obviously able to do more than that one 30 minutes walk a day. Tell me what is your life? What was your life like at 90 days?

Diane:                 Well, let’s see. Well, I had stopped going to church because it was too hard for me, so I went back to church and I took over all the yard work and so that was kind of neat and actually, I cleaned a bunch of things that had never gotten cleaned during the years. You know how it is I am sure.

Dan:                     Absolutely.

Diane:                  There was so many things that don’t get done. So, I took care of an awful lot of things that needed to be done.

Dan:                     30 years of housework

Diane:                  You are right and made very happy.

Dan:                     Who would have thought that the housework can make one happy!

Diane:                  I know.

Dan:                     And you were exercising quite a lot more.

Diane:                 Yeah.

Dan:                     Tell us about that.

Diane:                  Well, I had started Tai Chi while I was still sick, but I had to take a chair with me and sit down periodically. I was able to dispense with the chair and I added another class. And so I go to Tai Chi twice a week now. And I started taking much longer walks. I started going for an hour walks, full hour and now actually, well that now is not 90 days. So, at 90 days what was I doing?

Dan:                     Obviously, your whole day, you were busy. It wasn't just that you would hang out or walk. Your whole day was doing chores around the house and I believe you even started playing the violin again. Is that right?

Diane:                 I did, yeah. And I can't remember now exactly. Oh, I know when I started playing the violin again in December. This past December, I started playing the violin again because that is very strenuous and I didn't actually intend to start again. What happened was I thought I'm feeling a lot stronger and I am just curious how strong I am. So, let me get the violin out because I know that takes a lot of strength just to test my strength. Well, I tuned the violin and next thing I know I'm working on it. And the next thing I know I'm practising every day and that is how I went back to it. And my husband plays the organ so we can play music together.

Dan:                     Beautiful!

Diane:                  So, we are really having a good time.

Dan:                     And if we go beyond the 90 days, so I guess if we just look at this last year that you have been well now, what else happened? I believe you started going out on weekends on little all kinds of journeys and hiking in the mountains and things like that, is that right?

Diane:                 Yeah, I have been. I have a friend who likes to take long hikes and so we started hiking together for a couple of hours once a week, but this past week we got carried away and we hiked for three hours and it's in the woods. It's up and down hills and over walkie terrain and it is fun, we bring her dog along.

Dan:                     Fantastic!

Diane:                  Yeah, I enjoy it.

Dan:                     And what else? Tell us what else? What has life been like since you have recovered? What are some of the great experiences of physical things that you have done, that you have not done besides hiking every weekend and then walking every day for an hour? It is obviously great and the housework and all of that. But was there any other sort of experiences you had that just made you sort of pinch yourself?

Diane:                  Yeah, I had a dream of doing, I have been following the black bear research in Minnesota and there is this wonderful researcher who does trust-based research so that he can sort of like Jane Goodall, so that he can study the behaviour of black bears and he holds these during the summer, these black bear field study forces and eight or nine people come to each class and you stay there for three days and you get to observe the close up the behaviour of black bears. So, as soon as I realized I was well I said; “Oh, we have to sign up for a black bear field studying-course.” So, we did, and we went this July and it was beyond my wildest dreams. It was just wonderful and yeah, that was a pinch yourself moment.

Dan:                     Had you done also any sort of trips, any other trips in this last year or things like that, any other sort of things like that you hadn't been able to do in the 30 years prior?

Diane:                  Yeah, we went on a trip to Philadelphia to visit my husband's daughter and she had just had a new baby. So, we helped her with the new baby. We went to help out with that and that was fun and then we also went on a whale watch this summer which was pretty exciting.

Dan:                     Have you done anything like this sort of thing before, like whilst you were sick, had you managed ever to go on trips or travel or?

Diane:                 Not at all, no. I had gone on a whale watch before I got sick, but not since I got sick. And so, my husband and I had never been on one together.

Dan:                     It must be kind of weird to be actually travelling and going longer distances when you barely left the house for so long. I am not saying that one becomes claustrophobic, but 30 years is being essentially very restricted and suddenly going away on trips. Was it like very novel, very weird or?

Diane:                  It was weird in a way it is like, there is this whole world out there and you don't. I have always travelled through books, through reading, but it is not the same as actually being there in Minnesota and hearing that wonderful Minnesota accent. Well, wonderful people there.

Dan:                     And when you were like with whale watching things, did you ever have moments anymore where you go, “Oh, I shouldn't be doing this or I'm doing too much”, or is that completely gone?

Diane:                  No, that is completely gone.

Dan:                     Fantastic!

Diane:                  There are moments where I think, I can't believe I am doing this, but never that I shouldn't be doing this.

Dan:                     Is it rude to ask what your age is?

Diane:                  No, it is not. I just turned 71.

Dan:                     You just turned 71. They say you should never ask a lady her age, so I thought it wouldn't be polite.

Diane:                  I know, but it depends on the lady and I don’t mind.

Dan:                     Because obviously it is 30 years being very dormant and sick and everything and we become deconditioned and as we become older and then for you to be doing all these amazing things. I just feel like, I get a lot of emails from people who are in their sixties and seventies and it is sort of almost they wonder if it is possible for them? And I think yours is such a wonderful example because you have both, you are over 70 and you have 30 years of being sick which is a huge amount of time. So, I think that is very, very inspiring and nothing, we can say a lot of things, but nothing speaks louder than an experience and actions does it.

Diane:                  Right. And early on with recovery, I may have overdone it a little bit with my muscles and I did have some muscle injuries, but I just did exercises to get them better and they got better.

Dan:                     I love it.

Diane:                  And now I am stronger.

Dan:                     30 years ill, 71 and we are getting sporting injuries.

Diane:                  Right and recovered from them.

Dan:                     I do remember you were going for even at the 90 and the 120 day-mark. I remember seeing emails from you and I remember you going hiking on the weekend for several hours and you were walking every day for an hour. I even thought that you would be walking more than that at the time. Maybe I am getting that wrong, but I remember it was quite a lot of walking and that's how you got the ECB injury. Is it ECB the band?

Diane:                  No, it is the Iliotibial band.

Dan:                     Oh, yes.

Diane:                  The Iliotibial band so, it is the ITB

Dan:                     ITB and that is the one on the side of the leg that joins the hip?

Diane:                  Yes, it is. It joins the hip to the knee.

Dan:                     So many, sorry go ahead.

Diane:                  And I found if I do squats and some other leg raises and things and they keep it in shape.

Dan:                     Well, one of the problems that people have is that when we recover, one is recovering in terms of getting the body working the symptoms gone and getting energy and all of that. But there is also rehabilitation. Physical rehabilitation because the muscles are gone, and one area where the muscles are particularly affected is the core. And it is really common for people too because these core muscles are so diminished from both, from the actual illness, as well as from the sedentary lifestyle. That we get all of these sorts of issues and that's a classic one. People don't think that the sore knees and that their leg pain is necessarily related to their core, but these things are all interconnected and especially a lot of people get lower back pain issues as well. You mentioned that you had lower back pain during your 30 years and you have done amazing experiences in the supermarket. How has it been since then?

Diane:                  It has been pretty good. It has been good, my back is a little stiff in the morning when I get up, but all I do is walk around. I am 71, but walking around and it is fine. And I have been lifting things, carrying heavy things and no problems at all with my back.

Dan:                     Fantastic!

Diane:                  And while I was sick, I had a herniated disc.

Dan:                     Right, you actually had a herniated disc?

Diane:                  Yeah, but it is very strong now. My back is very strong now.

Dan:                     Fantastic! Look, Diane thank you so much for sharing your inspirational stories.

Diane:                  You are welcome.

Dan:                     I guess I always send messages to people; it is great to know that it is possible and everyone's journey is a bit different. I am not saying people should be listening and saying; “Oh, you know, I am going to recover in 90 days.” I think there were reasons why that happened, but it is not something that most of us would expect, but it is very insightful as to why it happened, which we probably can't go into in this interview, but is there anything that you would like to say to people who are listening? Is there any particular insights or messages or anything else that you want to say?

Diane:                  Yes. If you do dance program and you should because it really works. Do everything that he tells you to do by the book and you will get better.

Dan:                     I think that is the key message. She went about CFS unravelled that was really my whole message was that we need a multilateral approach and that we need to tailor it to our own experience and our own symptoms because there is no magic cure. One thing that is going to just fix everyone. It is about doing that combination and doing what you need to do for yourself. So, I think that is a great message. Thank you for sharing that, Diane. And thank you so much for sharing your personal and your very inspirational story today.

Diane:                  You are welcome and I hope it encourages people to do the program because there are so many people out there who would be wonderful if they could be better too.

Dan:                     Absolutely. Well, thank you very much for those kind words and I will always look forward to your emails about the little adventures that you have gone, so please continue to stay in touch.

Diane:                 I will do that.

Dan:                     Thank you.