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Show Notes

Rachel tells her story of Fibromyalgia Remission - it's interesting to hear her say that despite being healthy again and symptom free, she still says "I have fibromyalgia". We discuss how she became ill and how she went into fibromyalgia remission and the differences between recovery, cure and fibromyalgia remission.

Timestamps

Introduction0:00:00
Podcast Disclaimer0:01:08
How Rachel's fibromyalgia started0:01:52
What did Fibromyalgia diagnosis mean to Rachel0:05:35
What the fibromyalgia pain was like for Rachel0:08:54
Rachel's other fibromyalgia chronic illness symptoms0:09:43
How fibromyalgia affected Rachel's work0:13:11
The lead up to Rachel's Fibromyalgia onset0:15:03
Rachel's outlook for life with Fibromyalgia0:17:30
How Rachel's fibromyalgia remission started0:18:41
How long did Rachel take to go into full remission from Fibromyalgia0:25:12
The rollercoaster of lifestyle changes 0:27:44
How long until significant changes showed up for Rachel0:28:00
How Rachel's remission efforts expanded0:29:43
Finding the missing key for her recovery0:31:54
Rachel talks about stress impacting Fibromyalgia0:33:14
Was Rachel destined to get Fibromyalgia?0:34:21
Rachel's experience with yoga and meditation0:36:22
The benefits of CBT for Rachel0:38:29
Rachel gets diagnosed as being in remission - not cured0:41:50
Rachel answers "is Fibromyalgia a bad thing"0:45:24
Rachel talks about her engagement with life & impact on Fibromyalgia0:49:13
Dan digs into the impact of the choices and how we engage with life with Rachel 0:51:24
Rachel talks about faith, hope and belief during her fibromyalgia remission efforts0:55:48
What was IT that helped Rachel to go into remission and stay well0:59:20
What does remission really mean for Rachel?1:00:34
Dan asks Rachel about the identity of 'having fibromyalgia'1:07:44
Rachel's advice to others still experiencing fibromyalgia1:09:48

Transcript

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Dan Neuffer: What does it actually mean to recover?

This episode shares a recovery interview with Rachel who recovered from fibromyalgia, yet Rachel still uses the words “I have fibromyalgia.”

I found this discussion very insightful. If you listen carefully, you will hear us peel back the layers of this aspect of Rachel’s story as the interview progresses.

It can be easy to attribute our progress or our setbacks to specific things, but without testing them in isolation, how do we know?

I really appreciate Rachel’s approach to making difficult changes that led to her recovery. For anyone struggling to follow through, there are some valuable lessons here.

I also appreciate her enthusiasm for spreading hope and understanding of how it transforms how we engage with our challenges, and her story about her career changes captures that beautifully.

Enjoy this interview and leave a comment to let me know what you got out of the interview.

Just a short but important message regarding the content of this podcast.

The ideas, concepts, and opinions expressed in this recording, website, and associated media and products are intended to be used for educational and information purposes only. Nothing presented is intended to replace your physician nor are they a substitute for medical diagnosis, advice, or treatment.

This podcast is provided with the understanding that the authors, guests, speakers, and publishers are not rendering medical advice of any kind.

I’m very excited to speak with another fibromyalgia recoverer. Today, I am speaking with Rachel from Chicago.

How are you doing, Rachel?

Rachel: I am good! How are you?

Dan: Good! I bet you never thought you were going to do one of these interviews when you were sick all those years ago.

Rachel: I did not, no.

Dan: Rachel, look, the best place to start with these things is always at the beginning – although sometimes the beginning is not that obvious. I guess my first question is how long ago did you first start to become sick?

Rachel: I started exhibiting symptoms in 2010. That would have been about 10 years ago.

Like most people that have fibromyalgia, it typically starts after some sort of traumatic event. Mine happened to be a water-skiing accident.

I actually tore my meniscus, ended up in a hospital emergency room, and thought that was it. It wasn’t until maybe about a month later or two months later that I started waking up in pain. I would wake up in the morning and feel very sore and ache-y – mostly in my lower back.

I thought, “Oh. I must have gone too hard at the gym.” At the time, I was a dancer, so maybe I went too far at dance practice. “Let me pull back a little bit. I’m probably just sore.” But the pain kept getting worse and worse. Then, it went into my arms and in my legs.

Also, the other symptom I had was chronic fatigue. With fibromyalgia, there are a thousand different symptoms that you could have. For me, it was chronic pain, chronic fatigue, the burning sensation on my skin, sensitivity. I immediately thought the worst. I thought, “I am dying. I must be dying. There is something wrong with me.”

I went to the doctor and – like most people with fibromyalgia – they did every test imaginable. We did blood tests and X-rays. They sent me to specialists. I did an MRI. I even saw a chiropractor. I kept thinking, “What is wrong with me? I don’t understand. Why am I feeling this way?”

It actually took about 10 doctors to figure it out. A lot of people with fibromyalgia have very similar stories. Really, the way that it’s diagnosed is if you don’t have anything else, it’s probably fibro.

I think I started exhibiting pain in August 2010. I was officially diagnosed in 2011.

Dan: When we don’t know what’s going on, a week, two weeks, a month is a crazy long time, isn’t it? Not knowing why you’re having all of these issues. Now, we’re talking about nearly six months. What a horrendous experience.

When we reflect on the wider experience in the community, people go decades without being diagnosed. I think there comes a point where they stop seeking a diagnosis or what’s wrong. It just becomes the status quo.

What did it mean to you when you got diagnosed? All of these symptoms, and then you’re told that it’s fibromyalgia. What did that mean to you?

Rachel: I remember really vividly because I was journaling at the time. I remember getting the diagnosis and feeling a sense of relief but then also feeling this sense of dread because, out of all of the different doctors that were looking at me, one of the doctors was actually for cancer. They found a spot on my MRI. They thought maybe it was cancer. It ended up not being that – thank God!

Dan: When you say a spot, where was the spot?

Rachel: On my spleen.

There was a spot on my spleen. It was sent to a specialist to make sure that it wasn’t cancerous or that it didn’t look like something that was cancerous. They said, “No, it’s normal. People have these all the time. It’s a false alarm.”

When I got the fibromyalgia diagnosis, I had this really strange feeling of “well, if it had been cancer, I would know what to do – I would know how to fix it and how to make it go away – but it’s not, and now what’s next?”

I have this pain and there is nothing you can do about it. You will never get better.

Dan: Was that based on what you were reading? Or was that what your doctor told you?

Rachel: It was really interesting. In 2010, nobody was talking about fibromyalgia.

I remember my doctor who diagnosed me went to Google, typed in fibromyalgia, printed off a bunch of sheets, and handed them to me like, “Here, read about this disorder that you have.”

Dan: There was no prognosis per se. He didn’t say, “You will have this for this time,” or “It’s lifelong.”

Rachel: No, he just said, “This is what you have. It’s not curable. That’s it. Go on your way.”

I was left with the same “this is going to be my life now, and I don’t know what’s next.” I couldn’t find any blogs. There were no YouTube channels at the time to say what to do next. I guess you could say I wasn’t sure what to do.

Dan: How old were you at the time?

Rachel: I was 25.

Dan: Wow.

Rachel: I’m 35 now.

Dan: That’s not what any 25-year-old wants to hear. Let’s face it. It’s not what anyone wants to hear, but when we’re young, we think of ourselves as healthy and invincible, then it’s a real shock.

You get diagnosed with fibromyalgia. You’ve got the pain. Is the pain all over the place now? Or still the lower back?

Rachel: It’s all over the place. I noticed it would come flare up stronger and come back down. It would never go away. It would always be there. But in times when I was very stressed, it would flare up.

In the morning, it was always the worst. If I took a nap, I noticed I would always wake up in pain. That was a big problem because, with chronic fatigue, all you want to do is sleep, and I really had to fight against that because I knew, if I took a nap, I would wake up with more pain.

Dan: What about other symptoms? What other symptoms did you experience over the years?

Rachel: That’s a great question.

I would say I did have IBS issues – stomach issues – but I have really had those my whole life, so I didn’t necessarily tie that to my fibromyalgia.

The other thing that I noticed was some food sensitivities that were coming up. The first one was soy. All of a sudden, I couldn’t have any sort of soy without becoming violently ill. It popped up out of nowhere.

The other one was most tree nuts. I’m okay with almonds, but for some reason, pecans, walnuts, cashews, I will develop a weird rash, especially an itchy mouth, et cetera. Some people say that could be a symptom of fibromyalgia, but then also I know people to whom that happened, and it’s unexplained.

Dan: What about sensitivities? Did you have any sensitivities to lights or sounds or things like that?

Rachel:  I never got that. I know that a lot of people do have that. Sometimes, I wonder if it’s because I really started working on going into remission shortly after I was diagnosed.

I was very lucky in that I started putting the pieces together within maybe a year and a half of being diagnosed. I’m wondering, if I hadn’t gone that route, if sensitivities would have come later. I do know that I get overwhelmed very easily, but that’s also a symptom.

Growing up, I have what’s called General Anxiety Disorder. That’s a very common symptom. When I am in a very crowded room and there’s a lot of noise or if I’m very stressed and I have a lot of things to do, I will have to bring myself away and quiet myself down.

Dan: What about cognitive issues? Do you have any difficulties with memory, concentration, and that sort of thing?

Rachel: Yes, definitely.

This is my theory, but with cognitive issues, I think it’s directly related to the pain because, if you have this buzzing in your ear of pain, that’s all you can think about. It’s so hard to tune out the pain. I think that was a big reason why I wasn’t able to concentrate or remember things.

I’m not sure if that’s different from the way other people experienced fibro fog, but I definitely noticed, especially at work, when the pain would pick up. It was very hard to concentrate on anything except the pain.

Dan: What were you doing for work at the time? How was your work impacted by becoming ill?

Rachel: I was a middle school teacher. I taught 12- and 13-year-olds. I taught intercity low-income students. Our school did not have a lot of money. It was an incredibly stressful situation. It was one that would cause the pain to flare up a lot. Not only the stress of teaching but being on my feet all day.

Other teachers, maybe nurses, and doctors would experience the same issue of when you’re on your feet all day, it can be very exhausting.

I actually had to quit teaching because I couldn’t do it with fibromyalgia.

Dan: How long was it until you had to quit?

Rachel: I think I quit in 2011. Shortly after I was diagnosed.

Dan: It’s not an easy step to make, is it?

Rachel: No, not at all, especially because I didn’t know what to do next for a career.

I had a master’s in teaching. A lot of other businesses or other careers will say, “Well, what can you do? You’re just a teacher.” It was very hard to transition into another career where I didn’t have to be on my feet all day.

It took many years to find the right one, but I am web designer. That is the perfect fit for me.

Dan: Before we get into your story a little more about what happened with the illness and then how things started to turn around, I want to say about what happened beforehand. How long had you been at that job before you got ill?

Rachel: I graduated undergrad in college in 2008. I taught for about three years.

Dan: At the same place?

Rachel: Yes.

Dan: Obviously, you had this horrific water-skiing accident. Did anything else happen in the year leading up to you becoming ill?

Rachel: That was the final straw that broke the camel’s back, but one thing that I’ve learned with my fibromyalgia research is a lot of people with fibromyalgia tend to burn the candle at both ends. This is incredibly true for me.

We are Type A Personality. We might be perfectionists. We love working incredibly hard. We love succeeding. My entire life basically revolved around working. I would work very hard as a teacher. I worked very hard in school. I actually have two different master’s degrees.

To do all of that, I would not sleep. I would maybe get two to three hours a night every single night for years. In college, I would routinely stay up for 48 hours in order to write a large paper. I thought that this was totally fine and that it was no big deal and that it was my superhuman strength that I could function without sleep.

The same went for my diet as well. I do not enjoy cooking. I do not enjoy eating. It’s not a passion of mine. I would pick incredibly simple meals. I would eat a lot of fast food. I would eat whatever I could and would get it over with so that I could go back to working.

Dan: I totally get it.

Here you are. You had to quit your job. You were 25 or 26. You were severely chronically ill. What was going on in your head? What was your outlook to life?

Rachel: Not great. I was in a pretty dark place. I was applying to jobs. I wasn’t really sure what to apply for, what skills I had to offer, and I spent a lot of time at home in bed on YouTube. I watched a lot of the makeup YouTube when it was first coming out.

I read a lot of blogs. The big blogs that were exploding at the time in 2010 and 2011 were Paleo blogs. All of the big Paleo bloggers were coming out. That was something that I really started to read more and more. That eventually led to some of the choices that I made.

Dan: What happens with your illness? How long is it until there is some kind of a shift? What’s happening with your illness during that time? Is it getting worse? Is it the same? Are there new symptoms popping up? Are you seeing a lot more doctors? Tell me about that.

Rachel: The pain was getting worse. I did notice that, since I quit my job, it wouldn’t flare as high as it was when I was working, but it was really starting to affect my mental health.

I was getting to the point of I don’t know if I can go on living like this. It was like, “What’s the point?” I suddenly had this thought. “No one is coming to save you.” I can’t sit here and do nothing. I have to do something.

My first thought was I was going to see doctors. We have a hospital here called Rush Medical. It’s a fantastic research hospital. There was one doctor in particular who really studied fibromyalgia and is very well-known. I thought, “He’s the one! He’s going to have the answer!”

I went and he did the pressure point diagnostic test on me where you push on all of the pressure points. All of them lit up. He said, “Yes, Rachel, you have fibromyalgia. Goodbye!” I said, “Yes, I know that. What do I do about it?”

He said, “Well, there are all these medications you can take, but between you and me, they are a total waste of time. Don’t even bother. The medications don’t work. We don’t know what else to do, so we’re going to give these to you. I’m happy to write a prescription if you want to try them, but I guarantee you, they are not going to work.”

I remember coming home in tears, thinking that was it. If this specialist who specializes in fibromyalgia is telling me there is absolutely no hope, then I am not going to go to a doctor anymore. I am going to have to figure this out myself. That’s when I started doing more research and trying to see anything I could find online about it.

There were  two things that happened shortly after. One was I read online somewhere that exercise could help. I thought, “That’s interesting! I was exercising before I had fibromyalgia. I don’t know how this is going to help,” but you reach a point when you are sick where you will try anything. If someone says exercise is going to help, let me try it.

The second thing that happened was I was at a party with a bunch of people I had never met before. It was a friend’s party. Somebody was there. We were catching up. We were introducing ourselves. I mentioned that I had fibromyalgia and she said, “No kidding! Me too! But my pain went away since I cut out gluten and dairy.”

I remember leaving the party and turning to my boyfriend at the time. I was like, “That’s interesting! I haven’t read that anywhere, but maybe I should try that with the exercise and see what happens.”

Right at the time, the way that I cut out gluten and dairy, there was an elimination diet that became very popular in 2011. That’s the Whole30. It was on all of the Paleo blogs. “Try this elimination diet for 30 days!” Two of the foods that it cut out was gluten and dairy. I thought, “I’m going to do this elimination diet.” My boyfriend at the time did it, too. “Let me see if it works. Why not? Let me try it.”

Dan: What have you got to lose?

Rachel: Exactly.

Dan: It’s pretty innocuous because you’re still eating food. It’s not like you’re cutting out everything.

Rachel: Yes.

With the Whole30, basically, it’s cutting out any food that might be problematic. All grains. Even things like rice. All dairy and alcohol. All artificial sweeteners. Some people might have a reaction to corn. There was a whole list.

The best thing about the Whole30 is all of the rules are online for free. That’s something else that I guess I should say too. Even though I put myself in charge of my own healing and sought out the answers and experimented on myself, I am also a huge supporter in professional doctors, nutritionists, and registered dieticians. I have not turned my back on modern medicine at all.

I think that sometimes people who do find more holistic treatments will occasionally turn their back on modern medicine and say, “It didn’t help me, so I’m not going to reach out,” but I truly believe it’s a partnership. Use modern medicine when you need it, but you also should search for your own answers as well.

Dan: Yes, for sure.

How long had you been unwell at this stage when you started to do the exercise and the diet changes?

Rachel: It was about a year and a half. It was slow. Changes did not happen overnight.

I think the number one question that people always ask me is “how long did it take to get better?” The thing is that I don’t have an answer for that because you don’t suddenly make huge lifestyle changes all overnight.

You don’t say, “I’m going to exercise five days a week, every single week.” Nobody can do that. You have to slowly build up. Maybe you exercise once a week. Maybe you exercise twice a week. You push it a little bit more each and every day.

The same thing went with the diet. Yes, I did the Whole30. By the end of the diet, I thought maybe my pain was better, but I couldn’t really tell. It wasn’t until I went to reintroduce gluten – I think I had pasta – immediately the pain shot up. I thought, “Wait! That’s it!” From then on, I thought, “I’m going to cut out gluten.”

But for anybody who has ever made the decision of “I am going to eat better” it is not “from now on, I am never going to touch gluten for the rest of my life.” It goes back and forth.

There were days where I would be at a birthday party and there would be cake. I would say, “I’m going to have a slice of cake. It’s no big deal!” then immediately regret it the next day.

I love cheese. Cheese is probably my favourite food in the whole world. That was the hardest for me to give up. I was constantly going back and forth. “Do I really give this up? Is this really working? Maybe this whole diet thing isn’t working. What’s the point? If eating gluten and dairy isn’t going to affect me, I’m going to go ahead and eat it because I miss ice cream, so forget it.”

There was a lot of back and forth and learning experiences until I finally made those huge lifestyle changes and was able to really see the benefit from it.

Dan: Small changes over a longer period of time. How long is it that you’re doing this stuff where you suddenly go, “There’s a significant change. I’m improving”? How long was that?

Rachel: It was a year.

Dan: There was enough evidence for you to persist for a year because you noticed that, when you weren’t doing it, you were worsening, but it wasn’t like, “Hey! I’m cured!”

Rachel: No, definitely.

Dan: It was just a little bit better.

Rachel: Yes, exactly.

I think that that can be very frustrating to some people because we do expect. “Well, she told me that exercise would work. She told me that cutting out gluten would work. It’s not working! Why am I doing this?”

I think that it’s really keeping the faith and knowing that, even if it doesn’t work, exercise is always a good option. It’s always good to exercise for your heart, for your body, for your muscles. It’s a good habit to have anyway, so keep doing it.

The same thing goes for eating healthy. It might not be gluten and dairy. It might be something else. I’ve had some people reach out to me and say that, for them, it was artificial sweeteners or corn. It wasn’t until they cut those out that they felt different.

Dan: Okay. You’re doing this. Did you keep going and going until you get better and better until you’re fully well? Or did you do other things?

Rachel: I kept going and going. I noticed, “My pain is not as bad today. This is interesting.” But I was also making other lifestyle changes as well. It took me a while to realize that those were connected.

I made other lifestyle changes because they were healthy changes, but not necessarily because I thought it would affect my fibromyalgia. Now, looking back, I really do think they made a difference.

The first thing is sleep. Like I mentioned, I was a chronic under-sleeper. I got maybe two hours a night and that was it. Eventually, I learned. “You know what, Rachel? That’s not healthy. You should fix that.” I really made a priority to sleep.

I got blackout curtains, so my room is dark. I even bought one of those face masks to block out the light. I set a routine. I made sure to go to bed early and wake up at the same time every day. There are a thousand different things you can do to really help your sleep. I did all of them to really prioritize my sleep.

I also started yoga. It was something I did in college. I really enjoyed it. I started working at a yoga studio where I cleaned the studio. I was basically a janitor. I got to take classes for free. I thought, “Why not?” I started going to yoga regularly as well. It did wonders for my mental health, my stress levels, and my anxiety just to have that time to really breathe and focus.

Dan: Interesting!

Anything else you were doing?

Rachel: I think that was it.

I was exercising at that time. I started to learn how to do weightlifting. That was a big hobby. The diet, obviously, and the yoga. I think all of those connected. Also, obviously, quitting my stressful job helped lower the stress.

But now, when I tell people, “If you are exercising, if you are eating a certain diet, and maybe that’s different for everybody. Some people are vegan. Some people give up gluten. There are many ways that you can tackle it, but whatever it is that you are doing, if it’s working for you and you’re doing that, but you still feel like a piece of the puzzle is missing and you think, ‘I’m doing all the right things, so why is this not working?’ I really think that looking at stress levels and looking at your sleep are the missing keys that a lot of people might not be looking at.”

Dan: It’s pretty stressful to have fibromyalgia, huh?

Rachel: Very.

There are so many things that can cause us stress, but we as a society are stressed out, and we pretend that it’s just part of life, but whatever we can do to fix that is so important – even if you don’t have fibromyalgia. Maybe that’s seeing a therapist. Maybe that’s quitting your job. Maybe you can’t quit your job because the financial obligations are going to be too stressful.

I think it’s going to be different for everybody to figure out what is going to help with those stress levels, but I think it’s so important.

Dan: What else did you do to reduce your stress? Fibromyalgia is stressful.

Things are better a year down the track – 18 months, two years, I’m not sure exactly how it’s all panning out, but things are getting better. Let me ask you this question. How did you feel about the pain?

Rachel: I guess I felt a little angry about the pain at first, especially because I tied it to this water-skiing accident. There were many days where I thought, if I had only not gone water-skiing, if I had only never done that and never got injured, I would not be dealing with this right now.

I think that that’s probably very common – to wish that whatever sparked it had never happened – but something that I really try to concentrate on is that, if you are susceptible to have fibromyalgia, it will always be there dormant in you. It just takes one thing for it to come out.

Whether that was the water-skiing accident or whether that’s ten years down the line of getting into a car accident or maybe childbirth or a thousand other things that could happen in life, eventually it’s going to come out.

I really try to focus on that eventually I was going to get fibromyalgia anyway. At least it happened while I was young and had the hope to push forward and find something that would work for me.

Dan: You talked about yoga. Were you doing meditation as well?

Rachel: Yes, a little bit.

Dan: As part of yoga? Obviously, it can be part of yoga.

Rachel: Yes, exactly.

I know meditation is so good. I have read all of the meditation books. I know I have to meditate, and I hate meditating! I hate sitting still. I can’t quiet my mind. I have racing thoughts all of the time. Meditation is hard!

Anybody who has ever tried it will probably say the same thing. That’s why it’s called a meditation practice. You don’t sit down and suddenly are amazing at meditating. It takes years for some to get it right. But what I noticed was, with yoga, it was easier to meditate.

It was two-fold. I noticed that whenever I could concentrate on what my body was doing – the movements, the flow of yoga – my mind would shut down and would get quiet. It was very similar to what happens when I dance.

When I was a competitive dancer and I was concentrating on the steps or my body moving, all of the stress and things that I was thinking about for the day would disappear. I think that’s another form of mediation.

Dan: Absolutely.

Rachel: It doesn’t necessarily have to be “let me sit in this position – probably uncomfortable – and try to quiet my mind.” It’s not too hard. Dance. Yoga. Even exercise in general. Anything that has your body moving or stretching can sometimes really help you centre yourself easier.

Dan: What about other things? Did you do other things? Did you get any psychotherapy?

Rachel: I did not. I actually did not see a therapist until after my pain started to become controlled.

I would say it was maybe 2013 when I noticed that I wasn’t eating as much food as I should and was losing quite a bit of weight. This is a side effect of cutting out certain foods.

We hear this term now “orthorexia” where people will only eat clean or will only eat certain food and get very stressed out of if they veer off and try to eat something else. I was dealing with that.

Also, some body image issues like any other dancer will tell you. All dancers struggle with body image. I couldn’t understand why I was having some of these fears around food and body dysmorphia until I ended up going to a therapist. That really did wonders to find this balance.

Yes, it’s okay and good to cut out certain foods that are irritating your IBS, your fibromyalgia, and your body in general, but if there are foods that your body can tolerate, you need to eat them, and you need to not be afraid to eat them.

Dan: You did that therapy. How long were you in therapy for? Did you find it was very successful? What kind of therapy? CBT?

Rachel: Yes, I am a huge fan of cognitive behavioural therapy. That’s what it was.

It’s interesting because, when I made the appointment, I was not seeking out a certain type of therapist. It happened that that was the method that she used. It did wonders.

It did wonders – not only for my thoughts and feelings around food but in general with some of my general anxiety disorders, teaching me how to concentrate on breathing or different grounding exercises for when I get overwhelmed. I graduated from therapy in six months.

I am a huge fan. I highly recommend CBT to anyone who think that it could be beneficial.

Dan: How often did you go?

Rachel: I went once a week.

Dan: You’re at the end of this therapy now. It’s 2013. Are you recovered now? Or is it going to take a little bit longer?

Rachel: I wasn’t experiencing any symptoms anymore. I was exercising regularly. It was now easy with the lifestyle change for me. I went to the same doctor who diagnosed me.

I was telling her about all of these changes that I made and how I think it worked. I’m like, “I don’t think I have it anymore.” We did the pressure point test again for diagnostic and none of them lit up. That’s pretty much the only thing you can test right now. Hopefully there will be a blood test at some point, but there are no tests right now. It’s just that pressure point test.

The fact that none of the spots lit up was pretty much the sign. “Okay, Rachel. You are in remission.” Something that I try to be very clear about when I share my story is I am not cured. There is no cure.

If at any point in my life I maybe stray away from this very balanced life of no stress, getting good sleep, working out regularly, and sticking to my diet, if I veer off from that for too long, it will come back. The symptoms will come back.

Dan: How do you know that?

Rachel: Because I have made that mistake. The most recent in December 2017 to January 2018.

I was working in an incredibly stressful environment. It was not good for my mental health. It was not good for my sleeping at all. It was causing so many of these mental health issues to come back. My stress level was going through the roof. I couldn’t sleep at night. I was crying all the time.

All of a sudden, I started noticing, “Here comes the pain again!” Thankfully, because I was still exercising five to six days a week, because I was still sticking to my diet, it was curable. It was nothing like it was before, but it was enough. It was definitely this hum of pain throughout my body that said, “If you continue down this path, it’s going to get worse.”

In January 2018, I quit my job. I was incredibly fortunate that I had been putting money away into savings, so I could do that where I had enough money to say, “No, I’m not going down this road again. I quit.” Three to four weeks after I quit my job, all of the symptoms went away.

Dan: So, Is fibromyalgia a bad thing?

Rachel: That’s so funny because this is going to sound terrible but getting fibromyalgia was probably the best thing to ever happen. I think the only reason I can say that is because I’m in remission.

I think that saying that out loud to someone who is not in remission is incredibly offensive because, if you are in pain and you are living with that, it is obviously not the best thing to ever happen to you, and how dare I say that.

Dan: It’s the worst thing in the world.

Rachel: Exactly.


100 percent. I admit that the only reason I can say that is because I have found remission, but looking at my life and the road that it was going down back when I was 25, the fact that I wasn’t exercising, I was eating fast food, I was sleeping two to three hours a night at most, having a very stressful job when my stress levels were very high and my anxiety was very high, none of that is healthy at all.

Even if I never got fibromyalgia, those things could have caused a thousand other horrible health issues. Comparing Rachel when I was 25 to Rachel now, it’s like night and day. Now, I eat incredibly healthy. All my fruits and vegetables. Drinking my water every day. Meditating. Going to yoga. Exercising. All of these other really, really healthy things that I personally think everybody should do.

It really took getting that fibromyalgia diagnosis to finally scare me into saying, “You need to be healthier, and you need to make these changes now.”

Dan: Imagine, those symptoms came back when you had that job in 2018. Why were you in there?

Rachel: Why did I still have the job?

Dan: Yes, we have to ask ourselves sometimes, don’t we? Why does it take something like that to make us quit? Let’s say you didn’t have any money, why would that stop you quitting? If it’s a toxic job, we can always make a shift, can’t we?

Rachel: Yes.

Dan: We can get another job.

The reason I bring this up is I think it’s an important thing to think about. Why are we in those situations? You talked about this potentially intrinsic quality that fibromyalgia will always come out. There are a lot of people who would be in that job who wouldn’t stick around for a day.

Is it a genetic quality? Or is it a choice?

Rachel: That’s a great question. 

It’s something that I think I will always probably struggle with. Honestly, therapy is probably the best way to work on it. But having that thought of not wanting to be a quitter or not wanting to fail, that was definitely a big part of it. Quitting my job felt like failing.

The other part of that was also sometimes it’s very hard to really trust in yourself that you are good enough. Something that I said to a lot of my friends who said, “Rachel, why are you still on this job? Why are you still working here?” I said, “Because I don’t think I can find another one. If I quit my job, I don’t think anyone else will hire me.”

More importantly, in my mind, the salary at my job was so high that I thought no one else would ever pay me that. I wasn’t too far off. It took me 18 months to find my current job. It definitely wasn’t an overnight thing. A lot of those fears were somewhat founded.

Again, like I mentioned, it’s hard to find a job sometimes. That fear holds a lot of people back and holds a lot of people in these toxic environments because they are not ready – or they don’t want to spend like I did 18 months – to find the next thing.

Dan: For sure. It’s a scary thing.

There is this divide in our society. There are the people who have never been ill, and then the people who have experienced chronic illness. I’d say there’s another divide which is the people who have lived this fairyland life and the people who have faced real adversity – whether that be violence, crime, financial hardship, whatever. There’s always this before and after.

It’s interesting how our values change when we go through that. It’s important to learn these lessons in life and consider what’s important because are often under a delusion. I hear this story all the time, Rachel, and I wanted to take a moment for us to explore it a little bit.

You’re talking about this job and this salary and all of this. Let’s say you didn’t have fibromyalgia and you were immune. You had a genetic defect which meant you couldn’t get fibromyalgia unlike all the other people in the world. How long do you reckon you would have been able to stick at that job?

Rachel: That’s a great question. I probably would have lasted another year – if not more.

Dan: Then what?

Rachel: I honestly could see myself having a mental breakdown and that being the end.

Dan: If we then look at that salary that was higher than any salary you could get anywhere and we averaged that over two years or five years or ten years or twenty years, it’s insignificant. See, these are the changing rules that we all go through. I think we all go through that as we get older and we have more and more experiences. It’s a shifting goalpost for me every year, and that is life.

Rachel: Yes.

Dan: These are important things. We’re talking about performance and achieving in life. It’s about getting the balance right between sometimes we have to stick it out. We don’t want to be a quitter. We all know we don’t want to be quitters, but where is quitting a good idea?

You’ve had this experience. Do you think it’s changed how you look at things? Do you think post 2018 when you had that month-long or however-long that was mini relapse because obviously you didn’t have full-blown fibro but you had enough to say hello, do you think that’s changed things? I wonder what your thoughts are.

Rachel: I would say I don’t think the relapse really changed things. I think getting my current job is what made me realize and made me look at careers a little bit different. It did take me 18 months and it was incredibly hard but, again, no one is coming to save you.

I thought, “What skills can I learn to make me more employable?” That’s why I ended up going into web design and trying to figure out what it is that I love doing and let me focus on that and let me build skills that make me employable.

Now, I have this job, and it is amazing. My team is amazing. I am actually making more money now than I was at that toxic job. That really solidified the idea of hope and that things don’t happen overnight. It took me 18 months, but it finally happened. When it happened, it was better than anything I could have expected.


If for any reason at all, I cannot be in this job – whether there is a management change or I get laid off because of another recession – you never know what could happen with jobs, but knowing that it has happened before and it will happen again, knowing that if anything should happen where I have to step away from this, there is going to be another opportunity down the line if I have faith that it’s coming.

Dan: Faith is a powerful thing, huh?

Rachel: Yes.

Dan: During recovery, were there times when you thought you were doomed?

Rachel: Yes, and I don’t know if it’s better or worse that I didn’t have anybody to talk to when I was going through my recovery. All of the things that I was doing, I was making it up as I went along.

I’d hear a thing and I’d have to believe that the choices that I was making were going to help. I had to believe that exercise would eventually help because there were no stories online. There were no Instagram accounts of other people who found remission.  There was nobody that I could say, “Well, it happened to her, so maybe it will happen to me.”

I don’t know if it’s a good thing or a bad thing because, on one hand, I had to have faith in myself; on the other hand, I never had to compare my journey to somebody else’s. I know that that can be frustrating for people who might be exercising, might be doing a particular diet, might be doing all of the things that are supposed to be right, and it’s not working or it’s taking too long.

They come across my YouTube channel, or they come across my Instagram account, and say, “It’s not fair! Why is she in remission and I’m not in remission? It’s not fair.” I never had to deal with those feelings.

When people come to me and say that, I always say, “Don’t follow me. Don’t look at my Instagram. Don’t look at my YouTube. You can send me messages and we can talk. If knowing about me and seeing my progress or seeing that I can do all of the things that you wish can do is affecting your mental health and your own journey, cut that out until you’re ready because one day, when you are in remission, then you will come back to me and say, ‘Oh, my god, Rachel. It worked.’”

Dan: When we talk about it, what is it? It didn’t stop your diet when you had your mini relapse. It didn’t stop your exercise. If we’re talking about other stressors, that’s different for everyone, isn’t it?

Rachel: Yes.

Dan: Somebody else can’t go to your psychotherapist and say, “Hey! Can you help me with general anxiety disorder so I can get rid of fibromyalgia?” because the doctor will go, “But you don’t have general anxiety disorder.” “But can you help me with body dysmorphia?” But you don’t have body dysmorphia issues or food issues, so they can’t help you with that.

I think this is a key thing for when those people get discouraged. “Why not me? Why you?” It’s to remember – like you say – there is no magic cure for this illness, but understanding what’s going on here and hearing your story. There’s so much wisdom in there and there are so many clues of how it happens. It’s about finding your version of that.

Rachel: Yes, that’s exactly right.

Dan: I think people should really hear that it’s about finding their version.

Let me digress for a moment as we near the conclusion. Recovered – what does it mean? You became pain-free. You became symptom-free. Your doctor could no longer diagnose you.

By the way, did you ever go back to that fibromyalgia specialist?

Rachel: No, I never went.

Dan: All right. It would be interesting to see what he would say.

You can live your life normal, right? You can do what you want.

Rachel: Yes.

Dan: Some people might call that cured. I hate the word “cured” personally but whatever. Call it remission. I don’t like the word “remission” either because I feel like remission is almost worst than cured. Cured suggests that you can never get it. Remission suggests it’s still there and could come back any moment. I know we’re in recovery, but there’s no perfect word yet.

Have you eaten cheesecake since you recovered in 2013?

Rachel: That’s a funny story. Yes, I have, and that was something that hasn’t happened until recently.

At the very beginning, I really had to be very strict and say, “No dairy. No gluten. Nothing.” I had been pain-free for years. This was probably in 2018 or 2019. Again, very recently. I said, “I’m going to try a yogurt. Let me just see what happens.” I had one yogurt and nothing happened. I was still pain-free. I thought ,”That’s weird.”

The next day, I was like, “Well, I’m going out to dinner. I’m going to try to eat some bread – the free bread that they always give. Let me just try it.” Nothing happened. I thought, “Wait. Am I cured? Can I do this now?” By the third day, I can’t remember but I think it was pizza.

Dan: You’re going to go whole hog now!

Rachel: Yes, immediately! I thought, “This is interesting!”

I noticed that, as long as everything else is perfect, as long as I’m following everything else, I’m fine. If I have a slice of cheesecake or have a bite of something, I will be okay. My body will process it and I’m fine. But it’s a build-up.

I irritate my gut a little bit. The next day, I irritate it a little bit more. Then, my body says, “No, no, no! What are you doing? You need to stop this.”

Dan: Do you think you still have symptoms of IBS? Would you say you still have IBS? Because people often see those as a different condition to fibromyalgia.

Rachel: Yes, I still have IBS. I’m constantly working on that. Unfortunately, IBS is one of those where it’s like, “What are you going to do?” You drink your water. You avoid the foods that irritate it. You take over-the-counter medication, fibre supplements, or whatever it is that you need to do. But that’s something I still struggle with. I think that it happens to normally coincide with having fibromyalgia.

Dan: If you strayed off your diet, you get IBS symptoms. You don’t get pain flare-ups or something?

Rachel: No.

With things like if I went whole hog – pizza, pasta, anything just a lot for my system – the IBS symptoms flare up and the pain will come with it. But something that I feel weird saying because I’m like, “Well, is it fibromyalgia? I don’t know,” the minute the IBS symptoms go away, or the minute that I start moving, the pain goes away immediately.

For me, if I did have a moment where I had pasta or pizza and immediately regretted it and thought, “What did you do? I can’t believe you just did that!” I go to the gym and start exercising. It’s not because I ate something unhealthy and trying to out-exercise any of the things that I ate. It’s just to get my body moving. It helps with the digestion of everything and helps get the blood circulating.

Typically, by the time I leave the gym, the symptoms have disappeared.

Dan: Interesting. Thank you for sharing your story!

Seven years now that you’ve recovered with a little mini blip in 2018.

When you think about fibromyalgia, does it feel different now? Does it feel like a distant memory? Or is it still close and raw?

Rachel: I sometimes feel guilty for saying that I have fibromyalgia.

I never tell anyone anymore. It’s not something I talk about. It’s not something I bring up because I am symptom-free and I am “normal.” I almost feel like it’s not fair for me to say that I have it or that my life experience could even compare to someone who is still going through it.

It’s something that I struggle with because, on my social media, I do try to talk about it and say, “I have this, and this is what I’m doing,” but I’ve noticed that I talk about it less and less because it is becoming a distant memory.

Dan: It’s interesting. You still say the words “I have fibromyalgia” even though the doctor couldn’t diagnose you with this condition any longer, right?

Rachel: Yes.

Dan: What do you think is behind that?

Rachel: I think that that’s tied to knowing that it’s not cured.

Dan: It’s not like it can’t come back.

Rachel: Exactly.

It’s something that is a part of me. I think it’ll always be a part of me. Even when I was feeling symptoms, I think it’s very easy to let fibromyalgia define who you are. I see a lot of people hold onto it as an identity because it is all-consuming. But at least for me, it’s something that I have and will always have, but it doesn’t necessarily always define me.

There are many other things about me and what makes me “me” and that’s just a tiny part of it.

Dan: It’s because you’ve got a life.

When we’re really experiencing fibromyalgia, there is nothing except fibromyalgia. Some people are able to manage their fibromyalgia and still engage in life somewhat reasonably, but for many of us, it becomes complete shambles.

Rachel: Yes.

Dan: Certainly, when you are in remission, as you put it, and you’ve got your life back, it’s easier to put it into a different perspective, isn’t it?

What would you say to people who are still ill with fibromyalgia? What’s your message to them?

Rachel: I think my message is this is your life, and it’s up to you to find the answer, and it’s going to take a while. Nothing is going to magically appear. The answer is not going to magically appear. Finding what works for you might take a year, but eventually, you are going to find it.

If you hold onto that hope, even if it takes years, knowing that one day you will be able to look back on the time now and think, “Thank God, I didn’t give up! Thank God, I just kept trying!”

Dan: That’s fantastic advice, Rachel. Coming from somebody who had given up.

That’s fantastic advice. I thank you for sharing your story. Every story has the power to help us make a little bit of a shift. Certainly, what you speak about here is the hope and the faith. I think these are the first step because, without that, no action will come. Clearly, your story was all about taking that action.

Let’s face it, for people who have fibromyalgia, it’s not a lack of trying. Before I gave up, I had tried – well, I hate the word “everything” because obviously nobody tries everything but we all think we try everything but we don’t. Certainly, it was an exhaustive list of things.

As you say, people see you talking about the diet, talking about the sleep, and talking about all these wonderful strategies you’re saying, then not getting those results. Is there anything you think you could say to them?

Rachel: I think the thing that pushed me forward was all of the changes that I made in my life, all of the choices that I made had made me a healthier person – whether or not they affected my fibromyalgia.

Let’s say you’re exercising, you’re eating a certain diet, you’re sleeping well, you’re doing yoga, you’re meditating, and you’re doing all of these things, and they’re not affecting your fibromyalgia, don’t stop because they’re making you a healthier person anyway.

Dan: They’re making your life better.

Rachel: Yes.

Dan: Regardless of whether the fibromyalgia symptoms are changing or not, your life is better for these things. Isn’t that the ultimate goal?

Rachel: Exactly!

Holding onto that because I have had a couple of people reach out to me and say they had been exercising for two years and were convinced it would never work and they would never get better, but they were exercising because they knew it was healthy for them, so they kept going.

After two years, three years, all of a sudden, their fibro pain got better. They were like, “I’m so glad I didn’t stop. I’m so glad I kept going. I’m so glad I didn’t say, ‘Well, this isn’t working, so forget it.’” I think that can really help.

Dan: Absolutely. That’s fantastic advice again, Rachel.

It’s adding another building block – another part of the puzzle. If you take it away again, then you’re missing that piece. I love this whole notion that we take away this fear of failure, this fear of “will it work or not?” Forget all of that.

If you’re doing something that makes you feel better mentally or that is good for you in your lifestyle and your health, then whether it affects the fibromyalgia or not, it’s a win. To take that pressure off – “I’m doing this. Is this going to work?” – that pressure is not enjoyable and it certainly isn’t helpful. I think that’s awesome advice.

Rachel, thank you so much for sharing your story. I really appreciate it. I know that people listening will be very inspired. Thank you very much!

Rachel: Awesome. Thank you so much! I really appreciate getting a chance to share my story!

Dan: Thank you!

Thanks for tuning into this episode of the podcast! We hope you felt supported by it.

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Links

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Other Resources

Paperback & eBook

CFS Unravelled is the book that started it all, outlining the explanation for the pathogenesis of ME/CFS, Fibromyalgia, POTS, MCS and related syndromes and explaining how recovery is possible.

Learn more HERE.

All my email subscribers receive additional FREE resources like my book Discover Hope.  So consider subscribing and reading the book to rediscover hope.

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To learn how other people recover, listen to the recovery interviews!

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If you would like to learn more about the ANS REWIRE program, check out the 4 free intro lessons or visit the ANS REWIRE website.

Check out some other recent episodes

Episode 4: Dr Jacob Teitelbaum, world leading MECFS Fibromyalgia POTS physician, shares his research and experience
Episode 13: Snippet – Should you change program, coach or practitioner to help you recover from CFS/Fibromyalgia/POTS/MCS?
Episode 1: How to cope and deal with the injustice of invisible illness including chronic illness like Fibromyalgia, ME/CFS, POTS and MCS
Episode 6: What we learned from 100s of conversations with people who recovered from MECFS Fibromyalgia & POTS

You can see the full list of episodes HERE.

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Rosana Kirk

It has been about 6 years now since my diagnosis of ME/CFS. The journey has been very difficult but I have come so far through a commitment to myself and not let this illness take my life away anymore. Finding ANS REWIRE in 2016 had a great influence on my new life in recovering from not so much the illness but from the dehabilitating effects it had on me and making important lifelong changes to support that. Thank Dan Neuffer and ANS!! So glad to hear you are still helping so many in need!

Dianne Nickerson

Remission would be welcomed, recovery would be awesome!

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