Remission, relapse and then a deeper recovery from Fibromyalgia
Adrienne Dellwo shares her Fibromyalgia & Chronic Pain story
Adrienne Dellwo is a name that’s probably familiar to you if you have been reading about fibromyalgia, ME/CFS and related syndromes. She has been the lead fibromyalgia author of verywellhealth.com (formerly known as about.com).
In this wonderful interview Adrienne Dellwo shares her story and struggle with fibromyalgia and chronic pain, including her fibromyalgia remission, fibromyalgia relapse and finally her experience with a deeper recovery from fibromyalgia.
Her experience and current approach to fibromyalgia made us ask deeper questions about what fibromyalgia recovery means to different people. I hope this wonderful interview inspires you and helps you understand the person behind the name; Adrienne Dellwo.
Dan (intro): Adrienne Dellwo. If you’ve done any research about ME/CFS, fibromyalgia, POTS and similar conditions, you’ve probably heard the name before. Adrienne Dellwo was diagnosed with fibromyalgia in 2006 which forced her to stop her career as a TV news producer. Soon afterwards, she became a writer for About.com, now known as Verywell Health. For well over a decade now, Adrienne has been researching and writing about ME/CFS, fibromyalgia and POTS, but many people don’t know her story or perhaps only part of it. In this wonderful interview, we share her story with chronic illness, including fibromyalgia and chronic back pain. She shares how she recovered from fibromyalgia, relapsed, and then went on to make a fuller, more robust recovery, allowing her to enjoy life again.
As the interview seems to draw to a close, our conversation takes an interesting turn. We discussed what recovery means to different people and whether we should really be holding out for “cure” from modern medicine. Adrienne doesn’t see herself as cured and believes that without her current supporting strategies, the fibromyalgia would come back. But if you listen closely to her journey and her advice, you’ll find much wisdom and commonality with other people who made full recoveries without ongoing treatments.
I really enjoyed meeting Adrienne Dellwo and was impressed by her wisdom and tenacity. Given her back pain issues, her experience of recovery becomes a little bit more complicated. Whilst Adrienne’s experience for fibromyalgia recovery may be different than most of the interviews and recovery stories that are published on cfsunravelled.com, it is clear that she has regained her quality of life and her health, even if she still uses some supportive strategies and treatments.
It really made me think about what really matters. Is it about whether you make a full remission, become cured or make a full or partial recovery? Those words mean different things to most people, but what we all can agree on, it’s like to go through fibro hell and then get your life back.
I love the way Adrienne shares what it’s like to struggle with fibromyalgia and how she transcended the illness. Her advice is powerful and valuable, and I hope you enjoy the interview as much as I did.
Dan: Hi, Adrienne. It’s lovely to speak with you. Thank you for coming to share your recovery story on cfsunravelled.com.
Adrienne: Yeah, thank you for the invitation.
Dan: Yeah. It’s great to connect with you. Obviously, I have seen many of your articles over the years and it’s lovely to see you telling a different story now on the other side. But look, we’ll get into that in a little bit. When I talk to people about their recovery, one place I really like to start is at the beginning. And I guess I wondered, what happened at the very beginning where you knew something was wrong?
Adrienne: Something was wrong. Pretty much after my second child was born, everything was off. I had thyroid problems and my immune system was not operating normally. I was sick all the time and I’d had chronic back pain and sleep problems my whole life. And of course, having two toddlers or a baby and a toddler, there was much less sleep. So it was a bit of a struggle from then.
She’s now almost 15. So that gives kind of a timeframe, but it was when she was about 15 months old, a whole host of things just started being strange.
I had cysts forming. I had migraines. I had hormonal issues all over the map and it was just strange. And of course, my doctor was looking at four different symptoms and thinking of four different causes and four different solutions. And it was a few months later, my husband had to go on graveyard shift. So I’m home with the two little kids, stressful job as a TV news producer and that job is just, it’s intensive. I compare it to juggling knives blindfolded.
It’s basically as stressful as a job can be when nobody’s life is on the line. And my husband had come home and go to sleep. I’d have to get the kids up and dressed and to daycare and then go to work and come home and get dinner and he’d leave for work and I was dealing with the kids all night.
Yeah. So that was hard enough. And then, they started having ear infections. Of course, one would have it and then the other would get it. I went about six weeks without getting more than three consecutive hours of sleep. And I remember thinking at one point, how much can the human body take before something gives? And it was about two weeks later that I had the answer.
Yeah. I was sitting at work and started having just this crushing chest pain. So of course, first thing I think of is heart attack. And so, I told somebody and it wasn’t getting better and I was getting dizzy and of course, I was panicking because I thought I was having a heart attack. So I ended up in an ambulance to the hospital. Nothing is wrong with my heart. Totally fine.
Dan: How confusing is that?
Adrienne: Yeah. It wasn’t anything gastric. They tested for that. Eventually, they decided it was a soft tissue injury where the breastbone and the ribs meet. It’s called costochondritis.
Oh, yeah. That was the first time I’d heard of it. So of course, I had no idea that one of the main causes of it is fibro. So they sent me home, said, just rest, ice, do what I can. It’ll get better. They said, “You have young children you’re holding. They probably have just squirmed or kicked or something and injured that spot.”
So of course, it doesn’t get better. I ended up sleeping in a recliner because every time I lay flat, I feel that crushing pain again. And a couple of weeks after that, I started having lower abdominal pain on the right side. So of course, we’re thinking, what is this? Appendicitis maybe? Looked up, saw that appendicitis attacks can sometimes refer pain to higher in the chest. I thought, maybe that’s what it’s been the whole time is something with the appendix.
Go back to the hospital. My appendix is fine. So I’m sure at this point, everybody who’s gone through this diagnostic process is like, “Yup. The whole string of weird things.”
I started having really extreme allergies. Things I’d never even been allergic to before like mustard and my dust allergy went through the roof, ended up in the hospital twice with anaphylaxis. And by this time, the pain was, I just had this constant pain in my abdomen, but it would move around. It was always chest or abdomen, but it would bounce from one spot to another and it was just strange and I had no idea what was going on.
So of course, my primary care provider was testing for lupus and rheumatoid arthritis and all these different things that came back negative. I had that typical slight elevation of the inflammatory markers, but everything subclinical.
So finally, after about five or six months of going through this and just being frustrated with no answers, my husband and I started pushing for a referral to a rheumatologist. And at first, we got, well, they sub-specialize. I don’t want to send you to the wrong one and then you’ll have to change again once you get a diagnosis and all this.
And after, I was like, “No. Just send me to someone. I don’t care if I’m going to end up changing again. Just send me.”
And he said, “Well, we have a new one in this clinic, so I’ll send you to her. She seems very smart and I think she can figure out what’s going on.”
So a couple of months go by, I’d finally get into the rheumatologist. She had me diagnosed with fibromyalgia in five minutes. She’d looked at this whole string of things and of course, she knew exactly what was going on.
Did the tender point exam, 15 of 18 spots were extremely painful and the rest were a little uncomfortable. So clear diagnosis at that point.
So at that point, it was just before Lyrica was approved. So there were really no medications that doctors were saying, “Yeah, this is the way to go.”
She pretty much told me, do what you can to manage it. And that was it. It was fortunate because she happened to practice Eastern and Western medicine together. And so, I did start getting a custom blend of herbs from her and she started doing acupuncture. And those two things definitely helped.
Dan: Right. So what did your doctor say about the prognosis?
Adrienne: She didn’t really give me a lot of information, which is kind of common unfortunately. She basically said, “Some people get better, some people don’t.” If there are supplements that help, if there are lifestyle changes that can help, but really, there was very little guidance.
Dan: Presumably, with your journalism background, you probably had to look very quickly and had to look around. What was your outlook? I mean, what were you expecting?
Adrienne: When I first did some research and started to kind of wrap my head around what it was, first, it’s pretty shocking to realize, “Okay, this is something that medical science doesn’t get at all. And yet, it’s hardly rare.” I mean, there are people everywhere with these stories that were so much like mine and just no help. So that was a big hit. But I’ve never been somebody to just accept defeat in any way.
So I was pretty determined I was going to figure out something. Started trying different supplements and anything I could. Really didn’t want to quit my job, but that was in the back of my head that that might have to happen. I did eventually tie everything to my hormonal cycle, talked to my OB-GYN about that and he recommended an endometrial ablation because it cuts out the hormones that are put off by the uterus and just the timing of things, he was pretty sure that was the hormone that was really triggering the worst of my flares.
I was basically having one good week, one kind of lousy week, and then two horrible weeks and then it would just start over. So we did the ablation and it did help significantly. I didn’t have the really extreme two week-long flares.
Didn’t get rid of it entirely, but it did help quite a bit. I had a lot more good days and the flares were a lot shorter and probably not quite as intense. They were pretty bad, those first early months. And then, yeah. With the acupuncture and the herbs and the supplements that I was finding, it was all little incremental steps.
One symptom might improve or a small set of symptoms. But then after about a year of really trying hard to keep my job, I decided, I just could not do that and have any hope of getting better.
Dan: Yeah, yeah, for sure. Look, I mean, obviously, the symptoms get worse, get better, get worse. It’s almost like emotional abuse, you know what I mean?
Adrienne: Oh, yeah.
Dan: What was it like at your worst? When was the illness at its worst and what was your low point? Because sometimes the low point is not when it’s at its worst.
Adrienne: My low point and the worst of the illness did really coincide. I was getting up in the morning, getting my two toddlers off to daycare and my noise and light sensitivity were extreme and there were some mornings that I would walk into daycare to drop off the kids and the noise in there would just send my entire body into these muscle spasms and shakes and pain just ricocheting all over and the cognitive dysfunction would just soar to the point that I’d walk out in the parking lot and almost not being able to find my car.
So there were days that I would get to that point. The kids are dropped off and now, I have to go home and call in sick because there’s no way I can safely drive myself to work, let alone put in a stressful 9-hour day of producing television news.
That was really difficult. And then the days that I was at work, there are some days that are relatively calm for that environment. But then there are the really stressful days where I’ve spent six or seven hours putting my newscast together, and then something happens and it all gets thrown out and you basically improvise it on the air with five reporters out live in the field, all calling in, telling you different information and you’re communicating changes to the anchors constantly and yelling for this video and someone make this graphic and pull up this live shot next and it just gets insane. And all of this is live on television where one mistake on my part brings the entire house of cards crashing down and it’s a disaster.
Those days, there were days that I would come out of the newscast and almost collapse and call my husband and say, “I need you to come pick me up. I can’t drive home.”
There were days that I didn’t get to the newscast because I remember one day in the middle of just the storm of breaking news story, after story, after story was breaking late in the afternoon and it was a five o’clock newscast. So that period between three and five, everything seems to happen then.
I had tried calling somebody that I needed to make a specific map of an area and they weren’t answering their phone. So I leave the newsroom and I’m racing down a hallway and my vision literally just went black and I bounced off of some filing cabinets on the left and then off the wall on the right and just kept going and I heard the news director behind me who happened to be sitting at a conference room and had a view down that hall telling somebody else, “Oh God, get Brian,” who was the 11 o’clock producer. “He’s got to take over for her,” because I was literally staggering down the hall blind, like I was drunk in the middle of everything falling apart.
That was pretty bad. I think my lowest point at work was one time when someone had told me, “Oh, there’s an accident on the freeway.” Gave me some details about injuries and the number of cars and that kind of thing.
And I said, “Okay, I’ll put that in.”
10 minutes later, she comes to me and says, “Where did you put that in? I don’t see it.”
And I was like, “What accident?”
And she’s like, “We just had a conversation about this 10 minutes ago. The crew is almost on-scene.”
And I was like, “I’m sorry. I have no memory of this. You’re going to have to start from the beginning.”
Dan: How did that feel at that moment?
Adrienne: It was absolutely horrifying. Oh, yeah. The fact that I had zero memory of a conversation, because that job, you rely on an extreme multitasking ability and short term memory because literally, you’re sitting in a big room with about 25 people. There are televisions and radios and police scanners and telephones everywhere. You’ve got people yelling information at you from across the room, and you have to be able to synthesize all of that and put out a coherent product.
And if I was engaged with someone and not just hearing stuff ambient in the room that I needed to know, but actually engaged in a conversation and then couldn’t remember that it even took place, how am I going to do that job? How is that possible?
The language impairment with losing words and not being able to express a thought and some days, knowing information and looking at the screen and going, “I don’t know how to put the words on the screen anymore.” I had gone from being one of the better producers in my market. I could have if I had chosen to have gone to a much bigger market. I’d had job offers from Portland and Seattle that are significantly larger than where I was working.
And all of a sudden, I couldn’t do the basics of the job. I mean, that was devastating. So much of my personal identity was wrapped up in that job. I put myself through college to do that. I worked to get to where I was and then it was just gone.
Dan: Mm-hmm. Big shock. I mean, I have to say, I always still to this day, so many years afterwards, still get emotional. Not by the symptoms, but by the persistence to try and keep up appearances, to try and keep going and I think only the people who are listening to this actually understand what you really went through, because on the surface, you can hear the words and anyone can understand it, but when you know what it feels like and to know what it would take to keep up the appearances, it kind of brings tears to your eyes.
Adrienne: Yeah, it is. When I hear other people’s stories, it always brings those emotions up fresh again. Losing this huge part of myself and having to make that decision that, “No, I have to leave. I can’t do this job.” My first news director when I had an internship in college, pulled me aside and he’s like, “You are made to be a producer and I want to train you during your internship and you’re going to be this hotshot producer. You’re out on your own.” And my career was going exactly in the right direction, and then it’s just over. I was no longer that person who did that job.
Dan: So it’s a real decision. And when you make that decision, it’s kind of like, because let’s face it, there’s always a part of us that is in denial when we have a chronic illness, isn’t there?
Adrienne: Oh, yeah.
Dan: And it’s that moment where you say, “I’m resigning.” I mean, boy, that really brings it home.
Adrienne: Yeah. I did keep thinking, “Okay, the ablation worked. The acupuncture is helping, this is helping, this is helping.” But in the end, I was doing the job at about 70% level and I had nothing left for my kids when I got home. I had two toddlers. They needed me.
So it really was difficult. Once the decision was made, I mean, there were a lot of tears. There was certainly some relief once it was made, but getting to that point was just agonizing.
Dan: Look, if I may Adrienne, I might just take you back a little bit earlier to the start of the illness. Now, you said leading up to the start, obviously, you had your second child, you were in a very demanding job, you had no sleep, goodness. Two toddlers and the ear infections. Did anything else happen leading up to this period? If you look at the sort of 18 months to 2 years leading up to the birth of your child, did anything else happen?
Adrienne: I had crazy pregnancies and I had gestational diabetes very severely to the point that they first thought this might be Type 2 that I just happened to be diagnosed during pregnancy. I did have to have C-sections. And that’s such a common thing that you hear from women with especially fibro, but also with CFS to a point that they’ve had these gynecological surgeries, whether it’s a C-section or a hysterectomy within a couple of years before it hits, because it does throw your hormones into a complete tizzy.
When I weaned my daughter, which was when she was about 15 months old, I did go into premature perimenopause. So I mean, my hormones were just all over the place.
Dan: From pregnancy to that? I mean …
Adrienne: Right. From pregnancy and then … Oh, yeah. Yeah. And my kids were just two and a half years apart. And so, there was a lot going on for sure, medically, in those few years. So a lot of trauma. The recovery from two surgeries plus during the second one, I had my tubes tied. And so, there was extra trauma. And then, yeah. And I think going back even farther, when I was a teenager, my boyfriend came down with mono.
So of course, I started getting a sore throat. I was like, “Well, great, I have mono.” So I went to the doctor. He diagnosed me with tonsillitis. The mono culture came back negative. So he treated me for tonsillitis and in retrospect, I could really kick him for not thinking at some point that maybe it wasn’t just tonsillitis because I went through 9 or 10 months of on again, off again horrible sore throats, exhaustion. I mean, the mono symptom is right down the line.
And I was 15. I didn’t know what to question my doctor and it didn’t end until I got my tonsils out. But I was really sick for that period of time and I’m 100% certain that that negative mono test was a false negative, because you look at what the Epstein-Barr virus does to the body, it’s exactly what I was going through. And once I had my tonsils out, the doctor said, “Oh, you will probably be immune to things like strep throat and that kind of thing because you don’t have your tonsils.”
Well, I’d never had strep. I’d been exposed to it plenty because my sister got it two or three times a year and then my mother always got it, but I had never had it. Two years after getting my tonsils out, I started getting strep regularly.
So my immune system was obviously changed by that whole experience.
Dan: I mean, did you have any other challenges, health challenges or other traumatic things happen to you around that age when you were 15?
Adrienne: No, not around then. I had chronic back pain from about the time I was 10. It was just in a minor accident on the playground that jarred my back and left me with a lot of muscle inflammation. And I also had scoliosis. It was diagnosed when I was about 10. So I had a lot of chronic back and neck pain, sleep disorders. I’ve been diagnosed with chronic familial insomnia which is a very, it’s a severe and treatment-resistant form and everyone in my dad’s family, I think everyone who’s a first degree relative of my father has the same problem.
So I never slept well, had chronic pain, something happened to my immune system and then I basically was just set up for, at some point in my life, the stressors would combine in the right way to trigger this.
Dan: Well, and the thing is like, when we don’t sleep and we have a lot of pain, I mean, that’s pretty stressful and that’s not going to do a whole lot for your immune system, is it?
Adrienne: No, no. It really doesn’t do a lot when your body needs sleep to replenish those cells and the neurotransmitters and all those things and it doesn’t happen. But yeah, you just get to where you can’t function.
Dan: Yeah, yeah. No, absolutely. So you started to get sick with fibromyalgia 14 years ago. Within a year, you have to quit your job, you’re at your lowest and then you find, I guess, a way to work on your own terms, writing.
Adrienne: Yeah, that was great. With a journalistic background, I was researching fibromyalgia constantly from the moment I knew I had it. And so, of course I was learning a lot and learning certain things that did help, different lifestyle changes or supplements and that kind of thing. And then, when I quit the job, I was thinking, “Well, I may have to go on disability,” which I know in the States, it’s very different from much of the rest of the world. It’s a very long, complicated process. There’s no guarantee you’re ever going to get it. 93% of disability applications are denied the first time around. And then you go through a very long appeals process and it’s grueling and it’s a small fraction of what you used to make anyway.
So I didn’t want to have to go through that. So I thought, “Well, I’ll start gathering the paperwork and things that I need to do that. But I’ll also look for freelance work because fortunately as a writer, there are jobs out there that you can do from home.
And so, I had filled a couple. They were just temporary jobs but it helped. And then one day, I was browsing for the next job and came across the listing. At the time, it was About.com and has since changed the name to Verywell Health. But I saw the listing for an expert on fibromyalgia and chronic fatigue syndrome. And their first choice listed in the ad was a medical person who had specialized in these conditions, but they were also willing to consider journalists who’d covered a lot of health issues. I thought, “Well, a journalist who’s covered a lot of health issues and has those health issues, got to be …”
Dan: The most motivated person too.
Adrienne: Absolutely. Yeah. And I poked around on their website and saw that they did have some other people who were in similar situations to me that they did have sick people who were writing about their illness. So I applied for that and I just had the feeling when I initially saw that posting, it’s like, “Now, that’s my job. That is my job and I have to go get it now.”
And so, fortunately, they agreed with me that I should have that job. And so, I have a very rare circumstance as a freelancer that I’ve had the same job and a monthly paycheck for 12 years now. And along the way, I got to do the research I was doing anyway, share it with other people.
At the time, that was when the forums and blogs were really the big thing on the Internet. And so, I was able to build a community of people who were dealing with the same thing I was. And I learned so much from the people who would comment on my blog or who were in my forum and just part of that community because they’ve been, a lot of them had been dealing with it for a lot longer than I had.
So I learned things there that really helped with my recovery. I had kind of this privilege of being able, because we all have to focus on our health 24/7 when you’re chronically ill. That’s just a reality. And I got to earn a living doing that.
Dan: That’s the perfect match.
Adrienne: It really was. It was pretty amazing.
Dan: And you had a great impact on the community. I think there’d be few people who would know your name. So tell us then, you’re sick for a year, you’re thinking, “Wow, this is a long time.” You’re sick for two, you’re sick for three. I mean, are your symptoms changing over time? Are you getting better? Is it staying the same? What happens? Because suddenly, we’re talking about a year or two and now, we’re talking about 14.
Adrienne: Right. Yeah. It’s a big change. I did manage to get progressively better. Quitting my job had an immediate impact because I just didn’t have that stress and the energy expenditure and all of that. So that was a big help. Being home with my children was not always easy. There were moments like when my husband had been painting my son’s room and left the paint cans and my son was old enough not to mess with them, but he forgot to shut his door one time and his sister went in and she’s 2 or 3 and decides to stack the paint cans and then one falls over and the lid comes off. So then I’m trying to shampoo blue paint out of white carpet while the pain in my abdomen is ramping up to about a 14. Yes, there were times.
There’s a spot in front of the heat vent in my bedroom where there’s a red crayon melted into the carpet that we were not able to get out because it was one of those days when mom was in bed, so the kids were on the bed, on the floor in my room, playing, coloring, watching movies while I was not able to get up.
So yeah. A red crayon got left on the floor, right in front of the heater. So it wasn’t easy, but I got better. And then, a lot of thanks to the acupuncture and a very large pile of supplements that I ended up being able to figure out what’s the right blend for me.
I did get steadily better. The fibromyalgia went into remission after about four years, I think, which is pretty good. And I attribute a lot of that to having a job that kept me focused on the research and hearing from other people.
The most important supplement I ever found is called Rhodiola Rosea. And it’s amazing. My rheumatologist recommends that to all of his patients now, but I discovered it over a decade ago thanks to our reader in Europe who I had stumbled across somewhere. That was one of the biggest changes in my health.
Dan: What happened when you started to take that?
Adrienne: The effect it has is basically the same as most of the antidepressants. It’s a serotonin norepinephrine reuptake inhibitor, naturally. I can’t tolerate any of the meds. I’ve tried several of them and they are absolutely awful for me. The Lyrica migraines made me think that I was dying because I couldn’t, even after fibromyalgia and unmedicated childbirth and all of those things, I could not believe that I could be in that much pain and not die. It had to be fatal if it was that severe.
So the Rhodiola, it really gave me back a lot of energy. It helps clear my head from the fibro fog, lowered my pain levels almost immediately. I mean, it was really kind of a miracle drug for me and a lot of people have luck with that because it’s much gentler than the antidepressants, the pharmaceuticals that just like force your brain to do something differently. This one is more just like, it helps it to function like it needs to. And it’s also an anti-inflammatory, an antioxidant and it just has a million good things that it does.
That one and then L-theanine which is derived from tea. That was another one that was really big for me, especially when it came to anxiety and just that kind of restless nerve feeling that you get all over where you can’t sit still and nothing feels right. Yeah. All that. Just that weird feeling that only we get.
So those were the big ones. Vitamin B and Vitamin D also were some of the really important ones for me.
Dan: I mean, what were all your symptoms? I mean, obviously, there was the pain and there was the fatigue and the light sensitivities. Could you just rattle off what all your symptoms were?
Adrienne: Oh, boy. To kind of put them in clusters, the cognitive dysfunction. I had a lot of language impairment, which as a writer, was really frustrating. I remember the nominal dysphasia that a lot of people get where the nouns, you lose those. One time I was telling my kids, “Somebody turn off the phone. You guys know you’re supposed to turn off the phone when you’re done with it.”
And they’re looking at me like, “What are you talking about? We’re 6. We don’t use the phone.”
And I looked over at the object I was talking about and thought, “That’s not the right word. What is it?” And my brain said phone and I was like, “No, it’s not a phone. It’s a piano.” It was our electric piano that they had left on but my brain had switched those. Just the short term memory, I mean, there are big chunks of time that are hazy. That I just don’t remember.
I would watch a movie and then a week later, I’d swear to you, I’d never seen it because I didn’t remember a thing about it. I know there was one I watched three times before I was able to actually remember anything about it afterwards.
It is. One time, I was driving home from work before I quit and I got home and my husband said, “How was traffic?” I realized I didn’t know. I remembered nothing after leaving the backdoor of work until getting home. And obviously, I wasn’t asleep or completely out of it or I would have crashed.
I mean, it was in rush hour freeway traffic, but I had no memory of it at all. So yeah, the cognitive dysfunction was crazy. No ability to multitask at all. I still, if I’m reading something or writing, I will just not hear what somebody says. It’s like they didn’t even talk to me.
I’ve gotten to the point where I’ll know they’re talking but it’s like my brain just doesn’t, it can’t process that while I’m doing something else and I’ll have to stop and my family will understand. I was like, “Wait, I was reading. Say that again?” And they have to repeat themselves. That’s one of the lingering ones that annoys me. But if that’s the only one that lingers, I’m doing okay.
The pain was crazy. I had allodynia where the surface of the skin is so sensitive to touch. That one was awful. I mean, I couldn’t wear a bathrobe with a tie because it was painful. Soft fabrics and no socks because my feet would burn with the elastic and wearing memory foam slippers around the house because the bottoms of my feet were so sensitive. Hair loss all the time. Nails that would get these weird ridges that would get rubbed off and they’d look rough and they peel and crack.
So many of those weird little things that doctors very often don’t even acknowledge that they, “Oh, that’s not part of that.”
It’s like, “No, no, really, trust me. When 98% of people in my forum have the same symptoms, there’s a thing.”
It’s a thing. We do this. We know. The weird skin growth, the little tags and lumps and things, the lipomas, the fatty tumors that are just under the skin. All of those.
Dan: Did you have a lot of gut issues as well?
Adrienne: Not a lot. I was pretty fortunate with that. I did have some for awhile. I went off of gluten because it was giving me some IBS symptoms. I need to watch how much gluten I take in. It’s not like celiac or a true gluten sensitivity where any amount is bad, but I can tell it’s doing some kind of damage because if I eat too much for a prolonged period of time, I start having symptoms and I can cut back for a few weeks and they kind of go away.
So there’s definitely some food sensitivity issues. I have to watch how much sugar I eat. If I eat a lot of sugar, I puff up like crazy and ache. Temperature sensitivity was one that just was a beast to try to manage because I had both hot and cold. And so, there were so many days that I was hot and I couldn’t cool down, so I would put ice packs on my feet and around my neck. But then if I got too cold, then I had to use a heating pad and a hot tea or soup or blankets to warm up because my body just will not regulate its temperature. It’s still not very good at that.
So that’s something that I kind of have to think about all the time. I’m very careful in the summer not to wear anything that’s going to make me overheat. In the winter, I have to layer because if I’m just wearing boots and a big sweater, I’m going to die. I need to be able to take the layers off one at a time.
So half the time in the winter, I’m running around the house in shorts and a tee shirt because I’m hot.
Dan: Yeah. Interesting. You take some of these supplements you mentioned and you managed to recover after four years. But it strikes me that wasn’t the end of the story.
Adrienne: Oh, no, no. In addition to just the lingering symptoms and taking longer than normal to recover, getting sick more often than a typical person, I did still have a lot of pain, but it wasn’t the fibromyalgia. It was a strange nervous system pain. It was structural stuff. It was my back.
Dan: Your back pain?
Adrienne: Yeah. Just getting worse.
Dan: It becomes complicated, doesn’t it? It’s not so obvious like, I have fibromyalgia. I don’t have fibromyalgia, because let’s face it; everyone’s got something, especially as you get old, right?
Dan: And so, you’ve got back pain, but when the fibromyalgia stuff kind of goes, the sensitivities, I imagined, would have gone? The light sensitivities and all those sort of things?
Adrienne: Most of them, yeah. I mean, those things still bug me, but they don’t send me into a full body pain and wipe me out for days. But yeah. So it was definitely considered in remission for several years. But then, I started having a lot of pain in, my hip pain got significantly worse. My knees started to get bad. I was having pain in my hands. And so, my rheumatologist eventually diagnosed me with basically the most vague arthritis diagnosis you can get, because again, tests showed nothing.
She just said it was autoimmune polyarthritis. Then eventually on my chart, it said, spondylitis. And then eventually, it said, rheumatoid arthritis that was aggressive and treatment-resistant. I was really in decline. I ended up on an immune modulator and then two immunosuppressants at low doses.
Dan: Was this after you first came down with fibro? So for four years, you went into remission and then how many did you get …
Adrienne: This was probably two to three years before it started being okay from the fibromyalgia, but this decline of the functional things.
Dan: So about seven or eight years afterwards? After you first …
Adrienne: Yeah. It wasn’t horrible at first. But it kept getting worse to the point that I was using speech-to-text software to write and I used a cane for a long time and then eventually, we had to get a wheelchair, because anytime I was going to be walking very far, it was just going to be too much.
My left hip would literally just freeze like I couldn’t move it. I would just drag my leg behind me and that got to be more and more the case. My hands just hurt all the time. I ended up having to be in a wheelchair anytime I was out of the house. We bought a hospital bed so that I could sit in a comfortable position to be at the computer.
So during those healthy years, not only did I have a job writing about fibromyalgia and a lot of associated conditions. I’d also started writing novels which had always been my dream. And when I had the cognitive dysfunction, I thought, “Well, there goes that.”
So once I was able to do it, it’s like, “Okay. Time to do that before something else comes along and takes the wind down in my sails,” because with the way my life has gone, I just expect that that’s out there somewhere. But I had a three-book deal with a publisher. I couldn’t not write and I didn’t want to not write. And my brain was functional at this point. It was just my body that wasn’t. So I had nothing but time to sit and write because I couldn’t do anything else.
But yeah, it really did get to the point where I was spending 90% of my time awake in the hospital bed or there were days that I just couldn’t get out of bed. I have seven stairs between my master bedroom and the kitchen and there were days that I just had to lay in bed until somebody got home so I could eat and take my medication because I couldn’t get down those seven stairs.
Dan: In your mind, was this like, “Oh no, not again,” or was it like, “I have my fibro back or I have something else.”? I mean, how did you look at this?
Adrienne: Mostly, I was just angry. I had worked so hard and I had come back from a disease that a lot of people don’t get to come back from and I had this second chance and then it got taken away from me.
Fortunately, because the cognitive impairment wasn’t there like it was with the fibro, I was able to keep doing a lot of the mental things, but I couldn’t go out on the sailboat with my family. I couldn’t go camping. I couldn’t go do things.
We eventually had electronic chair also, because with my hands, I couldn’t wheel myself anywhere. I was utterly dependent on someone else to push me around. And the fact that we just kept adding more and more medications and getting very little result from anything, it was really frustrating and I was angry about it because I wanted to be out doing things and I couldn’t.
What happened, I was absolutely devastated when I found out my rheumatologist was leaving town and I had to find someone new, but it ended up being the best thing ever because I went to a new rheumatologist and he did an examination and looked over my chart and he said, “I don’t think this is right. I don’t think this is accurate. Can we do some testing?”
And I was like, “Yes. My husband just pushed me in here in a wheelchair and I can’t sign the papers and fill out my medical history because my hands are so impaired. Yes, please. Let’s do every test in the world and figure out what’s going on.”
So he took like 12 vials of blood. And literally, I’m not exaggerating, 50 x-ray panels, because everything hurt. When I was first given the spondylitis diagnosis, everything hurt except for my knees and elbows. But in the meantime, my knees had gone also.
So I mean, every joint in my body was screaming with pain all the time. And so, what he figured out was I had nothing autoimmune at all. And so, all the medications I was on were doing nothing other than making me feel awful. And because my doctors had been saying, “Don’t do anything that stresses your joints because the disease activity is really aggressive and you’re just going to drive it more and more if you do any damage,” I had just stopped moving. And he diagnosed me with a half-dozen different things, eventually. Took some time and some nerve conduction studies and other things too.
The pain in my hands was carpal tunnel. So I had surgery on those and that’s immensely better. Obviously, it got me off all of the meds. We decided that the fibromyalgia was out of remission. It was just a little bit different than it used to be. It was heightening the pain. It was sapping my energy, but I did not have anywhere near the sensitivities or the cognitive dysfunction I had the first time around.
So I went on low-dose naltrexone for that. It’s the only pharmaceutical that has actually helped my fibro and it does keep it quite nicely managed. Yeah, they wanted to put me on Cymbalta and I said, “Oh, no way.” I know way too many people who’ve had just a nightmare with that and weaning off of it is torture. I know that from when I had to come off of Lyrica. It’s awful.
And in the meantime, I’d gone to sleep specialists and tried a million different things that alter neurotransmitter levels and all of them are just awful for me. So the low-dose naltrexone was the only one I would consider. And unfortunately, they were like, “Yeah, we can give that a try.”
But I have degenerative disc disease in my neck and then just a variety of different malformations of different joints. I have sclerosis in my SI joints at the base of my spine. That’s probably a consequence of pregnancy. It happens quite frequently, but it’s pretty bad.
So it was basically half a dozen different things going on that all combined just had everything out of alignment and pressure on places where there shouldn’t have been pressure. I had a patellofemoral syndrome, which is, it’s also called runner’s knee, which is kind of hilarious because I …
Dan: Hadn’t been doing a lot of running.
Adrienne: No, I had not been doing a heck of a lot of running. I couldn’t get out of my bed most days, but basically, it’s a tracking issue where the kneecap is not sitting in the right place and that causes a lot of pain in the knees. And that was a consequence of the hip pain which was the worst that was a combination of several different things, including the sclerosis just pulling on a certain point and it had all of the soft tissues just balled up and under this ridiculous pressure.
So I started some exercises, got in with brilliant chiropractor who does muscular rehabilitation. He doesn’t just work with the bones and joints. He actually rehabilitates the muscles and he basically taught my body how to move properly and gave me a bunch of exercises too to help with the muscles and strengthen everything and keep everything aligned as much as it ever can be aligned in my body that is not put together correctly.
One of my doctors said, my body is basically like if you tried to put together a car with parts from 15 different makes. Nothing’s going to fit together quite right, but you might be able to make it work. That’s me.
So that’s my job now is trying to keep my body functioning as well as it can. I’m always going to have some pain. The degenerative disc disease is not going anywhere. But if I keep it stretched and I keep the muscles strong, it’s not nearly as bad as it was. But I was able to go in three months from the point of my re-diagnosis.
I went from being in a wheelchair and yeah, talking into a headset to write to jumping out of the sailboat and swimming in the lake.
Dan: Wow. Wow.
Adrienne: And let me tell you, floating on my back in the lake, looking up at this clear blue sky with the sun shining down, it was pretty amazing. After all of that and thinking, “I’m never going to be able to set foot in the sailboat. I can’t even physically climb into it. I’ll never be comfortable. I’m not going to be able to get out. I wouldn’t enjoy it at all.” It just, everything changed.
Dan: It’s amazing, isn’t it? Once you get some focus on what’s going on and what you need to do, and you have the determination fueled by years of suffering, then you can create amazing turnarounds, you know?
Adrienne: Yeah. Yeah. So, yeah. So I realized very early on, on that process that I could look back at basically six years. It was what it took to get the correct diagnosis. I could look back at that and be really angry that I was misdiagnosed for so long and that my other doctor didn’t do a little more to figure out what was going on or I could just basically look at this as a gift and my third chance. How many people get that and just enjoy it?
And so, I kind of made a conscious decision to not allow myself to be angry.
Dan: And so, this was like 10 years after you first got diagnosed with fibromyalgia, is that right?
Adrienne: Yeah, that would be about right. Yeah, because it was two years ago in April, I was re-diagnosed. So yeah. The last two years have been pretty good.
Dan: Yeah. So basically, in terms of fibromyalgia, you don’t really have any fibromyalgia symptoms. You’ve got obviously still some pain.
Adrienne: Yeah. I’ve still got pain, but it’s structural. It’s not the Allodynia or the paresthesias or any other weird nerve stuff. And other than a little in my hands if they get puffy. But that’s just normal. That’s a structural thing, because there’s pressure on the nerve. It’s not a nervous system issue like fibro is.
So yeah, I’ve got to manage the pain. I got to keep up with my exercises or it starts creeping back and the dysfunction starts coming back. So that get better for a while. Do what I need to do.
Dan: You’ve got to look after your body. But I mean, let me ask you this. These dysfunctions that you have in your body and this pain that they produce is obviously significant, but how does all of that compare to when you had fibromyalgia?
Adrienne: It’s nothing. I mean …
Dan: It makes me laugh because we always say that.
Adrienne: Yeah. I mean, the fibro pain is so intense and because of the nature of it, the body has mechanisms for ignoring pain that is chronic. But those are disrupted in fibro. We can’t ever ignore it. It never becomes background noise. It’s always front and center in your brain, demanding attention as if you just burned your hand or you just cut open your leg and your body is sending those signals of, “Okay, emergency. Deal with this now. This is a trauma that has to be taken care of or we’re going to die.” That’s what the body is doing all the time with fibro, because those mechanisms to dampen it and kind of shunt it off to the side are just not functioning.
I’m forgetting the term for it, but typically, when you’re going for a shot or getting blood drawn and they say, “Okay, this is going to pinch a little.” For most people, preparing for that pain allows their brain a moment to kind of like, “Okay, I don’t have to worry about this pain,” and it suppresses it. It’s not as bad. We don’t do that.
You tell me you’re going to give me a shot. You’ve just made my pain worse than if I weren’t expecting it. That mechanism is just not there.
So other pain is not the same at all.
Dan: No, I would have to agree with that. Having had some back issues, even appendicitis, I’ve had a lot of things and I don’t know. The fibro stuff was in its own category.
Adrienne: Oh, yeah. I mean, yeah. With my first child, I had 31 hours of unmedicated labor and I would rather do that again than have a day of fibro pain, because it’s like you’re on fire and your nerves never stop screaming.
Dan: Adrienne, obviously, it was a bit of a dynamic story. And so, I wanted to sort of get my head around that first. But I want to explore a little bit about your recovery. So look, just to summarize it, I mean, you got sick, you were sick for four years, then you went, as you put it, into remission and then it was about three years later, you were well for three years and then you started getting these other structural issues. But then with that, there may have been an element of fibro that was worse. In hindsight, do you still think there was an element of fibro worsening it or you’re not sure?
Adrienne: I do think so, because I just think it was heightening the pain as it does so well. It causes its own pain, but then anything structural you have that’s going on. If you have a bad knee, if you have a bad back, whatever you have, it’s turning up the volume on that.
Dan: So that was another five years then?
Adrienne: I think it was about six years. And the times are a little fuzzy because the structural issues, they got better or they got worse gradually. And I wasn’t necessarily all that used to being well, so I think I ignored a lot of them early on.
Dan: So the fibromyalgia at this time was mild in the sense that it was mainly exacerbating the pain as opposed to all the other stuff that we get.
Dan: Okay. And obviously, you addressed the pain with your physical therapy and all the different things you were doing and the surgery and then you recovered from that, right? So now, my question is, I guess the majority of the recovery happened the first time around when you went into remission. The second time around, it was really removing those pain triggers that kind of got to you across the line. But the first time around, I mean, yeah, you mentioned some of these supplements and you did these things but in my experience, there’s usually a whole lot more. I mean, tell me, what did you do? I mean, what was your turning point to say, “Hey, this is going to change.”? Where did things definitely changed for you when you were sick that first time?
Adrienne: There were several big steps. The first one was acupuncture. The second one was the endometrial ablation. The third one was quitting the job. After that, it was just a slow, steady improvement. Unfortunately, I can’t offer that, “Oh, this was the magic bullet that turned everything around.” What I like to tell people is that, if you find a treatment that helps 5%, don’t give up on it because it didn’t help 100%. Unless there’s side effects, you know?
Of course, you always got to weigh the risk versus the benefit and the pros and the cons. But if there’s a treatment you can tolerate that makes you 5% better, great. Stick to that, find 10 more.
Adrienne: Because it’s little building blocks. Fibromyalgia, chronic fatigue, these are not one single dysfunction in our body. It’s not a cancer that is growing in one place. It’s multiple systems in our body. There are so many different substances in our body that our body is not making adequately, that is not using properly, that it has too much of, some things are in hyper-drive and some things are slowed to a stop and there are, again, with the car analogy, there are so many little things in a car that can be wrong. All those fluid levels and all those moving parts and all the electrical signals and everything. We’re like that. We’re this old car that has 75 different problems and you’ve got to address every single one of them separately to get it working.
So for me, the neurotransmitter dysregulation was very clearly the worst aspect. So that’s what I really hit hard and when I was able to get those functioning better, I got a lot healthier. And then, addressing the intestinal issues.
Dan: How are you feeling that time? As you’re making this progress, I mean, you’re stuck in your house, in your room, you kind of look after your kids, you’re in pain, you’re suffering, you’ll be emotional, right?
Adrienne: Oh, yeah.
Dan: And then you’re starting to get better. I mean, what’s your outlook like? How are you relating to your body as you started to make that recovery?
Adrienne: Oh, as I was getting better, I mean, it was just, of course, there were ups and downs, but there were a lot of little celebrations along the way. It’s like, “Oh, hey, I just did that and I’m okay,” or I said yes to a few things instead of having to say no and I was worried I’d get involved in something and be like, “Oh, I’m taking on too much. I’m going to pay for this.” And then after a few weeks, it’s like, “You know what, I can do this. This isn’t wiping me out.”
Dan: And so, did you find that you were changing how you were thinking about those potential things? The worrying about doing things and all of that, was that changing?
Adrienne: It took a long time to get over that feeling. And in fact, after my second recovery, I had so much energy. It was amazing. I hadn’t had that much energy in forever, which I think a lot is the low-dose naltrexone. I think that’s really, really been a good thing for me.
I decided, “Okay, I’m going to get back into acting. Something I hadn’t done in forever.”
And so, I auditioned for a play and I got a part. It was a small part. So I thought, “Okay, I can handle that. A couple of evenings a week, rehearsals, it’s not a big deal. I can do that.”
And then I found out that there was going to be some dancing, just like doing a tango and kind of a goofy kick line at some point. And it’s like, “Oh, that’s taking a lot of energy and it’s really physical. Am I going to be able to do that?”
And then there’s a scene where I’m doing a lot of running around and someone was like grabbing me and pulling me and it’s like, I kept thinking through this process like, “Oh, I’m going to reach my point where I’m not going to be able to do it.” And I was terrified because I have this whole cast and the director counting on me to portray this character and the physicality of it, it was terrifying, but I kept doing it and it kept being okay to the point that I was absolutely astounded that I could do all of that day after day and get through three performances a week for several weeks and it wasn’t wiping me out. I wasn’t in excruciating pain. I was able to memorize my lines and I got through it and had a great time and it was kind of like that jumping in the lake and floating there with the blue sky above me. It was just one of those moments of, “Wow! Oh, I can do this.”
Those things help you kind of get over that automatic, “Oh, where’s my tipping point? Where’s that one moment that, ‘Oh, I’ve walked too far and now, I have to go to bed for three days.’?”
I still do worry about that and I just got back from a 9-day vacation and I had those times of worrying.
It’s like, “Okay, we did a lot of walking today and it was really hot and I’m really tired. Am I going to be able to function tomorrow?”
And every time I can, it helps me get over that fear and that constant vigilance that you have to have.
Dan: People can’t really appreciate that unless you’ve experienced the years of chronic illness. Just how, I don’t want to say paranoid, because it’s not paranoid, right? But how vigilant and fearful we become and it takes time to build that confidence.
Adrienne: Yeah, it does.
Dan: It really does. And I would talk to people about that all the time that as they recover, that each time they have an experience, even if the experience triggers a little bit of symptoms, like you recovered but then suddenly, you’re like, “Oh, I’ve got some symptoms,” and then you go, “Am I still recovered?” But when they come back from that, it helps them build that confidence to get to a point where it just becomes not an issue.
Adrienne: Yeah. You have to have all these affirmative experiences that show you, “Yes, you can do this.” And I’ve got myself now to the point where I’m definitely overextended with managing everything. But I’m looking at my life going, “No. This stress is too much. I’m a little crazy. I got to come back a little bit.”
Dan: And we all have to do that whether we have a history of fibro or not and some people just … the body always tells you one way or another, you know?
Adrienne: Oh, it does. Yeah.
Dan: So it doesn’t matter who you are. We all have our limits. So now, I guess your life in terms of like ongoing looking after yourself, I mean, you have your exercises. Obviously, you have an active lifestyle again, you’re working, you were saying you still eat a reasonable diet, is there anything else you still do to keep you on track?
Adrienne: It’s funny because I stayed working in the hospital bed for a long time and just recently made the switch to a desk, because the position in the hospital bed, my neck was always craning too far forward and that was kind of the last of the really painful things that I needed to figure out. So yeah, I finally found a good chair and I’m back to a desk.
I really feel like I have an incredible amount of freedom from my health at this point. Yeah. As long as I do my exercises, don’t get carried away with the things I shouldn’t eat, I’m really doing pretty well. Because I set my own schedule with my work, I do still sleep ridiculous hours.
I very often will tell my husband goodbye when he leaves for work at 5:30 AM and then I’ll sleep all day. And sometimes, if I have to be up early, it’s a struggle and then I might crash for 14 hours later on. So my sleep is probably still the single biggest limiting factor because I mean, I have seven sleep disorders. Two of them are treated. The chronic familial insomnia, it’s a doozy. It usually takes two or three different sedatives in order to treat it. And I can’t tolerate any sedatives. So there just is no treatment option there. I just don’t sleep well.
Dan: It’s a tricky thing with the overlap, isn’t it? I mean, you can have like a pain condition or you can have like the sleep issue that you have and obviously, those are issues in fibromyalgia. So I don’t think that’s a little bit muddled, but I think when you have fibromyalgia, you can tell the difference or the other neurological disorders. Do you still take any supplements?
Adrienne: I still take all of the supplements, yeah. I think I take about 22 pills every morning and another half dozen or so at night.
Dan: Have you ever tried not taking them?
Adrienne: I have with … I’ve had several surgeries, the carpal tunnel surgeries plus appendicitis and I had my gallbladder removed a few years ago too. So it’s been interesting. So I’ve had to go off of the supplements at times and things don’t go very well. I definitely can tell. And there was one time with the low-dose naltrexone. It has to come from a compounding pharmacy because that’s the only way you can get it in 3 milligrams instead of 30, which is the standard dosage.
If I go a couple of days without that, there was one time they were closed for a holiday I didn’t compensate for and went two days without that, and I felt it. My energy dropped. My sleep was more disrupted. Pain level went up a little bit. I’ve been off of all my supplements for a few days for surgeries and my body does not like that.
I think if I went off of all of it, the fibro would be back pretty quickly. I think basically, I’m just keeping it pushed down to the point that it’s subclinical at the moment.
Dan: Okay. I mean, there are different types of recovery stories. I mean, most of the recovery stories I publish on CFS Unravelled are with people who are fully recovered, i.e. without any treatments. But having treatments and being subclinical and not having any symptoms, I mean, that’s fantastic, right?
I think it’s really important for people to recognize, like people can be very judgmental about anything that you say, anything that’s positive. But let’s not, you’ve got your life back. You’re doing everything you want. You don’t have the fibro symptoms. So you’re taking some supplements and you’re taking a little bit of medication. So what?
Adrienne: Right? Exactly.
Dan: And the thing about it is, it’s really about a lot more than that, right? Because you and I know and everyone else knows that if we took someone else on exactly the same supplements and exactly the same thing, they’re not going to be cured by that, right?
Dan: So the journey is about much more. Do you think there’s anything else from the way you approached your life or the way you mentally or anything else that you think was really important to help you make that recovery?
Adrienne: I think coming to a place of acceptance, not giving up, certainly, because I never did that. If I had done that, I’d still be in the hospital bed. But reaching a place where you are like, “Okay, I have this illness. It limits what I can do. I’m going to figure out how to live with it well.”
When you get to that point and it’s not easy. Getting to that point, I think is crucial. There are a lot of studies showing that people who don’t reach that place emotionally don’t recover physically, because if you haven’t gotten to the place of acceptance, you’re either in denial or you’re fighting it and neither one of those strategies works.
Denial, you just get worse and worse until you can’t deny it anymore. Like you were talking about with, am I going to have to quit my job or not?
There are people in my life who I’ve seen not reach that place of acceptance with the challenges that they’re facing and they don’t overcome them. They just keep battling against them. And if you want to beat fibro, if you want to beat CFS, you can’t battle it. It’s too strong for that. It’s too big a hill to climb. You’ve just got to understand that this is your reality and see what you can do to make it better.
Yeah. And that’s really all we can do, any of us. And then it’s just a matter of, can you find the things that help you? And add them all up.
Dan: This sort of psychological shift in how you approach the illness, I mean, did you use any other kind of mental strategies? Did you do any mind-body strategies? Yoga, meditation, anything like that?
Adrienne: I did a little bit of yoga. I had taken yoga and meditation classes in college and that definitely helped being able to draw on that. I did do some meditation and that combined with the acupuncture and the Chinese herbs, I think really kind of helped me get past the panic and the anger and just all of the negative emotions that come with it that are exacerbated by the actual physiological realities of fibro.
It makes the anxiety worse. It makes the depression worse. It makes all of it worse, physically. And that’s something people don’t understand is every thought we have and every feeling we have has a physiological component. There’s this imaginary line drawn between neurology and psychology. Even talking to experts, they can’t tell you exactly where that line is anymore because you feel happy, you just had a burst of serotonin in your brain. If you do feel that sense of reward for doing the dishes that you’ve been putting off for three days, you just had a little spike in norepinephrine.
And so, people think, you can’t just think positively and have it affect you physically. Well, you can, because our thoughts are physical and our emotions are physical. And if you understand that, suddenly, it makes sense that you can change. I mean, this is just kind of a silly little example, but I think it demonstrates the point pretty well.
I have a cat who is fairly standoffish. He’s gotten a little more affectionate in his old age. And when he started getting to a point where he would come lay on my lap for a while or snuggle with me in bed, and it was really nice. When he’d get up and leave, I’d be sad.
And I would say, “Oh no, come back. Come back.” And I realized that I wasn’t enjoying what was happening that I wanted him to do for years that he hadn’t. And so, instead of saying, “Oh, no, no. Don’t go. Come back,” I would say, “Thank you for the snuggles,” or “Thank you for laying on my lap.” And it completely changed my experience of him getting up and leaving.
I kept that happy feeling that I would get from him snuggled up, purring next to me. I would keep that when I was grateful for it.
Dan: Gratitude is powerful.
Adrienne: It is. And so, those little things, I mean, it sounds ridiculous when you’re dealing with something that has you incapacitated and clutching your abdomen in pain and curled up in a ball on your bed for hours. It seems ridiculous that that kind of thing could help, but it does.
Dan: Yeah. Absolutely. So I mean, you talked about meditation. Obviously, meditation, it helps you to regulate your thoughts. How much did you meditate?
Adrienne: Probably not as much as I should have. I would forget and I would get busy and that kind of thing. But when I did it, it definitely did have a pretty significant impact. Having a history of that in college helped. I had realized about halfway through college that if I took yoga and meditation classes, I had to go a few times a week and relax. And I think that’s probably what got me through college sane.
Before fibro, when I was going through childbirth, when I got to the transition point where it’s extremely painful right before you start pushing. Because I was trying to do unmedicated childbirth, they say that’s where most women give up because the pain is so intense that they’re just like, “No, no, no. I can’t,” and they give in and get medication, but it usually even takes effect too late to make a difference at that point.
When I got to that point and I basically just shut down my focus on my body. I made it through. And it was all those meditation and relaxation techniques I had learned that got me through that.
So I was able to draw on that a lot. I mean, there were times, yeah, I would either just kind of go away in my head or I would focus on something very close and small. I had a handheld electronic Sudoku game that I would do just obsessively when I was bad, because then I could put all my focus there and it wasn’t on my body.
Any of those little things that you can do can help. Yoga is definitely a great way to keep moving. People think, all the balance, because of course, we’re all completely clumsy and dizzy and we can’t do the balance stuff or we’re going to fall and hurt ourselves. But you do the poses that are laying down or that are sitting,
I did Sit and Be Fit for a while. That was on-demand on my television, which was developed by a woman with chronic fatigue syndrome, who lives in the same town as me, by the way. So that was kind of interesting.
So yeah, I actually know a lot of people who worked on those videos.
Dan: But doing what you can, isn’t it? You can’t do anything because you’re too sick. So then it’s like, okay, well, what can I do?
Adrienne: Right. It’s like, if you can’t get out of bed, you think, “Well, I can’t do anything.” But you know what; you can do a couple of simple little stretches. Stretch your hands, your fingers, your feet, your ankles, the small muscles. When I was having what was misdiagnosed as arthritis, all the structural issues, I did a lot of isometric exercises where I would be just laying in one place, not moving my joints at all, but just tensing a muscle. It does a lot with my calves and my thighs, trying to keep my legs functional because they were getting so weak. And that really helped my recovery when I was re-diagnosed because I still have some strength there and I still have some muscle tone and when I first went to the rehab specialist, he was like, “Wow, you have a lot of strength for somebody who hasn’t been able to walk for three years.”
So fortunately, I had done those things because, I mean, the worst thing you can do for your body is stop moving. And yet with fibro and CFS, the minute you move, you make yourself worse.
So yeah. You got to find, what are the little things you can do?
Dan: That’s fantastic advice. And certainly, I see that theme come through all the time in all of recovery stories. It’s fantastic how you articulated that and really pointed that out and I hope people are listening closely.
So is there any other final advice that you’d give to someone who is still ill with CFS and fibromyalgia?
Adrienne: It’s difficult because we know there are some people who don’t ever find that combination of treatments that really helps them recover. I would say, don’t give up. Don’t put a lot of false hope in the next great thing to come along. Just do anything you can to make that next little baby step forward. That 5% treatment, find another one. Then you’re 10% better. Find another one, you’re 15% better. Find 10 more and now, you’re 65% better and you have a life again. Just keep looking for those little things rather than that one big cure that is probably never going to come along.
When you talk to people in the medical community, I mean, they don’t really expect to cure disease. They expect to maybe prevent some, maybe manage some. They don’t really talk about cures, and that seems to be where the patient community always are saying, “Find a cure. Find a cure.”
Dan: I mean, I think you can get a cure for bacterial infection.
Adrienne: Yeah. There are certain things you can cure. I mean, people say, “Oh …”
Dan: Few illnesses at all. I mean, there are no cures. There are a couple of cures. Occasionally, surgery, you might say, “If I cut my finger off and you put it back on that it’s cured.” But the finger is never the same.
Adrienne: Exactly. And they say that they can cure many cases of cancer, but there’s still that risk of recurrence later on. So I mean, I think people need to understand that. There are so many people that are like, “When are they going to find a cure? When are they going to find a cure?”
Don’t look for a cure. Look for the next treatment that’s going to get you 5% better.
Dan: Fantastic advice. Thank you so much for highlighting the strategies that really helped and thank you so much for sharing your story, Adrienne.
Adrienne: No, thank you.
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