Living Beyond Pain After Being Diagnosed With Fibromyalgia With Carol Kugler Ellis

Welcome back to the Healing Pain Podcast with Carol Kugler Ellis

Nothing rounds up our understanding better about chronic pain than listening from a patient’s perspective. To have undergone through that pain with all the struggles and medications that come with it, a person could give the best account of dealing and overcoming all of it. Carol Kugler Ellis was diagnosed with fibromyalgia. As she shares her story, she imparts great wisdom and insight about chronic pain. Taking it head on, she clearly and honestly opened up about her pain, where she is currently now, and where she is headed in terms of her health. Her resilience has shown how we can be bigger than our pain, live beyond it, and reclaim our life back.

We have landed at episode number 100, a milestone episode in many ways. I decided to start this podcast as a way to raise awareness about natural ways to treat pain. When I look back after 100 episodes, I realized that what we’ve created is the world’s greatest public service announcement about how to live a life with the least amount of pain and suffering. My mission for this podcast was first to clarify the confusion about what chronic pain is so that people don’t believe they are damaged beyond repair. Next was to underline with a bright yellow highlighter how to treat pain naturally because currently, we rely on too many procedures and pills that simply don’t work and are at times harmful for people. Last was to reach as many people as possible with high-quality information which takes you from feeling hopeless and helpless to feeling educated and empowered and willing to take the action to live your best life beyond pain.

I strive for this with each and every episode and this podcast would not be possible without the subscribers and all the speakers who have generously donated their time and their heartfelt knowledge throughout the past two years. I want to take a moment to thank each and every one of you and to know that I love and cherish you for joining each and every week. I received no corporate sponsorship or any other type of money. This podcast is entirely produced and funded by me and me alone, so your participation is important to me and I consider you family.

When it came time to brainstorm about this celebratory 100th episode, I knew that it had to be something fresh. It had to be something new and it had to be something you’ve never heard before. This wasn’t easy because I’ve had some of the best and brightest physical therapists, psychologists, functional medicine physicians, pain scientists. When I looked through the 100 episodes, there was something very important that was missing. What was missing was the patient perspective as to what it’s like to have chronic pain, to live with chronic pain and to eventually overcome chronic pain.

It’s with great pleasure that I introduce you to Carol. Carol is someone who’s been given the diagnosis of fibromyalgia amongst other diagnoses. She’s someone that I’ve worked with both online and my Heal Your Pain, Heal Your Life Program as well as one-on-one offline with regards to overcoming pain and other healthcare challenges. I wanted to share Carol and her story with you because Carol is so clear about what she’s been through with regards to pain, where is she currently, and where she’s going with regards to her health and living beyond the pain. What I love is that Carol is articulate. She’s detail-oriented, she’s heartfelt, and she does a great job in describing her journey toward living a life beyond pain.

Carol will share with you what living with chronic pain is like through the lens of a patient, the challenges and struggles she has faced trying to find help and relief from pain, how she got rid of her walker and walk 30 minutes without the walker, and exercises on a weekly basis. Which test she had done and if they were helpful or not. The medication she was prescribed and which medication she is working to taper off of because she feels they no longer have any value or may even be causing harm. Her personal nutrition plan, her personal movement and exercise routine. What the brain and pain mean to her, which is an important topic. Her own advice for anyone living with chronic pain who wants to get their life back and return to an active and healthy life. Let’s meet Carol.

 

 

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Living Beyond Pain After Being Diagnosed With Fibromyalgia with Carol Kugler Ellis

Carol, I know that you’ve graciously followed along with the podcast over many episodes. I felt it was important to have a client or a patient on to talk about their experience and what they’ve been through throughout their journey with pain. As you know, I’ve had on a lot of practitioners, all different types of licensed healthcare practitioners, and I’m so happy to have you talk about the patient side of it. You have fibromyalgia or at least that’s the diagnosis you’ve been provided. Take me back to when this began, right when you started to develop some pain. What was that like and what happened?

It was in 1995. I was out taking my daily two-mile walk and all of a sudden, I started having some intense pain going down to my lower back hip and side of my leg. It reminded me of the sciatic nerve pain that my husband had described to me. I sat down for a little bit, trying to make it calm down and it was not calming down. Remember, this is 1995. I had a bag phone in my car plugged into the cigarette lighter. There’s no cell phone on me, so I hobbled home. It was strange because I was 48 years old. I hadn’t had any injury. I was in pretty good health. I had been through a very difficult emotional experience. I got home and I couldn’t climb the stairs to go into my split-level home and so my husband put me in the car and off to the ER we went and they had to roll me in on a gurney. They took some X-rays but they didn’t find anything wrong. They gave me some muscle relaxants and sent me home and told me to rest for two days.

You were out for a typical walk. You were at that point you were exercising, you were an avid exerciser, walking two miles a couple of times a week. This came and out of nowhere, you went to the emergency room and you got checked out. They didn’t find anything, meaning the X-ray didn’t show anything conclusive and they sent you home to rest. How long did you “rest” for and hope that the pain would go away before you started seeing other types of practitioners for a diagnosis?

I have been working with a special chiropractor who uses DNFT or direct non-force technique, which has nothing to do with bone-crunching for a few years. I went to see him after a couple of days. After that first paint experience though, I started having pain in other parts of my body, just unexplained. My sleep started to suffer badly. I went to my primary care physician. Back in 1995, a lot of physicians didn’t even believe that fibromyalgia was such a thing, much less know how to treat it. Fortunately, my practitioner did and she did a trigger point test on me. I test positive, which was the standard of the time out of eighteen points on all four quadrants of my body.

She suggested that I had fibromyalgia and she sent me to a rheumatologist because rheumatologists were the ones that treated fibromyalgia pain. He right away wanted to start beyond medications. I had heard about a diet that was high in fruits and vegetables and lower in meat and thought that might be helpful. I’d also heard about a warm water pool therapy groups for people with fibromyalgia. He wrote me a prescription to join that group and both the diet and the warm water therapy pool and my daily stretching that the doctor had suggested all help me get back to walking pretty soon but sleep remains a problem for many years.

HPP 100 | Fibromyalgia
It’s often finding for support around that people find the hardest time.

 

You have struggled with sleep problems for many years, probably decades, which is very common for people with chronic pain and especially those with fibromyalgia. It’s often one of the problems that people have the hardest time finding support around because people tend to reach for prescription medication for sleep problems or over-the-counter medications and oftentimes those don’t work. They don’t help support someone.

What has been offered to you as far as help for sleep? This entire pain journey is one journey. If we can break up all the different avenues and streets here, the sleep is very specific to your journey. Take me through the journey of how challenging has been to get sleep treated?

I did try a number of supplements and I got against some help with the pain but nothing with the sleep. I went back to my doctor and said, “Maybe I do need to have some medications.” She kept me on the Flexeril, which had been started at the hospital, which is a muscle relaxant. She put me on Klonopin, which is an anti-seizure medication for the restless leg syndrome that I had. She also put me on an antidepressant to help me with the sleep. Over the years, the dosages of these medications increased and Ambien was added but I didn’t like the effect of the Ambien. I was waking up in the middle of the night doing strange things and it didn’t sit well with me, so I stopped that after a while.

Finally in 2010, I had a sleep study done and it demonstrated that all of these medications were knocking me out but they were not providing restful, restorative sleep. It showed that my restless leg syndrome was not being controlled at all. I worked with that doctor to come down off of some of the medications that I was on. We tried a couple of other different alternative treatments, but nothing was helping my sleep problem and actually, my sleep doctor gave up on me. I went to see a neurologist/sleep specialist and he started trying a lot of other different medications and I soon discovered that I was allergic to every single medication that could treat restless leg syndrome or fibromyalgia. I can take a very small dose of Requip for the restless leg. If I take the full therapeutic dose, it causes pain when I sit down or when I’m walking down the back of my leg. It hasn’t been helpful because I can’t take a full dose.

You’re prescribed a number of medications. The Flexeril, which is a muscle relaxer, the Klonopin. It’s important that people see how you went for help and it’s quite normal that you seek help. The only thing you found was the number of medications, which haven’t worked for you. It sounds like the side effects have made some things worse.

I was taking the antidepressant for sleep, which is an off-label use of an antidepressant. I had no signs of depression, I never have, but that’s what they were using in those days. Later on, they came up with some of the Parkinson’s disease medications, Gabapentin, a lot of other things and all of them I broke out in a rash with. I forget what the one medication was for that specifically for fibromyalgia pain. I broke out in a rash or I got more depressed. I started crying and feeling hopeless. I was prescribed an opioid medication and as soon as I saw what it was, despite all of the publicity that has been around the opioid crisis, here I was having had fibromyalgia for 22 years and a doctor is prescribing an opioid for pain. I have never thought of it.

From everything that you’ve been prescribed, opioid was the one thing you were not prescribed but eventually, if you keep going back and keep asking a traditional physician for help, you’re going to probably come across that.

One of the other things that I did was, for many years, I took NSAIDs at night for pain and to help me to sleep. It was only about a year ago that I discovered the dangers of taking NSAIDs on a long-term, regular basis. I stopped taking them and no doctor had warned me about that.

What you said in your statement, you mentioned long-term. The point should be driven home that we’re not saying we’re anti-medication or anti-drug but many of these drug therapies serve their place. For a very short period of time as we help patients with the more lifestyle-related treatments, that can help them overcome pain. When we met, you were walking with a walker. Tell us a little bit about that part of your journey.

After all of these medications failed, I started to see a different sleep doctor who was at a sleep clinic. She wanted to know if there were any physical reasons that might be causing my sleep problems. That began around seeing a whole slew of doctors, including orthopedic surgeons, rheumatologists, a physiatrist. By that time, I had become unable to walk for more than about five or ten minutes. I had a walker. I had a flare of plantar fasciitis, which had been under control for about ten years. I finally got acupuncture help for the plantar fasciitis. I tried Wilmette pool therapy and this time, it didn’t help. I had all kinds of tests, MRIs, X-rays, bone density scans, an EMG, a full body CT scan with contrast and multiple blood tests for the autoimmune disease. At the end of all of that, they came to the conclusion that I had osteoarthritis and degenerative disk disease typical for a woman my age, nothing that would explain why I was unable to walk without a walker and had to use an electric cart at the grocery store.

That’s where I was when I retired at the end of 2015. When I retired, I was determined to get my health back. I had been living with fibromyalgia for all these years and held a responsible job despite the problems that I had had. I said, “I don’t want to live with the limitations that I’m living with.” Since I’d gotten a lot of poor information from all the doctors and all the tests that have been done, I started to search on the internet. I came across a diet that was similar to the one that you offer in your program. I started on that diet. I lost 45 pounds and I kept off and it’s an anti-inflammatory diet. I also tried warm water pool therapy again. This time it did help with the pain. The problem was that the work that I was doing in the pool and I could do a 45-minute workout in a warm water pool but it was not translating to might be able to walk on the ground.

That’s about the time that I came across your name on the web and decided I would try your program. My goal for the first six weeks of that program was to be able to walk moderately for fifteen minutes without a walker and not have to use the electric cart at the grocery store. I had already been on the diet for a year, so the anti-inflammatory was already gone. I was able to immediately put into practice the brain and pain aspects of your program. By the end of the program, six weeks, I was able to walk for 25 minutes without a walker and I was no longer using the electric cart at the grocery store.

Which is incredible and everyone in the group were so happy and proud of you. In six weeks, you made a tremendous recovery. You had a baseline of a healthy anti-inflammatory diet coming in. You had tried some exercise, you had the warm water pool therapy but you were cognizant enough to know that it wasn’t enough for you and it wasn’t having what we call it in therapy. It wasn’t having a functional carry over. Meaning you felt good when you were in the water. You moved around and you’ve probably strengthened some muscles but it didn’t help you on land, which is where most of us want to function. We’re not fish after all. People who don’t know my work yet, it’s in my books and my programs. I talk about the brain and pain. How has learning about the brain and pain helped you live beyond your pain and how did it help you start to move on land again and go from walking with a walker, only household distances to walking outside twenty minutes without anything to help you?

HPP 100 | Fibromyalgia
When we have pain, it’s an alarm signal to rest, sit down, and not hurt yourself.

 

The first thing was finding out that the chronic pain is a signal being transmitted from the brain to the body, not the other way around. This was a huge a-ha moment for me because I had always been afraid. Normally when we have pain, it’s an alarm signal to rest, sit down, don’t hurt yourself. By learning that this was a false signal coming from the brain, I was able to know that I could challenge my body little by little and not hurt myself. That was the first huge a-ha moment for me.

I found out that there’s a huge connection between our thoughts, our beliefs about pain, our emotions, and the pain itself. I know that if I’m in emotional distress, it’s going to show up in my body. I had done some work with mindfulness breathing with Jon Kabat-Zinn, but I hadn’t integrated it into my life. I learned that de-stressing our body daily is a huge part of the healthy. I started having a more dedicated practice of doing either mindfulness breathing or meditation every day, starting out my day with that and carrying it through the day so that I can calm things down.

Those three things you talked about there, one is fear, which is a big problem for people with pain. They’re scared that if they move, they’re going to hurt themselves. You had this journey into the brain and pain you realized that you could move. Even if you felt a little bit of pain, you know that doesn’t mean that you’re harming your body or injuring your body. That one thing was able to help you continue to exercise and to push yourself a little bit to go from the walker to not having anything.

With the program too, we have these three things, patience, patience and persistence. They’re all three important, but the patience part for me was important. I always was used to being able to do whatever I wanted, whenever I wanted. I did a lot. My former mother-in-law used to call me a bird in flight because I never was sitting down. I did learn that I didn’t have to pace myself. I’m not going to wash all the walls at the end of the day. I’m not going to clean the whole house in a day like I used to. I saw that I can do smaller chunks of work at a time and not have that flare that would keep me up that night.

I talk about it in the program but I also have a blog post if anyone’s interested, the three Ps of overcoming your pain. Thanks for reminding me of that because it is a good lesson for people to have and to apply to their recovery. What does life look like for you? Twenty years ago, you had this twinge which turned into widespread chronic pain, which no one can figure out a reason for. You’ve been through a gazillion tests, multiple medications. You’re tapering off a couple of those. What does life look like for you?

I am tapering off the medication. In the program, I reached a moment where I wanted to do that and I didn’t think I could and it was quite emotional for me. I decided that that was something that I wanted to do. It had been shown that these medications were not helping me. I’ve talked to my doctor and I’ve started to taper off of those medications. None of them are opioids, but one of them is very addictive. In the past, when doctors have tried to get me off of these medications, they try to go too fast. I’m very grateful for the podcast that you had with Dr. Beth Darnall, who is a psychiatrist who works with getting people off the opioids.

I learned from her that steady and slowly is the way to go. I’m starting with 10% goes down, each step down takes about three weeks. I’ve gotten off of the Flexeril, which is the first medication, the muscle relaxant. I’m a third of the way down off of the antidepressant. I’m starting on the next third and then the Klonopin and then possibly the Requip after that. Beyond getting off the medication, my diet has remained pretty much the same. I don’t have flour in the diet, I don’t have sugar in the diet, which a lot of people find very difficult. I don’t eat unhealthy oils. I have to find cold-pressed olive oil or the oils that I use.

For breakfast, I have a couple of berries and a protein drink for lunch. I have lots of vegetables, all different kinds of vegetables which I wasn’t used to eating before, and a four-ounce serving of lean meat and fish. I’m eating a lot more fish these days, especially wild caught salmon, sardines even, which I didn’t think I was going to like but I did, and wild-caught shrimp.

The daily treat that I have that is actually good for you is my ounce of 85% organic, dark chocolate. That gives me something to look forward to every day. One of the things that may be more difficult for most people is that it only takes one meal of eating all the wrong foods to put me back in pain for a day. I don’t eat out very often and I have a couple of restaurants and I’ll go there when I’m traveling. I have traveled before and you eat as clean as possible. That’s tough for a lot of people because our society, we eat out a lot but it’s not worth it.

HPP 100 | Fibromyalgia
You can’t be of service to the world if you’re in pain. Do everything that you can to be as healthy as possible.

 

What do movement and exercise look like for you on a weekly basis?

I do stretching every day. I work out with stretch bands or use light weights several times a week. I go out on a 30-minute brisk walk almost every day. I prefer to walk outdoors, especially when the sun is shining, which it’s not safe. Even if it’s a whole lot, I’d rather bundle up and go walking outside but I will do more indoor walking or walking out in the Walmart. The other thing is I’ve learned that I take care of myself physically, spiritually and emotionally. I continue to do those things in a holistic way. Put your own oxygen mask on first. You can’t be of service to the world if you’re in pain. I do everything I can to stay as healthy as possible.

You’re living beyond your pain and it sounds to me that you’re bigger than your pain is. What things have come back into your life that you thought were gone or that you had lost?

Believe it or not, I used to keep my house immaculately plain and I can’t do that anymore, but I can at least keep it clean. It might sound funny, but for years this was the big thing for me because it felt like I diminished capacity, something that I couldn’t do that I wanted to do. I’ve been able to get that back into my life. I’m going to rejoin the church choir, which I’ve always enjoyed, but taking all those pills at night. I have to pick him before I drive home from practice. I couldn’t do a practice and I couldn’t participate in the choir. Getting off those pills and the work that I did with you personally, one-on-one on the sleep issue was critical to me being able to do that, I’m looking forward to that. Another thing that I’ve discovered is after being widowed, I found a new sweetheart and he loves to travel. We’ve done a lot of traveling together, which I’ve always wanted to do and I love. He’s a paraplegic. I’m the one that winds up having to be a lot of sloughing of wheelchairs in and out of the car and when we travel.

You figured out that, “I have to clean my house, but it doesn’t have to be perfect.” You’ve learned to open up into ease into that idea of dropping perfection with so many of us have. Discovering habits that are coming back that you love, like choir practice and obviously love has come back into your life. You mentioned that your loved one is paraplegic and when you travel you take care of him. You help him move around and help with all his things. I’m wondering as you talk about this, I’m noticing and wondering how enriching is it for you, not only that you’ve gotten aspects of your life back, but that you’re able to help someone else with their life?

It’s been incredible. He lost his wife in the accident that put him in the wheelchair, so we’re both widowed. We met online. It seemed to be meant to be from the very start. I’ve made such a difference in his life. He had learned to be pretty independent himself even being a paraplegic. He could drive from Chicago to Tucson, which is 1,800 miles for four days and he could be there by himself, but it’s so much enjoyable for him to deal with somebody that he cares about. What’s great for me is that he’s traveled in 48 of the 50 states. He’s a great tour guide and so it’s great for him to share all of those things with me because I haven’t been able to travel that much because I was working all my life. It’s a tremendous joy to make him feel more whole again.

There are going to be practitioners reading this podcast, of course there will be people who have pain or looking for options and solutions. As you have lived beyond pain and grow bigger than the pain itself, what do you recommend? What words do you have for those who have pain who are starting to figure out what to do?

First, I would say that I didn’t think that there was very much that you could do. I thought it was something you downsized your life and you see a lot of doctors, taking medications and there wasn’t much else that you could do. I resigned myself to that. Now I know that there are many factors that lead to chronic pain. The good news about that is that means that there are many things that you can do to help decrease that pain and decrease its impact on your life. I’ve also learned, which is something that I have learned when I first was diagnosed with Fibromyalgia, is that I have to be in charge of my own health. I’ve gotten a lot of unhelpful information, unfortunately, doctors and tests over the years. Ancient wisdom tells us that the body knows how to heal itself. The doctors didn’t help. I said, “I’ve got to take charge and I’m going to go online. I’m going to see what’s there.” I looked for work that had a sound research basis to it because there’s this much fly by night alternative stuff out there as there are doctors who don’t know how to treat chronic pain.

I looked for connecting points. I would find one doctor who had good credentials and that leads me to another website and I listened to a lot of these seminars to listen to some of these factors and stuff. Do your research, listen to your gut. That’s a whole another podcast about listening to your gut and the microbiome. You can reclaim your life. You are not helpless. That’s the most important thing to say to anyone.

I love that you said that when you initially have pain and you don’t know what to do or where to go, it feels like your life is being downsized or as being shrunken. You’ve learned and you said this multiple or integrated approach, diet and exercise and figuring out what the brain and pain are, how to work on that, how to decrease fear. It feels like life can come back. Life can get bigger again, and in some ways, you choose to supersize your life instead of letting it shrink. For many people, they still have a little bit of pain and that’s actually okay because they have figured out that there’s a lot more life over there that I can pay attention to you instead of paying attention to my pain.

I still have pain from time to time. I’ll be out walking and my knee will start to hurt, the foot will start to hurt. I have to slow my pace a little bit and the pain will go away and I get back to walking. It’s a metaphor for all of your life, you don’t stop, you slow down your pace, then we get back to it.

Slow and steady wins the race and always keep your feet moving toward the things you love in life and everything will work itself out in the end. This is a great way to celebrate the podcast, to have someone like you on who can share the journey of what you’ve been through. Some of the struggles you’ve had, the successes that you have taken on and achieved within the last probably two years are incredible. I hope this podcast serves as a tremendous inspiration to anyone who has pain and is looking to live beyond it. Carol is the first patient or client who has stepped forward to talk about pain in this podcast. I can bring on thousands of practitioners who can talk about pain but there’s nothing like hearing about how to overcome pain from someone who has it and has been through the ups and downs. 


The Healing Pain Podcast features expert interviews and serves as:

A community for both practitioners and seekers of health.
A free resource describing the least invasive, non-pharmacologic methods to heal pain.
A resource for safe alternatives to long-term opioid use and addiction.
A catalyst to broaden the conversation around pain emphasizing biopsychosocial treatments.
A platform to discuss pain treatment, research and advocacy.

If you would like to appear in an episode of The Healing Pain Podcast or know someone with an incredible story of overcoming pain contact Dr. Joe Tatta at [email protected]. Experts from the fields of medicine, physical therapy, chiropractic, nutrition, psychology, spirituality, personal development and more are welcome.

 

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