Interview by Melissa Swanson
“Many things in your life will catch your eye but few will capture your heart” is Karen Lee Richards life motto. Through her writing, editing and own personal experiences living with fibromyalgia and ME/CFS, Karen Richards fulfills her goal to educate, encourage and empower patients.
I have been very fortunate to meet so many women who dedicate their lives to helping others in chronic pain. I am also very happy that I have the opportunity to work with this very Inspirational Patient who was promoted to Executive Editor at ProHealth, an online wellness and health benefits store for FM, CFS/ME and Lyme Disease - Karen Lee Richards.
Melissa: What was your life like before Fibro?
Karen: Like so many people with fibro, I was something of a Type-A personality. There was so much I wanted to do in life, and I think I was trying to do it all at once. In addition to raising three teenagers by myself, I worked between 50 and 60 hours a week for a nonprofit serving the developmentally disabled, went to school part-time, did choreography and costumes for a local community theater and taught low-impact aerobics. I generally only slept about 4-6 hours a night. I never felt like I required more, but in retrospect, that was a mistake.
Melissa: When did you first show signs?
Karen: Shortly after I turned 40, I began feeling extremely tired. It was becoming more and more difficult to keep up with my busy schedule. Eventually I was diagnosed with mononucleosis and sent to bed for 6 weeks. Unfortunately, when the six weeks were up, I didn’t feel a lot better. I had to give up aerobics and my theater work, drop out of school and cut back on my work hours. Despite all of those changes, I continued to feel like I still had mono even several months later. At that point, my doctor told me I now had chronic fatigue syndrome.
It was a couple of years later, following a serious car accident that the fibromyalgia symptoms began. Even after I had recovered from my injuries, I was still experiencing quite a bit of pain. And the fatigue was getting worse again. Unfortunately, it took five more years before I was finally able to get a diagnosis.
Melissa: Besides fibro what other co-morbid conditions have been diagnosed?
Karen: ME/CFS (chronic fatigue syndrome), allergies and hypothyroidism. I used to have IBS as well, but since I began eating gluten free about two years ago, that’s no longer a problem. Although it’s not usually considered an FM comorbidity, I also have type 2 diabetes.
Melissa: How did it initially change your life?
Karen: The first thing to go was my social life. Because I had to support myself, all of my limited energy had to go toward making a living. I can still vividly remember waking up every day in so much pain that I didn’t know how I was going to get out of bed, then somehow dragging myself through the work day, driving home (often in tears) and crashing on the couch for the evening. My weekends were spent trying to recover enough to repeat the process for another week.
Melissa: What changes have you had to make in your life?
Karen: Pretty much everything in my life has changed. But it hasn’t been all bad - in fact, much of it has turned out to be very good. Fibromyalgia forced me to reevaluate every aspect of my life and focus my time and limited energy on the people and activities that are most important to me.
One of the first significant changes I made was to move closer to my children and grandchildren. They are the joys of my life, and being able to spend more time with them is a huge blessing. Another important change I made was in relation to my work. When I was no longer able to handle working a regular eight-hour day in an office, it became clear that I would have to find some kind of work I could do from home at my own pace. I also wanted to do something that would help others suffering with fibromyalgia. Those two criteria eventually led to me fulfilling a lifelong dream of being a professional writer.
There have been numerous other changes, too - the way I move my body, what I eat, how much I sleep, etc. None of it has been easy, but it’s all been worth it. After an initial period of grieving what I had lost, I chose to focus my attention on what I have now. There are still plenty of good things in my life that I’m thankful for.
Melissa: How is your relationship with your family and friends?
Karen: I’m extremely fortunate to have family and friends who are understanding and supportive. A few casual/social acquaintances fell by the wayside, but all of my really close friends have stood by me. As for my family, it probably helped that for many years after I got sick I lived by myself, so many limitations didn’t directly affect them on a daily basis. I’m sure it would have been much more difficult for all of us if I had a husband and young children depending on me very day.
A few years ago when it became apparent that I could no longer do all the things necessary to keep my house up, my youngest daughter and her family moved in with me. They take care of the house and yard work, and she does most of the cooking, which has allowed me to stay in the home I love and focus my attention on my work. And I’m here to look after the kids when they need to go out, so it’s been a mutually beneficial arrangement.
In addition to family and long-time close friends, I’ve also made many wonderful new friends in the FM community. As loving and supportive as family and old friends may be, we also need to have friends who truly understand what we’re going through - what it’s like to live with the constant pain and fatigue of fibromyalgia.
Melissa: What are your biggest personal battles now and how do you confront them?
Karen: I’m on a personal journey to improve my nutrition and fitness habits, which will hopefully lead to improvements in my fibromyalgia and overall health. It’s not easy to change life-long poor eating habits, and I fought it for a long time. But I’ve gradually been making changes, one thing at a time, for just under two years now. I’m definitely experiencing significant improvements. I’ve been working with Sue Ingebretson, a wonderful holistic health coach who also has fibromyalgia. She’s taught me so much about how different foods affect our bodies, and her support and encouragement has really helped me stick with my commitment.
Melissa: What inspires you?
Karen: Being a very spiritual person, I’d have to say the Bible is my greatest source of inspiration. My faith keeps me going even through the most difficult and stressful times. I’m also inspired by other patients who face their health challenges with courage, grace and a positive, hopeful attitude. I have two Pinterest boards that I return to frequently. One is called “Inspiration: and the other is “Giggles.” Both can help lift my spirits if I’m having a bad day.
Melissa: How is your life now?
Karen: My life is good. I have a wonderful family - three children, their spouses and eight grandchildren - all of whom fill my heart with joy every day. As far as the fibro goes, I’m the best I’ve been in 26 years. I still have some rough days, but right now the good days far outnumber the bad days, so I’m grateful. Even though I’ve technically reached retirement age, I plan to continue working to try to improve the lives of people with fibromyalgia for as long as I’m able. Doing this work helps me get up and face each day with a sense of purpose.
Melissa: How did your journey begin as an advocate?
Karen: Back when I was first diagnosed with fibromyalgia, very few people had ever heard of it. At that time the Internet was a fairly new phenomenon, but I managed to find an online FM support group. It was there that I met Lynne Matallana, and we began corresponding. We discovered that we both had a passion for raising awareness about fibromyalgia, so we worked together to form the National Fibromyalgia Awareness Campaign, which was later renamed the National Fibromyalgia Association. Our reasoning was that the first step toward helping people with fibromyalgia was to raise awareness, which would in turn generate more research, more treatment options and better overall care for patients.
Melissa: Tell us about your work.
Karen: Since I first began working with the FM community in 1997, my goal has been to educate, encourage and empower patients. I’ve tried to do that mainly through my writing and editing. For four years, in addition to writing articles, I was the executive editor of Fibromyalgia Aware magazine. Then following a year as the Fibromyalgia and Chronic Fatigue Syndrome Guide for About.com, I served as the Chronic Pain Health Guide for HealthCentral.com for eight years.
Although I’ve been writing freelance articles for ProHealth.com for several years, two years ago I became their Fibromyalgia Editor. Last year we launched the Fibromyalgia Online Health Center, which is a hub for news and information about FM. At the same time, we also launched the ME/CFS Online Health Center, with Erica Verillo as the ME/CFS Editor. We update the respective centers daily with the latest news and research, and we send out monthly online newsletters.
This job has been a dream come true for me. ProHealth’s founder, Rich Carson, is an ME/CFS patient himself and has dedicated his life and his business to helping people with FM and ME/CFS - including donating 10% of the company’s profits to research and advocacy efforts. It’s an honor to work for a man and a company that cares so much about patients and does so much to help them.
Melissa: What do you feel is the most challenging when helping those with chronic pain?
Karen: I think trying to help people keep their spirits up and stay hopeful is one of the most challenging things. When you’re in constant pain, it’s so easy to focus on the misery and get caught in a downward spiral of negativity, which only makes you feel worse. It’s so important to learn to focus outside yourself to helping others, it will ultimately help you the most.
Melissa: What treatments do you recommend?
Karen: Since I’m not a doctor, I’m not comfortable recommending treatments, but I’m happy to share what has helped me. I just want to stress that every individual is unique and, therefore, they should discuss specific treatment options with their own doctor.
Medications - Tramadol and ibuprofen for the pain.
Complementary Therapies - Myofascial release therapy and acupuncture.
Supplements - Ubiquinol CoQ10, PQQ, NADH, vitamin B12, vitamin D3 and high-dose thiamine. (I take several other supplements, too, but these are the ones that have made the most noticeable difference in my FM symptoms.)
Nutrition - Eating gluten-free has eliminated all of my digestive issues, including IBS.
Sleepwear - Wearing Goodnighties Recovery Sleepwear, which is infused with negative ions, has enabled me to sleep through the night and finally get deep, restorative sleep.
The main thing I like to stress about treatments is that no single medication or therapy is going to help all FM symptoms. It usually takes a combination of several different treatment modalities that build upon one another. So if something seems to help, even a little bit, continue with that treatment and gradually try adding other treatment options one at a time.
Melissa: You are an inspiration to so many. What advice do you give Newbies?
Karen: That’s so kind of you to say. One of the first things I tell people who are newly diagnosed is to learn everything they can about fibromyalgia and then take charge of their own healthcare. Today’s doctors don’t have the kind of time we as FM patients need to address all of our symptoms, and many doctors still know relatively little about fibromyalgia. So it’s up to us to learn all we can so we’re able to work with our doctors to find the combination of treatments that works best for us.
Melissa: What do you see in your future?
Karen: As I mentioned earlier, I love what I’m doing and plan to continue for as long as I’m able. The fact that I continue to feel better and better gives me the hope that I still have several more years of work ahead. My fondest hope is that one day I can write that a cure for fibromyalgia has been found. Maybe then I’ll think about retiring.
ProHealth’s Fibromyalgia Online Health Center
Articles about treatments that Karen uses:
How to Manage My Chronic Pain
Energy Breakthrough: One Fibromyalgia Patient’s Fortuitous Discovery
When a Negative is Positive - Goodnighties Recovery Sleepwear