I was honored when Devin agreed to my interview. If you have not heard of Devin Starlanyl, then I am excited to introduce to you one of the leading experts in the fields of fibromyalgia and chronic myofascial pain. Devin has experience in emergency room medicine, hospice work, public health, pharmaceutical manufacturing and medical research. She has extensively studied fibromyalgia and chronic myofascial pain and related medical topics and is the author of numerous articles and books on the topic.
Through her writing, research, and educational interaction with patients, Devin has raised awareness of myofascial pain syndrome (which she terms chronic myofascial pain) and fibromyalgia. She stays current on all the research and knows how to interpret it. Devin is my role model. She taught me to move beyond the pain and illness, and that I could still achieve my life goals. I often tell people to find a hero, someone you look up to so when you are at a stuck point, you can ask yourself, “What would my hero do in this situation?” Devin Starlanyl is one of my heroes and I will always look up to her and appreciate her profound dedication to people and education. ~ Celeste Cooper
Melissa: What was your life like before fibromyalgia?
Devin: As far as I can tell, I was born with this and always had signs of hyperalgesia and allodynia. I never had anything to compare this with. I know that I had severely contractured muscles by age six and that is a sign of chronic myofascial pain due to trigger points. Myofascial trigger points maintain my fibromyalgia central sensitization, as they do for most fibromyalgia patients.
Melissa: When did your first signs show?
Devin: I had pain all the time and had no idea I had such handicaps. I never got restorative sleep as a child. I had failure of grip and other symptoms that indicated body-wide trigger points. Now, knowing trigger point referral patterns, I can see that trigger points in the piriformis muscle caused the sciatica I had as a child and that the jaw pain and headaches after dental work were due to masseter and other trigger points. The clumsiness was due to sternocleidomastoid trigger points and my brain’s inability to know how many motor neurons it would take that day to move my body a certain distance. This set me up for frustration in trying to learn piano or clarinet. Because of trigger points in my arms, hands and neck, there was no way I could have used the same number of motor neurons to stretch an octave, for example, from one day to the next, or even one hour to the next.
Melissa: Besides fibro what other comorbid diseases have you been diagnosed with?
- Chronic myofascial pain (which is responsible for the tarsal tunnel, carpal tunnel, thoracic outlet, piriformis, and all the other syndromes that are actually descriptions)
- Chemical brain injury from metabolic problems – my body produces quinolinic acid, a nerve toxin, from tryptophan, instead of serotonin. Quinolinic acid is what they inject into the brains of rats to make them forget their mazes. I have little working spatial brain.
- Traumatic brain injury
- One ruptured and several bulging discs
- Underlying mycobacterial infection
- Sleep apnea
- Small airway disease
- Allergies (food, inhalant, contact)
- Reactive hypoglycemia
- Barrett’s esophagus
- In addition, I have 15 major conditions, but a lot of them are just descriptions for trigger point-caused conditions.
Melissa: How did fibromyalgia initially change your life?
Devin: I was usually rejected and isolated. I was not a wanted child and was misunderstood.
Melissa: What changes have you had to make in your life?
Devin: I don’t do karate and play ice hockey anymore. I did. I do martial arts (Yang traditional) t’ai chi, including some weapons forms. It takes me a lot longer to learn sequencing and to get my body to do the 108 forms. Spatial things are tough. It is tough for me to get letters of a word in order and I have written five books and hundreds of articles. I do a lot of mind work as well as self-physical therapy. I am an Episcopal lay minister and have graduated the four-year program. I had to learn pacing.
Melissa: How is your relationship with your family and friends?
Devin: I am very close to my sister and have the best son in the world. He married the perfect women for him. I feel very fortunate. I am blessed with many friends all over the world.
Melissa: What are your biggest personal battles now and how do you confront them?
Devin: Lack of self-esteem was a big one. We are taught to love others as ourselves but we are not taught to love ourselves. For some, self-love comes too easy. For others, it can be close to impossible. I had to learn to love myself enough to give up a marriage of over 35 years because my husband basically emotionally left me over 30 years ago. He never even bothered to learn about fibromyalgia or myofascial pain. He would not even read my books. I believe that each of us is a child of God and deserves respect. For self-respect, I needed to be away from the negativity of that relationship.
Melissa: How did your journey begin as an advocate?
Devin: After an auto accident caused my symptoms to approach disability stage, I searched for why I hurt so much. I brought examples of pain patterns to many doctors and most said that they could not exist. Except for one chiropractor. He looked carefully, asked me some questions and said, “That sounds like Janet Travell’s stuff.” So I looked up JFK’s White House physician and got the medical texts she had written with David G. Simons M.D. There were many pain patterns! I contacted Dave Simons and he started teaching me immediately.
I wanted to do likewise. I went to a local fibromyalgia group in the next town as there was none in mine. They had been meeting for years at that hospital and the leader wasn’t there. They were turning people away. I saw a hospital official I knew, explained the problem and how difficult it was for us to come out to a group meeting at night. He gave us a meeting room—larger than the one they had because people kept coming. They knew nothing about myofascial trigger points. I gave a two hour talk that night and a woman followed me out to the parking lot. She talked me into starting a group in town and I started doing free consults as I thought there would be a limited number of people locally. They started driving down from Canada and flying in from other countries. One of them talked me into writing a book and she was my first co-author.
Melissa: Tell us about your work.
Devin: Every time I hoped the work was done something would appear. A website or a video, both the need and the means to fill the need appeared. It became very obvious what God wanted me to do and each time I might put up a little resistance. But God, can’t I have a break? Then a neighbor would come over and say, “I have a video studio free for a week. You can use it if you want.” This happened and I knew a videographer from another job, so it was obvious I needed to do that, although it lost money for all but the publisher. I’ve been the lead author on a case study and a clinical study. It just happened.
Until about five years ago when he died, I was blessed to have David Simons as a mentor. He had been a pre-astronaut and was the first person to see the curvature of the Earth while hanging from a balloon. His commanding officer didn’t know if he would survive Operation ManHigh. Talk about inspiration. Now I have the website, where I can provide free information to patients and care providers that is medical journal referenced, and a very large and growing Facebook group named Fibromyalgia, Myofascial Pain and Dysfunction. Why should I regret not being a trauma surgeon? I have lost fine motor control but I have been able to touch more people and help them than if I had been healthy. I feel very blessed.
Melissa: What do you feel is the most challenging when helping those with Chronic Pain?
Devin: Giving them hope. So many of us have been lied to. People try to sell us things. Promise cures. Fibromyalgia is a central nervous system dysfunction. It doesn’t cause local symptoms like backache, foot pain, menstrual cramps or hand pain. That is usually from myofascial trigger points. They also cause dysfunction from blurry vision to sexual impotence to buckling ankles. Myofascia is all over the body. So if I can get them to describe their referral patterns, I can often figure out their trigger points.
Many people with fibromyalgia don’t know that they have a co-existing condition causing the numbness, tingling and all the things that so many doctors say are fibromyalgia. Trigger points can cause nerve entrapment and blood vessels and lymph entrapment. They can contribute to conditions such as migraines and IBS. Dr. Travell and Dr. Simons have done the hard work. They have mapped out the referral patterns. But they are many and some of us have found more. So it is hard for people to accept the gift of hope. Recent research has shown that fibromyalgia is largely maintained by peripheral pain generators such as arthritis and myofascial trigger points but the research hasn’t filtered down to the clinicians and the public – probably because it doesn’t sell expensive pain meds.
Melissa: What treatments do you recommend?
Devin: It depends on what the cause of the symptom is. Fibromyalgia is a CNS dysfunction. It amplifies pain (and other symptoms) from other sources, so you need to identify those sources. It’s the combination of a pain generator such as a trigger point and a pain amplifier such as FM that creates so much out-of-proportion pain. So you figure out the cause and treat that. Don’t allow your care provider to get away with sticking you with a label and throwing pills at you. The trigger point component can be treated, and you may have other co-existing conditions as well. Each one is another avenue to get at your symptoms and improve your quality of life.
Melissa: You are an inspiration to so many. What advice do you give newbies?
Devin: Thank you. The best advice is to persevere and have hope. There is a lot you can do to improve your quality of life. There is no cure. Fibromyalgia is heterogeneous. It is a family of illnesses causing central sensitization. So you treat the components that are treatable. You identify the trigger points and their perpetuating factors – those things that perpetuate, initiate or aggravate the trigger points and bring them under control and learn how to treat and prevent the trigger points. You identify any co-existing conditions and treat them.
The last book I wrote with co-author John Sharkey is the first book that focuses on treating the combination of chronic myofascial pain and fibromyalgia. We require different approaches than athletes with individual trigger points. We teach patients how to self-treat, doctors how to take a history, examine and treat these patients such as the space we had would allow. We can’t empower but we can provide the tools for empowerment. All people have to do is to accept them. Generally, people see the trigger point referral patterns and recognize their own pain. Once they get relief from one trigger point, they get hope. That is where the healing starts. Have hope. There is so much you can do.
Melissa: What or who inspires you?
Devin: God. Miracles are everywhere, if one has the intention and will recognize them. I have had the blessing of two mentors in my life—Isaac Asimov and David G. Simons. They are still great inspirations to me. People with these conditions, fibromyalgia and chronic myofascial pain and dysfunction, can be some of the most inspirational people in the world. They have come through the fire and survived or are trying to make it through. They are constant teachers to me.
Melissa: How is your life now?
Devin: I think at age 69, I am much better off than I was 25 years ago. I would not trade my life for anyone’s life. I believe I was put in the perfect place to be able to help others with these conditions. My mission in life is clear. How much better can it get?
Melissa: What do you see in your future?
Devin: I hope things slow down a little. The pace has been a little overwhelming along with the church work and the Medical Reserve Corps and Community Emergency Response Team and all the other things I am involved with. Janet Travell always said that she wanted to wear out and not rust out. That sounds good to me. Why should I retire? I don’t make money, but I love what I do and I wouldn’t trade it for anything.
Devin Starlanyl's Books:
Join Devin's Facebook Group: Fibromyalgia, Myofascial Pain and Dysfunction
Melissa Swanson is a chronic pain patient, advocate, and author. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 14,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice." She's a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and a member of the Leaders Against Pain Action Network.