Pain All Over: My Healing Journey from Fibromyalgia
For someone who suffered from fibromyalgia for seven years, it’s odd that I’ve never really written about it.
It was such a defining moment in my life, yet thankfully I never let it define me.
So I’ve been hesitant to write about it. It happened, it changed the course of my life, and I moved on.
But if I never had fibromyalgia, I might not be writing this blog about holistic health and healing. I might not be part of an amazing community of energy healers from all over the world. And I might not have discovered the ancient “science of life” known as Ayurveda.
My art had become heavy from the pain of what was happening in my life, and although it was a good outlet for that pain, I became tired of looking at the darkness of it, the heaviness, the negativity.
So I set it aside and took a turn down another path. Inevitably, I discovered that the final destination was the same–whether it’s my art or my penchant for holistic health and healing–they’re all just ways of expressing myself, sharing my gifts, figuring out why I am here on this earth, and how I can help others.
And that was my impetus for writing this post. Maybe, just maybe, someone out there who’s hurting will be helped by my story.
So, here’s a little history of that seven year period in my life. Remember, this is my story, not a definitive article on fibromyalgia.
In the spring of 2002 at the age of 48, I came down with what seemed like some type of virus. I had a fever, aches, and chills. Just for one day. The next day when I woke up, my fever was gone and I felt fine except for extreme pain throughout my body, especially in my neck and upper back.
I remember thinking it was odd that the pain was bilateral and located in the oddest of places–the base of my neck, near my elbows, outer knees, hips, feet, etc.)
Over the course of the next several years my symptoms–in addition to the pain–were:
- Extreme sensitivity to wind (or any air movement–i.e. air conditioner, fans, drafts, even a strong summer breeze)
- Sensitivity to loud noises, lights, crowds
- Painful and interrupted sleep
- Difficulty swallowing to the point of being afraid of choking while eating
- Numbness and pain in hands and feet
- Walking was painful, but I could ride a bike so I did that, constantly. (I was very physically fit before but became unable to do many things, even yoga.)
- Digestive problems
I saw many Western medical doctors in the beginning, but with the exception of testing positive for Epstein Barr and parvovirus, I was told that they could find nothing wrong with me.
They prescribed drugs (for depression, insomnia, pain, etc.), but I quickly discovered that the drugs only created more symptoms, which was the last thing I needed.
The only drug I succumbed to for more than a few months was Ambien CR, out of sheer desperation for a full night’s sleep. That didn’t end well. Believe the stories you hear about late-night roaming around and daytime craziness because they’re true.
Diet was never discussed. I ate a pretty typical American diet, thinking I was fairly healthy in that regard.
I eventually began seeking alternative forms of treatment, and one day I sat down at a computer (back then I rarely used one) and typed in the words “pain all over”.
Up popped hundreds of articles about fibromyalgia. It was the first time I had heard that word because this was long before the days of Lyrica commercials on television.
This mysterious word fibromyalgia seemed to describe everything I was experiencing. I took the information to my doctor who, while compassionate and curious, had never heard the term and still could offer very little help. She wrote me a prescription for physical therapy.
Back then I had really good health insurance which covered a ridiculous amount of PT and so I started going frequently. Three times a week. They would give me wonderful massages, do chiropractic adjustments and inject myofascial trigger points to numb the pain. They were my new best friends.
I remember feeling really good while I was there, but the minute I walked out the door (especially if it was windy or cold), my pain would return.
One day I decided to make an appointment with an acupuncturist at the PT center. She was not an MD who had done a crash course in acupuncture (insurance, of course, would have covered that) but was the real deal.
Carrie Cegelis was the first angel in my recovery from fibromyalgia. In addition to being an acupuncturist, she was a gifted healer with many healing tools in her toolbox.
Carrie would do acupuncture and craniosacral therapy, along with giving me tips about healing foods and herbs. She suggested I try a tincture of St. John’s Wort to help me sleep.
I weaned myself off of Ambien and started taking the herbal tincture. It took a couple of weeks, but all of a sudden I miraculously started sleeping! I also noticed a significant decrease in my pain, especially at night. And I had a brighter outlook on life.
Unbeknownst to me at the time, St. John’s Wort also helps with nerve pain and depression. Of course, “the experts” will say that there is no scientific proof of this, but it helped me tremendously.
I started to have some pain-free weeks, but then the pain would flare up again for no obvious reason and I would seem to be back at square one.
I tried colonics, a raw food diet, vegetarianism, veganism. Each of these seemed to help at first, but in the end, my pain persisted.
One day an employee at a restaurant where I was working asked me if I knew about Ayurveda.
I can remember that moment as if it was yesterday. I replied “no” but in my bones, I felt as though I had known it all my life.
I was curious, but I tucked it away and it wasn’t until months later that I found myself in a consultation with an Ayurvedic practitioner. His words to me were “Your Vata is off the charts deranged.” I didn’t know at the time what that meant.
Basically, I was seriously out of balance. Vata – the air/space dosha was unhinged and my mind/body were reeling from it. When I mentioned to the practitioner my curious symptom of not being able to tolerate any strong air movement, he wasn’t surprised. It was directly related to my severe Vata imbalance. I remember thinking “Why don’t Western medicine doctors know about this?”
That day was a real turning point for me. I began devouring information about Ayurveda.
Still, my healing was slow and I was getting frustrated. I remember the Ayurvedic practitioner saying: “It takes the body a long time to get like this (out of balance) and it can take an equal amount of time to come back into balance.”
By this time, my problems were far from strictly physical. They never are. I had finally started taking a good look at my life and making the mind/body connection which is so necessary for healing.
It was about two years into my painful journey that my 30-year marriage ended. I never made any connections back then with my pain and what I was going through emotionally. Now I look at my paintings from that period and see the pain and sadness etched into the work.
It wasn’t until years later when I had healed from the physical pain that I truly dug deep into the serious emotional stuff.
Trauma and grief that went back decades, long before my marriage. The body stores what we can’t handle at the moment trauma occurs. But sooner or later, it rises to the surface, be it in your dreams or in the form of an illness. I believe that that spring day in 2002 was my tipping point.
I was really good at hiding my pain. I didn’t want to be a complainer. A hypochondriac. A pity party. I was really good at keeping it under wraps, even from my family. Until I just couldn’t anymore.
I remember sitting in a coffee shop in NYC with my daughter and bursting into tears because it hurt so much. She had no idea how bad it was. What mother wants to burden her children with her pain?
Years later I realized that I didn’t know how to receive from others or how to prioritize my own needs. That was a big red flag.
For several years, I volunteered for a group called Free Arts NYC. I would meet weekly with a group of under-served children and make art. Many evenings I would drag my sore body uptown, and for a couple of hours try to forget the pain. I was going in and out of it at this point, but it was still hanging around.
One of the volunteers who knew what was going on approached me one night and said that there was a Tibetan Buddhist doctor who came to NYC every year and that she could get me an appointment to see him. She kindly kept badgering me until I made the arrangements. I figured I would try anything at this point. The Ayurvedic practitioner I had seen had left town and I had kind of drifted away from his recommendations.
I made my way down the stairs of the West Village apartment where this doctor was seeing patients. I entered a room and saw an altar with many candles and photos of deities. Not your typical doctor’s office decor. It was peaceful, with the scent of incense wafting in the air.
An elderly man in a monk’s robe was seated next to a young woman, his interpreter. He motioned for me to come over, set a cushion on my lap, and reached for my wrists to check my pulse. I had filled out a form stating why I was there.
The translator began to speak, but the doctor raised his hand to silence her. Without being told the reason for my visit, this is what he said (via the translator). “She has pain all throughout her body. It is worse in the heat of the summer and the cold of winter. She has numbness in her limbs and cannot sleep.” And on and on he went, listing almost every one of my symptoms. I kid you not. I was in awe.
He told me to avoid coffee, soda, alcohol, smoking, pork, mustard (all kinds), bell peppers, sweet potatoes, yams, winter squash, fermented foods, syrups, large sweet fruits like watermelon, other melons, pineapple, mangos. This was my list, so don’t assume it would be yours. Our bodies are all different and have different needs when it comes to food.
He wrote me out a prescription for Tibetan herbs and instructed me to send a check to his clinic in India. For months, I would do this and I would get a notice from the post office to come and pick up a package.
The herbs would arrive in a brown envelope that was lined with a different beautiful silk fabric each month. I would carefully peel the fabric off and use it in my artwork.
If I had a question for the doctor, I had to wait until 11:00 p.m. to call the clinic because of the time difference. I only did that once and the woman answering the phone said, “Let me ask the doctor–he’s right here.” The call only took five minutes!
After I left the East Village apartment that day, I went home and looked up the doctor online. His name was Dr. Yeshi Dhonden. I discovered that he is a highly respected doctor in India and had been the Dalai Lama’s personal physician for twenty years.
Wow. This humble man without any fanfare was a healer in the truest sense of the word.
I later learned that Tibetan medicine originated from Ayurveda, and in retrospect recognize all of the similarities in treatment.
For several months I faithfully followed Dr. Dhonden’s recommendations and slowly but surely my symptoms disappeared, one by one, never to return. The end was not nearly as dramatic as the beginning.
This, of course, is just my story. If you are one of the millions of people with “pain all over”, your story might be totally different. But I want to offer a few suggestions that might help you.
F I B R O M Y A L G I A
- F is for FEAR. Louise Hay, one of the founders of the self-help movement, believes that “Fibromyalgia is fear showing up as extreme tension due to stress.” Fear can have a devastating effect on the body. Investigate any fear in your life (keeping in mind it might be buried so deeply you don’t even know it’s there) and how it might be contributing to your condition.
- I is for your IMMUNE SYSTEM. The immune system is most certainly compromised with anyone suffering from fibromyalgia. Louise Hay remarks about someone with Epstein Barr – “Pushing beyond one’s limits. Fear of not being good enough. Draining all inner support. Stress virus.” This was certainly the case with me. Proper diet, sleep and supplements/herbs are needed to help shore up the immune system.
- B is for BREATHE. There really is a right way and a wrong way to breathe. I held my breath or took shallow breaths in my upper chest most of my life. When I learned proper breathing in yoga class, everything changed. Going a step further and practicing pranayama will further enhance the healing potential of the breath.
- R is for RELEASE. Stress, anger, fear, grief, anxiety, shame, blame. Your body is crying for emotional release. Old stuck emotions are lodged in our tissues, sometimes for a lifetime, if we never get around to addressing them. This happens for a reason–it’s the psyche’s way of protecting us from something we can’t handle at the moment. But if you have chronic pain, it is probably time to go there. So dig deep. Journal, scream, laugh, cry, sing. Let it out. Explore the possible correlation between fibromyalgia and trauma. PTSD. Possible sexual abuse. And get help in the way of energy healing, therapy, massage, craniosacral, acupuncture. Anything that resonates with you and will help you release what needs releasing.
- O is for OWNING YOUR LIFE. Past, present, and future. This is your journey. If you believe in reincarnation and past lives, then you likely chose this path to help you grow on a spiritual level. So, explore your past and investigate your present life. Imagine your future free from pain. At all costs, avoid saying “MY fibromyalgia”. Do not let it define you. Don’t use it as a crutch. Use it as an opportunity to grow and evolve.
- M is for MEDITATION and MOVEMENT. Learning to meditate is one of the greatest gifts I ever gave to myself. I wasn’t meditating during my painful journey and I often wonder how differently things might have progressed if I had been. But all things happen when they’re to happen. It enriches my life and my health now in more ways than I can count. And moving your body, though painful it may be, is imperative. Avoid excessive exercise, however, and instead, opt for walking, gentle yoga, t’ai chi, qigong, or rebounding. Get that lymph flowing. Something that you enjoy doing is key.
- Y is for YES! Above all else, work hard at remaining positive. If you have to fake it at first, that’s okay. Look hard for the little silver linings.
- A is for AYURVEDA and ACUPUNCTURE. Investigate these ancient mind/body systems. They were both key to my healing. Ayurveda mentions in texts that are over 5,000 years old conditions that have the same symptoms as fibromyalgia. This syndrome is nothing new. If I could give only one piece of advice to someone suffering from it, it would be to seek out an Ayurvedic practitioner.
- L is for LOVING YOURSELF first, then others. Avoid becoming a martyr. Avoid feeling like focusing on yourself is selfish. Care for your body, your mind, and your spirit. With all of your heart.
- G is for GUIDANCE. Ask for help. From loved ones, professionals, your guides, and angels (yes, they’re really there for you!). Don’t try to do it alone.
- I is for INSPIRATION. There are two meanings of this word. 1. The process of being mentally stimulated to do or feel something, especially to do something creative. 2. The drawing in of breath; inhalation. Both meanings apply here and can help you on your healing journey. Be inspired. It feeds your soul and will help heal you on all levels. Do something that gives you JOY. Dance, sing, play with your inner child. Breathe in healing energy, breathe out old pain and grief. Dr. Vasant Lad once told me that old grief stays trapped in the lungs and that there is a pranayama breathing exercise to expel the old stale air/grief. I wrote about it here.
- A is for ACCEPTANCE. By this, I do not mean accepting that you have this condition but rather an acceptance of the path you are on and that you may have chosen it for yourself in this lifetime. If I hadn’t lived through my experience with fibromyalgia, I wouldn’t be the person I am today. And act on making the changes necessary to move forward. This may, of course, require looking backward for some answers.
This is just an abbreviated version of my story. But one thing’s for sure–fibromyalgia was my wake-up call.
It was my dark night of the soul (one of them, at least). It was my gift from the Universe. I went through the fire and came out a new person. Just like after any natural disaster – a fire, volcanic eruption, a hurricane – life begins anew, and so it did for me. And it can for you, too.
P.S. Abhyanga (Ayurvedic self-massage) was a huge part of my healing process. It’s even better if you can find someone to give you an Ayurvedic massage with the proper healing oils. Here’s a video to help get you started.