Ankylosing Spondylitis (AS), an autoinflammatory condition of the spine that greatly restricts movement resulting in spinal fusion, crept up on me in high school. When I was 19, a rheumatologist confirmed the diagnosis. AS is a lifelong, incurable illness. My father had a bad case (his spine stopped moving completely by age 36) and he passed it down to me.
The progression of AS was fast and very scary. Pain radiated through my whole back, ribcage, collarbone, shoulders, and hips. My neck mobility rapidly decreased. I was often hit with a stabbing sensation in my rib cage that seemed to last ages. It was frequently so intense I couldn’t take a deep breath. I was never present in conversation, always half in the world and half in the pain. It consumed me. I became angry, depressed, anxious, and hopeless. This, however, is not an story about being sick. It’s about getting better. Much better.
Incurable = A Life Sentence
When I was first diagnosed with Ankylosing Spondylitis, I didn’t think much of it. I couldn’t touch my toes and my neck hurt frequently, but other than that, it didn’t affect the way I lived my life. As the years went by, however, each day became more of a battle. I steadily had less energy, could move less, and hurt more. I often couldn’t reach my feet to put shoes on or sleep for more than a half hour at a time. I learned to pick things up off the floor with my toes. The pain in my body increased at an exponential rate, and I got scared. So, I went to a doctor in search of help. An x-ray showed fusion in my sacro-illiac joints and narrowing vertebral spaces, confirming the disease process I suspected. It was in this moment, seeing an X-ray in the doctor’s office at age 23, that the doctor’s words hit me with reality — “there is no cure for AS.”
My rheumatologist offered the typical regime — painkillers and immunosuppressant drugs. I’d already been on Vioxx, the NSAID pulled from the market for causing heart attacks and strokes, and was too shaken by the controversy to try anything else. The doctor told me I would be very foolish not to follow his recommendations. AS complications include blindness, heart problems, and compression fractures. However, I was in such a weakened state that I knew I couldn’t sacrifice my immune system to Humira or Enbrel. I walked out the door overwhelmed, terrified, and angry.
Rejecting The “Incurable” Mindset
“No cure = no way out” is a common message to autoimmune and autoinflammatory patients. We’re told, “If you’re lucky, it goes into remission.” Even with the best of outcomes, you live with the daily fear of relapse. That fear puts stress on the system, which makes it harder to get better. So, I removed the word “incurable” from my vocabulary and began speaking in present tense about my illness, referring to temporary symptoms, not a lifelong disease. Instead of “I am sick,” I would say “I feel sick today.” The language change slowly became more and more true to me. It gave me back hope, and that gave me motivation. As someone who lives a comfortable life, no longer limited by Ankylosing Spondylitis, I wish to share that, this shift in consciousness was the most powerful choice I made in my recovery.
Ayurveda And Disease
In this new and not-yet-infallible frame of mind, I began to research different systems of medicine. In Ayurveda, the traditional medicine of India, the way each disease is defined tells you immediately what you need to do to calm it down. Not that it’s simple, or easy, but that it’s possible. There is no claim that you can change your genes and remove all chances of experiencing AS pain again (this is the conventional definition of “cure”). But, you can remove the cause, reducing symptoms little by little until you feel better. A lot better.
Ayurveda defines AS as tejas burning ojas at the cellular level of the bone tissue and nervous system. Calming tejas requires the reduction of inflammation at a cellular level, and nourishing ojas means restoring cellular intelligence and soothing the nervous system. This Ayurvedic understanding of pathogenesis (progression of disease) became a huge, bold signpost that beckoned to me, “This way out!”
This concept replaced my former definition of the word “cure.” I stopped searching for a miracle drug or treatment to change my genes and un-fuse my joints. Instead I did everything I could to calm inflammation and nourish my system. This process has involved many different methods over the years, and my progress has been slow but steady. When considering the previous lifetime sentence, the slow road didn’t seem so bad. I ruled out nothing and began to seek help from all different sources.
Pancha Karma: Rebooting Cellular Intelligence
Pancha karma is an Ayurvedic detoxification process that revives your cellular intelligence. Autoinflammatory disorders all have one thing in common: our immune system recognizes our own cells as pathogens and treats them as such. In other words, the immune system functions as though it has lost its intelligence. Pancha karma includes a combination of a controlled diet, massage, sweating, and purgation to remove toxicity that blocks cellular intelligence. It is an extremely different way of viewing treatment and disease than Western medicine. However esoteric, this ancient protocol is what changed the trajectory of my disease.
In 2007, I went to Albuquerque, New Mexico to stay at the Ayurvedic Institute’s clinic. Under the guidance of Dr. Lad, the staff at the Institute offers clients gentle, loving care. In stark to a cold doctor’s office, the Institute creates a quiet environment of comfort and compassion. Each day, I received an hour long four-hands Abyhanga massage, and then I was helped into the steam box. Sweating helps the body purge toxins that have begun to move from my joints into circulation. After sweating is shirodhara. For about 20 minutes, warm oil was poured over my forehead. I had heard rave reviews about the meditative state you can experience in Shirodhara. For me, it actually caused intense panic and agitation for the first three days of treatment. My nervous system was fried from living with such a high level of pain. Once I laid down for shirodhara on the fourth day, agitation gave way into that wonderful “bottom of the ocean” feeling of a deep, effortless meditation.
Gentle yoga classes were offered every day. I tried to go, but mostly just slept between treatments. Pancha karma clients are invited to attend Dr. Lad’s evening classes. It was there that I realized Ayurveda was not only a healing science, but a way of life. It inspired me not only to change my habits, but study. The entire week-long treatment changed the course of my life. One year later, I moved to Albuquerque to become a full time student at the Institute.
Nothing I tried had helped before I did pancha karma. The treatment jumpstarted my system, and many therapeutics I’d tried before with no luck began to help. Below is a detailed list of helpful holistic treatments.
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Supportive Therapeutics Against Ankylosing Spondylitis
Below is a compilation of therapeutics that began to help after practicing pancha karma, which continue to give me relief. What I have noticed is that all successful treatment options have followed the principle of calming the reactivity of tejas (inflammation) and nourishment. The time I spent in each modality varies. For some, like watsu, I only received one treatment. Watsu is expensive and hard to find, but it was extremely valuable. With others, like craniosacral therapy, I was very consistent.
- Pancha Karma. I have received this treatment twice in a clinic setting at the Ayurvedic Institute. I do an abbreviated version at home once a year.
- Food Guidelines
I follow an Ayurvedic diet that is nourishing, easy to digest, and soothing. I also incorporate many of the principles from the Autoimmune Protocol.
- Avoid nightshades (tomatoes, potatoes, eggplant, peppers).
- Avoid inflammatory sugar, gluten, and low quality dairy. Whole organic cow’s and goat’s milk products are fine for many.
- Favor easy to digest soups, broths, and simple rice and vegetable dishes.
- Favor cooked foods over raw.
- Eat at regular meal times.
- Soothing Oils and Balms: Ayurveda is a big proponent of topical healing oils.
- Maharanayan Oil (an analgesic Ayurvedic herbal oil) is a traditional Ayurvedic oil infused with over fifty herbs that soothes arthritic pain. Massage Maharanayan Oil into any painful area like your back, neck, or hips. It works best with consistent use. A word of caution: this oil is a deep red color that WILL stain your clothes and sheets. Make sure to wear pajamas you don’t mind sacrificing, and lay a towel over your pillow if neck pain is involved.
- Olive oil infused with St. John’s Wort, Lavender, and Chamomile. This blend of Western herbs is excellent to rub into your skin to improve mobility and reduce inflammation. St. John’s Wort’s effect on mood helps lift the morning gloom of waking up to pain.
- Abyhanga with plain sesame oil is also great for the skin. Abyhanga is the cornerstone of Ayurveda’s morning routine. It soothes pain, stiffness, and the emotional edge created by chronic pain. It’s also gently detoxifying. Incorporate Maharanayan oil for extra painful areas.
- Gentle Bodywork
- Craniosacral therapy
- Polarity therapy
- Japanese style Acupuncture
- Feldenkrais or Alexander Technique
- Watsu. Gentle, flowing bodywork style that takes place in a body temperature pool.
- Restorative yoga.
- Deep, slow breathing.
- Herbs & Supplements
- Ayurvedic Herbs: Turmeric, Ginger, Ashwagandha, Kamadudah, Gotu Kola, Tulsi, Dashamula
- B Stress Complex
- Devil’s Claw, White Willow Bark
- Omega 3 Fatty Acids
- Aloe Vera Juice
- Lemon Balm, St. John’s Wort
- Magnesium Glycinate
- Cannabinoid or Honey helps with sleep, pain, and anxiety. The honey is especially nice stirred into a cup of calming passionflower tea before bed. Healing happens during sleep. So, if you are constantly waking due to pain, health remains very far out of reach. A small amount in the daytime can also help with pain and anxiety.
The best assessment method for the effectiveness of a treatment is this: whatever helps you feel better is valid, important, and beneficial. Each and every move in the direction of healing is an important piece of your unique, fresh, evolving definition of “cure.”
Now, my toes are easily within reach, and I can sleep through the night. I work on my feet, four days a week, without struggle. There are few visible signs of AS left. For instance, when someone is sitting next to me at a restaurant, I can’t turn my head completely to see them. It’s an easy fix though — I just sit across from my companion. Occasional mild flare-ups still happen under times of intense stress, but I know how to handle them.
There are some things I’d come to think would never be possible in my life, such as rock climbing. I’ll never forget the first time I finished a 85-foot climb. Muscles shaking, I reached for the anchor at the top. The New Mexican desert expanded out to the horizon for what seemed like a million miles. Tears filled my eyes, realizing how very far I’d come. When there’s nothing to lose, so the slow road is worth a try. For me, it has been worth everything.
Heather Vaughan is an Ayurvedic practitioner and writer. She spent many years struggling with Ankylosing Spondylitis (an autoinflammatory disorder which attacks the spine). Her quest for health has become a deep, respectful study of traditional medicine which as taken her all over the world. A Northern California native, Heather now resides in Santa Fe, New Mexico, where she happily dances, climbs rocks and helps other transform illness into health.
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