On October 31, 2012 I was diagnosed with Diffuse Systemic Scleroderma. I had been very ill for a year prior; however, my doctors were unsure of what I had until my skin began to tighten. This is my story. It is intended to shine a light on the alternative therapies that have helped me.
As my husband and I sat listening to the rheumatologist’s explanation of the disease and the specific form I had, I remember thinking that this was impossible. I had been a healthy, strong person my whole life. I was devastated and hoped the diagnosis was inaccurate. As my mind began to spin with all of the negative possibilities outlined, I felt a distinct shift right there in the doctor’s office. It was a knowing…I was going to find a way to beat this disease and I was going to be fine.
The doctor continued explaining the immunosuppressant drugs used to slow down the progression of the symptoms, but he did specify that they were not a cure, because there was no cure. We listened attentively trusting the plan he outlined, after all, it didn’t really seem like I had a choice. My skin had only just begun to tighten in August 2012. In two months the skin on my hands, arms, face, neck and chest had become so tight to the touch that I was given a Modified Rodnan Skin Score of 15. I was told I had an aggressive form of scleroderma that was unfortunately advancing very quickly. The only chance I had to delay the progression and to protect my organs was to go on the drugs immediately.
As a nutritionist I would have preferred to find a more natural way to help my body heal, but the reality was that I had been seeing holistic practitioners for months without any real relief. There was no denying that despite my best efforts, it was advancing.
I began the recommended treatment of a high dose oral methotrexate capsule; however, I had a severe gastrointestinal reaction. I was switched to methotrexate injections. I remained on the drug for four months, which had been explained as the minimum amount of time required to gauge the effectiveness. During that time my symptoms became even more severe. My MRS score went from a 15 to a 21. Every part of me was taught and tender. My limbs were heavy and I felt completely devoid of energy. Raynaud’s was happening several times a day in both my hands and feet. My joints ached. They were so sore and tender that I couldn’t preform regular daily tasks on my own. I noticed that I was no longer able to extend my fingers or make a fist. I also could not fully straighten my arms. My joints were bending and locking in unnatural positions. My hips and knees were so tight that walking was becoming increasingly difficult. I could barely open my mouth because of how stiff my jaw had become. I struggled to eat and whatever I did manage to get in upset my stomach. I had severe acid reflux and difficulty digesting my food. I began getting phantom pains on the front of my legs from my knees to my ankles that were so excruciating that I would be bedridden in agony for 48 hours each time they occurred. I felt completely trapped inside of my increasingly ailing body.
I was obviously not responding well to the methotrexate. My doctor agreed and suggested I switch to Cellcept. I felt very uneasy at the thought of beginning another immunosuppressant. My gut told me to stop the drugs for a while and revisit some of the natural remedies I had been trying. Fear had caused me to ignore my intuition once, but I felt as though it was now time to stand in my own power and take responsibility for what life had given me. Most of us have used phrases such as: “God doesn’t give you anything you can’t handle” or “Everything happens for a reason”. They sound like good advice when given to others, but we certainly would prefer not to have these types of challenging life experiences ourselves.
In my nutritional counselling practice I had been guiding several clients with chronic diseases. Dis-ease, I believe, is simply the body’s inability to achieve ease and comfort. Symptoms are the body’s attempt to communicate these imbalances. By providing good quality whole foods, enough clean water, physical movement, enough rest and time for reflection (meditation and/or prayer), we give our bodies the basic needs required for self-healing.
In February 2013 I began to re-apply the principles I had previously taught others to my own healing journey. I went through a thorough check list of what I had already tried, reviewed the various modalities available and came up with a plan. My first step was to remove all inflammatory foods from my diet. Inflammation in the body causes pain, heat and swelling. Highly inflammatory foods include: meat (especially red meat), dairy, grains (especially grains with gluten – wheat, rye, spelt and kamut), sugar, processed foods and vegetable oils. Some people find the family of nightshade vegetables (peppers, tomatoes, potatoes, zucchini and eggplants) to cause inflammation, but since these are otherwise healthy options, I simply limited my consumption.
It is important to mention that when you remove so many foods from your diet you should work with a professional to ensure you are properly replacing the nutrients with other foods. I was getting the essential vitamins by increasing the amount of fresh vegetables and fruits; nuts and seeds; as well as legumes. I also increased the amount of anti-inflammatory foods I was eating. Foods such as: dark leafy greens (spinach, kale, swiss chard), bitter foods (rapini, dandelion greens, aloe vera juice), good fats (extra virgin olive oil, coconut oil), antioxidant rich berries (blueberries, blackberries) and spices (turmeric). I did not remove all meat from my diet. I eliminated red meat, but did consume 4 oz. of fish or chicken several times per week. Increasing your intake of pure clean water to a minimum of 2 litres per day also helps to decrease the inflammatory response by flushing toxins from the body.
Since scleroderma is an auto-immune disease, I felt it was important to do anything I could to support my immune system. Since 70% of our body’s immune system is located in our small intestine, it is important to ensure the gut is healthy. I switched to a more potent daily probiotic formula and added digestive enzymes to every meal. My body had been struggling to digest and absorb my food, so these steps were necessary to ensure the proper good bacteria ratio in my intestine and to help heal the environment. To further repair the intestinal lining, I took the amino acid L-Glutamine and drank Aloe Vera Juice daily. These changes increased my ability to absorb nutrients and minimized the inflammatory response.
From a nutritional standpoint, I believe these to be the most powerful changes I made to alter the direction the disease had taken in my body. However, there are so many alternative modalities available for different types of healing. My recommendation is to seek out a Naturopathic doctor that you feel comfortable with. This person should be able to help you navigate the world of alternative medicine and come up with some suggestions that suit your specific needs.
From a pain management perspective, the following are some of the alternative practices I tried. I began with acupuncture and found some relief. I also found it helped me sleep. I learned about Emotional Freedom Technique (EFT) or Tapping. This is an excellent method of talking through the pain to help uncover the source, or emotional triggers associated with the pain. Combined with deep breathing exercises and meditation, I have found this to be a powerful therapy. Even though I was still too weak for traditional exercises, I incorporated gentle movements and stretches into my daily routine. In particular I focused on straightening and strengthening my joints.
One of the treatments that offered me the most significant improvement was with a Naturopathic, Homeopathic doctor in Germany. The clinic provides thorough testing and advanced intravenous therapies such as: blood ozone, amino acid and colloidal silver infusions, homeopathic injections and biophoton lasers. These treatments are uniquely combined specific to each patient’s needs.
Most recently, I added weekly Osteopathy to my wellness routine. The principal philosophy behind this modality is that by strengthening the musculoskeletal framework, including the joints and muscles, this non-invasive technique is able to restore alignment to the whole body. I have found this particularly helpful in restoring my posture and my ability to hold my body upright for longer periods of time.
It might seem like a series of strange, unrelated therapies, but from my perspective, I was following my intuition. I believe every step was necessary for my healing. Since I accepted personal responsibility for my own healing, my skin has relaxed to an MRS score of 8; the joint pain has significantly improved; I have had no further damage to my joints; my heart and lung tests have come back as normal; and I have improved my energy levels. I have not had to take any further pharmaceutical medications. My quality of life has improved and I am now more motivated than ever to heal completely.
Scleroderma has been the catalyst that nudged me towards finding myself. I learned to listen to the guidance of my internal voice as it whispers my truth to me. I no longer fear this dis-ease, I embrace it as my teacher as it shows me how to become a better version of me.
“God never gives us more than we can handle. Everything that comes our way is coming our way so that we can grow and evolve. If we look at it like that and we’re willing to open our hearts and see where we’re shut down, where we’re trying to resist life, then we have a great opportunity to step into who we always wanted to be.” (Debbie Ford)