Please, I'm Not Faking my Pain

According to The Mayo Clinic, “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.”

I can recall with painful clarity the first time I experienced a sharp stabbing sensation in my left shoulder area. Up to that point, I had enjoyed an active lifestyle with regular Zumba classes and brisk daily walks, but this onset of unprecedented pain effectively put a stop to the life I had known thus far. Gradually, the pain would set up house in a susceptible spot at the back of my head from whence barbed tendrils sprouted, radiating all the way down to my lower back. It got to a point where the mere act of running a comb through my hair became a nightmare. The agony I suffered each time the comb caught on a snag was so intense; it literally tore my breath away.

The first time I took myself to the Urgent Care with these symptoms, the doctor (doctor # 1)’s solution was to dope me up with codeine, an opioid I had a previously unknown allergy to, which I discovered the hard way when I started throwing up. Even though most of those days remain a blur, lost in a haze of misery, I cannot forget the copious tears that silently poured down my face as I struggled to find a moderately bearable position to sleep at night. It took several excruciating attempts to figure out that lying flat on my back, pillow less and motionless, helped buy me a few hours of uneasy sleep.

If asked to describe how the pain felt like, the closest I can come to explaining it is in terms of going to the dentist for a root canal. Let me explain: the dentist first gives an injection to numb pain over a broad area, followed by a second one that is area specific to the work that is going to be done in the mouth. If I were to describe what my pain felt like, I would say it is akin to receiving the second injection, where the pain is not exactly piercing but instead is perceived as a deep dull ache.

Who would have thought there would be such a long wait to get an appointment with a neurologist? Most of them appeared booked for months in advance, as their receptionists politely informed me. It was, therefore, a big relief when I landed one because it felt like finally, I would be able to get some answers about what ailed me.

Upon examination, doctor #2 ruled it a muscle spasm and promptly put me on a muscle relaxant regimen and anti-inflammatory medication. His approval of me being a coffee drinker on account of caffeine having pain-reducing properties had me rolling my eyes and thinking, “Are you kidding me?! I’m literally out of my mind with pain here, and your recommendation is to drink lots of coffee? Really?” Did the meds and extra cups of coffee help, you may wonder? Nope. Not at all. Nada. Zip. Zilch. Meanwhile, I could barely do anything without crying out in pain. For instance, carrying the familiar weight of my handbag proved to be an effort in torture. So, at the next visit, he put me on Gabapentin, a drug for nerve pain which was of little more help than the other medications I was on.

When my ‘muscle spasm’ continued to linger without respite, the neurologist determined it was time to get to the bottom of this baffling matter by ordering an MRI. I happily obliged in the secret hope that a couple of herniated discs would show up on the scan, thereby providing something tangible to show myself and the world that what I was undergoing was real and not some attention-grabbing or sympathy seeking ploy. Shockingly enough, everything appeared normal on the scan, and that was probably the first time I started sensing the dubiousness in the eyes of the people close to me.

Speculation as to what could be the cause of this mysterious illness varied from open skepticism to the outright hurtful and a few bordering on the outlandish. A presumptuous older relative implied that my ‘aches and pains’ were something that could be easily shaken off if I would just move my sedentary backside and did some stretching and exercise! Someone else suggested I was infected with the dreaded Lyme disease because we had deer regularly trampling all over the lawn and munching on the flower beds. Spurred on by that fear, I arrived at the office of an infectious disease specialist and endured the familiar litany of tests which all came back negative. At that point, doctor #3 scratched his head in puzzlement and recommended physical therapy. I complied with his recommendation by signing up for a few sessions, but other than aggravating my already tender tissues, it was a failure from the get-go, and I ended up being in more pain than when I started.

In the long line of disappointments that continued to plague my quest for answers and a cure, the next one came in the form of a family friend who owned a physical therapy practice. Upon examination, he assured me that what I had was not a spasm and then proceeded to yank my neck in different directions, presumably to shake out the kinks! Then he introduced me to something resembling a medieval torture device — the cervical traction! I still, to date, don’t know how I managed the drive back home with my neck feeling like it was on fire after being accordioned by that contraption!

The diagnosis of doctor # 4 was something that I knew many had already concluded in their minds about me. That I was suffering from some form of depression which a slew of happy pills could easily remedy.

There I was, pretty much a zombified version of my old self, what with all the different meds I was on. Gone was the attractive, fashion-conscious, active young woman, and in her place was one who was clearly a hot mess. I barely paid any attention to how I looked anymore. The everyday activity of pulling on or taking off a shirt had become so painful that I chose to move around in the loosest, baggiest clothes I could find with my new best friend Mr. Microwavable Hot Pack wrapped around my neck and icy hot patches on the various tender points on my back. No, I had become a person even I wouldn’t want to introduce to friends or colleagues. Not that I cared because socializing was the last thing on my mind.

Doctor # 7, a Harvard-trained neurologist, is someone I’d call a godsend. By the time I dragged myself to his office, I was resigned to the inevitable battery of tests followed by a noncommittal diagnosis that I had now grown accustomed to. But much to my surprise, after he had patiently listened to my symptoms, he said, "I think you may have fibromyalgia”. At that moment, I felt immense relief just to be able to have a name for what was wrong with me, a validation, so to speak. He prescribed Lyrica, which turned out to be a drug that actually worked wonders for my pain.

Agreed, I wasn’t in perpetual pain anymore, but yet I couldn’t help wondering if pills were the only solution to my issue. Not only was I constantly drowsy and tired, but I had also gained 20 pounds over a ten-month period. At this juncture, Josie -a dear friend whose shoulder I leaned on in my time of crisis, suggested I look into the potential benefit of seeking an Ayurvedic consultation for fibromyalgia.

WebMD describes Ayurveda in these words “Ayurvedic medicine (“Ayurveda” for short) is one of the world’s oldest holistic (“whole-body”) healing systems. It was developed more than 3,000 years ago in India. It’s based on the belief that health and wellness depend on a delicate balance between the mind, body, and spirit. Its main goal is to promote good health, not fight disease. But treatments may be geared toward specific health problems.”

Johns Hopkins medicine further elaborates, “Based on the idea that disease is due to an imbalance or stress in a person’s consciousness, Ayurveda encourages certain lifestyle interventions and natural therapies to regain a balance between the body, mind, spirit, and the environment.”

Googling Ayurveda in conjunction with fibromyalgia provided an abundance of information on the Ayurvedic approach to treating this disorder. According to Ayurveda, overall good health depends on the three doshas - pitta, vata, and kapha being in balance. Vibrant Ayurveda, a website offering Ayurvedic lifestyle consultations as part of its services, attributes changes in vata dosha to fibromyalgia “Fibromyalgia as an imbalanced state of vata energy. The physiological principle at the basis of nervous system stability and activation is called vata. A state of vata imbalance means the pitta (metabolism) and kapha (immunity) are also thrown out of balance.”

Nourishdoc, a website devoted to providing holistic treatment choices, goes on to explain how Ayurveda works in treating fibromyalgia “The principal focus of Ayurvedic treatment is to balance the body and strengthen the muscles and nervous system. Toxins are cleansed in the body channels, and digestion is improved to avoid the recurrence of the accumulation. Stress-reducing techniques like yoga, pranayama, and meditation are also recommended, as well as diet and lifestyle adjustments to eliminate the causative factors.”

The more I gleaned about this topic, the more it appealed to me. Despite the drawback of being an expensive venture involving travel, consultation, treatment, and accommodation costs, I was more than willing to give the alternative medicine route a try in the hope of being able to lead a healthy pain-less life that did not involve a lifelong dependency on meds. In hindsight, that was the best decision I made, even if it meant submitting myself to be confined to the treatment center for the entire duration of my stay and eating bland vegetarian food; rest and diet being an integral part of Ayurvedic treatment.

Based on the diagnosis, my treatment plan included Abhyanga, a daily massage using various oils infused with herbal medicines that helped soothe the inflammation in my back, and Shirodhara, which is having a stream of warm medicinal oil poured over the forehead to encourage relaxation and restoration of balance in the Vata Dosha. Now I won’t say it was an easy or painless experience, but I did come out of treatment feeling rejuvenated and more relaxed than I’d felt in a long time. I returned home with a suitcase full of Ayurvedic oils, medicines, and instructions to help sustain me in the coming months.

It’s been a few years since my treatment, and I can confidently attest to the fact that it was a truly life-changing experience. I am not entirely free of my malaise, but I would definitely say it is largely under control. I don’t need daily meds to help me through the day or get a comfortable night’s sleep. Additionally, making some simple lifestyle changes that I’m listing below aided my recovery and helped me shed my post fibromyalgia pounds.

9 Lifestyle Changes That Helped Me Recover From Fibromyalgia

Incorporating more vegetables and fresh fruits into my diet and avoiding red meats and spicy foods

2. Following a mostly gluten-free diet

3. Choosing natural-based makeup/facial/body products.

4. Making a list of things that stresses me and clearing out those that I can

5. Light stretches and regular exercise in the form of long fresh air walks

6. Meditating

8. Keeping a journal to keep track of my progress

9. Joining a support group.

There are the inevitable flare-ups triggered in part by a lack of mindfulness on my part, like when I sit at the laptop for longer periods, go overboard with cleaning, or when I forget to mention to the hairdresser that I have fibromyalgia and to please be gentle. But I can function for the most part without debilitating pain, which is a blessing indeed. A quote from Dr. Mel Poly’s book, A Day Without Pain, helps put things in perspective for those of us making the journey to recovery “Time is not a cure for chronic pain, but it can be crucial for improvement. It takes time to change, to recover, and to make progress.”

Originally published on Medium