Finding A Diagnosis Is Sometimes Its Own Battle
I would have never imagined I’d become my own best health advocate in finding my fibromyalgia syndrome diagnosis. It was August 2013. I remember sitting in the hospital waiting room; I was 20 minutes early for my rheumatology appointment because I couldn’t handle the stress of potentially being late.
What I was hoping for from this appointment, but sadly didn’t think I was going to get, was an answer. An answer for my chronic pain, fatigue, gut issues, and an abundance of vague and seemingly unconnected symptoms. It felt like my last chance to get to the bottom of my health problems, after umpteen previous doctor visits.
Although I was living in physical agony, when I looked around in the hospital, I felt out of place. There were people there who were struggling to walk and who were visibly in a lot of pain. In contrast, I looked completely normal. I moved as though I was perfectly fine.
I felt like a fraud in that moment. I was always anxious that nobody would believe the amount of physical pain I was in.
For the past two years, my health had gotten progressively worse, and nobody seemed to be able to tell me why. I had been through umpteen tests: ECGs, x-rays, and what felt like every blood test under the sun. Still, I had no answers.
Fibromyalgia Syndrome: A Name To The Pain
Since I had persistent back pain, my doctor referred me to a rheumatologist on the off-chance I had ankylosing spondylitis.
It turned out that I didn’t have that condition. But within what felt like minutes of seeing the rheumatologist, I got the answer I had been searching for.
“I know what is wrong with you. I believe you have fibromyalgia.”
I didn’t know how I felt that moment. To have fibromyalgia syndrome confirmed my pain. I wasn’t crazy — what a relief. At the same time, though, the prospect of having a life-long condition was terrifying.
The rheumatologist told me that if I sorted my poor sleep I could potentially diminish my symptoms and live relatively well. I left that appointment with a prescription for amitriptyline, an antidepressant commonly prescribed to help improve sleep and reduce pain in fibromyalgia syndrome. I resolved that I was going to beat fibromyalgia and get my life back.
I started a blog, February Stars, to track my progress and to work through my own thoughts about the disease. I hoped that writing things down would help me to realize my own mistakes and what was working for me. I started my blog for myself and did not show a single person. Over time people started to find it, then my writing style evolved and I focused more on helping others. But, to begin with, it was more a personal journal for myself.
Little did I know that I was about to jump down the complicated rabbit hole that is chronic illness.
Unfortunately, my health continued to deteriorate over the course of the next year. I went from one flare-up to the next, and each time I never quite recovered to the same level of health I enjoyed before. The flare-ups wracked my body with debilitating fatigue, intense muscle and joint pain, a foggy brain, and low spirits.
Part of the problem was that I didn’t want anything to change or for people to see me differently, so I played down my fibromyalgia syndrome and refused to accept that I needed to make changes and accommodations. Instead of putting everyone else first, I should have prioritized my health needs. Although I did not appreciate it at the time, it would have been helpful for me to pace my activities, and plan rest into my day.
What I did realize, however, was that prescription medications did not agree well with my body. The amitriptyline went in the trash after three months as it did little to help reduce my pain. Though it did reduce the number of times I awoke in the night, it made me feel groggy and exhausted during the day. When I stopped taking amitriptyline, I decided to take a break from medications.
I started looking into alternative ways to manage my fibromyalgia syndrome such as experimenting with diet (eating organic and unprocessed foods) and alternative therapies such as reflexology, Reiki, and the Bowen technique. These measures met with some helpful results.
Unfortunately, because I was still putting myself under too much physical pressure in my full-time job as a guide dog trainer, more and more cracks in my health were beginning to show.
My social life pretty much disappeared and I stopped being able to help my husband with the housework. My life had become work, pain, and feeble attempts at recovery. I’d come home from a long day and crash out on the sofa or bed, trying to recover from the damage I’d done to my body from walking miles each day training dogs.
But every morning, I put on my brave face and pushed on. My life felt like it was crumbling around me, but most of the people I interacted with were none the wiser. Only a few of my closest friends and family knew anything was wrong.
Falling Fully Apart
New symptoms also appeared around that time. When I started to get neurological symptoms, I got really scared. I had tingling, numbness, and a pins and needles feeling down my left-side. At one point, the outside of my left foot went completely numb for a few days. I had pain behind my eyes and occasionally blurred vision. I was referred to see a neurologist on suspicion of MS. I waited in fear for the results of an MRI scan, but thankfully they ruled out MS and my symptoms were put down to my current diagnosis of fibromyalgia syndrome.
By the spring of 2014, I was struggling. I was signed off sick from work for a few weeks for the first time because of my fibromyalgia syndrome. Rather than accepting this as a sign that things needed to change, I was resentful and resolved that I just needed to fight harder. I was in full denial and just wanted to keep going.
Sadly, anyone with this condition will tell you that pushing harder only makes things worse. In my case, things got much worse and my fibromyalgia symptoms worsened. I was in a lot of pain and felt exhausted. I visited my doctor to ask for help and left with a prescription for gabapentin, a drug used to relieve fibromyalgia pain.
Initially, gabapentin had a stimulating effect and unfortunately, this resulted in me pushing myself too hard. I was at work one day, then bed bound the next. I completely crashed.
This was the start of one of the most difficult times of my entire life. I can’t even put into words how hard it was to be unable to even get out of bed without help. I struggled to do anything for myself. My body felt like a it weighed a ton; I had to put in enormous effort just to move my limbs. It constantly felt like someone was sitting on my chest. Each time I stood up, my heart would race and I’d feel even more unwell. I, therefore, spent most of my time lying horizontally.
Was this my life now? I couldn’t help but think it was. I felt like no matter what I tried to do to improve my situation, I always came crashing back down again. Things felt different now to how they had before and I was worried that there was more going on than fibromyalgia.
My doctor did all he could, but there were only so many avenues that could be explored within the constraints of the Western medicine. I gave up all hope of ever getting better.
Then, in October of 2014, I was asked if I would like to write a blog review on a book called Suffered Long Enough by Dr. Bill Rawls. He himself had recovered from both fibromyalgia and Lyme disease, which i was not familiar with.
I took up this opportunity, and that book reignited hope in me. Dr. Rawls shared his theories on the underlying cause of fibromyalgia syndrome, Lyme disease, and CFS as well as tools that helped him (and his patients) to recover their health. I took a leap of faith and decided to follow the strategies and herbal therapies outlined in the book. I took rhodiola, cordyceps, reishi, ashwagandha, resveratrol from Japanese knotweed, and an anti-inflammatory supplement containing turmeric, boswellia, bromelain, white willow bark, yucca root, and ginger root. Things initially got worse, but eventually they started to get better.
My pain lowered and this prompted me to stop taking gabapentin. I was struggling with this medication as, although it knocked my pain down a level, I suffered from side effects. These included nausea, increased fatigue, and it also made me feel generally unwell.
Other benefits I found from Dr. Rawls’ protocol, included improvements in the appearance of my skin, my stomach was less bloated, and my posture improved. Family members commented on how I looked less drawn and hunched in.
A Holistic Approach
Impressed with my progress, I made the decision to start the Vital Plan Restore program in January 2015. From this point on I felt as though I had someone championing and helping me. Dr Rawls, his daughter Braden, and the whole team at Vital Plan have been a constant source of help and support. I had finally encountered people who completely got it!
The Vital Plan Restore program is a herbal program for fibromyalgia syndrome, chronic fatigue, and Lyme disease formulated by Dr Rawls. Along with the herbal formulas, the Restore program includes email support that walks you through the diet and lifestyle changes required for optimal healing.
With this support, I followed an elimination diet suggested by Dr Rawls. I found a diet free from gluten, dairy, and sugar to be very beneficial. I also removed nightshades, nuts, and other grains from my diet for a period. A few months later, I was able to reintroduce some of these foods, such as potatoes and tomatoes, as my gut had healed to a point where I could tolerate them.
Reducing stress was also a key factor to my recovery. I made my world much smaller and gave up watching the news. I learned to let things go and to deal with worries or anxieties by writing them down and working through them. I added gentle yoga and qigong into my day and practiced relaxation techniques, such as deep breathing exercises. I also changed my mindset back towards getting well and I began to believe that I could get better.
Things got a lot better for me health-wise but progress was slow and difficult. Everyone looks for a quick fix but unfortunately they don’t exist. Recovery is hard work and takes time. Although my pain and numerous other symptoms improved, fatigue still dominated and so my level of functioning remained low.
During this time, I couldn’t help but shake the feeling that there was something more than fibromyalgia syndrome going on. But, as my health was slowly improving, I put that thought on the backburner.
By the start of 2016, I felt like my progress had plateaued. I had improved greatly compared to how I was back in 2014, but I was determined to progress even further. I decided to try Hyperbaric Oxygen Therapy (HBOT) and started an intense course of sessions. Unfortunately, I detoxed too quickly and HBOT made me very ill and I had to stop the sessions after a couple of weeks.
I didn’t know it at the time, but I was experiencing a severe herxheimer reaction, which is an increase in symptoms caused by bacterial die-off. When bacteria are killed, their cell wall is destroyed and this releases toxins into the body. I was not detoxing to support my body in removing these toxins, which would have reduced these symptoms.
Following this, my health was very up and down, and so I began to re-explore the possibility that there was more to my story than fibromyalgia syndrome.
I found myself online reading more and more stories of people diagnosed with fibromyalgia syndrome and/or ME ( myalgic encephalomyelitis)/CFS (chronic fatigue syndrome) who then tested positive for Lyme disease, which has many similar symptoms. After thinking it through for a while, I went to see a doctor that specialized in illnesses triggered by environmental factors. After a lengthy consultation, the doctor ordered some blood tests.
When I saw the words “active Lyme borreliosis,” my heart sank. I had Lyme disease. This had gone undiagnosed for years. I believe that Lyme disease has caused my fibromyalgia syndrome and chronic fatigue symptoms, as well as the neurological symptoms I developed back in 2014.
In that moment I felt incredibly grateful for Dr. Rawls and the Vital Plan. Where would my health be had I not decided to take that leap of faith? I had been addressing my Lyme disease without knowing it by taking the Vital Plan Restore program for fibromyalgia syndrome.
Adjusting To A New Diagnosis
Having a new diagnosis has been a difficult adjustment. It’s been hard coming to terms with the fact I have Lyme disease. I can’t help but think had it been discovered years earlier, I could have avoided such a decline in my health.
Sadly, when left untreated, Lyme bacteria wreaks havoc on the body and becomes very difficult to treat.
I think the biggest lesson I have learned through this experience is to always listen to my intuition. I would also urge anyone with a fibromyalgia syndrome or ME/CFS diagnosis to consider the possibility of Lyme disease. I am not naive enough to think that Lyme will be the root cause for everyone. However, I know there will be many others out there who, like me, have Lyme disease but who do not know it.
Under the guidance of my doctor, I was given a new treatment plan and I am excited to see how my health progresses in 2017.