If you’re frustrated with fibromyalgia struggles or chronic illness symptoms in general, this post is for you. Sharing is caring. Other people’s struggles help us to feel not so alone. The following article highlights the most frustrating parts of my personal health journey. I’ve outlined the struggles – as well as healing paths – that garnered the greatest rewards. Read on — is your path like mine?
Sometimes, hindsight is the only way to make sense of a situation. When you’re in the middle of a muddle, nothing looks clear. Have you ever felt frustrated, confused, and even angry about your fibromyalgia condition?
I’ll go out on a limb and assume that’s a yes.
Almost by definition, fibromyalgia means frustration. It’s a condition that defies a lot of mainstream medical doctrines. When there’s confusion and disagreement among the very tribe of authorities who come up with treatments, how is the patient supposed to feel?
Yes, aggravation runs rampant in the fibromyalgia community. Hop into any fibromyalgia chat group or support program and you’ll hear comments that share discord, annoyance, and an abundance of irritation.
What you’ll also hear is acceptance.
Fibrofolks are known for their good-hearted support of others. They – above all else – understand the symptoms and interrupted lifestyle that goes along with a fibromyalgia diagnosis.
Here’s the challenge. When is a struggle something to ignore or when is it something to push through and solve? I’m not talking about symptoms. I think the search to reduce or eliminate symptoms is always worth the pursuit.
What this post is about, is the type of struggle that niggles at your nerves. Perhaps it’s a seemingly callous comment from a neighbor that you can’t stop thinking about. Or perhaps it’s something you read and you find yourself on a relentless pursuit to prove it right (or perhaps to prove it wrong).
When should you drop a relentless pursuit?
I can’t answer that for you. It depends on the type of the pursuit and what it may mean to you when you find it. For me, I had to keep searching for answers to three struggles that I’ll share below. I knew that I had to keep searching simply because the inner drive to do so was unrelenting. I didn’t have a choice. I had to know the answers.
These three main fibromyalgia struggles plagued my early healing process.
Struggle #1: You’ll never find a diagnosis.
I honestly don’t remember any medical professional saying those exact words to me. But the experiences I had shouted them loud and clear. I sought opinions, had exams, and endured more tests than I could keep track of. I left each office visit no more enlightened than when I’d arrived.
Sure, I left their office with yet another prescription. But after nothing worked for me, I realized that wasn’t a reliable solution.
In my fifteen years of searching, I saw general practitioners, rheumatologists, cardiologists, neurologists, internists, osteopaths, chiropractors, orthopedists, and more. At each visit, the specialists reviewed and assessed the symptoms that pertained to his or her specialty. The general practitioners looked at all of my “normal” test results and kept referring me to more specialists.
The cycle was endless. And fruitless.
I was told that I had an undiagnosable collection of symptoms. Like a desperate thief, I grabbed one rheumatologist’s clipboard as he left the exam room to get his prescription pad. I felt like I was holding the Rosetta stone of medical information. I was certain that on it, I’d discover the truth of what had been hidden from me. It read, “Myalgia.”
As soon as I got home, I looked it up. Back then, the internet wasn’t what it is now. I found a handful of vague references to muscle pain. When I Google that term today, I find nearly two million results. Along with the same vague definitions of muscle pain, I also see links to other helpful resources on related topics such as fibromyalgia, myofascial pain, autoimmune conditions, and more.
But at the time, I was still in the dark.
I was at a crossroads. I could tell myself that I’d never find a diagnosis and that what I had wasn’t worth chasing. Or I could keep struggling for an answer. Maybe you’ve felt the same way?
I questioned what
was the right thing to do.
Were the muscle cramps all that bad? What about the IBS? Was it completely limiting or could I learn to live with it for a lifetime? I’d dealt with it for ages anyway. Of course, pain also played a big role in my turmoil. It’s hard to think clearly, much less create a logical plan of action when relentless pain is a constant companion.
The more frustrated I became, the more my options seemed to dwindle away. I’d exhausted my resources by seeing nearly every specialist available in my area. They’d each turned their backs on me stating, “I thought I could help, but I can’t.”
I felt the bitter rejection of closed doors.
I have no idea when the tables turned for me, but sometimes dwindling resources can help create focus. I remember the pervasive thought, “I’ve worked so hard to figure this out. I can’t give up now. If I do, then all of my effort is for nothing.”
Perhaps that’s not a good reason to keep going, but that’s what it was for me. I didn’t want to feel that all of my doctor’s visits, research, and increasing symptoms were for nothing. I wanted to feel validated for what I’d done and for how I felt.
So, I did what I do best. I researched some more. I pulled out all of my medical records (crammed into one very large over-stuffed red folder) and started to put them into piles by symptoms rather than in chronological order. Surprisingly, I began to see a pattern.
I noticed the symptom flares and then thought back on what I was doing then. It was the first time that I ever linked my symptoms to an actual event, circumstance, or exposure. I began to see how my symptom flares were related to family events, medications, injuries, job changes, and more.
I created a complicated spreadsheet with this new knowledge organized by event/circumstance and then the symptoms that followed. I noted the duration of symptoms. I noted the intensity of symptoms.
I had created a roadmap to my past.
Little did I know that I’d also created a roadmap to my future. Taking that spreadsheet to another new doctor was the beginning of my recovery. I could see the pattern and path of chronic illness and I voiced my suspicion of a fibromyalgia diagnosis. I was afraid to be right even though I’d never heard it uttered from any medical professional. This new doctor replied to my comment by saying, “No duh. Of course you have fibromyalgia.”
She then turned to her intern and said, “This never happens. Patients don’t come in with all of the work done for you.”
She told me that due to this diagnosis, our work together would be a 90/10 relationship. Ninety percent of the work and feedback would come from me and ten percent from her. Meaning that I’d come to her for checkups and she’d help based on what my needs were at the time.
I now have a different view of the whole experience.
I thought that finding a diagnosis was my holy grail. I thought it was the finish line I desperately wanted to cross. I now understand that it was truly just the beginning of another race. Finally landing on a diagnosis simply meant that I had a name for my collection of symptoms. It was up to me to figure out what to do next.
The biggest discovery I’ve made about this process is that the very thing that hurt me the most – feeling that doctors had no answers for me – was my greatest gift. They weren’t purposely shutting me out. At the time, fibromyalgia wasn’t a cookie-cutter diagnosis with a cookie-cutter protocol to apply. The weight of finding treatment solutions rested firmly on my shoulders.
At the time I thought that weight was oppressive. Now I know that weight was a blessing.
Searching for my own solutions taught me valuable lessons I wouldn’t have learned any other way. When you’re pushed into a corner, you may find yourself taking action that you wouldn’t otherwise consider.
That’s what happened to me.
I learned to not only create my own treatment protocols but to have faith in what I learned. One of the chapter subheadings in my book, FibroWHYalgia is “How I Lost My Balance and Gained a Spine.”
That’s how it was for me. I learned to trust my own inner guidance. I discovered that no one else knew me as well as I knew myself. From that place of confidence and discovery, healing was right around the corner.
Struggle #2: It doesn’t matter what you eat.
The same rheumatologist who wrote the unofficial diagnosis of “myalgia” on his clipboard is the one who said this comment to me. I’ve quoted it verbatim. I remember so clearly asking him about nutrition. Back then I thought I was chasing undiagnosed lupus or multiple sclerosis and I’d read about nutritional protocols for these conditions.
The doctor barely glanced up from his papers to say, “It doesn’t matter what you eat.” He made it clear to me that there was no connection at all between diet and symptoms.
I jumped for joy!
Who wouldn’t want to believe that? I probably went home and ate a box of Girl Scout cookies. Not kidding. And, if I did, I probably had a symptoms flare afterward but blamed it on my undiagnosed health challenge.
Back then, I was still heavily into research mode trying to find a diagnosis. Because I researched symptoms such as widespread pain, body pain, skeletal pain, digestive dysfunction, cognitive impairments, and more – I inadvertently tripped over links to nutrition information. In fact, the topic popped into my research results quite often. I found it highly irritating. What could eating a salad now and then have to do with muscle pain? The notion seemed utterly ridiculous to me.
My research results seemed to naturally separate into two distinct categories: natural solutions and pharmaceutical solutions. I had no interest in the natural solutions; however, one key distinction jumped out at me.
Traditional medical options focused on mitigating, limiting, or maybe blunting the painful symptoms of fibromyalgia. The natural solutions I came across talked about healing the body at a much deeper root level.
That did interest me.
I began my personal experimentation with nutrition to demonstrate that it was nonsense. I wanted to prove to myself that it was a foolish endeavor and then I could move on to other “real” options. No one told me to change my nutrition. If anything, the health professionals I saw gave me blank stares when nutrition was mentioned.
When it came to solutions, I just wanted to rule nutrition out of the running.
I didn’t change my medications, my schedule, or my workload. I was raising two children and didn’t have many options. At mealtimes, I prepared “regular” foods for the family and changed mine to healthier fare. I simply added veggies, removed packaged foods, and drank water. It wasn’t complicated.
I expected no improvement in my symptoms and now can reflect on the truth of the matter. How grateful I am to have proven myself wrong! Some symptoms disappeared within just a few days (a swallowing problem I had along with severe abdominal pain). Others diminished within a few weeks such as the pain in my hands, wrists, hips, and ankles. My sleep was better; my digestion was better.
The last thing to improve was the pain levels in the large muscles across my back, neck, and shoulders. But after a few months, there was no doubt about it. I was on the right track and have never looked back.
Currently, I continue to study, tweak, and experiment with my daily nutritional protocols. I love trying out new ingredient combinations and changing up my meals. I constantly strive to improve the nutritional content of what I eat and enjoy the healing benefits.
Struggle #3: Fibromyalgia is permanent.
When I first found the healing solutions that work for me – nutrition and body movement – I was thrilled to become symptom free. In fact, I was completely symptom free for several years.
I thought I had beaten the odds. I thought that fibromyalgia and the pain I’d experienced were gone for good.
Unfortunately, in my world, that wasn’t the case.
After a stressful situation, my familiar (but unwelcome) symptoms returned. It infuriated me to know that I continued to eat well and move my body in healthy ways, yet the pain resurfaced.
This sent me on my next phase of research. I had to discover the pivotal roles that stress management, sleep, healthy relationships, environmental surroundings, and other factors play in the healing process. Understanding this piece of the healing puzzle is the glue that holds everything else together.
In my book, FibroWHYalgia, I refer to the healing process as the Restoration Trio. I note that Nutrition, Fitness (Body Movement), and Emotional Wellness (including stress management, etc.) are three non-negotiable components in the healing journey.
Nutrition allows the body to regain balance by helping the digestive system to heal. A healthy digestive system allows for proper absorption and distribution of the macro and micro nutrients found in healthy foods and supplements. Body movement activities allow for detoxification, mood elevation, strengthening, balance, and much more. The emotional wellness part of the equation allows for cellular repair, energy recovery, hormonal regulation, and restoration of the healing cycle.
Because I’ve experienced profound healing for myself and have witnessed it in others, I understand that the effects of fibromyalgia vary and are not a lifetime sentence to a permanently impaired life.
We’re each different. The healing we may experience will also vary. Recovery depends on many factors including the protocols used, levels of stress, supportive (or lack of supportive) relationships, toxin exposures, and more.
While fibromyalgia isn’t completely gone for me, I’m grateful to say that my rebound to health after my stressful situation was swift. Because of my fundamentally healthy body, once I discovered the stress management practices that were needed, my body returned to a nearly symptom free status.
I say “nearly” to clarify that not all of my fibromyalgia symptoms have disappeared completely. I’m grateful to state that I live a full and active life with very little pain and minimal symptoms. I consider fibromyalgia to be my constant reminder of when I’m overdoing things and/or when I don’t heed my own advice.
For me, while I believe that the condition is permanent, I’m willing to be proven wrong on that account. I’ll be very happy to discover a new protocol, treatment, practice or any combination thereof to become completely symptom free at some time in the future.
What did I learn from these struggles?
As I’ve mentioned, I’m grateful for the lessons that fibromyalgia has taught me. I can honestly report that I’m glad I’ve had them and here’s a quick overview of what I’ve discovered.
• Not having resources isn’t the same thing as resourcefulness.
I didn’t have knowledgeable medical professionals on speed dial. I didn’t have the financial resources for all of the alternative treatments I wanted to try, and I didn’t have the time to get things “perfect.” But I made do with what I had. I continued to seek solutions that worked for me. And, my hard-earned efforts paid off.
• Healing takes time and patience.
New treatments or protocols that don’t demonstrate immediate results aren’t necessarily ineffective. It takes time for foundational healing solutions to gain traction. I frequently remind myself, and others, that it took time to become ill and it takes take time to heal. That’s how it worked for me. Some practices I tried showed immediate results while others took much longer. As long as I was following healthy protocols, I just stuck with them.
• Getting to the root allows for healing from the inside out.
A root-level approach to healing can lead to surprising results. I’ve seen clients dramatically improve their pain levels by simply removing irritating ingredients from their diets and adding ones that promote intestinal healing. Basic, root-level healing practices include healthy nutrition, proper hydration, detoxification, and stress management practices which all contribute to inner healing. The digestive system is at the heart of healing. And when inner balance is restored, other body systems respond in kind.
• The spiral effect goes both ways.
The downward spiral has a negative connotation. When symptoms build upon each other, they create a cascade effect – or a downward spiral – of more symptoms. Interestingly, the cascade effect can be reversed to create an upward spiral. For example, sometimes small improvements can create a cascade effect of positive benefits. Simple actions such as proper hydration can lead to making other healthy nutritional changes. And, beginning a basic fitness program can lead to lifetime practice of moving the body in healthy ways. I’ve learned to never underestimate the positive impact of even the smallest healthy steps.
I’d like to point out that while I was in the midst of my struggles, I didn’t see the benefits I’ve listed above. It wasn’t within my awareness. It’s hard to make sense of difficult times when you’re in the middle of dealing with the repercussions.
In the same way, I don’t expect you, the reader, to see the benefits of your own health challenges. And, I wouldn’t presume to suggest that you should at this time. The purpose of this article is to stir a glimmer of hope that things can change for the better. And, that sticking with the pursuit of improvement can be worth it.
**This article is my original work and first appeared at ProHealth.com. It is reprinted with kind permission and may be viewed HERE.**
So — what are your greatest struggles with fibromyalgia and / or chronic illness? Please share in the comments below!
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