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Fibromyalgia My Search for a Diagnosis

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With 50 years around the sun, Kimberly enjoys sharing a variety of her personal life experiences with others. She is a Fibromyalgia Warrior!

In my previous article, I shared in detail the numerous ailments that had plagued my body with the invisible illness of Fibromyalgia and Chronic Fatigue Syndrome. In today's article, I intend to share the process it took to obtain a proper medical diagnosis.

I have placed a link at the bottom of the page to my previous article regarding my personal Fibromyalgia journey. If you or someone you know is fighting this battle, I highly encourage you to follow along. Knowledge is power!


The Face of a Chronic Illness Survivor

fibromyalgia-my-search-for-a-diagnosis

My Fibromyalgia symptoms began long ago. I have suffered from a significantly compromised immune system, and for as long as I can remember, my body has always fought illness.

I will begin by sharing some of the methods, therapies, and diets that I tried in a desperate attempt to find answers to my overwhelming amount of poor health issues.

Nambudripad’s Allergy Elimination Technique

In 2015 I began seeing a Naturopathic doctor. He did a complete assessment and analysis of my overall health needs. At the time, I was overweight, very sick, and depleted of any immune system to fight off colds, flu, headaches, poor digestion, and many of the other ongoing ailments that had been with me over the years.

My Naturopathic doctor suggested I change my diet to "Eat Right for My Blood Type." He also began a series of weekly/bi-weekly N.A.E.T. allergy testing and treatments. I followed the blood type diet and received allergy treatments for a year.

During this time, my symptoms continued to escalate. I experienced extreme pain in both of my feet, joint pain throughout my body, breathing issues, swollen glands, exhaustion, spacey mental fog, headaches, dizziness, and body stiffness.

I tested positive for many food allergies: Eggs, Corn, Dairy, Wheat, Sugar, and Chicken, to name a few. The therapy was difficult to endure as every time I experienced a treatment, my body would react adversely until my body cleared the pathway to accept these foods back into my diet. The changes didn't last long before my body reverted to responding negatively once again.

Eventually, I took all of the above food invaders out of my daily diet in order to function without allergic reactions.

Nambudripad's Allergy Elimination Technique, also known as N.A.E.T., is a safe and natural approach to detecting and eliminating all types of allergies. N.A.E.T. combines techniques from Kinesiology (muscle strength testing), Chiropractic, and Oriental Medicine, to clear allergic reactions through a "reprogramming" of the brain.

For more information, please visit www.naet.com.



Treatment through Natural Therapeutics

In July of 2017, I took another alternative path for my care. I began receiving therapies through Integrative Medicine, specializing in acute and chronic conditions. I experienced detoxification sessions through Quantum Biofeedback, Aromatherapy, and the use of Essential Oils and Massage in the form of Myofascial Release and Cupping techniques.

I did seem to have some temporary relief and showed some improvements; however, my body quickly reverted when the treatments ended.

"the thing is

is that you're still alive,

your heart is still beating

your eyes are still blinking

your brain is still thinking

you thought you couldn't

survive yesterday

but you made it to today

so keep going"

— s.b.

Daily Survival and Family Support

In January of 2019, My life was so upside down and sideways. I was not functioning well in my day-to-day living by any means. I had such extreme fatigue that getting out of bed on any day was considered a monumental achievement. Simple tasks such as showering took every ounce of energy I had.

I was blessed if I experienced one good day in a week; this had gone on for months at a time. I was incapable of participating in much of my daily activities of living. Eventually, I would begin to experience one or two good hours in a day before I was unplugged again and back in bed.

During this time, my family and closest friend rallied around me. My youngest son, who resided at home, tended to many of my daily needs. He was also my driver to the emergency room on more than one occasion. Going through this was such a humbling experience. No parent in their right mind wishes for their children to witness such horrors. My children and my loving husband were my biggest blessings through this excruciating journey.

I was blessed to have a loving, attentive daughter and her family who came from out of town and did some extended freezer meal preparations, became my shoppers, and was always just a phone call away.

My second son and his family were also very involved in helping me through this negative time in my life. My daughter-in-law was extremely loving and kind, and nurturing throughout this process. I spent many nights in their home receiving extra help during those dark days.

My grandkids watched their Nana decline; I could no longer play and interact with them as I once had. On one specific occasion just before Christmas, I vividly remember the horrific scene involving my brokenness and inability to interact with my grandkids. My husband and I had plans to attend a Christmas Cruise to the North Pole with our daughter and family. By the time we had arrived at my daughter's house, the long drive had been my undoing, followed by three flights of stairs once we had arrived, which felt like eternal hell. I had collapsed in the hallway and was sobbing. At that moment, I experienced a complete mental, physical and emotional undoing. My precious grandkids witnessed their Nana having a meltdown. A living nightmare I will never forget.


This is what a Good Day Looked Like During the Thick of the Fight

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Countless Hours, Days and Months of Research

By this time, I had spent countless hours of personal research into possible causes of my ongoing and debilitating conditions. I googled all my symptoms, ordered copious amounts of books from the library, searched the world wide web for answers, watched informational videos, listened to various doctors, and looked extensively into Lyme's Disease, Lupus, Sjogren's, MS, and Fibromyalgia.

fibromyalgia-my-search-for-a-diagnosis

Mainstream Medical

I finally decided it was time to seek out mainstream medical answers. I found an MD who sounded encouraging at first. He listened to my mile-long list of issues and went to task immediately on drawing up lab work. Oddly, upon doing a physical exam, he could find no reflexes in my knees or elbows.

His doctor's recommendations were for me to get more exercise, adopt a Mediterranean diet, and take up meditation practices along with stress-reducing yoga. What part of zero energy did he not understand?

My labs came back with a worrisome HIGH B-12 level and High Cholesterol. We discussed them, and then the doctor said he didn't know what else to do for me. I asked if he would give me a Lyme disease test, and he refused to do so. It was time for a second opinion. I left that day feeling I had more questions than answers.

fibromyalgia-my-search-for-a-diagnosis

Emergency Room Visits

In my twenties and thirties, I had several trips to the emergency room. Most often associated with acute chest pains, troubled breathing, and electrical sensations up and down my arms. The medical staff determined that MSG was a factor in causing my many hospital visits.

In recent years, I was admitted to the emergency room in 2017 with electrical type impulses up and down my arms, across my back and shoulders, shortness of breath, headaches, and cold body temperatures. I was diagnosed with Asthma and Raynauds Phenomenon.

After my 2017 hospitalization, my naturopath treated me for a Neurotransmitter Imbalance. (Acetylcholine.)

In 2018 I was admitted to the emergency room with elevated blood pressure, tingling, burning, icy/hot pins, and needle sensations all over my body. These adverse symptoms had persisted days on end. The attending doctor diagnosed me with Paresthesia linking it to stress and anxiety.

August of 2019, my health took another spiral downhill. I ended up with "EXTREME" Vertigo and found myself back in the emergency room for care. I was diagnosed with another double inner ear infection. In the duration afterward, I experienced a significant decline in my vision once more and a constant battle of dizziness.

A Second Opinion

This doctor was genuinely fantastic at my first appointment. She spent over an hour with me, asking me many questions. We went over all my symptoms, like the 17 days of headaches I had during January and the six days of February. The Paresthesia, the electrical currents, the extreme fatigue, bloating, pain, etc.

She examined my labs and was able to see warning flags from as far back as the last six years related to my kidney function!!! She set out to do a more thorough investigation of my kidneys with up-to-date labs and imaging. She was also highly concerned with my cholesterol levels, and my white blood cell counts.

The doctor would be digging deeper into why my B12 levels were so high—looking to see if my body was absorbing the B12 or not. She would be testing me for celiac and malabsorption as well as testing my D3 levels.

The doctor established that my body does not handle stress well, either good or bad stress. She wanted me to bring the Ionic Supreme supplement back into my daily routine to combat the stress. (a powdered drink supplement through the company of Isagenix that had proven well with my body over the past years) She suggested ginger in candy form, tea, or supplement to help with my nausea; she suggested turmeric for the joint pain & inflammation. I would also be increasing my magnesium.

Upon that last visit to see the doctor, my immediate prayer request was to have God's provision in getting some cholesterol-lowering supplements on board. She approved me to take a previously proven to my body "choleslo," cholesterol-lowering supplement instead of a prescribed statin. But she insisted I get on it pronto.

The doctor said she believed my body was dealing with the accumulation of lifetime traumas and said the auto accident nearly 21 years ago could have caused more damage than we gave it credit with head trauma.

So, all in all, I felt like this doctor had taken me seriously and had a great plan of attack in getting some clarified answers for me. I left the clinic that day with a huge sense of relief and a peace that I hadn't felt in nearly two years! There was hope in someone figuring out why I was having such difficulties.



Stage 3 Kidney Disease

The doctor's immediate findings on my kidney results proved indeed that I was in stage 3 kidney disease. The news about my labwork sent my mind into the depths of darkness. I had seen enough in my past profession as a nursing assistant and home health care provider to know the overwhelming seriousness of those fighting kidney disease.

I called my daughter; I wept and allowed my mind to take me places it shouldn't have. At that moment, I was in a miserable state of emotions.


Follow Up Doctor Visit

Great news my kidneys went from a stage 3 kidney disease to that of normal function. This news was such a relief!

My most recent food changes to a nutritarian diet and the power of prayer may have jump-started my kidneys.

Lab Results:

49mL/min/1.73m2 considered within the range of stage 3 kidney disease

TO

105mL/min/1.73m2
*Which is normal to high functioning!*

Normal range being >=90mL/min/1.73m2

I took this as a GREAT BIG WIN! I was absolutely over the moon!

All other labs were within normal limits. No celiac, just gluten intolerance.

Unfortunately, my doctor didn't know what was WRONG with me. She said I was metabolically fine. She confirmed my congestion, my sore throat, and my T.M.J. with the tightness in my jaw. She told me my low body temperature readings are pretty standard. A body temperature of 94.8 is nothing to stress over. She said it's pretty common for some not to deal with winter well and that my body taking hours to get warm was just "my normal."

She told me to stop focusing on my vital signs as it can cause more stress. She asked me to continue to log my symptoms, but at the same time, she told me this might be my new regular.

My Lipid Panel Results

Something more to celebrate! I had to take every win I could get. So many ups and downs along this bumpy road.

My lipid results had GREATLY improved!!! All the work I was putting in was showing metabolically.

See my two-month difference: Diet change and CholesLo supplement.

Doing the HAPPY DANCE!

Two Month Comparison

January 16thMarch 16th

Cholesterol 311mg *High*

Cholesterol 181 within *Normal Range*

HDL 43mg *Normal*

HDL 45 within *Normal Range*

Triglycerides 254 mg *High*

Triglycerides 92 within *Normal Range* Dropped 99 Points

My Office Visit Meltdown

I experienced a complete mental breakdown and began sobbing in her office. I cannot begin to explain the absolute feelings of defeat, despair, grief, anger, upset, betrayal, frustrations, exasperation, and desperation that my mind and body were going through. I knew that these symptoms were not typical. I could not understand why my body was going haywire.

I asked her about Fibromylagia and shared some of my findings with her. She gave me a 30-page printout to go over the medical diagnosis of Fibromyalgia. She asked me to read it and mark it up and see her the following week to go over my findings with her. If my symptoms aligned with her printout, she would diagnose me with Fibromyalgia and send me to a Rheumatologist.

My doctor said she didn't know what to do with all my symptoms. She told me to focus on my wins, continue my healthy eating, 30 minutes of daily exercise, take my supplements, read her printout, and see her the following week to discuss my findings.

I was beyond grateful that my labs were in a normal range. But I felt highly devastated that my Dr. didn't know how to diagnose me or treat me. She implied that I had too many symptoms for her to unravel.

She validated me by saying she believed it was not just in my head, but she didn't know what to do with me other than stress management and even offered CBD as something that may help. I left in tears, feeling like a basket case.

fibromyalgia-my-search-for-a-diagnosis

A Formal Diagnosis

On March 6th of 2019, after years of pain and suffering, I finally received a formal diagnosis of Fibromyalgia and Chronic Fatigue Syndrome.

After going over the doctor's 30-page printout, she was able to see all my overwhelming symptoms glaringly aligned with that diagnosis. She put orders in for an immediate referral to see a Rheumatologist.

She also tested me for Lyme disease at my request as Lyme disease mimics Fibromyalgia symptoms. The test came back inconclusive.

I was overwhelmed with relief to finally have a medical diagnosis and name to associate with many ailments.


fibromyalgia-my-search-for-a-diagnosis

MRI

I was distraught over the zapping sensations in my brain and the current electrical activity my body was experiencing. I was also concerned that perhaps all these ailments were MS-related. I inquired about having an MRI done to seek answers further; at that time, the doctor told me that she could not see the cause for a MRI. She had no concerns of tumors or anything to be worried about in my head. She said my headaches do not warrant an MRI. Brain zapping and electrical currents were considered part of this condition.

A Tiny Rant

I called the Rheumatologist I was referred to only to find out 1) That they hadn't received me in their system as a new patient. 2) That they DO NOT TREAT Fibromyalgia. This clinic recommended I see a Neurologist. However, they said at the time that seeing one would be next to impossible in my area.


Deep Rooted Grief

For the month that followed, I felt oppressed and depressed. I didn't feel like myself. I was sad; I was broken, overwhelmed, and shattered.

I didn't know how to FIX myself.

I felt numb; I felt like closing myself off from everyone. Yet, I was still here fighting for that life I was grieving.

I had been SOBER for ONE year; that was hard work. I was proud of my accomplishment after 29 years of being alcohol dependant, but I grieved the loss of friendships. I mourned the loss of my dog; I lamented that I no longer felt celebrated or notable as an individual. I wept that I could not even feel love in my life right then.


fibromyalgia-my-search-for-a-diagnosis

A Whole New Chapter

You have reached the end of my account of seeking and finding a proper diagnosis. It is not the end of my story, though; instead, it is the beginning of a whole new chapter in my life.


Be Kind

Please be kind to your fellow humans. Everyone fights their struggles. Those with autoimmune diseases fight an invisible battle. I want to bring awareness so that others may be more understanding. Just because you can't see it doesn't make its severity any less. May we all choose to walk in love and compassion.

This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.

© 2021 Kimberly

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