Image of a smiling women with shoulder length white hair, blue eyes, wearing a blue green scarf over a green sweater

What’s Wrong With Me? Fibromyalgia Diagnosis-Part 1

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Me, in bed looking ill. The top of my head is covered with a cold, wet teal washcloth. I'm wearing glasses and hoody sweatshirt that says GRANDVILLE.

“This isn’t me,” I told my new general practitioner. I knew something was wrong, but no idea what. #fibromyalgia #newdiagnosis #wellnessjourney #ThisIsFibro

The First Signs of Fibromyalgia

Looking back from where I am now, I can see the signs that things in my body had been changing for quite a while before my final year of teaching and Fibromyalgia diagnosis.  But at my age (53 at the time), I knew that I was in perimenopause.  I knew to expect changes. Thanks to my partner teacher and good friend, I had preemptively read some books on menopause that she had recommended to find out what to expect.

Prior to all of this, I had had a diagnosis (and was being treated for) acid reflux. After a few years of prescription acid reflux medication, I even had the Nissen Procedure to help stop it. Also, I lived with Interstitial Cystitis (chronic pelvic Pain syndrome with urgency and incontenency. For over 20-years I had undergone treatment with prescription and OTC medication, aloe supplement, a few stints of pelvic floor physical therapy, numerous bladder instillations, and even a Botox injection procedure. All of which have brought minimal relief and no real change to my symptoms.

I often felt that If I could delete my midsection, I’d be golden. However, I was pretty used to living with pain. I sure wish my doctors had mentioned that living with chronic pain wasn’t a great thing and actually would develop engrained pain pathways in my central nervous system.

Teal line drawing of a lotus on white

Fibromyalgia Brought Me Down

In the spring of 2015, extreme fatigue, foggy brain, and high anxiety started. This I couldn’t just push through. So, I went to my doctors to find help.

Figuring it was hormonal, I went to visit my gynecologist who prescribed me a  patch of Estradiol  (.0375mg BIW) along with Progestin(QD). This did seem to work until the fall 2015. So, I went back with the same complaints. My gynecologist bumped up my medication to a .05 patch, adding in a vaginal Estrace cream (BIW). But because I was still experiencing increasing anxiety a month later, she put me on Lexapro (20mg QD). Again, this helped for a time. 

Teal line drawing of a lotus on white

Stressful School Year

The school year of 2017-18 was a rough one on several levels.  Our team of three teachers was cut to two. The class sizes for the group coming up had been at 19 or so. Being it was a really challenging group since arriving at our school in kindergarten, the size had helped.  However, with two, we were pushed to 30 per homeroom teacher, and each of us had to take on subjects we hadn’t taught previously.  If that had been all, I don’t think things would have gotten so bad.  However, serious life problems for me and my partner teacher kept hitting us one after another.

The final blow for me was when my partner teacher of 16years got reassigned to a middle school position the last day of school, June 2018.  While I was happy for her because this would fit much better with her life, it ended up leaving me deeply sad (a fact I didn’t fully register for quite a while). 

Teal line drawing of a lotus on white

Roving Pain That Wouldn’t Resolve

My husband retired that June.  For a celebration, we decided to make a trip we had wanted to do for a long time.  We drove out to California the week after school ended. That’s when the pain in my legs began.  It roved from leg to leg, mostly in the calves. I stretched and massaged endlessly, but it never lessened.

A month later, back at home, the pain in my legs was taking up much of my attention.  Nothing I did would relieve the deep, intense aching. The pain would move from my hips to my calves sometimes the right side more intensely and then the left. This shift didn’t seem to correspond to any changes in my daily habits or activities. 

Teal line drawing of a lotus on white

The End of My 32-year Teaching Career

By the time school started up again in August 2018, the leg and hip pain was just a way of life. The district had put us back to three sections, meaning I had two new teachers to “train”. It was a really bumpy transition (to say the least) which put a lot of strain on me.

That’s when I noticed a shift in the pain. The deep ache and throbbing started to show up intensely in my shoulders, neck, and chest as well as in the legs as before. My legs still ached all the time, but not as noticeable when compared to what I was experiencing in my upper body.

By the end of September 2018, the intense pain (level 6-7) was roving all over: left to right side of my body and from the upper to lower part of my body. Again, this seemed to have no explainable reason. In addition to the pain, my brain fog was intense. This led me to panic about teaching, something that was basically second-hand nature was now foreign and stymied.

Kneading Need
Katie Clark

Sitting across from him, I watch his question mark gaze
follow my own fingers kneading my arm like bread dough.

Deep within the fibers of my body is an aching-
the famished maw of need.

In the shower, I see purple and brown
finger painted bruises on my calves,
thighs, forearms...chest from
kneading the angry gnawing
with no respite.

From foot to skull, silent shouts seep.
Bone to muscle to flesh-
exposing the desperate deprivation,
demanding to be satisfied.

How funny it is coming to love her-
pain and all.
To understand that she is just asking
for what she has needed all along.

It Became Evident That I Wasn’t Myself

The pain kept me awake at night. During the day, I had a desperate need to massage the areas of pain which was all over my body.

People around me definitely started to notice. At staff meetings, I’d notice someone watching my arm. When I looked down, I realized that I was frenetically massaging it.

I became extremely emotional and anxious 24/7.  When I got home from school at night, I’d crawl into bed too drained to do anything else. By the time Thanksgiving (2018) came around, I was a completely depleted mess.  And so I went to the doctor once again at the insistence of my family. 

Teal line drawing of a lotus on white

Read the Rest of the Story:  What’s Wrong With Me? Part 2

What has been your experience if you, too, live with chronic illness? Did it slowly take over or did it hit you all at once?

My granddaughter says “Sharing is Caring”;)

teal line drawn waterlily with teal lettering of the title and motto