Writing with Fibromyalgia—Choose to Make Every Day a New Start

by Katie Clark

After a three-year slide into brain fog and loss of focus, the inability to function in my daily life, ever-increasing areas of pain for no apparent reason, a fatigue so deep that it felt like all the iron had been taken out of my blood, and a spiraling anxiety, I was diagnosed with fibromyalgia.

Being I was in peri-menopause, I chalked it up to the change in hormones.

I asked my friends (teachers and those around my same age) and they had similar issues of being tired, stressed, anxious, and waking up as if by alarm at two in the morning nearly every night. But when I asked if they had pain on the inside of their knees, none of them did, and thought I may have injured myself.

Or as I would stretch my shoulders and legs during staff meetings (constantly getting up when others could sit), I got a few stares.

Doctors Told Me My Anxiety Levels Were Normal

I reported to my OBGYN that I had a sharp pain under my armpits (a very specific point in each). I was sent to a specialist who told me I was fine, I just needed to stretch that area more. After doing a fair amount of research about the effects of hormones and dealing with stress, I went back to my OBGYN.

She said that it was pretty normal to have the anxiety levels I was experiencing. She put me on Lexipro 5mg, which seemed to help at first. Then the following start to the school year, things worsened, so I went on a higher dose. Even after this, I found I wasn’t able to teach (which came as naturally to me as breathing); I stumbled on my words, my sense of humor was gone, every lesson and interaction was stilted.

My Doctor Thought I was Just a Stressed-Out Mess

I never had an issue with being observed in my classroom; in fact, I always enjoyed hosting classroom learning labs for my district, being observed by 10 or so peers at a time while I taught. So when I couldn’t fill out my evaluation pre-observation form with any sort of coherence, I really knew something was wrong.

My children, diagnosed with ADD during college, said, “Mom, you have ADD. You’re the same as us.”

So, I went to my General Practitioner, bringing my husband along as a character witness because after we moved to the area, I had changed to this doctor who didn’t really know me. He saw that I was already on Lexipro, now 10mg, and offered to up the dose.

When I said I wanted to be tested for ADD (I had researched and thought it feasible that with the hormone changes I was no longer able to use the coping skills I had developed over my past 53 years), he conceded, saying that “…since you have this in your head, we’ll have you do the test.” I could tell he felt I was just a stressed-out mess.

However, when I did the computer test and 1:1 interview, I was surprised to find that I scored in the medium/high-level for ADD. After taking Vyvanse for a couple of weeks (I could tell I was handling life better), I re-did the test while on the medication and came out as functioning normally.

One thing about the diagnosis didn’t ring true to me, however; I was never scattered, unmotivated, or irresponsible during all my own schooling years. In fact, I was just the opposite. However, I was relieved with that diagnosis and was happy to let the Vyvanse/Lexipro combination help me through the day, functioning fairly well.

The Deep, Gnawing Pain Returned and Got Even Worse

This brought me to the end of a very stressful school year (many challenges and changes), and I thought I had figured out the issue, just a touch of the ADD and menopause. However, as soon as school let out and my husband and I were in our packed car driving from Michigan to California for an extended vacation, the pain returned—a deep, gnawing ache that began in my legs.

No matter how I stretched or massaged, it stayed, moving around from upper to lower from left to right. That pain remained the rest of the summer and into the start of the next school year which due to many changes looked to rival the last year as far as stress was concerned.

Now, the pain moved into my shoulders, neck, and arms (again switching from left to right). By November, I was barely functioning. The Vyvanse and Lexipro weren’t doing anything to quell my brain fog and utter exhaustion. I’d flop into bed every night upon getting home and spent much of my weekend in bed.

Finally, I Was Diagnosed with Fibromyalgia: A Relief

Thanksgiving break was when my GP decided to do all sorts of blood work (when I beseechingly said, “Truly, this isn’t who I am. This isn’t my norm at all.”) When the blood work came back, he said, that this could possibly fibromyalgia.

I had never heard of it. Being the teacher and learner I am, I began to educate myself. It was truly depressing all the things I read about how debilitating and life-changing this fibro thing was. Also, the reviews on the meds like Cymbalta scared me to death.

By December 7th, I was on long-term leave and gave in after really wanting to avoid taking Cymbalta. I retired from a 32-year teaching career just after I turned 55 in May of 2019. In April of 2019, I went for a two-hour evaluation interview for a fibromyalgia 10-week, multi-disciplinary program at a local Rehabilitation Hospital (Mary Free Bed).

I was officially diagnosed with fibromyalgia.

At that point, I knew a lot more. (Thank goodness for those who share their journey like Donna in her blog fedupwithfatigue.com). I was relieved for the diagnosis because it meant that I would be eligible to get into the program and in my mind, get back to living.

I Prefer to Handle My Fibromyalgia Symptoms in My Own Way

There was a time that I listed a LONG list of every issue I was having (much longer than the one below) in a note on Google Keep. I had it so I could remember to tell everything at each of my doctor’s visits. I felt like I had to prove that things were not okay and wanted to be taken seriously.

I have now deleted that note. Not that I don’t have most if not all of those things going on, but I’m now in a place that I accept what it is and am not looking for a cure from my doctor (because I don’t feel they have one).

I don’t want a medication if I can survive without one, so this is my plan of action at this point. Not that I won’t go back on Cymbalta or whatever if I must, but right now I prefer to handle the symptoms in my own way.

Issues I have that can go from light to severe and anywhere in between at any given moment:

• Brain fog / Lack of focus: I was pulled over by a police officer the other day to my shock. He said I was swerving in my lane a bit and wanted to make sure I wasn’t under-the-influence. It could have been due to my losing focus or even to my self-massaging of my neck and jaw that I was doing on my drive.
• All-over muscle ache. When I went to a chiropractor recently and she wanted me to mark on the body where the hurt was and what type, there wasn’t a spot on the body that wasn’t marked. Even my dang hands hurt.
• Body drain/fatigue: I will be going fine all day and then, bam! I can’t go forth any longer. Sometimes I wake up that way and have to just rest.
• Insomnia: About two nights in a row of little sleep; then a couple 2-3 nights of decent sleep and repeat.
• Deep sadness: I don’t feel it’s depression because it comes and goes.
• Aversion to strong smells, bright lights.
• Big fluctuation in body temperature, especially in hands and feet, which causes me to wear layers that I can take on and off-including socks, slip-on shoes or slippers, and even gloves.
• Hands and feet edema.
• Gripping of jaw/mouth: I’m constantly opening and stretching my mouth. I’ve even started to massage the inside of my cheeks/gums with a finger.)
• Dizziness/nausea/headache that just makes me feel unwell. This seems to hit in bouts and spurts. There was a time last fall and through spring that I couldn’t make plans or would cancel last minute on those I had made. This has become a lot less regular and I’m starting again to plan. However, mornings and nights are not my best times.
• Bladder pain: I was diagnosed with Interstitial Cystitis in 2000. This is known as one of the co-morbid issues with fibro which I didn’t learn about until my fibro diagnosis. Urgency.
• Acid reflux: I went through a Nissen Procedure 2016, but it really didn’t do much besides make my stomach hurt all the time.
• Bowel issues: Diarrhea to constipation and back again, never really “normal.” However, I think this is more due to supplements and what I eat.

Why I Now Have a Blog About Fibromyalgia

Why I decided to start a blog about my experiences: I did not know what fibromyalgia was until I was diagnosed this past November 2018. Being the teacher/learner I am, I began to research and found great resources (some really bad).

I have become pretty educated about what it is, how it affects me, the whys (as much as there can be), and how to “manage” it so that I can live my life FULLY, on my terms, even while having pain.

I feel that sharing my journey can give insight to others on their own, much like others have helped me. Also, blogging helps me to understand better how I’m feeling about things; writing helps me process. My posts serve as a bit of a timeline for me to remember where I’ve been in this process of healing and self-discovery.

In addition, I’ve always wanted to write. For me, this is good practice and if others take time to read and are helped in any way from what I’ve written, then that’s my purpose. If no one reads it, it serves as me doing developing what I love (writing) and helps me to process my journey.

How I Manage Writing with My Fibromyalgia Symptoms

How fibromyalgia affects my writing: As I’m new to taking time for myself to focus on my writing and still seem to be going through some ups and downs with fibromyalgia, I can give you what I’ve done so far.

I write when I’m inspired. When I have something that is just needed for me to get down. So, my blog has not been regular. I really struggled the last couple of weeks, so I gave myself a break from feeling like I had to. Had-to doesn’t work well for me or the fibromyalgia it seems. I did the had-to for so long.

So, I also work on giving myself care and grace when I don’t follow through with things that I feel I should be getting done. My writing time is a self-care, pleasurable activity. My thinking is the more I do it in this frame of mind, the more my brain will come to love taking the time to write-like Pavlovian’s dog.

I don’t focus on earning money. While I’d love to earn something through my writing, that isn’t a focus currently. So, the pressure is off that way, too. I’m starting a fiction novel that I’ve always said I would write (mostly just to myself; however, a few times I let my students know that’s what I intended to do once “I had the time.”)

I have my writing area set up. I love to sit looking out at the lake (I’m lucky to live on the shore of a small lake). I have a cup of hot tea or a cold drink nearby. My loved ones know to leave me alone (mostly). I play Pandora (if the words are flowing) on my favorite wordless, acoustic guitar station (Acoustic New Age or William Ackerman). I often would play this in my classroom as my students were writing, too. I do love sitting outside if the weather is cooperating.

Depending on my mood, I write in a journal (this is usually when I’m more brainstorming or writing poetry) or directly on my computer (usually, my blog is written directly on my computer). I tend not to do a lot of editing/revision as I’m anxious to get what I’ve written “off-my-plate”, so I often post right after completion. (I’m not too freaked out by others seeing my errors; however, I do reread after being published and tend to do editing and a bit of revision then.)

I’m sure as I get into writing my novel more that this will be one of the biggest changes in my writing process; deeper and deeper revision and editing. I chalk up my one and done method to my 6th-grade students’ influence on my writing (and the ADD-like symptoms I have).

I’ve always found inspiration from writers. I love to watch author interviews on YouTube. Currently, I’m taking a fiction class with Neil Gaiman online through MasterClass.com. His insight and talking about the thinking behind his writing ignites me.

To help with my fibro-brain, I do use technology a lot. I use digital notes (synced on my phone and computer) to jot down an idea I get for a blog or for my novel. So, when the ideas come, I quickly put it down otherwise it would disappear like a wisp of smoke. (I’m using Google Keep now but have used Evernote in the past.)

The Goal of Writing: Not to Impress, but to Connect at a Heart Level

Much of my teaching of writing was getting my students to see the purpose and how it could be important for each of them.

My first lesson was always for them to reflect on what they “know about, care about, and are interested in”. Through this, I would write alongside them. We would come to know each other on a much deeper level; learning from one another, connecting through our writing in ways we couldn’t through our everyday interactions.

Instead of wanting to impress as the goal, connecting with each other at a heart-level was our focus. This freed us up from that critic who lives in each of our heads that constantly says what we have to say isn’t important or good enough. Then, when we conferred with one another (they conferred my writing as well), it was more about trying to get the meaning across as clearly as possible so that others would “get us.”

So, my advice is to write like a 6th grader. Write what is important to you. Write from what you know about and care about. If we do that, then we have something to share, no matter what it is; this will intern allows us to feel connected to others-one of the hardest things to do in this life.

Writers with Fibromyalgia: Choose to Make Every Day a New Start

If you’re diagnosed with fibromyalgia: Get educated on what it is. There are good sources out there. However, make sure that you check any source you use for its reliability. There are so many sources that want to tell you what to do, what to take, how to live. Also, there are many negative voices out there.

I chose not to complain constantly about the issues that come with fibromyalgia because I find that it just sinks me deeper into symptoms. I don’t propose just ignoring and letting positivity fix your fibro; however, dwelling on the yuck doesn’t breed good outcomes.

Use what you learn with your doctors. Most don’t know much at all about fibromyalgia. I’ve brought a lot of information to my doctors that they’ve found enlightening.

I choose to make every day a new start. There are days I throw in the towel. I try to allow it (and even if it means wallowing a bit) to let it be okay for that time. However, I do work on getting up the next day with a “I’m starting afresh.”

I’ve written and will be writing more blog posts about what is helping me live my life FULLY despite having pain. For me a big one is a wonderful yoga studio that focuses on healing and being well as well as community, breathwork/meditation/EFT to help calm my brain, learning more about brain plasticity and ways doctors/scientists/everyday people are using it to help bring about positive changes in nervous system disorders/diseases.

As a final note: I just recently had a special FMa Test through EpicGenetics (fmtest.com). The development and discovery of the FM/a® test has for the first time legitimized and proven the existence of fibromyalgia as being an actual medical disease.

* * *

Katie Clark recently retired from 32-years of teaching reading and writing at the middle school level, and has decided to write. After her diagnosis with fibromyalgia caused her to take an abrupt and permanent leave from a job she thought she’d have into her 80s, she decided to record her journey in her blog painFULLYliving.com.

This term painFULLYliving came from her pain-psychologist who helped Katie to understand that she can allow fibromyalgia to define her or accept that it’s only one part of her. She chooses each day with the help of her family and friends to live life fully. Through her writing, she reflects and grows and hopes to help others along their own journey. She is well-loved by her family and has always felt that her main purpose in this life is to be fully present for them.

Find more about Katie and her writing at her website, or connect with her on Facebook and Twitter.