FIRST POSTED ON: DECEMBER 11, 2019 IN: WRITERS ON WELLNESS
REPRODUCED HERE and Updated ON PAINFULLYLIVING.COM 11/1/2020
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, fatigue so deep that it felt like all the iron had been taken out of my blood, and 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 many claimed similar issues of being tired, stressed, anxious, and waking up as if by the 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 had, so 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 because I was the only one not able to sit still for the hour.
Just a Part of Peri-menopause?
I reported to my OB/GYN that I had a sharp pain under my armpits (a very specific point in each). I was sent to a specialist who told me that I was fine and 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 OB/GYN when I began to experience anxiety that was interfering with my ability to handle the demands of my life.
She said that it was pretty normal to have the anxiety levels I was experiencing at my age. She diagnosed me as peri-menopause. She put me on 5 mg of Lexipro (an antidepressant), which seemed to help me, at first. Then the following start to the school year, things worsened, so I went on a higher dose of 10 mg. 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. You need to be tested for ADD.”
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 yet 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 on your mind, 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.
However, there was 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. Any how, 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 of 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, a deep, gnawing ache that began in my legs. I had accepted the pain under my arms and the inner part of my knees as something that went along with getting older, but this was a totally different pain that seemed to be gaining in strength.
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 was 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 the brain fog and utter exhaustion. I’d flop into bed every night upon getting home and spent much of my weekend in bed.
A Relief-Finally Diagnosed
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 medications like Cymbalta scared me to death.
By December 7th, I was on long-term leave. I had given in by asking for a prescription after really wanting to avoid taking Cymbalta. I started with a 20mg dose, feeling some better, albeit, not liking the side-effects.
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 as having 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 by the diagnosis because it meant that I would be eligible to get into the pain management 10-week program and in my mind, get back to living.
Finding My Way
In the beginning, I created 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: I had always been someone who loved having the lights on and now am one constantly asking for them to be turned off.
- Big fluctuation in body temperature: Especially in my 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. When in bed, I’m in and out of the covers all night.
- Hands and feet edema: I have yet to figure out the cause.
- 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.
- Stomach Pain: I went through a Nissen Procedure 2016 for acid reflux; while I don’t have as much acid reflux, my stomach is upset whenever I eat (no matter the diet) and I have continuous pain at my sternum.
- Bowel issues: Diarrhea to constipation and back again, never really normal. However, I think this is more due to supplements and what I eat.
Posts that share my current symptom management:
I decided to start a blog about my experiences after first discovering what Fibromyalgia was and then that there wasn’t information out there that seemed to fully fit my own situation.
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, I’ve fulfilled my purpose. If no one reads it, it serves in developing what I love (writing) and helps me to process my journey.
Writing and Fibromyalgia Symptoms
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. Have-to doesn’t work well for me or the Fibromyalgia it seems. I did ‘have-tos’ for so long that it feels like my body puts on the breaks when I feel that now. However, I’ve been proud of myself this past year. I have aimed to write one post a week (by Friday), and while I haven’t made it each week, I have published a total of 68 articles.
To get out of the should and must mindset, 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.) However, to be honest, that has stalled for now. Writing poetry tends to be my go-to when I need to let out emotion.
I have my writing area set up. I love to sit looking out at the lake. (I’m so fortunate 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).
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.)
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 of writing, 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.
I’ve been honored for my work this year by being recognized as a patient advocate:
- 34 Best Chronic Illness Blogs to Read in 2020
- 8 Women in Pain Health Bloggers You Should Follow
- Staying Forever Strong with Katie Clark (and interview with Alexa of #stayingforeverstrong)
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 an “I’m starting afresh”.