It’s been over a month since I first developed Covid-like symptoms and began to spend my days in bed. Like, my bed became my little nest with the detritus of a prolonged illness littering the floor and shelves around it. Outside the world moved through the end of summer; my tree lost all of its leaves, and the garden moved into dormancy. The birds disappeared. The squirrels have remained on the crazy side, but the crickets are now silent. The cats are chasing the last few grasshoppers of summer, but they are almost too cold to hop anymore.
Mateo has used my down time well, destroying his cat tree, removing push pins from the wall hangings, and just being an agent of mayhem in general. Hannah is not impressed.
While the symptoms of “whatever the heck that Covid wannabe virus was” are mostly gone, I’m still struggling big time. Everything, and I do mean everything, hurts. Tendons that I didn’t even know I had are now too painful to touch. Random shooting pain and muscle cramps have become routine. Did I mention the chest pain? I can’t concentrate enough to read; brain fog is driving the bus these days. I can’t knit for more than a few rows at a time as my arms get too heavy to hold up. I am kind of weak and shaky. I’m starting to stare down the depression monster for the first time in years. Did I mention that the fatigue is unreal? Ugh.
So, there hasn’t been much blogging. There has been, however, some medical testing and trips to doctor offices going on.
Yesterday I finally saw my rheumatologist. “This is just awful,” I told her. “This is fibromyalgia!” she replied. In her opinion, what I’m experiencing is a pretty severe episode of fibromyalgia. I’d already been diagnosed a few years ago, but I’ve never experienced symptoms as bad as this. Sigh. Remember the 15% rule in scleroderma? It says that about 15% of patients with systemic sclerosis (the type of scleroderma that I have) will also have a second autoimmune disease called Sjogren’s. Check, got that. Since Sjogren’s symptoms can look like fibromyalgia I always took that diagnosis with a grain of salt. Now it’s pretty clear that it is a separate condition, and my fibromyalgia is running wild. Like a squirrel. Or Mateo.
Feeling particularly unlucky I drove home thinking about writing an autobiography called Outlier: My life as a singular data point. Seriously, who in their right mind would ever want to be so far off the bell curve? Then the BioGeek emerged, and I thought about Covid long-haulers. I have met some people who have been diagnosed with Long Covid, and I did think at the time that what they were dealing with was an awful lot like one of my flares. Like, an awful lot. Yep. According to this article about a third of Covid long-haulers have “FibroCovid”, a condition that pretty much looks like fibromyalgia. Fabulous. This article suggests that Long Covid is just another name for fibromyalgia. Another article explored the benefits of applying lessons from fibromyalgia research to Long Covid. Thanks, nasty virus that acted like Covid but refused to test positive. Thanks for acting like a nightmare houseguest who leaves a huge mess behind…
This is crazy, right? Covid shares similarities with systemic sclerosis, and long Covid shares similarities with fibromyalgia. The BioGeek in me is interested in all of this, but let’s hope this doesn’t drag on for months.
My rheumatologist has started me on a course of narcotic painkillers as that sometimes pops people out of fibromyalgia flares. I’m taking magnesium as that can also help. My rheumatologist has some more tricks up her sleeve if this doesn’t do it, but I’m relieved to finally have a name for what is happening.
Time to kick this thing to the curb (like a zebra!) so I can get back to knitting!!
Yarn, Books & Roses 
I wish the first word that came into my mind had not been “fascinating !”, but it was. The way you research everything that’s thrown at you by an uncaring god of something-or-other, Marilyn, is endlessly impressive, but also endlessly interesting.
“One day when the tonguin’ is done” you could edit all these posts into a most marvellous resource.
But in fact I am very sorry for your pain. I always am.
Thank you. I am incredibly lucky in my doctors, and it helps to take every opportunity to learn something.
Oh, yuck, that sounds like a whole lot of very not fun. Lots of research on your part, but I don’t care what you call it. Just hoping your doctor finds a solution for you.
Seriously, I am so over it at this point. I have to say, it is such a relief to have a break from the pain for a few days.
I read ages ago on your Goodreads profile that you thought youd like to write a book one day. Maybe the time has come? A novel, a biography, a children’s book starring Mateo and Hannah. Xx
Maybe The BioGeek Memoirs?
Thanks for taking the time to share your trials with us. I was concerned when I failed to find a new blog of yours in my email for such a long time. I shared your feeling of exhaustion, which I had for about a year after coming down with what was most likely covid in early 2020. That virus was the gift that kept on giving, new symptoms every three or four months, until they finally stopped some eight months later; however, I was left with a neuro residual from “covid champagne leg.” I wonder if you’ve thought about writing a covid case book filled with anecdotal pieces from other covid survivors. You’re such a good writer that I can imagine it would resonate with a lot of readers. Ah, well. An author has to come up with her own material, so I’ll stop making suggestions. 🙂 I can’t even imagine what you must be going through, or how you have the strength to carry on without folding. You are truly a super survivor. Prayers for your doctors and you.
Wow, you just made my day with *you’re such a good writer*! Truth be told, one of the best parts of being a science major in college was… no term papers. Ironically, I learned to write well keeping a science notebook in a research lab. Your thoughts about stories from the covid front is kind of appealing. I feel like there has been so much misinformation and disparagement of people who wear masks or get vaccines that it would be nice to get their voices out there. Someone recently told me that covid was a hoax; I responded that a million Americans are dead…
I just love my docs. Here’s hoping that the narcotics work to stop the flare. She explained that fibromyalgia is actually a misfunction of nerves (all of a sudden your lingering neurological symptoms become really interesting, but I’m so sorry that you have them), and by dialing down nerve activity for a few days it may calm things down. The next step may be antidepressants as they sometimes help.
What interesting comments. I had to chuckle when I read about the best part of your being a science major was not having to write term papers. At least you weren’t in a school that demanded that you come up with a research project, and at its conclusion, you were required to write a paper that you had to submit to a scholarly journal in your field, plus an abstract. I agree with Born. It’s too bad that you had to learn so much about your situation first hand. I’m so glad that the painkillers are lifting your mood. As for Hannah, I’m happy she’s keeping mischievous Mateo entertained and maybe out of trouble. Is it too cold for him to cool his paws on the catio? After all, he does have a fur coat. If you decide to do so, I’m looking forward to reading the book you write on some aspect of your medical journey. I only mentioned my experience to illustrate the wide spectrum of symptoms that this doggone virus might be causing. As for the neuro part, I’ve read that it’s cropped up in quite a few cases. Nobody knows for sure if Guillain-Barre is the culprit causing it, although that’s one hypothesis. Bottom line, you’re doing what’s working for you, as am I. Apologies if this is undecipherable or sounds stilted. It’s late, I’m tired, and my brain’s battery is running out of power. May you keep feeling alert, undepressed, and pain-free.
Now I’m really curious about where you went to school! I got my BA at UCSD where you had to attain proficiency in a foreign language and complete your minor in a noncontiguous discipline. I’m proficient in German (Ha!) and managed to complete a political science minor along with my biology degree. I can’t even manage doing a research project as an undergraduate… yowzers! Mateo will play out on the catio all day, but he completely panics if I shut the door into the house. Since it is pretty cold outside I can’t leave him out there too long as the furnace will run and the energy bill has become astounding over the last year.
These viruses are really something. I knew about the neuro issues, but there are also cardiac repercussions from the virus. I’m going for an echocardiogram next week to check the fluid around my heart (I have a pericardial effusion) as I’ve been having some significant chest pain.
Wow! Small world. You got your BA at UCSD. At San Diego State U., an old high school friend from a faraway state in another century is now an emeritus chairman of the CS department. I’m impressed that you were required to become proficient in a language other than English. German is hard, and there’s little opportunity to speak it in the U.S., unless you have relatives that expect it in their company. Not the same with Spanish, which I use to teach kindergarteners and first graders reading, writing, and math. As for science, I’m intensely interested but don’t have a degree in it, only a BA in ed and a minor in Spanish. The experience I wrote about earlier is a vicarious one. My granddaughter is in a low-acceptance uni, where she’s involved in her own research, as are other students in theirs. Poor Mateo. I never figured him for separation anxiety or fear of loss of control, if that’s why he doesn’t like the door to the catio closed. As for your upcoming echo, I hope that your doctors find that your pericardial effusion can be controlled by noninvasive means. Here’s hoping for smoother sailing for you and continued pain reduction after the prescrip narcotics are withdrawn.
It’s a small world, huh. 🙂 I have absolutely lost most of my German. I can mostly read it okay, but if someone is talking… help!
Mateo is endlessly amusing. He is also terrified of the big red “N” that appears when you launch Netflix. He cowers when I turn on the television, and then if it is the dreaded N he streaks for the door, belly on the ground. He has so much personality lately I’m thinking that he needs another post.
How funny about the Netflix N. Maybe if you tuned in to the animated Netflix production of Leo, starring a feisty green lizard, he might take notice.
Happy Thanksgiving!
How funny about the Netflix N. Maybe if you tuned in to the animated Netflix production of Leo, starring a feisty green lizard, he might take notice.
Happy Thanksgiving!
Here’s hoping that the pain levels have continued to be more manageable now that you’re off the narcotics.
Thinking of you and wishing you better days.
So well done to be coming through this one at last
Nope, not through it yet. Here’s hoping that the painkillers pop me out of this before I move into full long-hauler status. 😦
I do wish you well, Marilyn
I hope that the interesting part of the research helps keep the depression at bay, though I also (and more fervently!) hope for a quick recovery from this mess so that you can get back to knitting and cleaning up after Mateo’s mayhem. At least Hannah appears to be a helpful, calming kitty.
You know, this is the second day of the painkillers, and I have to say that I feel more alert and the depression has eased off. Evidently, current thinking of fibromyalgia is that it is due to overactive nerve function, hence the course of painkillers. The sad part is, it has to be narcotics, as the over-the-counter stuff doesn’t help, and they actually discourage you from using any of them. It really does help to have some understanding of why things are happening. Hannah has been playing more with Mateo, so he is calming down. I need to keep his claws cut so he can’t slash at her heels. He is kind of a bum that way!
Additional understanding is a very good thing! I’m glad you’re feeling more yourself so far.
I’m glad to read that you’ve found some answers and some pain meds that help. What a slog though. Thank you for sharing all you’ve learned. I’m just sorry that it had to be first hand knowledge.
Hope you are feeling better soon!
I’m already much more clear headed, and the pain levels are down. I end the course of narcotics tomorrow and here’s hoping that I remain better.
So sorry that you are having such severe effects of the COVID or COVID-like illness! I’m glad that your doctors are working with you and coming up with likely treatments. Feel better soon!
Thanks!
super sorry! I know what LC on top of other major illnesses is like, not one bit of fun. I’m happy to hear your rheumatologist is actively trying to help, hopefully something will work!