Fatigue Was One of the First ‘Tells’ of My Primary Progressive MS
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In poker, a tell refers to a change in an opponent’s behavior or demeanor that may offer clues about the cards they’re holding. This could be a facial movement, an unusual breathing rhythm, an unconscious shift in body position, or a strange monetary bet. Recognizing a player’s tells may help you predict their next moves.
As someone with primary progressive multiple sclerosis, my opponent in the game of life is my body. I now struggle with actions I never thought about before and abilities I always considered a given. I’m learning my new body language, including the “tells” of MS. One of my first tells, or symptoms, was fatigue.
Ready for breakfast? Let’s have scrambled eggs
Before my diagnosis in March 2021, I always made breakfast for my wife and myself while she got ready for work.
One day in December 2020, I decided to make simple scrambled eggs and toast for the two of us while my wife made the coffee. I’d cooked eggs thousands of times. They take two to three minutes, tops.
I started by taking the eggs, butter, and cheese out of the refrigerator and bringing them to the stove. We have a somewhat small kitchen, so it isn’t a long walk. I bent down, opened a cabinet, and turned the Lazy Susan to find a pan, which I then put on the stove. I took out a bowl from a cabinet above the counter and put it next to the stove. Almost ready. I retrieved the salt from the Lazy Susan and the pepper sitting on the counter, and I had all my ingredients.
As I cracked eggs into the mixing bowl next to the stove, standing became a noticeable issue for me. But I continued, pouring the scrambled eggs and cheese into the warm, buttery pan and starting to fry. Stir, watch, flip, watch, wait. I walked back to the fridge, took out the bread, and brought it back to the stove. At that point, my steps were deliberate, as I felt slow and shaky. Standing and moving around were becoming more difficult.
I put slices of bread into the toaster. Soon, it was time to plate. I walked over to the silverware drawer, which is next to the fridge, to grab two forks. By that point I was completely exhausted and had to sit down at the table. My wife brought over the finished eggs, toast, and coffee. I was wiped out!
We started to eat, but I was shocked to realize that I couldn’t lift my arm to feed myself. I tried to hold my fork, but it slipped out of my hand. I was so tired I couldn’t even keep my wife company while she ate. I had to lie down. I hobbled to bed and didn’t reemerge for eight hours. The fatigue was overwhelming.
Mention fatigue to people without multiple sclerosis and they nod politely. They feel fatigue, too. But it’s different with MS. For us, it’s not tired muscles and exhaustion after sleeping poorly or working too hard. MS fatigue is very hard to explain. I can rest all night (I can’t call it sleep, because I don’t really sleep) and still wake up completely drained and weary.
That December morning was the start of the three months I lost. During that period, all I did was rest and visit the occasional doctor. That’s all I could do as my body’s major tells became increasingly apparent.
Fatigue affected my love for cooking because I couldn’t stand for long enough to prep or cook a meal. My wife doesn’t cook, so for a time, I had to settle for yelling instructions to her from our bedroom. (Thankfully, we live in a ranch-style home, so everything is on the same floor.)
After I was diagnosed with PPMS and received my first round of Ocrevus (ocrelizumab) treatment, the fatigue became more manageable. I still have limitations, but I can function.
Now that I know my tells, how do I play my hand? So the game begins.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
tamara lillard
These sharings are a God Send. I live alone and do almost nothing outside of the home. The Covid shutdown has had a major influence on my losing ground. Just going to the store down the street leaves me exhausted. In the last few years I have gone from my normal, predictable and comfortable to loss of my job, my income, my savings, and facing a very uncertain future. Having the lives of others who are similar to me, helps. My prayers to all.
Kim Ahmed
Truth, brother! I was diagnosed with relapsing-remitting in 2003 & now realize the horrible fatigue had gone on long before that. I was lucky enough to have a job to continue to work at till retirement of last year (yay). I endured all the “ she’s just lazy, unmotivated, etc.” and anyway, the people who matter to me all understand & try to help now.
I like your style! You carry on!
Steve Flynn
Stephen, your account of enduring fatigue certainly rang true for me as well. I also have PPMS. I was diagnosed 8 years ago at Mayo Clinic. Four years ago I began receiving Ocrevus infusions. MRIs have fortunately shown no significant progression of lesions in my brain nor cervical spine. However my fatigue continues to worsen, as does my mobility. Doing the simplest of tasks leaves me drained of energy. I can no longer go grocery shopping with my wife. My right leg is most affected. I have chronic pain in my L2-L4 lumbar (lower back). It’s painful and difficult for me to stand very long or walk very far.
There are some additional treatments and medications which I have found to be beneficial:
- I am involved in physical therapy once per week at personal expense. This is being done at TIRR Memorial Hermann Outpatient Clinic. I have a personal conditioning therapist who has access to my PPMS records and works carefully with me in building/maintaining my balance and leg strength. I find this to be very beneficial.
- I have Rx for the following medications. To avoid building a tolerance/dependency I take these only when I am going to be away from home and active. They are very effective in temporary pain relief and in improving my mobility.
A. Hydrocodone-Acetaminophen 7.5-325 MG/tablet. This is very beneficial for my chronic back pain.
B. Ibuprofen 800 MG. This also helps my chronic pain and aids my mobility.
C. Modafinil (Provigil) 100 MG. This Med really improves my energy level.
I regularly take Gabapentin 300 MG Two tabs in the morning and two in the evening. If I forget to take a dose I later feel miserable and lethargic.
I take Vitamin D supplements due to deficiency common to those of us with MS. Sunlight always makes me feel better, but I have to be careful to avoid getting overheated.
Every six months I receive (10) testosterone pellets implanted into my hip. Lab tests verify my deficiency. These have noticeable improvement in my attitude, and my energy level. My wife can see immediate improvement in me.
I hope that perhaps you’ll consider some of these options and discuss them with your doctors. I am fortunate to be treated by MS Specialists at the Baylor College of Medicine here in Houston.
Here’s to our health and happiness!
Steve Flynn