Friend Lori Shaffer and I have an Instagram account–2girlsnotrunning. Lori runs the account and I try to remember to send her my workout photos. I stink at the photo part. Lori has an amazing story which she shares in bits and pieces on the account. You should check it out.
Here’s the sad news. I haven’t shared my story. Lori’s story is one of weight loss, muscle building, healthy eating and determination. Mine is equal in determination, however different in origin. Like most women, I have battled those pesky ten pounds here and there. I have always loved to work out. Weird. I know. I haven’t always been able to. There have been seasons in my life when I have been almost bedridden. Other times, I have been able to get up, do some homeschooling, cooking and light housework only to crash for four or five hours. Sounds like I just got really tired, right? Motherhood and homeschooling are exhausting. There’s more to the story.
As I child, I struggled with failure to thrive, topping the scales at fifty-five pounds in the sixth grade. As a teen, I couldn’t stay up late like other teens. I went to bed by eight o’clock. If by chance, I did stay up late, I crashed the next day. I had migraines daily. Mom took me to multiple doctors with no answers. Fast forward to marriage and motherhood. I often felt as if I were walking through quicksand. I assumed everyone else did too.
After decades of struggling, I finally got a diagnosis- CFS (Chronic Fatigue Syndrome),also called, in some circles, myalgic encephalomyelitis, because of its effects on the muscles and brain. I don’t like the name and there is talk of changing it. The New Yorker states:
“As the authors put it, “The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” They suggested that it be given a new name: systemic exertion intolerance disease.”
I hate the connotation associated with the words chronic fatigue. When I have shared the name of the immune system disorder I suffer from, I often hear the reply, “well, I’m tired too.”
Instead of trying to defend myself or the name, I’m going to explain in plain English what the disease does. It’s multisystem, meaning it attacks many systems of the body at once. It is viral in nature. I have had as many as three viruses attacking my body at the same time. Instead of the fighter cells waging war on the viruses, they get confused and attack my organs and endocrine system. Fighter cells are confused because the immune system ‘wallpapers over the viruses” so everything looks normal. The virus alarm has been sounded so the fighter cells fight, just the wrong thing. ME.
- The organs are under attack- diminished cardiovascular function, even after exercise; slowed information processing in the brain
- Cells don’t recycle energy quickly like non CFSers do. Cells have low oxygen levels. Post exertion crashes are common. This explains why CFSers can have a great day, push too hard and then spend a couple days in bed.
- Endocrine system is under attack- Adrenals, thyroid, hormones (totally out of whack). Hypothyroidism is common as well as swings in cortisol levels. Too much cortisol followed by too little.
- With a compromised immune system, other syndromes or diseases join- Celiac, Fibromyalgia, diabetes, cancer
- Because cortisol levels are out of whack, there may be extreme anxiety
- Psychological symptoms may include- agoraphobia, panic attacks and extreme fears ( and more). When these are diagnosed separately from CFS, there is a tendency to focus on them alone. They are side effects. Someone who passed out at the mall last week due to CFS may suddenly not want to go out.
None of this sounds super scientific. I don’t mean for it to be. CFS does affect the whole body. Like I said, it is a multisystem disease. The reason it took me so long to get a diagnosis (like many others) is most doctors only look at one area of the body at a time. So, I went from doctor to doctor getting one part looked at and finding the information inconclusive. The body must be looked at as a whole system in order to treat CFS. EVERYTHING must be looked at simultaneously.
I’ll finish up today with an excerpt from the CFIDS Association of America:
“Additional symptoms are frequently reported by PWC’s such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescriptions changes): psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel; low-grade fever or low body temperature; numbness, tingling and /or burning sensations in the face or extremities; dryness of mouth and eyes, menstrual problems including PMS and endeometriosos; chest pains; rashes; ringing in the ears; allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light handedness; feeling in a fog; fainting; muscle twitching; and seizures.”
I know this is a lot of information. I could have started out with “I was unhealthy and I got better.” No. I couldn’t, because that’s not true. There is more to my story and I will share next week. I needed to lay down a foundation and if you are a CFSer, know you are not alone. I’m right here beside you. I wish we could get coffee and we could share our stories, our valleys, our mountaintops and most of all our hope. If you are a CFSer or know one, please share.
* I am not a doctor and the info I am sharing does not replace seeing one. If you see yourself in the list of theses symptoms, find a doctor who treats CFS!
3 thoughts on “My CFS Journey (abridged)”
But you have fought and are fighting with such incredible courage!! ________________________________
I will keep fighting!