Is my EDS fatigue linked to alpha-gal syndrome and diet?
With a better control over AGS triggers, a columnist is less fatigued
I’ve said many times that chronic fatigue is one of the toughest parts of living with Ehlers-Danlos syndrome (EDS). It’s so tough to wake up just as exhausted as I was when I went to sleep. I’ve noticed recently, though, that my fatigue is a little bit better, which got me thinking about the timing of it.
I’ve dealt with exhaustion my entire life. Getting up in the morning has always been difficult, and I could easily hit snooze on my alarm over and over.
In high school, my mom would have to come into my room and watch me get out of bed or I would immediately fall back asleep and be late to school. While I learned how to get up on my own over the years, the feeling of exhaustion didn’t change much.
Last year, I was tested for alpha-gal syndrome (AGS), an allergy to red meat and other products made from mammals. But while eating any mammalian-derived products gave me terrible gastrointestinal symptoms, technically I didn’t have AGS because I didn’t have anaphylactic reactions. New information, however, has shown that there’s actually a subset of people who are reactive to the alpha-gal protein in the same way that I am — solely digestive problems. I’m now “official” in my diagnosis!
While some items like dairy or meat cause me severe symptoms, others cause much less intense ones. Those seem to be more removed from their original state, such as products derived from mammalian meat. That made some of the products harder for me to identify when I was having an issue.
In the last couple of months, I’ve noticed that while I’m still tired, it’s a bit easier to get up in the morning. When I calculated when this change started, I realized that it was a few weeks after I learned about a few more ingredients that can cause me mild AGS reactions. For example, I learned that vitamin D3 is usually derived from sheep lanolin, meaning that anything I ate that was fortified with D3 — such as many cereals — would mildly upset my stomach.
I suspect the low-grade inflammation was impacting my whole body. Now that (I think) I’ve learned all of the unusual things that can cause me a problem — with the help of the dietary app Fig — I haven’t had any episodes of upset stomach in quite a while. As a result, I’ve noticed my sleep and ability to wake up improving. It’s amazing that such small changes can make a noticeable difference in my day-to-day well-being.
My various diagnoses interact in so many ways. Physical pain and emotional stress are linked to my anxiety; exhaustion can lead to pain flares; and AGS and inflammation can lead to pain flares and exacerbate my EDS fatigue. Sometimes managing everything can be stressful, but when I can get it right, I definitely feel the difference.
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About the Author
Valerie Dunkle
Syndrome yes, diet no. I’ve been vegan since 2015 and have less fatigue than before that time. It may be only anecdotal, but it’s been the experience of other family members too.
Laurel Biernacki
I can’t find anyplace else to ask this. I am 69 years old and had hyper mobile EDS since I was a toddler but wasn’t diagnosed until my 20’s. I have dealt with my issues as best as I can. Now that I am older I have begun falling. In 2012 I fell and broke my left wrist. The screws and plate didn’t stay in alignment so I had a 2nd surgery on my left wrist that was acceptable but not perfect. In 2017 I fell while attempting to join in on a cleanup of the town cemetery and fell and then kept falling and could not remain standing. Also in 2017, I fell on the steps to my garage. Nothing broke but my entire face was severely bruised and lumpy for what seemed like forever. In 2019 I fell stepping backwards and broke my right wrist. In 2021 I fell in the kitchen breaking my right humerus and shoulder in a spiral fracture. 3 days ago I fell while shopping. I had my cane and my husband and I fell anyway. Just bad bruises and some scrapes. The bruises will last for months. What is going on? I want my freedom back! Are there some sort of stability device for me? I have just lost 50 pounds with another 40 or maybe 50 to go. I want to go out and play in this beautiful mountain/lakeshore , beaches, forest, and fishing as well as riding the ATV trails. Any suggestions? I live in southern Oregon on the coast and moved here in 2017 from California. Thank you for any information that you can provide.
Judy Downey
I started falling because of peripheral neuropathy so you might see if your area has treatment for that. They are not traditional medical providers but it works to keep you on your feet and moving. I had no feeling in the bottom of my feet. I use a cane at age 74 and may have to go to a stationery walker or one with wheels. My goal is to stay out of a wheel chair. Some walkers have a seat attached so you can sit if needed. I think there are 100 different reasons for peripheral neuropathy with diabetes type II being number one, but Ehlers-Danlos is in there too.