When an EDS pain flare-up seems to block my hunger signals
Mindfulness and planning are crucial during such times
Some aspects of Ehlers-Danlos syndrome (EDS) are just weird. There are the expected symptoms — tight and sore muscles, chronic fatigue, frequent injuries, bruising — but there are also effects that, while related, don’t seem to make much sense. For me, one of those is the way tight muscles or pain flare-ups can cause me to have no appetite.
Now, that doesn’t mean I’m not hungry; it’s just that I don’t realize I am. My stomach won’t growl, for example, so I have to simply remember to eat. I don’t understand why, but this issue only comes up during a pain flare. I’ll start to feel hungry again after having bodywork done, which loosens up my muscles. Sometimes my stomach will even start to growl while I’m on the massage table!
No matter how many times it happens, I still find it strange.
The only possible explanation I can come up with is that my body blocks out hunger because it’s too overwhelmed with pain signals. Similarly, when I’m having a pain flare, only one spot may feel exceptionally painful — but once that area has calmed down, I realize I’m also sore in other places. These spots just weren’t yelling as loudly, so they got drowned out by the most painful area.
I think something similar happens with hunger. Once my pain calms down, I can feel hungry again.
As a result, I’ll sometimes feel weak or shaky from not having eaten enough, all because my body isn’t reminding me to do so.
How I respond
First I have to recognize that I’m not feeling hunger, and then I must plan my meals and snacks to ensure I’m still eating enough throughout the day. When I’m busy and don’t feel hunger pangs, I might realize at 2 p.m. that I haven’t eaten lunch!
While I’m always careful about what I eat, I’m especially mindful about eating balanced meals with sufficient protein during these times. Between my EDS-related food sensitivities and alpha-gal syndrome, my meals take some planning, especially when I’m not at home. But eating well makes me feel much better.
I’ll probably never understand why this lack of hunger happens, but it’s a big part of my pain flare experience. I can’t do anything to prevent it, but at least I’ve found ways to minimize its impact.
Note: Ehlers-Danlos News 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 another 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 Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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