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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Pashta
Yep, you are not alone. When I am in a lot of pain I do not get hungry, either. I also can barely function in other aspects of life, like showering, cleaning, etc. I have had to cancel appointments due to pain. I can't talk on the phone or even play video games sometimes!
I don't know if it's just the hEDS that causes this or if it's the Adhesive Arachnoiditis I've been told I have, but it sucks. 24/7 pain, but it does get worse and better at times.
Val
Very interesting! I feel opposite, like my satiety signals are delayed, so I eat too much and realize that too late. I eat really fast too, always have, I think because of TMJ. So I consciously need to slow myself down.
I have figured out a few things with eating that I think are related to dysautonomia:
- I have to eat before showering so I don't get dizzy in the shower
- But not too close to showering or my stomach gets crampy in the shower
- Eating on a regular schedule and more than 3x a day to prevent large gaps keeps the dysautonomia from sneaking up on me out in the wild (the world, vs my safe "cave" of home)
These aren't blood sugar related because those values are normal, and I have noticed the above effects since I was very young, like teenager young.
Sharon
I was diagnosed with hyper mobile EDS about a year ago. My joints tent to sublux mostly. Thumbs, hands, elbows, wrists, ankles, feet, hips and so on. My rheumatologist put me on Cylexa for a week which caused my autonomic nervous system to go haywire and now I've got an issue with my blood pressure and need meds every day for it even though I stopped the Cylexa.
Ever since then I've barely felt hungry. I wish it was as simple as that. I actually feel nauseous when I eat or even think about eating sometimes. My sleep cycle is completely out of whack. Either 12 hours or 2 hours. It's been months now and I feel like my damn sanity is slipping. If anyone has ever had or heard about this please let me know. I could really use the help.
Toria
I have hEDS as well. So far (before my spinal injury) Meloxicam and Felxiril worked best for me to help with flare ups. I now take Methocarbomal in place of Flexiril. I don’t know if you have tried these, but I am an extreme case and they give me relief.
Janine White
Unfortunately,
being our own doctor,
taking care of ourselves,
learning, researching &
trying to understand-manage
ourselves is a, Full Time job!
EDS, is just a passenger
& I refuse-will not allow
it to become my driver!!
I’m kicking EDS to the curb❣️
Anyone else in? 😇❤️🩹
karen jamieson
I too suffer with issues where I “forget” to eat I just don’t get the signals,I seem to go through phases like this then it flips and remembers I need food,but when I go to eat it’s as if after one or two mouthfuls I can’t eat anymore,I truly hate the relationship I have with food,I was diagnosed bulemic and anorexic when I was younger but I thinks it is all related to my EDS,and as much as I try to eat healthy it’s a real struggle.
For some reason the signals don’t always work correctly.
Now I am just dumped on the shelf nobody takes any notice of me,EDS seems to be an excuse to try and ignore you!