Difficulty swallowing as a symptom of CFS

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Does anyone else have trouble swallowing when very fatigued/having a crash? This has been one of my symptoms right from the start but any time I mention it to anyone they tell me it's just anxiety. I will be trying to eat and when I go to swallow, it feels like I have limited control over my throat muscles (kinda like when you try to use a muscle you've never moved before, like wiggling your ears). I have to make a big effort to actually swallow and it puts me off eating because it's so hard. It only happens when I'm really tired or having a bad dysautonomia flare-up.

I also get a weird sensation like I can't feel my body anymore - very hard to describe, because it's not actually numbness (e.g. if I pinch myself I can feel it), but more of a subtle sense of not really knowing where the boundaries of my body are anymore. Before I got CFS, I think I would get this as I was falling asleep and it just felt normal then, I guess like my senses were shutting down in preparation for sleep (it's also a bit like the feeling when you're about to pass out). But now that I get it randomly during my waking hours, it's really unsettling. I often get it in my face, sometimes in very particular spots (which can feel like there's a patch of my skin that doesn't belong to me), but it can also be an all-over-body feeling.

I mention this second weird sensation because I've noticed the difficulty swallowing often goes along with this "numbness".

1 like, 4 replies

4 Replies

  • Edited

    hi grailmoth

    i do experience difficulty to swallow as well, during th

    e worst crashes

    also difficulty to talk and breath.

    indeed the throat muscles become very week

    see yiu

    simon

  • Edited

    Hi

    I have experienced the same issue with difficulties in swallowing during flare ups, I'm not sure if its connected, but a lot of people get swollen lymph nodes in their throat with m.e, which I had and possibly that is the reason for the swelling in that area. Do you get swollen lymph nodes, in your neck, just below your ears?

    The weird sensation where you can't feel your body - not sure if its the same as you but, I used to feel in the mornings that I was drugged and felt that I was sort of floating (sounds really weird) but don't know how else to explain, I felt my body didn't work. If that sounds similar to your sensation, I'm pretty sure that when I experienced it, it was due to inflammation in the body, toxin build up in the blood, joints and other places from my diet which consisted of a lot of healthy food but sugar/alcohol/dairy/bread seemed to have been the big contributors of inflammation to me. I know this because of the many times going back and forth eating sugar, alcohol etc then not eating them again and i'd get the flare ups when the sugars crept back into my diet.

    I hope this helps some way.

    Thanks

  • Edited

    I have trouble swallowing also. It feels like a lump is in my throat after eating. I do have a history of frequent vomiting (eating disorder) so that may be part of it. But I do feel it happens more frequently when I am fatigued. I think anxiety does contribute to it also, as it tends to go away on its own unless I'm anxious about it.

    I don't have the numbness problem with it though. Sorry to hear. It sounds very unsettling.

  • Edited

    Hi grailmoth,

    I had a friend with cfs/me who has the swallowing issue you speak of as one of their more constant feelings. Acid reflux and excess gas, shaking were also common where as my more constants are walking issues, cognitive impairment etc they had these too but you can visibly see I can't walk properly at times. anyways, I wanted to just say that it does seem an issue. I've had it when at my worst but it's not constant if that makes sense?

    re not feeling parts of your body, yes, I think I get this. usually when drifting off but, I often feel like my feet are "missing" when laid down. I also get one freezing foot. All tests say there's nothing physical about these symptoms btw. There's a term for these weird sensations my physio told me, that I can't remember right now. I also feel like I have knee length socks on when I know I don't! is the word parathesia? I may well be wrong!

    How I see the condition is that we're on night shift at the factory. The place is running at a quarter of the speed, output, function and so it cuts down the lights, the heating, turns on the security system and has a couple of guards checking on the system every so often. As you can imagine, they can't be everywhere and so bits get missed hence why you feel the missing sensations? Re the throat, the body is on auto pilot and brings in flight/fight or freeze. when it does this, the body shuts off certain things it doesn't need like digestion. It's an evolutionary development to save you in an emergency basically. Digestion is shut off so that you could run away or fight if you needed to as the body sees eating as pointless at this time. So, it's not really anxiety that sets it off but, the cfs/me autopilot system that does. It's protecting you. Unfortunately, it doesn't get that there's no alarms or surprises happening. just you've done too much and need to cut back. just like all the other symptoms we get.

    Hope that helps

    Beverley

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