My apologies if this topic has already been covered - I am new to the forum.
I am in the early stages of recovery since being diagnosed with GBS (Miller Fisher variant) at end of January this year. Thankfully I am able to walk again and am slowly getting back to normal. I have the fatigue that I'd been warned about, and also tingling in hands and feet at times. I also continue to have altered sensation in the upper part of my body. However the most uncomfortable sensation is a feeling that some of my internal organs feel "swollen". I experience this in my upper abdomen - from the area underneath my bust down to my waist. I'm not sure whether this what others describe as "bloating". I know I may have gained some weight since not being able to walk or exercise (and perhaps eating more too!!) but it seems strange that the feeling of being distended appears to be only in one area of my body. Can anyone throw any light on this please?
Rosin, i'm not a doctor, are you taking pain killers as these are known to give people a bit of constipation? I have heard coconut oil is supposed to be good for 'bloating'
I am also able to walk. How is your walking capacity?. Can you get to a gym?, that is what I am doing. I am only able to climb stairs with the aid of my stick.
I'm eating a lot of high protein foods like scrambled eggs and brown bread in the morning, which is filling for a good part of the day, but like me (easier said than done), you have to cut down on the 'crap'
This illness is very mysterious. In my opinion, we have to try and be as healthy as possible so that way we can rest knowing that we did all we could. The worst feeling for me is that “could there be something I can do that I’m not”. Obviously a doctor would best answer your question and hopefully you are seeing one. But I will say this condition presents a wide range of symptoms in different people from what I’ve learned. I wouldn’t be surprised if the condition were at least partially responsible for your alter sensations. I have some odd sensations myself. For example, my skin everywhere feels just kinda weird. Like it feels dry, but it’s not actually dry.
I am also in the early stages of recovery after being diagnosed the first of feb. I also get that feeling under the bust but not to the waist. I don't feel that it is bloating but a numbness. It is not all the time. It is not every day. I describe it as a band of some kind that is too tight.
Congratulations on your recovery. Being able to walk is very important. As to the bloating, I wonder it its not a sensation that's due to the upper gastric ileus. The parasympathetic vegan nerve controls the stomach, and small intestine which may have some blockage. The phrenic nerve that controls the diaphragm is often affected in GBS. And good working of the diaphragm is important for good digestion. Although, I'm not sure if that happened in your case with the Miller Fisher variant. I myself I have been feeling a tightness around my chest and abdomen, sometimes a sensations of weakness, but not distention. I had difficulty lying on the side or my stomach. Probably good idea is to move more and maybe the MD can do some auscultation of your stomach. Hope you feel better with that.
I also have the feeling of tightness, or bloating or whatever you want to call it, around my middle. I wasnt sure if it was from the GBS or not. Sometimes I get a charley horse type of feeling in my stomach and I have to stand up right away to make it stop, (or sit down, if I happen to be standing when it happens)
This disease sucks. Its been four years since I first got sick. I was told that most people recover completely...but when is that going to happen already? I just went back to work, finally, at a different job. Its a desk job and I was hoping I would be able to handle it. So far so good...but I am so exhausted that when I get home I go directly to sleep. All I do is work and sleep.