What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

Thirst, OMG thirst in a crash, cant drink enough to quench the awful thirst. It's not just a dry mouth its a kind of yearning for water a desperation for it. I have always had this yearning for water when ill, especially on the occasions of having food poisoning/gastroenteritis. Even when i was a child the worst thing about tonsillitis was being so thirsty but it hurting so much to swallow.

 

Interesting you mention this thirst in PEM, @JemPD and @Midnattsol , I have that too but I've always thought it must be somehow connected to my weird excessive full body swelling that comes with PEM. Because when this swelling happens, I go to the bathroom a lot less often and I'm also terribly-terribly thirsty and somehow I thought these must be connected. But maybe not.

 

I feel dehydrated during PEM but not thirsty, and I normally drink a lot of water. Does that even make sense? I don't have much of an appetite either.

I go for my yearly check-up and don't see my GP for ME/CFS related symptoms anymore. If I develop a new type symptom during my yearly check-up, I will mention it and my doctor will send me to specialist. I end up cancelling because by the time the appointment is available my 'symptom'(chest pressure) is gone.

I've been suffering with vestibular neuritis (self diagnosed) for 8 months and mentioned this to my GP during my tele consult appointment- my GP dismissed it as, 'oh yes I remember you had vertigo back in the 90's). No, this is something quite different and I am very sick. I received a call a couple of months ago and the receptionist was surprised that I was still suffering and wished me well.

 

This is interesting. I've never given it a thought before, but I realize upon reading this that I always try to stay very well-hydrated and I think that's especially true when I'm stressed or feel under threat of a PEM crash.

When I was still working I'd purchase water by the caseloads and suck them down at a rate that was unusual. I never thought about connecting any dots until this moment. Hmm.

Bill

 

I am so sorry you can't get help for this! I hope you can get some resolution soon!

I too mention very little to nothing about ME. It is not worth the negative reactions.

 

@JemPD and @Bill

I hydrate a lot. If I'm out and about for just a few hours without water, or tea, I am very thirsty when arriving home.

 

I can't scan quickly since developing ME. Also not as observant. This seems to fall under cognitive and/or neurological categories. Slowness in these processes makes everyday living that much harder.

 

Dysautonomia can be secondary to others diseases which includes ME/CFS. Triggers such as heat, snug clothing, dehydration, over exertion etc can bring on symptoms of dysautonomia. I can check off at least 10 symptoms of dysautonomia easily. Chest discomfort, balance problems, blurred vision etc

 

@Mij thanks for mentioning these. My OI is really bad the past few months. Just this one cluster of symptoms is terrible, let alone all the others. Very, very mild activity brings on my OI. It always has, but it's more problematic lately.

As an aside re a symptom likely unrelated to ME: I saw a doctor for a visible skin problem. It was clearly a physical condition, but I still got the eye rolling treatment. We had not discussed ME/CFS at all, and yet I was treated dismissively. How pwME can get unrelated health problems treated, and come out unscathed is certainly a concern.

 

(a) Yes - as I never get tired of explaining that I don't work full time and the follow up, what do you do all day!?!? I know this is also the case for me.

(b) I also get hoarse, although mostly when I talk for more than 15 or so minutes. I don't know if this is me/cfs or not.

I developed non-allerigc rhinits with cfs, but that is in my medical records as a seperate entity.

I also have field of vision issues - static against blue or white backgrounds (sometimes very badly, other times not at all), difficulty focusing, poor night vision.

 

I think it is odd that I've never thought about a link given the amount of hydrating I do. I can't say that I'm driven by a feeling of extreme thirst, but I drink a lot of water in a day. I feel the need even if "thirst" isn't what motivates me directly. Perhaps i drink so frequently and regularly that I don't have a chance to get thirsty?

I've never thought about this, until now.

Bill

 

Chronic sore throat and thirst are two of my constant physical symptoms, but worse at times. Not sure if in a crash its worse for me. I have lots of tricks to deal with it, including constant drinking of water or other simple beverages. I find herbal ginger tea sometimes helpful. So is icy cold carbonated water. Lately I have been using a peppermint alcohol based mouthwash a bit, but need to be careful not to swallow any. When I order home delivered food the running joke for those in the know is its mainly for ice cold drinks, not the food. Anything to help my throat that is not sugar laced cough lozenges.

 

Having a sliver of raw ginger root to (not to suck on exactly, but in one's mouth) is a polarizing option, but for me nothing has proven better for relieving a sore/irritated throat. It's not for everyone, but since you like ginger tea perhaps it is an option to try?

Bill

 

I used to eat ginger a lot, but had side effects as I was eating too much. Doh. I even had friends complain they could smell ginger just from entering any room I was in. Now what I did not try is sucking on sliced ginger root. I will have to try it. Thank you.

 

I've had the best luck trying not to actively "suck" or bite on the sliver of ginger (which is tempting for me as I like ginger), but to sort of let it float on one's tongue. That way a sliver lasts for hours and slowly bathes the throat. I believe ginger has analgesic and antiseptic qualities, but don't quote me on that.

Couldn't hurt to try it.

Bill

 

Another occurs to me though it's not a symptom. I have read many ppl with me/cfs say they have a marginal positive ana w/ speckled pattern. I have this sometimes and sometimes in normal. I don't know if that's significant or not.

 

I have it too, but I'm female and my doctor said it's much more common in women. Apparently, some people with it go on to develop autoimmune illnesses like lupus, but most don't. He said it might turn out to be useful, but they'd probably need to find a second clue that goes along with it before they could be sure it indicated a risk.

 

I always carry a small bottle of juice and a bar of sugar-free chocolate when I go out, to prevent excessive thirst, hunger or feeling sick.

 

Good idea! I do forget these helpful items.