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Crashing down: major IBS issues, brain-fog, nightsweats and... COLD!

Antares in NYC

Senior Member
Messages
582
Location
USA
So for the last week or so I have been feeling like a major crash is happening, and every day has been a bit worse. I'm bracing myself.

In addition to the massive increase in crushing fatigue and brain-fog, I am experiencing a few issues alongside, which sets it apart from other crashes:
  • Massive IBS issues: lots of cramping, diarrhea, lots of mucus in the stool and some foamy, bubbly specs in it (could it be fat malabsorption?)

  • Feeling cold all the time. Granted, it has been a long a particularly cold winter in NYC, but even so, I feel extremely cold all the time, no matter how many layers I wear or if I crank up the heat. Cold, cold, cold all the time.

  • Massive nightsweats: for a week now I have been waking up drenched in sweat, mostly around the chest area. I often wake up in the middle of the night drenched and feeling really cold, and have to change shirts, then put a towel on the soaking wet bed. It's disgusting and terrible.
Are these common issues to other ME/CFS sufferers? Am I looking at something else?
I'm a bit worried and frankly scared too. Any advice would be appreciated.

PS: I have another colonoscopy scheduled for next week. This would be number 3 in 2 years. Sigh...
 

worldbackwards

Senior Member
Messages
2,051
  • Feeling cold all the time. Granted, it has been a long a particularly cold winter in NYC, but even so, I feel extremely cold all the time, no matter how many layers I wear or if I crank up the heat. Cold, cold, cold all the time.
  • Massive nightsweats: for a week now I have been waking up drenched in sweat, mostly around the chest area. I often wake up in the middle of the night drenched and feeling really cold, and have to change shirts, then put a towel on the soaking wet bed. It's disgusting and terrible.
Temperature - yes, I have all sorts of odd temperature stuff - massive flushes, both night and day and esp. after meals, uncontrollable biting cold that CAN NOT be dealt with - this is reasonably standard, to some degree.

Advice - Heat - If you're cold when you go to bed, it might be an idea not to have a direct heat source in the room, better to have a heater outside or radiators on elsewhere in the house/flat - better a warm wider environment than something right on top of you if at all possible. I have found (you may not) that temperature problems build over the hours, like a cup that overflows - heat builds up until it can't be dealt with and overspills.

Cold - Heating may be needed, but blankets/sleeves/fleeces are more effective in general. Lots of layers to trap heat is good. If it's truly intractable, it's sometimes a good idea to stop trying at a certain point, rather than piling up increasing amounts of stuff that aren't helping anyway.

IBS - I've known it though I keep it under control largely, it's not uncommon. Those things sound a bit specialist for me though.

To be honest, if you get ME and hang around long enough you'll get pretty much everything and it'll probably go away and come back round again - I barely even register it anymore. I think I'd be wanting to get that bowel stuff checked out though, but it sounds like you're on top of that.
 
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MikeJackmin

Senior Member
Messages
132
I have had night sweats for about a year - turns out my testosterone levels are low. I'm seeing the doc tomorrow but I understand it's a pretty straightforward thing to fix.

I take care to remind myself that we get 'normal' diseases just like everybody else. One of the great hazards we face is that we have every reason to assume that every new symptom is just the same old stuff acting up again.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Last night I woke up again at 5am completely drenched in sweat, like I just came out of the shower, feeling extremely cold, shivering, chills.

For the record, the temperature in the apartment was 75F, yet I was shivering and sweating quite profusely. Feverish feeling, but my temperature, as usual, slightly below normal.

I changed shirts, sheets, placed a towel on the bed and got back in bed, but couldn't fall sleep again. Really unpleasant feeling all around.
 

Crux

Senior Member
Messages
1,441
Location
USA
This really seems like an infection to me.
I would hope the docs will check blood and stool.

Sometimes standard tests don't show a normal reaction to infections in people, like us.
I never get fevers, and WBC have only gone up a little one time. ( I had an adrenal crisis.)

Nightsweats can also be caused by infections. ( could be viral or bacterial )

I hope the docs can find the cause for you. I hope very much!
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Quick question for those who know about these things:
How common are thyroid and adrenal issues in ME/CFS?

I'm being tested for both in the coming days, as they suspect a number of my recent symptoms could be caused by thyroid and/or adrenal issues. In particular the extreme cold, odd sweating, severe increase in memory issues, and now extremely dry skin too (I didn't think this was related to anything, but it got pretty bad).

Would like to know if anyone else experienced these types of issues after many years dealing with ME/CFS. Any advice would be appreciated. Thanks.
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
I had the feeling cold + heavy night sweats from december (but without worsening in IBS). My doc put me on Riamet -an antimalarial- for Babesiosis. The symptoms are completely gone with treatment in January, and so far havn't returned.
Babesia is a possible co-infection, especially if you have been already diagnosed with Lyme.
 

cmt12

Senior Member
Messages
166
Quick question for those who know about these things:
How common are thyroid and adrenal issues in ME/CFS?

I'm being tested for both in the coming days, as they suspect a number of my recent symptoms could be caused by thyroid and/or adrenal issues. In particular the extreme cold, odd sweating, severe increase in memory issues, and now extremely dry skin too (I didn't think this was related to anything, but it got pretty bad).

Would like to know if anyone else experienced these types of issues after many years dealing with ME/CFS. Any advice would be appreciated. Thanks.
Thyroid and adrenal issues are common. Be careful of doctors that, instead of saying 'I don't know', are inclined to chase symptoms (ie: saying symptoms like thyroid issues are the cause of other symptoms).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think thyroid and adrenal issues aren't at all uncommon with us. I have the adrenal issues.

Your symptoms are all ones I've I had with ME (I used to have to change my sheets and pjs sometimes twice a night... except my IBS is of the other kind.

I tend to get hot and cold flushes if I'm crashing badly. I used to be feeling freezing cold all the time (and showed worst circulation issues when I had that too..eg Raynauds and I got chillbanes), nowdays my body prefers to go back into the fevers instead.
 

worldbackwards

Senior Member
Messages
2,051
There's a whole thread about thyroid stuff here from last year:
http://forums.phoenixrising.me/inde...r-100-randomly-sampled-pr-contributors.32231/
I've had dry skin problems, but from the start rather than something that kicked up later on. I still get it quite bad on my feet. Only thing I can say (stating the obvious) is that it gets worse if you can't go in the bath very often, but that doesn't make it go away.

One thing about thyroid stuff I noticed was that it came up when I was overactive and managing symptoms poorly, but went away when I sorted this out. There was mention of it similarly resolving itself on that thread from other patients as well, I think.
 
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Crux

Senior Member
Messages
1,441
Location
USA
Thyroid and adrenal issues seem to be fairly common in ME/CFS, but with the adrenals, peoples' measures seem to run the gamut, high-low, low morning-high evening, flat-lined, etc. With thyroid, it varies too; many are taking some form of thyroid med.

I've taken thyroid meds in the past, and been helped, but then developed hyper symptoms, along with hypo, and had to stop. ( At one time, I had low T3, but low TSH. this can happen with pituitary failure.)

I've read that some thyroid problems can be caused by gut infections, liver dysfunction too.

I have what seems to be partial pituitary failure, low ACTH, no cortisol production. My symptoms were : intractable vomiting, very low BP, diarrhea, weakness, etc.

I still think this originated in the gut, because, treating my gut has lessened all the symptoms, except my skin is still dry and flaky. ( I'd rather that than the others.)

Have the Docs not been able to find an infection?