Search results

Thank you so much, @DMissa , to you and your colleagues for doing this work and for writing it up so carefully. I really appreciated your clear posts summarising the study. My brain is not working at the moment, so I cannot read the paper (and have learned not to read pre-prints because the...

There's a BBC article today that is relevant to this discussion. It has also been mentioned on this thread. In short, there's a group of patients in Canada who were diagnosed with a mystery neurological illness by a doctor called Marrero, who suspected an environmental cause. Authorities now...

Sympathy, @Holinger, hope you're doing OK. I went through a few heatwaves of 40+ degrees celsius abroad without aircon in the distant past and it was really hard, even without ME/CFS. Very much hope the heat eases for you soon.

Since I can't handle waistbands, I'm pretty sure abdominal compression would create gastrointestinal problems for me that would make it unusable, even if it were effective. Had to use a back brace recently, just for 5-10 mins at a time, and it caused a lot of pain at the front and GI issues...

Have a look at this thread on similar in long covid. There are some nice graphs. Edit: Oh I see now that @EndME had already linked to it, sorry!

Such a useful thread, @hotblack. I don't have much to offer as I am usually able to have a modified shower, so I have not figured out alternatives like you have. But I pay attention to threads like this because I'm close to needing it. I really liked your recommendation of saline wipes and...

:emoji_laughing:

Sounds horrible. I hope she will help, or direct you to someone who can, especially since it's recurring and appearing with other symptoms. Fingers crossed.

I stack my ailments. I wait till I've got 3 or 4 and then I email. And I do all the things the pharmacist/NHS-type sites would recommend first. Then I have a chance of getting help with 1 or 2! Does a dermatologist need to get involved in that circle of fun you've got going on?!

I also get recurrent nasal vestibulitis that comes with a streaming nose and can make me feel really unwell. It lasts for ages. Got a bad bout last year that went on for 6 weeks. Have it now but it's mild and it's easing off. I did not have this before ME/CFS, but I don't know if it has...

I’ve always had a runny nose, always needed tissues at hand, always worse first thing, in cold weather, when walking around, at meals. A certain amount of that is entirely normal, I think. But it’s a lot worse if the place isn’t hoovered and dusted. Hopefully your GP or the pharmacist can...

There are some relevant posts on another thread where we talked about OI, because people brought up showering as a trigger.

Oh another thing I have found helpful is showering by lamplight rather than using the full lights when having a full shower. Definitely not recommended if unsteady or at risk of falls. I use two small portable lamps that are suitable for bathrooms/outdoors, neither of which has direct light...

I can usually get dressed, but I have been doing that a good bit recently as my joints have decided to all fall apart at once and I just can't get dressed twice. Hadn't thought of the skirt addition, which is genius.

The OI-showering connection is supposed to be because of heat and humidity making your blood vessels widen, so blood drains from the top down. Sitting definitely helps me for a long shower, when I'm doing hair as well as body, and that would make sense, as it would slow down the blood pooling...

Yeah, the foam ones I use are 33dB. I also read a lot of threads on various different patient sites. I remember people commenting that they still found them uncomfortable and went back to foam. Materials are likely to have improved since I looked into it, though - I'm not even sure there...

No, that was over a decade ago. I'm severe. No out and about for me. I looked into what I think you're talking about before - the ones audiologists make, right? From what I found, they're not what I need. They don't cancel enough noise. But maybe you're talking about something else?

I got those earplugs, thanks for recommending them @JemPD. I love that you can put them in without getting your hands dirty, because that saves me a trip I'm not able for. And the noise reduction is very good. But I do find them more uncomfortable than foam earplugs. For me, they're not...

Yes, I use fake ones from Amazon for my 25s and they're great! I couldn't get the right colour for the right model in fake, so I had to get the real deal.

That's brilliant, @Kitty. They sound perfect for you. I did the same during Black Friday. I need two pairs of noise-cancelling headphones on the go (I have learned this the hard way), and my B pair are really on their last legs - they're Bose QuietComfort 25, yes, twenty-five! My A pair are...