Hi everyone
With this terrible heat, I feel for everyone else out there that’s suffering right now. I have a question though.
Heat brings on pseudo-relapse and I certainly suffer from much more weakness and tiredness. This year however I’ve noticed my spasticity getting worse and wondered if others experience that with the extra heat too?
#heat #pseudo-relapse
This isn’t exactly cheerful reading material, but I personally find it helpful at least to have some understanding of what’s going on and why.
Yes I saw that. Giovannoni’s stuff is brilliant and I’m so glad he’s there! I’ve shown those videos to others so they can get it and it makes a real difference!
Thanks - Gregor
He’s great, isn’t he? Reaching and helping more people, which is what he does, is valuable work.
As per the Prof G link from @alison100, it’s not a pseudo-relapse but in slowed conduction in demyelinated or remyelinated pathways. Thus it can affect everyone with MS, not just RR-
I’m PPMS and struggling in the heat. Fatigue is really affecting walking, drowsiness and cognition to an extent. Feel like my CPU is running slowly! Staying indoors, drinking iced water and putting frozen gel packs on my head are getting me through the days. I’ve sort-of gone nocturnal because I revive when the temperature drops at night.
Hoping everyone is coping OK. What’s your special tip for keeping body & mind together?
Cold showers do the trick for me. Look up Wim Hof method.
Thanks alison100, very interesting, I like a lot of other’s hate this heat, I use cold pads and a cold blanket, because the nerve pain is awful, my fatigue is terrible and quite honestly sometimes I just don’t know where to turn, but I know I’m not alone, take care everyone.
Jean
p.s. and yes to answer your question my spasticity is worse, my legs feel like the tin man and when I’m in bed I’m as stiff as a board.
Ha! Just out of standing under coldest shower possible for three minutes. Felt I could have stayed under there for hours!
Thanks Greenhouse!
Cold showers are great. Nothing quite like it for cooling the blood!
Hi GCCK
Yes I know it’s not about pseudo relapse but it’s still a good thing to show people so they understand. Most people will be reminded by their school physics and that an uninsulated wire will transmit better the colder it is. Demyelination is like taking any insulation off your electrical wire, therefore any increase in temperature makes it much worse. Simples!
Back in the heat again. Hope you’re all okay out there in heat land.
Another trick I’ve learnt for walking the dogs. I take my shirt off and soak it with water before putting it back on. The water wicks away the heat as it evaporates and works really well.
I wonder if anyone has a perspective on this? I don’t understand why we don’t reset completely on a cool night. I still wake up quite weak but it’s not hot yet! Any ideas?
Thanks - Gregor
Heat intolerance is the bane of my life: yesterday with Covid fever I had zero energy to sit up in hospital bed or even feed myself, I could not move a muscle, until my body temperature was back to normal; today I’m feeling much stronger. 
I think just being in your undies helps, but I don’t think you could venture too far outside tbh. 
Being in undies or less if great. I’ve developed another trick which is to keep a master spray bottle (like you get in the hairdresser’s) in the fridge. Spray yourself at night and then use a portable fan on yourself. Really works to cool your down fast
Unfortunately, I don’t use portable fans at all, as it irritates my Marty Feldman eyes. 
Yes, using the spray mystifier on yourself, is a great way to keep cool.
JP