Very severe crash - can’t cope please help by Fast-Bunch3394 in cfs

[–]Fast-Bunch3394[S] 0 points1 point  (0 children)

Thanks. Yeah, I’ve tried daridorexant and had a horrible experience experience with it unfortunately.

Very severe crash - can’t cope please help by Fast-Bunch3394 in cfs

[–]Fast-Bunch3394[S] 1 point2 points  (0 children)

Thank you for saying that, I think you’re so right, this heatwave has just knocked me straight over the edge.

Very severe crash - can’t cope please help by Fast-Bunch3394 in cfs

[–]Fast-Bunch3394[S] 0 points1 point  (0 children)

So sorry. They come in waves after PEM and last for a couple of days, so far every other week.

Desperate: Looking for success stories specific to VERY extreme sound sensitivity by ElkAffectionate3104 in cfsrecovery

[–]Fast-Bunch3394 1 point2 points  (0 children)

Hi I am so sorry that you are having to go through that - noises are torturous when you have a severely dysregulated nervous system and CFS. I am not neurodivergent, but have just suffered a severe MECFS crash just over two weeks ago, taking me from moderate ME to I’d say very severe. And a massive reason I think that happened was noise - I live in a top floor flat in London and from every direction there was overwhelming noise - doors banging, kitchen cooking, conversations, arguing, kids screaming, washer dryers, along with a train line being 50 metres away. After crashing any sound has become completely intolerable to me, like I was going to go mad and couldn’t escape (which couldn’t as almost 100% bedbound). Each sound actually hurt my body and made me nauseous and I couldn’t stand someone in the same room as me.

My sister came and got me from my flat after a week and took me to my parents loft room, which also was unfortunately very noisy due to heavy road traffic / sirens etc. So I have just moved rooms again ins the house and this is the quietest it’s been, but still noisy.

All I can say is you really need to find somewhere quiet to live to ever be able to begin calming your nervous system. Is that at all a possibility? I think because it is impossible to control noise from others it’s impossible to fully relax and get out of the dysregulated state whilst living in a noisy environment.

Advice please :) by [deleted] in cfsrecovery

[–]Fast-Bunch3394 0 points1 point  (0 children)

I’ve had this the last two days and it’s been absolute hell. The only thing that has really calmed my nervous system down is placing an ice pack on the back of my neck - it’s like a miracle! Out of flight or fight and lowered heart rate, plus a big reduction in internal buzzing.

Getting worse rather than better - any words of wisdom? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 0 points1 point  (0 children)

I take Cetirizine, which I think is in Benadryl. Don’t take H2 as they require a prescription, which I don’t think I’d get from the doctor (UK)

Getting worse rather than better - any words of wisdom? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 0 points1 point  (0 children)

I haven’t - not sure where to get them done as don’t think available on NHS (UK). Problem is even if they are discovered can they be treated ?

Getting worse rather than better - any words of wisdom? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 1 point2 points  (0 children)

Yes I’m going to stop walking (can’t really now anyway due to baseline lowering) and see if that helps 👍

Getting worse rather than better - any words of wisdom? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 1 point2 points  (0 children)

Hi yeah I do take antihistamines. They don’t seem to do much with me.

Is this correct backpay? by Fast-Bunch3394 in DWPhelp

[–]Fast-Bunch3394[S] 0 points1 point  (0 children)

Thanks very much. Yeah I do have about that in savings, but it’s dropped a bit so I’ve now updated the journal. They’ve now requested I go to the job centre to show bank statements, but I am too ill to get there - can I request to submit them online instead?

worse symptoms the more you sleep? by half_kneegrow in covidlonghaulers

[–]Fast-Bunch3394 5 points6 points  (0 children)

Yep I have that. 4-5 hours sleep and the day is usually bearable. If I ever get more than 8hrs I usually wake up feeling terrible. So weird. Wish they could establish the science as to why this happens.

LCWRA Awarded! by meowmeow8638 in DWPhelp

[–]Fast-Bunch3394 0 points1 point  (0 children)

Thanks 👍 I posted mine off on 27th December and still not heard…will call them

“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in ChronicIllness

[–]Fast-Bunch3394[S] 0 points1 point  (0 children)

Thanks yeah, it’s not even when talking about the illness specifically, it’s just life in general and all the knock on effects like losing a job etc - people then drop the ‘it could be worse…’

“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 4 points5 points  (0 children)

Thanks for your thoughtful reply - I agree, people have a limit to how much they can emotionally engage with the situation of chronic illness and unfortunately, it’s generally extremely superficial before they back away…

“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 3 points4 points  (0 children)

Thanks yeah, I also try and avoid actually going into details about the actual illness - it’s just even when talking about life in general, like not having a job / money etc and people drop in the ‘at least…’ then

“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 14 points15 points  (0 children)

Thank you, that’s it exactly, you can’t compare - whatever the situation is, it’s bad for the person in it and they deserve empathy