Stepsnie
Region: GB
Friday 08 May 2026 18:47:18 GMT
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sadiefitchett :
My body feels like it’s shutting down, parathesia, nausea, migraines, my legs are heavy but also like jelly, palpitations, it’s fairly new for me so it causes anxiety aswell which makes everything worse
2026-05-09 11:00:43
47
Jenny 🇬🇧 :
I always know it's PEM because my throat feels sore along with the other symptoms. but it's always the sore throat.
2026-05-10 16:38:46
8
Ezra :
i’ve been dealing with this since 2020 after finding out i had post-COVID. luckily i’m in the ‘mild’ bracket but it’s still hell. pretty sure i have POTS as well.
2026-05-15 23:05:34
1
Krissy 🇨🇦 :
my expierence was to find the cause, check and try everything that could possible help but I was a servere case, without my doctor who is a specialist with autoimmune and all sorts of illnesses the normal system does not want to pay/support, I would have never heald up. It took me 4 years and a lot of changing plans and a lot of appointements. what I have learnt it is such an individual thing, that you cant treat all the same. that theraphy is therefore very expensive and normal system and doctors ignore it. unfortunaltly. my tip is, try find a specislist who treats this illness and has patients already. I was lucky. so maybe this helps and gives hope. I mean I was a severe case and prognosis was really bad due to muliple diagnosises.
2026-05-09 09:29:31
3
emmaisevolving 💕😻🌸 :
The concrete legs are so real. I often dream I can’t walk properly, like walking through treacle. It’s always when I’ve done too much. It’s the strangest feeling but I hate it.
2026-05-09 21:06:32
17
Claire :
You explained it really well, thank you. Sometimes it's difficult to sum it all up and explain everything. It feels like you're making up all the different symptoms and that nobody will believe it's that bad. But it really is. Here's hoping for some sort of cure soon 🙏🥰
2026-05-28 18:13:57
1
Zade | Books📚 Lifestyle 🪴 :
it can last years.
2026-05-11 14:40:10
6
MarieFibro 🪷 :
Definitely flu with no high temperature
2026-05-09 11:30:04
9
thyra :
totally me today... only cause I went to the shop and to a class afterwards.. can't even stay upright today....
2026-05-28 15:05:18
1
Marlo Weeva :
I've had to inform family, I love them but can't take phone calls too often. 💙❤️🩹🥲🥹 Thank you for sharing.
2026-05-08 20:39:31
5
Tonic :
I literally shower once a week now if I’m lucky. With help! Showering is a huge trigger. 😭😭
2026-05-30 03:06:25
6
Georgie Maw :
Having a crash today and so so down about life tonight. I just want my life back
2026-06-01 19:30:39
2
Maxy :
I’ve had a PEM crash since April 18th. I did too much that day eg went for a very long walk. Yesterday was the 1st day I felt better.
2026-05-09 12:07:44
9
Jodie Poye :
Yep that’s hard me today 😩
2026-05-11 08:10:45
1
Lulu :
You described it so well.
2026-05-10 23:00:26
2
Real life with Ty :
I had 3 in 10 days!! 😳
2026-05-09 17:40:31
1
Rosko :
It’s my legs that are a give away I’ve overdone it, struggle to get up my stairs
2026-05-09 06:16:06
6
Chronic Care | Work & Support :
So true! 🥰💜
2026-05-09 21:52:02
1
Julie Rand :
I’m so sorry….. I have the same and it’s living hour by hour. Sending hugs ❤️❤️❤️❤️
2026-05-09 10:03:37
1
@spanielstudios :
The worst part for me is just the autopilot just sitting there on standby which is soo tiring. 😫
2026-07-13 22:58:20
1
🇬🇧💖ℕ𝕚𝕜𝕜𝕚.𝕞.𝕩💖🇬🇧 :
the concrete limbs are so real 😭 I also get really bad neck and shoulders and can't hold my head up 😭 I can't live like this, it's constant. I spend so much time exhausted 😔
2026-07-23 11:05:51
0
Lealoves :
This 😢
2026-07-06 18:26:34
0
coolmom :
Can someone also have this while having good days where u function “normal” also have EDS and POTS bit sometime i cant even go to the shower and Some days i can go shopt etc
2026-07-04 13:45:12
0
Bex :
Does anyone else take up with hand tremors?
2026-06-23 12:09:21
0
Leelah :
Severe PEM comes with temperature for me.
2026-05-14 17:01:11
0
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