Post Exertion Malaise in moderate ME/CFS

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After 4 days socialising and doing light travel I'm experiencing classic PEM symptoms so I thought a good time to give insight into what that might mean/look like!
(I'm 33, have had ME/CFS following a mono-like virus that never went away starting in 2006. I have had some good months but have never been recovered or symptom free over these 12 years. I'm having one of my hardest years this year but still stay in the range of moderate ME/CFS)
You can read more about my story at jennysrp.blogspot.com/2017/07/...

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Опубликовано:

13 авг 2018

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Комментарии : 31

@jennysrp 5 месяцев назад

Hi everyone - as of 2024 I am still generally at the same levels but have made some life adjustments out of necessity to take care of myself. I live a slow, quiet life but am able to work freelance 30 hours a week from home online and do some social activities on a careful pacing basis. I still experiment with nutrition and gentle movement practices. I will still experience PEM when i go beyond my daily routine. I also now have Long COVID which mostly affected my heart and kidneys but I have experienced great improvement in time. Everyone's journey is different. Everyone's support systems are different. I just hope you keep trying and find what works for you on your terms and anywhere you have hit your limit I pray you receive exactly what you need. ❤

@jenniferw1595 Месяц назад

Hello- I have Long Covid too. I had very mild ME/CFS before and now I am moderate to severe. Can you an update video?

@ShermanTank13 Месяц назад

I hear you - I'm sorry you're experiencing such a challenge. I will consider recording an update soon, thanks for commenting.

@agustaharting21 5 лет назад

I'm in the US, am 80 years old and have exactly those symptoms since a flu shot in 2014 Gone from Doctor to doctor, but no visible markers. You're describing me, except for additional vision disturbances, bladder/colon attacks and constant neck pain. My heart goes out to you because you're so young, GOD Bless You Girl!

@ShermanTank13 5 лет назад

Thank you I'm so sorry you're not well. I highly recommend following the work of The Open Medicine Foundation. Take good care ❤️

@FunwithCFS 5 лет назад

Giiiiiirl I didn't even know about this video (and its great description of PEM)! It is so cool to hear your voice! 💟💖💗

@ShermanTank13 5 лет назад

d'awww

@BluejaytheJaybird 5 лет назад

I feel you darling. Don't know what I'm gonna do

@smasome 5 месяцев назад

You can talk! I am basically incoherent and can't follow a conversation when I crash. I guess that would be called "severe PEM?"

@jennysrp 5 месяцев назад

Hello my dear thanks for watching and yes I know the range of severity can make explaining the illness so complicated. Compared to many I have moderate PEM. I wish we knew more about why the severity levels differ so much. Huge love and solidarity with you on your journey. Xx

@ShermanTank13 5 месяцев назад

Oops I replied from my other account jennysrp but they are both me :) sending you good wishes

@m.e.cornelis9722 4 года назад

Hi ..try nót to crash !!!! If possible!! You have to skip a lot of activity s,not to get worse....!

@DotaFreezwalm 5 лет назад

damn.. How are you doing now in 2019? I have CFS too, and IBS on top of that. Do you have any strategies to cope with especially PEM and brain fog? I wish you all the best

@ShermanTank13 5 лет назад

Only pacing and reducing activity, lifestyle changes and a really excellent diet full of veg. It won't cure you but you might find symptom relief. I am not any better, but if I eat poorly and do to much I always get worse. My bf with IBS responded really well with the FODMAP diet so I'd recommend giving that a try for 6 weeks. I have regular support from The Optimum Health Clinic who I also work for part time.

@bismutlife1584 4 года назад

For me lisdexanfetamine had helped with brain fog. It's not a cure, but definitely helps

@22Harponyo 2 года назад

how do i get diagnosed? I've been in and out of clinics and hospitals with certain symptoms but doctors feel that I am just trying to get out of work or am hysteric because I am a woman! symptoms started after i returned from a hiking trip and had a viral fever. had unexplained chest pains, intense fatigue, i feel pain all over my body mostly in my limbs especially the legs, after exerting myself like doing intense exercise but i later realised it triggers my crash. my sleep gets really bad when the crash happens. worst sleep ever! i wake up unrefreshed and as though my energy is depleted from the sleep. i think i would feel better if i did not sleep! my veins will pop for no reason and i get breathless.. this made me very depressed and i got many tests done. doctors say i'm just having anxiety. i can still think, speak and work. two years on, my condition is somewhat more well managed because i don't get any activity due to the pandemic. is this CFS or something else? Can someone help me? TIA.

@ShermanTank13 2 года назад

Unfortunately it depends what country you are in, and even then its just a process of elimination. If you've already been checked for other neurological, immunological or auto immune illnesses you can start to assume you have ME/CFS and follow pacing tips and advice online for fibromyalgia. Follow the news from the Open Medicine Foundation and a patient advocacy group in your country to start. Good luck - gentle hugs -

@22Harponyo 2 года назад

@@ShermanTank13 thank you Jenny! I feel less lost now. Shall check out the resources you shared.