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On 7/10/2020 at 1:10 AM, Clueingforlooks said:

if I could just be a tiny bit more functional I’d be so happy but I’ve had no progress for over a year. 

I hope you can find more function and progression. Warmest thoughts go out to you from me. It’s obvious that you are resourceful and not afraid to reach out to others and that shows a lot of strength. 

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On 7/10/2020 at 12:10 AM, Clueingforlooks said:

Sorry to hear you struggle with daily fatigue too, if I could just be a tiny bit more functional I’d be so happy but I’ve had no progress for over a year. 
Yes I try and sit up in bed all day/as much as I can, but recently I’m more exhausted/tired and well as fatigued so it is hard.

Hi - have you tried an SSRI? They help with balancing serotonin - which in turn helps level other neurotransmitters, and is a known effective treatment in POTS. 

Leg raises and bringing your knees to your chest and straightening back helps me to avoid deconditioning when bedridden. Exercise while lying down is ESSENTIAL - or all of your symptoms will worsen. Even if you only do two exercises and they wear you out completely - if done every day they will help for your fatigue. It may seem like an impossible feat to you right now but trust me - they will help you feel better. 

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On 7/12/2020 at 7:29 PM, Pistol said:

Hi - have you tried an SSRI? They help with balancing serotonin - which in turn helps level other neurotransmitters, and is a known effective treatment in POTS. 

Leg raises and bringing your knees to your chest and straightening back helps me to avoid deconditioning when bedridden. Exercise while lying down is ESSENTIAL - or all of your symptoms will worsen. Even if you only do two exercises and they wear you out completely - if done every day they will help for your fatigue. It may seem like an impossible feat to you right now but trust me - they will help you feel better. 

@Pistol Thanks for replying, I haven’t tried an ssri so far, I’m sensitive to a lot of medications I’ve been wary that it might flare me up even worse and I’m already pretty weak. 
I do movement as much as I can but I’ve been going downhill a lot recently feels exhausting to even eat right now. My fight or flight getting worse has got me into this fatigue hole I think. 

On 7/12/2020 at 12:46 PM, PotsieCrocheter said:

I hope you can find more function and progression. Warmest thoughts go out to you from me. It’s obvious that you are resourceful and not afraid to reach out to others and that shows a lot of strength. 

Thanks so much xx @PotsieCrocheter

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