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@farbeyondtired

Severe ME for 14 years, hEDS and co• 27y/o • somewhere to share my thoughts when I have enough energy/brain power to do so.

Katılım Temmuz 2022
253 Takip Edilen432 Takipçiler
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@deborahbrian I have quite a long list, I’ll try and find them!
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Can someone please tell me why I react to b12 & folate so badly? I’m very deficient in both but even on micro doses I can’t take b12 without feeling exhausted to the point I can’t open my eyes and folate makes me feel like I’m going insane with anxiety and agitation.
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Stephen Davis
Stephen Davis@PlanetEarth_HD·
@farbeyondtired i have similar issues and also tried many brands and types of b12 and folate the most common stuff i can find is methylation issues but i think there must be more to it.
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E ❀@farbeyondtired·
@renesugar I wouldn’t be surprised if I have problems with my gut microbiome. I’ve only tried oral. Too scared to try injections as they are much bigger doses than oral and I react to even tiny doses
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@canadiangymnerd I’ve tried all 3 and not injections (too scared to try injections as they are bigger doses and I react to even a tiny dose)
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@Naomi_D_Harvey I’ve tried folinic acid but it still gives me awful anxiety. Not tried with b3 tho, ty!!
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Naomi Harvey “PhD Witch” #WearAMask
Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey·
@farbeyondtired Those who do often do better with folinic acid instead. The B12 fatigue may be your body getting busy using it and using your energy to do things with it. Usually the body starts rapidly making red blood cells when B12 is replaced, this can deplete potassium rapidly.
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E ❀@farbeyondtired·
@Naomi_D_Harvey That makes sense, I just don’t know how to push through it. It was getting to a point where I couldn’t move my arms at all, couldn’t turn myself over in bed, felt like I didn’t have the strength to breathe (which I have already but it was even worse), it was honestly torture 😅
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Naomi Harvey “PhD Witch” #WearAMask
Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey·
@farbeyondtired When you’re very deficient it can cause paradoxical worsening when you begin to supplement. The B12 Wake Up group on Facebook has some good information on this. The anxiety from folate - is that methylated folate? Many get anxiety/mood issues from methylated vitamins.
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Canary
Canary@TheCanaryUK·
🚨 An NHS hospital is starving a severe ME patient and has now stopped giving her fluids Savannah has lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h_sharland has her story #MEcfs thecanary.co/uk/analysis/20…
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E ❀@farbeyondtired·
Is it possible to go from very severe, progressive ME for 10+ years to stable and improving? *Asking for a friend* 🙏🏼
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Obviously not today but it keeps happening
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Does anyone else have cognitive problems so bad that you completely lose the ability to read or write (similar to if you were trying read something in another language that you didn’t speak, it’s like that for me just reading English) bc that’s where I keep ending up recently
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E ❀@farbeyondtired·
In my 15th year of having severe ME and I'm more severe than I ever have been before. It's just been constant deterioration. Not one moment of stability or improvement. Constantly asking myself these questions.
Lizzy H@hopefullizzy

Does anyone ever find themselves asking, What am I missing? Why am I not getting better? What am I doing wrong? Why despite everything I’ve tried does my health not improve? That’s what having a disease with no healthcare, no support, and no treatment looks like. Devastating.

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E ❀@farbeyondtired·
So I’m in hospital. Had sepsis but heading in the right direction now. Been absolute hell (still is tbh) but I’m terrified of what this is going to do to my already declining ME 😣
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Memorial ME Victims R.I.P.
Memorial ME Victims R.I.P.@MemorialME·
🖤#RIP Samuel Bernstein🖤 *21.3.2002 – †4.9.2025 Another #MECFS hero died after too many days laying flat in the dark after too many days of excruciating pain after too many days without seeing a friend after too many days feeling the sickest imaginable.. So heartbreaking..💔
Memorial ME Victims R.I.P. tweet mediaMemorial ME Victims R.I.P. tweet media
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Han 🖤
Han 🖤@spoonfulofhan·
The people that you think are in your inner circle will be some of the first to stop caring when you become sick or disabled. Your circle of people that truly care is smaller than you think.
DUKES@sikes_oa

as you grow what have you realized?

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KarenLesliePhysio
KarenLesliePhysio@karenphysiocouk·
@useless_priest Let's take post stroke fatigue as an eg. It is very debilitating, limits function and quality of life, can persist for years/indefinitely. Exacerbated by exertion, physical or cognitive. It's extreme tiredness, can reduce cognitive/physical function. It isn't PEM...
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Brian Fog
Brian Fog@useless_priest·
ME is not fatigue. It's not a synonym for chronic fatigue.
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E ❀@farbeyondtired·
I just can't stop thinking about how much trauma this will be causing and how dangerous it is for her sister. I wish they could realise what they’re doing, it’s so fucking cruel.
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Keşfet

@deborahbrian @PlanetEarth_HD @renesugar @canadiangymnerd @Naomi_D_Harvey @h_sharland @elonmusk @BarackObama