Anyone else here because of Long COVID/MECFS?

[anemicamoeba]

I've been severely ill since late 2020. Currently also struggling with MCAS, SIBO, POTS and gastroparesis. It's... A lot, especially as I've had repeated reinfections. I'm trying so hard all the time with doctor's appointments, different medications/diets/protocols, and Everytime I improve I get reinfected and set back so all I've accomplished is managing to mostly avoid getting too much worse. It's exhausting and scary

 

[Bear1234]

Hi friend, im here because i was diagnosed with interstitial cystitis and ive been a nonstop flare for a year and a half. I understand. its a shit show and the health care system is a shit show and your own body is a shit show. Im so so sorry you are going through. Just wanted to say i understand and you deserve a quality of life.

 

[moonoverthesea]

while the main (physical) illness that brought me here is another one (which I assume is not from covid, but now that i think about it it started right after a COVID reinfection...), my general health also plummeted right after COVID and I also got permanent SIBO from it. Sending you hugs..

 

[nothingspecial]

One of my teachers from my senior year of high school suffered from long covid. I'm assuming she still is. She was so miserable and in pain all of the time, I felt so bad for her. I completely understand why you're here, it's such an awful thing to go through. My heart breaks for you. I really hope you find peace and hopefully recovery.

 

[KuriGohan&Kamehameha]

I've had ME/CFS since I was 17 years old, it's been over 8 years now for me. It's completely fucked up my blood circulation and my cognitive functions. In my case, I think it might be permanent at this point.

All we can hope for is a breakthrough in biomedical research, and new treatments getting pushed onto the market, the Dafoe family fights very hard to get more research funding for these diseases, it may be of interest to ask for an overview what they're currently doing at their ME/CFS clinic at Stanford University if your doctors are unfamiliar with it.

Unfortunately a lot of these chronic illnesses seem to be connected, making it even more of a puzzle to diagnose and treat them. It's a very hard battle to fight when there isn't so much understanding from the general public, but it takes a monumental amount of strength to fight such an elusive and misunderstood disease. Sending you love.

 

[2chanc]

I've had ME/CFS since I was 17 years old, it's been over 8 years now for me. It's completely fucked up my blood circulation and my cognitive functions. In my case, I think it might be permanent at this point.

All we can hope for is a breakthrough in biomedical research, and new treatments getting pushed onto the market, the Dafoe family fights very hard to get more research funding for these diseases, it may be of interest to ask for an overview what they're currently doing at their ME/CFS clinic at Stanford University if your doctors are unfamiliar with it.

Unfortunately a lot of these chronic illnesses seem to be connected, making it even more of a puzzle to diagnose and treat them. It's a very hard battle to fight when there isn't so much understanding from the general public, but it takes a monumental amount of strength to fight such an elusive and misunderstood disease. Sending you love.

Clonazepam, dexedrine and not pushing my limits gave me my life back from ME. I have much worse illness now tho

 

[PhDone]

I have MECFS but not from covid. A hideous and traumatising existence. Just the most gross illness. Have no understanding whatsoever of the point of being sat here in non life as an rest of life experience. I find the layers of loss from it utterly overwhelming and claustrophobic. So sorry everyone here dealing with this and other shit things. Much love to you all.

 

[sunbleachedfliess]

yup, i'm here bc of long covid and a recent relapse in me/cfs. i've been so strong for so long but idk how much more of this i can take

 

[parasite_eve]

Immunocomprimised and been isolating and masking for 5 years because can't afford infections and LC is 20% chance even when asymptomatic (20-60% cases); partly what's driving me to a natural end is everyone IRL has abandoned me for my disability :(


And now getting respiratory dmg is doubly scary becuse n2 seems like optimal option and wouldn't be able to do it if lungs wrecked :/

Love and solidarity <3

 

[sunnyside]

Yes,
Bedridden for two years since catching covid

 

[sickboy55]

Yes, I've been suffering from fatigue, POTS, tinnitus, extreme muscle stiffness and lack of deep sleep among others since March 2023, probably as a result of Lyme disease and long-term stress. Doctors can't help much but most of them don't even want to, as I'm young so they believe I can't be sick and must be crazy.

 

[PhDone]

Yes, I've been suffering from fatigue, POTS, tinnitus, extreme muscle stiffness and lack of deep sleep among others since March 2023, probably as a result of Lyme disease and long-term stress. Doctors can't help much but most of them don't even want to, as I'm young so they believe I can't be sick and must be crazy.

Thats hideous. So sorry to read this. I have severe tinnitus alongside my other serious conditions too and it really drives you insane. Its so hard fighting medical gaslighting. What a nightmare