The gist of the post is in the title.
The recovery sub for long covid is way bigger than this one despite there being entire influencers and content creators based around CFS recovery.
Why is that? Is the methodology of brain retraining so controversial that this sub is only 1% the size of r/cfs?
So, hello everyone.
I never wanted to make a post like this, I still don’t and maybe I won’t, but here I am.
I’m a young man (21) who has been experiencing a two month long bout of life shattering fatigue. In this short period I went from going out and partying, drinking, hooking up (I say as though it actually happened) and everything in between — to struggling to find the strength to clock into work.
I’ve been experiencing a heightened bout of stress (left college to pursue a different are of study, broke up with a longterm girlfriend, began losing my hair (may sound really stupid but it is legitimately disheartening given my age), typical loss of life direction.) that initially manifested as panic attacks and nights of sleepless meandering anxiety and has developed into an undertow of fatigue and flu-like symptoms. The onset was very sudden, two months ago I woke up feeling like I was hit by a truck. I thought nothing of it, brain fog is something I’ve experienced in and out for a very long time.
I just thought I had slept wrong, or maybe that I was sick, or maybe I ate something.
But it hasn’t changed, I wake up everyday with this same feeling, and my energy has decreased more and more. I missed a week of work, a couple days of class, I haven’t seen my friends in a month.
I panicked and ran to the ER and had a blood panel done. Everything non-vitamin related was unremarkable (and I mean above optimal.) My vitamins were low across the board, but within optimal range. I’ve always had a pretty terrible diet and my last vitamin panel from a year ago was even worse (like catastrophic) than now and at the time I felt completely peachy.
I’ve always had a spotty energy capacity, but I’ve never, and I mean NEVER felt like this.
I made a horrible miscalculation by looking up my symptoms and landing on the r/CFS subreddit, immediately was hit with a story about someone opting for assisted death at 20 years of age. I freaked the heck out and immediately conducted a rudimentary SEID test on myself by going to the gym two days apart. I became immediately confident that I was experiencing PEM.
Before I ramble on I want to clarify that I’ve always struggled with horrible anxiety. I’m not a person with a plethora of diagnoses and health problems, but I’m a diagnosed depressive and severe anxiety. I understand my judgment is clouded, but the rederic surrounding CFS matches my symptoms to a tee.
That isn’t difficult, of course. CFS seems to just kind of encompass a general feeling of deterioration that goes beyond normality.
I am the son of two doctors, both of which immediately dismissed the idea of CFS due to them not believing it as a legitimate diagnosis. I know that’s probably pretty telling of their character for some, but I do want to point out that they are two of the most intelligent people I’ve ever met. I’m confident they’ve never encountered someone they had to consider a diagnosis of CFS for based solely on my experience of them as people.
But this dismissal has not assured me, in fact it makes me deathly afraid that if I ever were to nail down CFS as a diagnosis they would never actually believe me as anything more than lazy.
And I know I’m really early into all of this. I’ve read incredible stories on here from people who have found an inhuman strength to carry on through symptoms ten times worse than this for years before turning in and considering this as something they need to talk to a doctor about. Im far too sensitive to my health for me to even think of that.
Just… I had inflammation prior to that day two months ago. I was under a lot of stress. I was pushing myself harder than ever before. I have a history of anxiety, firmly in fight or flight for years at a time in my childhood and late teens. I simply wouldn’t be surprised if this were to happen to me.
But maybe I’m just freaking out.
I’ve already brigaded my therapist and my psychologist about my concerns over this. There’s not much they can say, you know.
I think at this rate the amount of anxiety and stress I’m under due to the mere idea of this being a possibility may very well give me CFS because of my heightened state of mind.
I just really am craving stories from people who have undergone all of this and made it out the other side ok. This community, regardless of my own ultimate condition, has been a wonderful thing to find. I deeply respect the efforts by so many to lift one another up in impossible circumstances while the world largely turns a blind eye. You’re all awesome.
Finding r/CFS has sent me into an utter spiral of despair over something I must remind myself I’m not even assured to have.
But I know something is terribly wrong, and I fit the symptom profile too perfectly for me to be able to put it out of my mind.
Sorry for this being so long, I’m a lifelong writer and I always have way too much to say.