It would be funny if it wasn’t so sad and true. A few years ago I had the flu. Took me three weeks to be completely fit again. Then, like two weeks later, I suddenly got dizzy, I felt like vomiting, I was cold but sweated like a pig. I thought I was going to faint. I laid down and slowly felt better. But it came back every ~30 minutes. Over the day it got better until in the evening I only felt exhausted. The next day I felt good again and went back to work. Around 9 in the morning, BAM, it hit again. I went to the physician and my systolic blood pressure went haywire going up and down between 90 and 180 within 5 minutes. He prescribed me something “for the bloodstream” without any clear diagnosis. It didn’t do shit. I visited him I don’t know how many times. Then I went to the next physician. And the next. I somehow kind of learned to live with it. One year later the third or fourth physician actually did some tests: You have a severe vitamin D3, B6, and B12 deficiency. Your immune system is fucked. Your stomach is fucked. Your metabolism is fucked. I finally got some treatment that actually improved something and felt significantly better but not good. Two years and ~three physicians later it turns out that my problems are somehow linked to my allergies: your immune system is fucked. There’s some trial and error with different medications, at the end of which I actually feel better but still not good. Three years and another two physicians later the fuzzy diagnosis is that I had/have “long flu” (mind you, this is all before covid). It damaged my nerves and somehow mixed up my metabolism. There’s a weird “cross-relationship” with my allergies. Now I take medication daily which lets me at least function and work. I still do not feel good. I haven’t felt good since six years. But, there’s an entry in my file from 5 years ago that I’m a hypochondriac, that won’t go away, despite later tests confirming that several things were severely and factually wrong with me …
Oh hey, fam! Welcome to the club. I have all that as well, they think also as a result of a viral illness prior to Covid. Metabolic (mitochondrial dysfunction) and neuroimmune. At first, I was told I have anxiety, oh no wait, schizoaffective disorder, oh no no wait, conversion disorder, as if any of those things are even remotely similar. Lo and behold when I finally got a physician who has some idea how to diagnose and treat my symptoms, I’m doing much better. Like you said, I’m functional even if I don’t feel great. And funny enough, none of my treatments include psychiatric medications.
My wife is in the same club. Family history of lupus, all of the symptoms of lupus, several health conditions that are usually caused by an autoimmune disease, but the ANA panel was negative so it can’t be lupus.
Luckily I’ve convinced her to actually go to a clinic that exists to diagnose hard to diagnose autoimmune diseases.
It doesn’t help that she’s a soft spoken petite woman, either. I have to go to doctors appointments with her for them to actually take her seriously.
You can actually have the hypochondriac thing removed from your medical records if you want it gone. It’s a HIPAA requirement that you have full control over what’s in there. You’ll have to send the request to every facility you’ve shared your record with that don’t have connected systems.
It would be funny if it wasn’t so sad and true. A few years ago I had the flu. Took me three weeks to be completely fit again. Then, like two weeks later, I suddenly got dizzy, I felt like vomiting, I was cold but sweated like a pig. I thought I was going to faint. I laid down and slowly felt better. But it came back every ~30 minutes. Over the day it got better until in the evening I only felt exhausted. The next day I felt good again and went back to work. Around 9 in the morning, BAM, it hit again. I went to the physician and my systolic blood pressure went haywire going up and down between 90 and 180 within 5 minutes. He prescribed me something “for the bloodstream” without any clear diagnosis. It didn’t do shit. I visited him I don’t know how many times. Then I went to the next physician. And the next. I somehow kind of learned to live with it. One year later the third or fourth physician actually did some tests: You have a severe vitamin D3, B6, and B12 deficiency. Your immune system is fucked. Your stomach is fucked. Your metabolism is fucked. I finally got some treatment that actually improved something and felt significantly better but not good. Two years and ~three physicians later it turns out that my problems are somehow linked to my allergies: your immune system is fucked. There’s some trial and error with different medications, at the end of which I actually feel better but still not good. Three years and another two physicians later the fuzzy diagnosis is that I had/have “long flu” (mind you, this is all before covid). It damaged my nerves and somehow mixed up my metabolism. There’s a weird “cross-relationship” with my allergies. Now I take medication daily which lets me at least function and work. I still do not feel good. I haven’t felt good since six years. But, there’s an entry in my file from 5 years ago that I’m a hypochondriac, that won’t go away, despite later tests confirming that several things were severely and factually wrong with me …
Oh hey, fam! Welcome to the club. I have all that as well, they think also as a result of a viral illness prior to Covid. Metabolic (mitochondrial dysfunction) and neuroimmune. At first, I was told I have anxiety, oh no wait, schizoaffective disorder, oh no no wait, conversion disorder, as if any of those things are even remotely similar. Lo and behold when I finally got a physician who has some idea how to diagnose and treat my symptoms, I’m doing much better. Like you said, I’m functional even if I don’t feel great. And funny enough, none of my treatments include psychiatric medications.
This club sucks.
My wife is in the same club. Family history of lupus, all of the symptoms of lupus, several health conditions that are usually caused by an autoimmune disease, but the ANA panel was negative so it can’t be lupus.
Luckily I’ve convinced her to actually go to a clinic that exists to diagnose hard to diagnose autoimmune diseases.
It doesn’t help that she’s a soft spoken petite woman, either. I have to go to doctors appointments with her for them to actually take her seriously.
This club sucks.
You can actually have the hypochondriac thing removed from your medical records if you want it gone. It’s a HIPAA requirement that you have full control over what’s in there. You’ll have to send the request to every facility you’ve shared your record with that don’t have connected systems.