u/sickkasadog

I'm chronically ill so i try to avoid social media as much as possible as to not doomscroll, but I reinstalled Instagram for a few minutes to post some of my artwork and my feed was flooded with how trump unbanned the use of cyanide to bomb wildlife to build data centers, and how it was announced that the government will essentially track down, kill or detain anyone with 'anti American' ideologies or pro transgender ideologies. I am queer and have transgender friends, and I love my environment and the earth so much. Before I became disabled I used to hike and visit wildlife reserves. I was hoping to one day do that again if I ever improve and now I'm scared that won't happen.

I take action the best I can by using 5 calls and calling Congress and my state officials, as well as making handmade protest stickers to stick around whenever I go out in public with my wheelchair.

But I can't attend protests like I used to when I was well. I feel very hopeless.

I have been having pretty bad daytime exhaustion/fatigue (??) for about 4 months now.

I had a visit with my pcp and told her my symptoms

VERY tired during the day even if I get 8 hours of sleep

Dizziness when I stand up too fast, stand for too long, or with too much exertion and heat exposure

Headaches

I see silvery sparkles in my vision with the dizziness and sometimes my ears ring or hearing goes muffled

She tested my BP lying down, sitting up, and standing

Everything was normal so I guess I don't have POTS. I was really hoping to get something, ANYTHING out of that appointment. I just turned 20 and I'm pretty worried for my health

I don't know if I have PEM because I have had the capability to go on small walks or go lut shopping or go out in a wheelchair on bad days and I pretty much feel the same level of exhaustion 24/7 from what I can tell.

Ive been tracking meals, symptoms, sleep, activities, and even my moods since February

I was also given a questionnaire for the epworth sleepiness scale (?) I filled it out honestly but nothing came up from it

I don't have POTS, so now what? She just referred me to an ENT which is very confusing. I tried to make it clear the extreme tiredness is my main symptom. She just referred me to an ENT for the very occasional ringing in my ears..

I told her the exhaustion effecting my ability to live my life but I don't know what else to tell her to get the help I need. I just want answers for why I'm so horribly tired/fatigued(?)

I cannot tell if its CFS but I really hope it is not.

I am 19F, 5'2, and 164 lbs and was pretty active and healthy most of my life, and despite being born prematurely and dealing with things like severe social anxiety and depression in the past I had finally broken through that and was coming into my own, but then I got sick last fall.

Right now I have 0 diagnosis for my current health problems, just a diagnosis of acid reflux and scoliosis.

But since I had very severe symptoms this year things have been so so rough, and every time I thought it couldn't get worse, it did. First was abdominal pain(now thought to be endo by my pcp), kidney infection, then chronic headaches, and then allergic reaction type symptoms that led to an anaphylactic episode in march.

Now these are my symptoms:

Fast heartbeat when standing up, sitting down, walking, bending down

Seeing Silver glittery sparkles after over exertion or heat exposure (since December)

Muffled ringing ear after over exertion (since march)

Dizziness with exertion (since march)

Phlegm when waking up in the morning (since march)

Headaches with over exertion (since December)

Very exhausted during the day, feeling like I could always fall asleep most of the time but feel more awake at night (since February)

Unrefreshing sleep (since march)

I'm going to be 20 tomorrow and all I can think about is how miserable my life is.

I used to care for animals and I was also an artist and I played the gituar, I enjoyed hiking and urban exploration as well as photography. Now all I do is lie in bed exhausted and if I do too much I get a headache and i get dizzy.

I already had a huge scare in march when the MCAS symptoms showed up. I had to get put on oxygen and was given so much epinephrine. I was covered in hives and i was red and itchy, I lost 20lbs because I couldn't eat, and I was so miserable.

Now those symptoms are gone as of march 27th, but I fear every day that I will get that bad again and maybe that time it won't go away.

Right now im horrified that I could have ME/CFS. I'm desperate and don't know what to do anymore. I have a PCP appointment on monday.

I have horrible fatigue every single day no matter how much sleep + MCAS suspected by my allergist.

People keep telling me I have toxic mold exposure, but first of all, my house doesn't have mold. Second of all, isn't mold everywhere?? I know some people can have allergies to mold that can cause issues when being exposed (my allergy test shows I don't) but I heard it's very rare for mopd to actually colonize (??) within your body. I am very skeptical that mold would be causing my issues.

Am I right to be skeptical of this-?

​

I am 19F, 5'2, and 164 lbs and was pretty active and healthy most of my life, and despite being born prematurely and dealing with things like severe social anxiety and depression in the past I had finally broken through that and was coming into my own, but then I got sick last fall.

Right now I have 0 diagnosis for my current health problems, just a diagnosis of acid reflux and scoliosis.

But since I had very severe symptoms this year things have been so so rough, and every time I thought it couldn't get worse, it did. First was abdominal pain(now thought to be endo by my pcp), kidney infection, then chronic headaches, and then allergic reaction type symptoms that led to an anaphylactic episode in march.

Now these are my symptoms:

Fast heartbeat when standing up, sitting down, walking, bending down

Seeing Silver glittery sparkles after over exertion or heat exposure (since December)

Muffled ringing ear after over exertion (since march)

Dizziness with exertion (since march)

Phlegm when waking up in the morning (since march)

Headaches with over exertion (since December)

Very exhausted during the day, feeling like I could always fall asleep most of the time but feel more awake at night (since February)

Unrefreshing sleep (since march)

Right now I'm going to be 20 in less than a week and all I can think about is how much I don't want to live anymore because of my health

I used to care for animals and I was also an artist and I played the gituar, I enjoyed hiking and urban exploration as well as photography. Now all I do is lie in bed exhausted and if I do too much I get a headache and i get dizzy.

I already had a huge scare in march when the MCAS symptoms showed up. I had to get put on oxygen and was given so much epinephrine. I was covered in hives and i was red and itchy, I lost 20lbs because I couldn't eat, and I was so miserable.

Now those symptoms are gone as of march 27th, but I fear every day that I will get that bad again and maybe that time it won't go away.

Right now im horrified that I could have ME/CFS. I'm desperate and don't know what to do anymore. I have a PCP appointment next monday.

Sorry for posting this here if it isn't allowed, but I'm very desperate.

I am 19F and was pretty active and healthy most of my life, and despite being born prematurely and dealing with things like severe social anxiety and depression in the past I had finally broken through that and was coming into my own, but then I got sick last fall.

Right now I have 0 diagnosis for my current health problems, just a diagnosis of acid reflux and scoliosis.

But since I had very severe symptoms this year things have been so so rough, and every time I thought it couldn't get worse, it did. First was abdominal pain(now thought to be endo by my pcp), kidney infection, then chronic headaches, and then allergic reaction type symptoms that led to an anaphylactic episode in march.

Now these are my symptoms:

Fast heartbeat when standing up, sitting down, walking, bending down

Seeing Silver glittery sparkles after over exertion or heat exposure (since December)

Muffled ringing ear after over exertion (since march)

Dizziness with exertion (since march)

Phlegm when waking up in the morning (since march)

Headaches with over exertion (since December)

Very exhausted during the day, feeling like I could always fall asleep most of the time but feel more awake at night (since February)

Unrefreshing sleep (since march)

When I was dealing with my kidney infection in November of last year and crying in pain on my dad's living room couch, he told me that I shouldn't be so sad and that I will face much worse things in the future. I was upset that he said that and brushed off his words, but I should've listened because he was right.

Right now I'm going to be 20 in less than a week and all I can think about is how much I don't want to live anymore.

I feel so guilty for taking my health granted. I feel guilty for getting colds or infections and brushing it off as nothing not knowing it could disable me one day. I feel guilty for not wearing a mask and I feel guilty for not appreciating the days I had where I was healthy enough to run and enjoy nature.

my long distance partner is in my room right now, visiting for my birthday and I'm in my bathroom crying as to not disturb him. I feel so hopeless and lost. We used to do so much together, but now even going out today for an hour or so with a wheelchair I came home and had a headache and felt so tired and weak.

He tried to comfort me saying he'd never leave me no matter how sick I am, he said that there's still tests to be done and we don't know if I'll be this way forever, and that I have a pcp appointment soon, but I'm still terrified I'll be this way forever, or even get worse.

I apologize for so much venting but I just feel so lost and hopeless. I've never ever been suicidal until my health started to decline, now I think about it daily.

I'm not excited for my birthday, I'm not excited for gifts, im not excited for presents or even a special dinner. I just want my health back.

I used to care for animals and I was also an artist and I played the gituar, I enjoyed hiking and urban exploration as well as photography. Now all I do is lie in bed exhausted and if I do too much I get a headache and i get dizzy.

I told my mom I was suicidal and she said "you need to suck it up and get used to it because life stops for no one" I just wanted to be comforted, not scolded. Maybe I should expect less because my mom has recently lost her mom and is struggling, but I just wanted comfort.

Being undiagnosed is like a constant spiral of worrying and then feeling reassured, then right back to worrying.

On one hand, I am not diagnosed so part of me thinks, hey maybe you're anemic like your sister, or maybe you have a thyroid issue since your mom has hashimoto's, or you have narcolepsy, maybe sleep apnea, or even POTS. It could be anything until I get the proper labs done. And that makes me feel a little hopeful for improvement.

But on the other hand, my allergist already thinks I could have MCAS, which I've heard is comorbid with CFS, and my TSH leves were normal with testing, and my hemoglobin is 11.5, so Maybe I just have CFS and I will never feel better, and maybe I'll even deteriorate. And then all hope is lost. I feel exhausted after such small tasks. I'm so scared.

I already had a huge scare in march when the MCAS symptoms showed up. I had to get put on oxygen and was given so much epinephrine. I was covered in hives and i was red and itchy, I lost 20lbs because I couldn't eat, and I was so miserable.

Now those symptoms are gone as of march 27th, but I fear every day that I will get that bad again and maybe that time it won't go away.

I'm trying to work with my therapist who is chronically ill herself to focus on the present, but it is so so so hard when all I can think about is how terrifying the future might be, or how good the past was.

I know I could have it worse, but I am just miserable right now. Thanks for listening if you did, I wish you an easy day.

TLDR: I'm 19 and my birthday is soon, im struggling with the will to continue living with undiagnosed symptoms and no answers. I am scared.

Not asking for a diagnosis but I have alot of symptoms that ar every debilitating.

I am exhausted and tired most of the time and always feel on the verge of falling asleep.

I get dizzy when i stand up too fast, too long, or get too hot. My heart also gets pretty fast with very light exertion and when I stand for too long. I also have ear ringing with too much exertion or heat exposure.

My biggest issue is the constant exhaustion. I am so so so tired all of the time, as if I can just fall right asleep no matter how much I sleep.

I dont want anyone here to diagnose me, I am seeing my doctor next week

I just want to know if POTS could mimic ME. My only working diagnosis is MCAS.

I made a post here yesterday which I ask that you read, and am wondering if based on what I said on the post if it would be wrong or an overreaction for me to use a wheelchair when going out in public.

Right now my long distance partner is visiting me for my birthday and I still really want to go out on dates, but I feel so weak and tired most of the time.

I have a self propelled wheelchair for this exact reason but my dad is very judgemental about it and I am worried that I'd be doing too much if I decided to try and use it while having a date do I can actually go out.

Right now I am on 2.5 mg xyzal and amd always so tired.

I can get 8+ hours and wake up tired. My exhaustion feels like constantly needing to fall asleep no matter what. My eyes feel heavy and I'm just so so tired. But when it's time for bed I'm awake

Any advice on what helped you if you also experience/experienced this type of daytime exhaustion is appreciated

Hi y'all, first in foremost I am not asking for a diagnosis here! I understand nobody here is a medical professional and they cannot diagnose me. I'm Just looking to share my symptoms and have a bit of support.

I'm 19 and have had a pretty big health decline within the past half year. Right now my only working diagnosis is a possibility of MCAS.

I have so many symptoms I'm not going to list all of them here, but some of them have lead me to believe I have POTS or even CFS.

Right now I will be honest my sleep is ver6 bad... I get 6 hours of sleep on a good day, typically falling asleep at 4am.. its bad i know. Its been like this for 4 months.

My symptoms are extreme fatigue, feeling like I could constantly fall asleep no matter what, being short of breath very easily (for example I hung up a Poster on my wall today and had to catch my breath afterwards) my heart rate gets pretty fast when I do simple things such as sit up quickly, cry, take a shower, or even just walking or standing. Chest tightness, dizziness with exertion or when exposed to heat, ringing or muffled hearing with exertion or heat exposure, seeing silvery glitter like sparkles in my vision after exertion or heat exposure.

Its pretty rough right now and I'm really hoping I get answers soon.

I see my PCP on the 18th and want to being this up to her.

I've been having severe exhaustion/fatigue/sleepiness??? For a few months now and idk what is causing it. Considering that it could be an MCAS symptom but I'm not 100%

Right now I have a working diagnosis and my MCAS specialist/allergist has me on Xyzal, right now I take 2.5mg and seem to be doing well.

I don't have any severe symptoms and my diet isn't limited at all, I can eat anything.

My biggest issue right now is constantly feeling like I could just fall asleep no matter what. I only take an H1 blocker, but I wanted to know from others who experience the exhaustion like I do (if there is anyone!) do you find that H2 blockers help?

If not H2 blockers, please let me know what has helped you when it comes to feeling so tired. My sleepiness is debilitating! I can sleep 8 hours and be exhausted!

I'm 19f and I've been struggling with alot of symptoms for about half a year now, and right now I'm really trying to decide if I should play it safe and assume I have ME for now until I get some answers. I am not asking for a diagnosis though.

My symptoms are:

Fast heartbeat when standing up, sitting down, walking, bending down

Seeing Silver glittery sparkles after hot shower (since December)

Muffled ringing ear after bending over for 1 minute to pick something up (since march)

Muffled ringing ear after sexual activity (since march)

Dizziness with exertion (since march)

Phlegm when waking up in the morning (since march)

Headaches when waking up (since December)

Very exhausted during the day, feeling like I could always fall asleep (since February)

Unrefreshing sleep (since march)

Back and neck pain

Abdominal pain (since last October)

Hives, flushing, itching mouth, throat, and skin for the entirety of march that randomly disappeared at the end of march. Experienced one anaphylactic episode. My allergist mentioned MCAS and I'm currently on 2.5 mg of xyzal

I genuinely cannot find a way to figure out if I experience PEM no matter how hard I try but I'm very worried. I know the symptoms of PEM but I'm always in this constant state of exhaustion so I can't tell!

The very odd thing is that some things make me more exhausted than others, like I'm fully capable of having sex for 2+ hours and not feeling like im going to pass out, but if I stand up too fast I get out of breath and dizzy.

I can sleep 10 hours and still wake up tired

My exhaustion feels like a constant state of needing to fall asleep, thats my biggest symptom and concern.

I'm 19f and I've been struggling with alot of symptoms for about half a year now, and right now I'm really trying to decide if I should play it safe and assume I have ME for now until I get some answers. I am not asking for a diagnosis though.

My symptoms are:

Fast heartbeat when standing up, sitting down, walking, bending down

Seeing Silver glittery sparkles after hot shower (since December)

Muffled ringing ear after bending over for 1 minute to pick something up (since march)

Muffled ringing ear after sexual activity (since march)

Dizziness with exertion (since march)

Phlegm when waking up in the morning (since march)

Headaches when waking up (since December)

Very exhausted during the day, feeling like I could always fall asleep (since February)

Unrefreshing sleep (since march)

Back and neck pain

Abdominal pain (since last October)

Hives, flushing, itching mouth, throat, and skin for the entirety of march that randomly disappeared at the end of march. Experienced one anaphylactic episode. My allergist mentioned MCAS and I'm currently on 2.5 mg of xyzal

I genuinely cannot find a way to figure out if I experience PEM no matter how hard I try but I'm very worried. I know the symptoms of PEM but I'm always in this constant state of exhaustion so I can't tell!

The very odd thing is that some things make me more exhausted than others, like I'm fully capable of having sex for 2+ hours and not feeling like im going to pass out, but if I stand up too fast I get out of breath and dizzy.

I can sleep 10 hours and still wake up tired

My exhaustion feels like a constant state of needing to fall asleep, thats my biggest symptom and concern.

I am not diagnosed, but right now my allergist thinks I have MCAS which is my only working diagnosis atm

I also think I could have POTS, ive noticed I get extremely winded when doing very small tasks such as walking, sweeping, standing up, sitting down, just very small things. And if I stand for too long I find myself getting lightheaded or dizzy.

I have noticed while in the shower I can get dizzy and I will see these silver sparkly eye floaters, especially if the shower is hot.

Today was weird though. Not to be too TMI but my partner knows I am ill and struggle doing alot of things, but they asked me if I felt okay enough to have sex. I said yes and well we had sex duh 😭

But the whole time while having sex even moving around and changing potions (while lying down) I didn't feel myself getting winded, exhausted, or even dizzy in the slightest.

I know that one thing about POTS is that symptoms can improve while sitting or lying down, so this is something that sticks out to me alot.

I'm pretty scared that I could have CFS, buf I want to know if fatigue is a symptom of MCAS as well. I know PEM is required to have CFS but I honestly can't tell if I have PEM because I'm always exhausted..

My exhaustion feels like I camt constantly fall asleep no matter how much sleep I get, I always feel so sleepy and fatigued no matter what. I struggle to stay awake during the day. Even coffee doesn't keep me up

Hi y'all, first in foremost I am not asking for a diagnosis here! I understand nobody here is a medical professional and they cannot diagnose me. I'm Just looking to share my symptoms and have a bit of support.

I'm 19 and have had a pretty big health decline within the past half year. Right now my only working diagnosis is a possibility of MCAS.

I have so many symptoms I'm not going to list all of them here, but some of them have lead me to believe I have POTS or even CFS.

Right now I will be honest my sleep is ver6 bad... I get 6 hours of sleep on a good day, typically falling asleep at 4am.. its bad i know. Its been like this for 4 months.

My symptoms are extreme fatigue, feeling like I could constantly fall asleep no matter what, being short of breath very easily (for example I hung up a Poster on my wall today and had to catch my breath afterwards) my heart rate gets pretty quick when I do simple things such as sit up quickly, cry, take a shower, or even just walking. Chest tightness, dizziness with exertion or when exposed to heat, ringing or muffled hearing with exertion or heat exposure, seeing silvery glitter like sparkles in my vision after exertion or heat exposure.

Its pretty rough right now and I'm really hoping I get answers soon.

I see my PCP on the 18th and want to being this up to her.

​

I am 19 and was pretty active and healthy most of my life, and despite being born prematurely and dealing with things like severe social anxiety and depression in the past I had finally broken through that and was coming into my own, but then I got sick last fall.

Right now I have 0 diagnosis for my current health problems, just a diagnosis of acid reflux and scoliosis.

But since I had very severe symptoms this year things have been so so rough, and every time I thought it couldn't get worse, it did. First was abdominal pain(now thought to be endo by my pcp), kidney infection, then chronic headaches, and then allergic reaction type symptoms that led to an anaphylactic episode in march, now I feel constantly tired and fatigued and my sleep is a mess. I also get dizzy spells and ear ringing when exposed to heat or overexertion.

When I was dealing with my kidney infection in November of last year and crying in pain on my dad's living room couch, he told me that I shouldn't be so sad and that I will face much worse things in the future. I was upset that he said that and brushed off his words, but I should've listened because he was right.

Right now I'm going to be 20 in 8 days and all I can think about is how much I don't want to live anymore. In my previous post I said my birthday was in 2 weeks because I've lost track of time due to being so depressed.

I feel so guilty for taking my health granted. I feel guilty for getting colds or infections and brushing it off as nothing not knowing it could disable me one day. I feel guilty for not wearing a mask and I feel guilty for not appreciating the days I had where I was healthy enough to run and enjoy nature.

I'm supposed to get my long distance partner from the airport tomorrow night, and usually I'd be so excited, I'd be happy and looking forward to it. But now all I can think of is how we won't get to go on very many dates due to my fatigue and pain, how I'm going to struggle to be physically intimate because I am tired and hurting all the time, how gross I feel for struggling to do things like shower or basic hygiene despite that being something I used to pride myself in, and how I feel hopeless and afraid of the world every single day.

I apologize for so much venting but I just feel so lost and hopeless. I've never ever been suicidal until my health started to decline, now I think about it daily.

I'm not excited for my birthday, I'm not excited for gifts, im not excited for presents or even a special dinner. I just want my health back.

I used to care for animals and I was also an artist and I played the gituar, I enjoyed hiking and urban exploration as well as photography. Now all I do is lie in bed exhausted and if I do too much I get a headache and i get dizzy.

I told my mom I was suicidal and she said "you need to suck it up and get used to it because life stops for no one" I just wanted to be comforted, not scolded. Maybe I should expect less because my mom has recently lost her mom and is struggling, but I just wanted comfort.

My dad learned I was feeling suicidal because my partner told him, and woke me up this morning telling me he would do his best to find insurance for me. I appreciate it, but I had begged him for help previously and unfortunately it took him learning that I want to die in order to take me seriously.

Being undiagnosed is like a constant spiral of worrying and then feeling reassured, then right back to worrying.

On one hand, I am not diagnosed so part of me thinks, hey maybe you're anemic like your sister, or maybe you have a thyroid issue since your mom has hashimoto's, or you have narcolepsy, maybe sleep apnea. It could be anything until I get the proper labs done. And that makes me feel a little hopeful for improvement

But on the other hand, my allergist already thinks I could have MCAS, which I've heard is comorbid with CFS, and my TSH leves were normal with testing, and my hemoglobin is 11.5, so Maybe I just have CFS and I will never feel better, and maybe I'll even deteriorate. And then all hope is lost

I already had a huge scare in march when the MCAS symptoms showed up. I had to get put on oxygen and was given so much epinephrine. I was covered in hives and i was red and itchy, I lost 20lbs because I couldn't eat, and I was so miserable.

Now those symptoms are gone as of march 27th, but I fear every day that I will get that bad again and maybe that time it won't go away.

I'm trying to work with my therapist who is chronically ill herself to focus on the present, but it is so so so hard when all I can think about is how terrifying the future might be, or how good the past was.

I know I could have it worse, but I am just miserable right now. Thanks for listening if you did, I wish you an easy day.

I've posted here about twice within this week because I'm working on trying to get through the denial I have of being ill.

I am 19 and was pretty active and healthy most of my life, and despite being born prematurely and dealing with things like severe social anxiety and depression in the past I had finally broken through that and was coming into my own, but then I got sick last fall.

Right now I have 0 diagnosis for my current health problems, just a diagnosis of acid reflux and scoliosis.

But since I had very severe symptoms this year things have been so so rough, and every time I thought it couldn't get worse, it did. First was abdominal pain(now thought to be endo by my pcp), kidney infection, then chronic headaches, and then allergic reaction type symptoms that led to an anaphylactic episode in march, now I feel constantly tired and fatigued and my sleep is a mess. I also get dizzy spells and ear ringing when exposed to heat or overexertion.

When I was dealing with my kidney infection in November of last year and crying in pain on my dad's living room couch, he told me that I shouldn't be so sad and that I will face much worse things in the future. I was upset that he said that and brushed off his words, but I should've listened because he was right.

Right now I'm going to be 20 in 8 days and all I can think about is how much I don't want to live anymore. In my previous post I said my birthday was in 2 weeks because I've lost track of time due to being so depressed.

I feel so guilty for taking my health granted. I feel guilty for getting colds or infections and brushing it off as nothing not knowing it could disable me one day. I feel guilty for not wearing a mask and I feel guilty for not appreciating the days I had where I was healthy enough to run and enjoy nature.

I'm supposed to get my long distance partner from the airport tomorrow night, and usually I'd be so excited, I'd be happy and looking forward to it. But now all I can think of is how we won't get to go on very many dates due to my fatigue and pain, how I'm going to struggle to be physically intimate because I am tired and hurting all the time, how gross I feel for struggling to do things like shower or basic hygiene despite that being something I used to pride myself in, and how I feel hopeless and afraid of the world every single day.

I apologize for so much venting but I just feel so lost and hopeless. I've never ever been suicidal until my health started to decline, now I think about it daily.

I'm not excited for my birthday, I'm not excited for gifts, im not excited for presents or even a special dinner. I just want my health back.

I used to care for animals and I was also an artist and I played the gituar, I enjoyed hiking and urban exploration as well as photography. Now all I do is lie in bed exhausted and if I do too much I get a headache and i get dizzy.

I told my mom I was suicidal and she said "you need to suck it up and get used to it because life stops for no one" I just wanted to be comforted, not scolded. Maybe I should expect less because my mom has recently lost her mom and is struggling, but I just wanted comfort.

My dad learned I was feeling suicidal because my partner told him, and woke me up this morning telling me he would do his best to find insurance for me. I appreciate it, but I had begged him for help previously and unfortunately it took him learning that I want to die in order to take me seriously.

Being undiagnosed is like a constant spiral of worrying and then feeling reassured, then right back to worrying.

On one hand, I am not diagnosed so part of me thinks, hey maybe you're anemic like your sister, or maybe you have a thyroid issue since your mom has hashimoto's, or you have narcolepsy, maybe sleep apnea. It could be anything until I get the proper labs done. And that makes me feel a little hopeful for improvement

But on the other hand, my allergist already thinks I could have MCAS, which I've heard is comorbid with CFS, and my TSH leves were normal with testing, and my hemoglobin is 11.5, so Maybe I just have CFS and I will never feel better, and maybe I'll even deteriorate. And then all hope is lost

I already had a huge scare in march when the MCAS symptoms showed up. I had to get put on oxygen and was given so much epinephrine. I was covered in hives and i was red and itchy, I lost 20lbs because I couldn't eat, and I was so miserable.

Now those symptoms are gone as of march 27th, but I fear every day that I will get that bad again and maybe that time it won't go away.

I'm trying to work with my therapist who is chronically ill herself to focus on the present, but it is so so so hard when all I can think about is how terrifying the future might be, or how good the past was.

I know I could have it worse, but I am just miserable right now. Thanks for listening if you did, I wish you an easy day.

My allergist said I could have MCAS but I am scared and in denial. Is there a definitive test to rule it out? Like a bone marrow test or something-? Right now I'm on xyzal and I seem okayish but idk.