I got sick in June 2022 the first time and once more in 2023. I already have ADHD, Depression and Anxiety but now things have gotten so bad I can't concentrate long enough, nor stand long enough to do any kind of work consistently.
My worst symptoms come and go and will last anywhere from 1 week to several months (and they seem to be getting worse with time, not better.) The symptoms are:
- Constant low fever (99.3~99.9)
- Exertion based fevers (over 100.2). Even just standing up can give me a fever.
- Excessive fatigue
- Severe brain fog (worse than pre-covid adhd brain fog)
- Hair loss
- Headache and increase in Migraines (I've had at least 20 since May, when i started keeping track)
- Shortness of breath
- Heat intolerance
- Stress intolerance
The accute symptoms are post-exertional, whether that's mental or physical. I have to lay down for the symptoms to lighten up. These symptoms started about 2 weeks after my first covid infection ended, which was itself very mild.
When these periods end I'm somewhat functional, except I still have fatigue, brain fog and memory trouble, near-constant low fever, and hair loss.
I lost my job in Feb 2023 primarily because I couldn't keep up anymore, and I can't handle the stress of job hunting for long enough to land one, and I don't know that I could keep it if I did.
I've had a million tests done to see what could be causing all this, (esp thyroid, since a lot of this sounds related) but my labs come back squeaky clean every time. I really don't know what to do. I wish everyone out there luck and wellness.
Yes. The symptoms you describe are not the same as mine, but in the end, many of us are stuck at home and unable to work thanks to Covid. Some of the responses resonate. I have not been able to work in over a year; I am close to retirement age, and have applied for disability.
I got Covid in 2020 - I did not have any respiratory issues. My symptoms were amnesia and fatigue. Long Covid started right away, with nerve pain, memory issues, and insomnia. Two years in I lost my appetite and lost 1/3 of my body weight. A year later I am gaining it back.
At times I have felt I am ‘over’ long Covid, but the reality in my case is covid has done serious neurological damage. In 2023 I had a seizure that got me hospitalized and diagnosed with Epilepsy. Turns out my initial Covid symptom - amnesia in 2020 - was actually a mild seizure. It took Covid 3 years to evolve from a memory lapse into Epilepsy. If you have problems with memory, sleep, nerve pain, balance, nearly falling, or fainting, see a Neurologist.
Keeping a log helps - it provides docs with excellent information to diagnose and treat. Covid symptoms are so different for so many people, focus on your issues - there is plenty of evidence out there linking Covid to ailments you describe.
I got COVID in October of 2020 just before the vaccine came out. After a couple months, I got so dizzy that I could hardly walk. I have steadily grown worse and now I can't walk without a walker and then only for short distances. I can't exercise well, so I have gained weight and that has made my knees hurt. I have been to all kinds of doctors and haven't gotten much help. But then no one knows how to cure the disease, so I don't blame them. I have tried to get into Mayo, but got rejected 3 times, but I did get into Cleveland Clinic and will go there in late November. There is no way I could work as I can't really concentrate all that well. Does anyone else suffer from dizziness and balance problems?
Oh yes. I have felt drunk for the last two plus years. I don’t use a walker, but I am very mindful as I walk, because I have fallen a couple times.
Like you I have seen many, many doctors who are clueless to help me.
Good luck at the Cleveland Clinic.
I got COVID in October of 2020 just before the vaccine came out. After a couple months, I got so dizzy that I could hardly walk. I have steadily grown worse and now I can't walk without a walker and then only for short distances. I can't exercise well, so I have gained weight and that has made my knees hurt. I have been to all kinds of doctors and haven't gotten much help. But then no one knows how to cure the disease, so I don't blame them. I have tried to get into Mayo, but got rejected 3 times, but I did get into Cleveland Clinic and will go there in late November. There is no way I could work as I can't really concentrate all that well. Does anyone else suffer from dizziness and balance problems?
I have a long list of LC symptoms since onset in Sep. 2020.
Of those, severe brain fog and dizziness remain in full force.
I have seen 'improvement' (none 100%) in many of my symptoms, through prescribed medication/physical/mental health therapies.
Though they all contribute, brain fog has been the primary debilitating symptom making work impossible. I have also had continual moderate to severe dizziness and balance issues. I do not use a walker. I have not yet fallen, though it was kind of iffy a few times in the shower. We have a shower chair to use when I'm feeling particularly unbalanced. If I'm walking in an open area I have room to weave. If in a more confined area there is usually a wall, chair, counter, railing... handy to grab, lean on to, slide down to the floor from, to keep my balance or me from falling. Trying to always be hyper focused on where my feet are going helps me avoid stumbling. I have had Hearing and Balance PT where I learned some tips and very low impact exercises and stretches to help be more mindful and intentional in my standing and walking, but saw no real improvement.
Before LC, I was in good health and regularly walking 3-7 miles a day. I have been unable, since, to walk long distances. Depending on the day, only a couple blocks to maybe a mile without Post Exertional Malaise (PEM) kicking in and wiping me out.
I have been fortunate to have a local Long COVID Recovery Clinic within 75 miles with a good team of medical staff to guide me through trial and error treatments to be my best possible self. I hope you will find the same at the Cleveland Clinic. More importantly, know you are not alone.
I have a long list of LC symptoms since onset in Sep. 2020.
Of those, severe brain fog and dizziness remain in full force.
I have seen 'improvement' (none 100%) in many of my symptoms, through prescribed medication/physical/mental health therapies.
Though they all contribute, brain fog has been the primary debilitating symptom making work impossible. I have also had continual moderate to severe dizziness and balance issues. I do not use a walker. I have not yet fallen, though it was kind of iffy a few times in the shower. We have a shower chair to use when I'm feeling particularly unbalanced. If I'm walking in an open area I have room to weave. If in a more confined area there is usually a wall, chair, counter, railing... handy to grab, lean on to, slide down to the floor from, to keep my balance or me from falling. Trying to always be hyper focused on where my feet are going helps me avoid stumbling. I have had Hearing and Balance PT where I learned some tips and very low impact exercises and stretches to help be more mindful and intentional in my standing and walking, but saw no real improvement.
Before LC, I was in good health and regularly walking 3-7 miles a day. I have been unable, since, to walk long distances. Depending on the day, only a couple blocks to maybe a mile without Post Exertional Malaise (PEM) kicking in and wiping me out.
I have been fortunate to have a local Long COVID Recovery Clinic within 75 miles with a good team of medical staff to guide me through trial and error treatments to be my best possible self. I hope you will find the same at the Cleveland Clinic. More importantly, know you are not alone.
We have a lot of things in common. I walked quite a bit and was an avid night time Milky Way photographer. I especially liked to go to Utah out in the desert or other back areas and photograph. But COVID has halted that. No way could I walk around at night looking up and photographing the night skies. I have to use some sort of support for any kind of distance like 50 feet. I use a cane or walker generally. Oddly I had never fallen although I felt like I was going to many times.
I got COVID in October of 2020 just before the vaccine came out. After a couple months, I got so dizzy that I could hardly walk. I have steadily grown worse and now I can't walk without a walker and then only for short distances. I can't exercise well, so I have gained weight and that has made my knees hurt. I have been to all kinds of doctors and haven't gotten much help. But then no one knows how to cure the disease, so I don't blame them. I have tried to get into Mayo, but got rejected 3 times, but I did get into Cleveland Clinic and will go there in late November. There is no way I could work as I can't really concentrate all that well. Does anyone else suffer from dizziness and balance problems?
Yes, my symptoms actually started 2011 after a resp. Infection, Improved but not back to normal. Same in 2019, improved but less than 2011. Got Covid & pneumonia in Nov. ‘21. Exhausted, dizzy, can’t walk far because of shortness of breath and fall frequently. Rheumatologist diagnosed me with CFS (since 2011) following respiratory infection and of course long Covid is the mother of respiratory symptoms. Just so very tired. Sleep up to 12 hours/day but much better than 20 hrs. when I had first had Covid.
We have a lot of things in common. I walked quite a bit and was an avid night time Milky Way photographer. I especially liked to go to Utah out in the desert or other back areas and photograph. But COVID has halted that. No way could I walk around at night looking up and photographing the night skies. I have to use some sort of support for any kind of distance like 50 feet. I use a cane or walker generally. Oddly I had never fallen although I felt like I was going to many times.
I can only imagine how much you miss your previous you. My daughter loves the night sky! It is so beautiful. It’s expanse gives wonder to life.
Brain Fog:
Journal Entries to give you my own words as I described them along the way…
10/4/2020
Sunday was one of my worst days. Struggled to breathe all day. Yesterday was better than Sunday. Brain in a fog - very hard to focus. Still in bed now, head swimming, chest pressure/pain, yada, yada...
10/29/2020
I’m really thinking the “brain fog” thing is a real thing. My therapist said that last week she didn’t want to freak me out, but she noticed I was missing words when I was talking to her. She knew the thoughts were there, but when I tried to put them into sentences, I missed saying some words.
3/3/2021
Traffic was slow-going down State St/HWY 44 to Middleton/I-84. So slow, I was sincerely surprised when I got to Middleton thinking I already had driven through it. :O
8/25/2021 [My definition]
“Brain Fog” - inability to focus and stay on point with regular tasks of daily living. (I am a writer and haven’t been able to write anything new in almost a year [now 4] and sometimes it can take an hour or two just to cognitively read through an article…)
12/2/2021
Brain fog has affected my ability to accurately process bookkeeping functions for our e-commerce business (selling hobby greenhouse kits). My errors have cost us at least $10,000 since symptom onset.
3/4/2022
The worst part for me with the brain fog (only one of my many persistent symptoms), is that in the moment I think I’m doing [the task] well and then later find I missed steps in the process. IE: Toasting air because I forgot to actually put the bread into the toaster before turning it on; forgetting to process a customer’s payment - to the tune of $3000+ - before shipping out product. Sometimes discovering the error a year later and then having to go through legal channels to collect… things like that. Very frustrating for someone with OCD tendencies and a stickler for details! I feel I’m letting people down, including myself.
5/8/2024
Brain Fog has led me to continually make costly errors in our business operations. While I have seen great improvement in the majority of the cardiopulmonary symptoms, Brain Fog remains the most debilitating. Yesterday, I couldn't even remember what 9 x 7 equals nor the process to figure it out. It was the unlock to parental controls for YouTubeKids :/ Everyone advises me to "write things down so you won't forget". The problem is, in the time it would take to find something to write "it" down on, "it" is long forgotten. Literally seconds from thought in and out. My husband may ask me what I'm doing, and my response is often, "I'm wandering". I can't count the times in a day I'm staring into the refrigerator or cabinet trying to figure out why. I eventually do, but the process takes up so much time, my days are far from efficient or productive. I struggle to have an intelligent conversation because I'm always searching for the proper words. IE:"You know, that actor who was in that movie about, you know. He was also in that movie with that actress, you know, who was in that show..." And so it goes. Every time I turn around another week [month, year] has passed, in which I rarely knew what day it was. I have absolutely no concept of time. In general, thinking is exhausting.
Yes. The symptoms you describe are not the same as mine, but in the end, many of us are stuck at home and unable to work thanks to Covid. Some of the responses resonate. I have not been able to work in over a year; I am close to retirement age, and have applied for disability.
I got Covid in 2020 - I did not have any respiratory issues. My symptoms were amnesia and fatigue. Long Covid started right away, with nerve pain, memory issues, and insomnia. Two years in I lost my appetite and lost 1/3 of my body weight. A year later I am gaining it back.
At times I have felt I am ‘over’ long Covid, but the reality in my case is covid has done serious neurological damage. In 2023 I had a seizure that got me hospitalized and diagnosed with Epilepsy. Turns out my initial Covid symptom - amnesia in 2020 - was actually a mild seizure. It took Covid 3 years to evolve from a memory lapse into Epilepsy. If you have problems with memory, sleep, nerve pain, balance, nearly falling, or fainting, see a Neurologist.
Keeping a log helps - it provides docs with excellent information to diagnose and treat. Covid symptoms are so different for so many people, focus on your issues - there is plenty of evidence out there linking Covid to ailments you describe.
It turned out I have ET, Essential Thrombocytosis, a form of chronic leukemia AND POTS, Postural Orthostatic Tachycardia Syndrome.
Might I suggest seeing a doc who is a great diagnostisn and runs all kinds of tests. For 2 yrs I suffered at home without the correct diagnoses!
So many illnesses have common features that it’s important to keep checking.
Don’t let any doctor tell you it’s in your head - you know when something is wrong!
Good luck and don’t get discouraged.
Yes. The symptoms you describe are not the same as mine, but in the end, many of us are stuck at home and unable to work thanks to Covid. Some of the responses resonate. I have not been able to work in over a year; I am close to retirement age, and have applied for disability.
I got Covid in 2020 - I did not have any respiratory issues. My symptoms were amnesia and fatigue. Long Covid started right away, with nerve pain, memory issues, and insomnia. Two years in I lost my appetite and lost 1/3 of my body weight. A year later I am gaining it back.
At times I have felt I am ‘over’ long Covid, but the reality in my case is covid has done serious neurological damage. In 2023 I had a seizure that got me hospitalized and diagnosed with Epilepsy. Turns out my initial Covid symptom - amnesia in 2020 - was actually a mild seizure. It took Covid 3 years to evolve from a memory lapse into Epilepsy. If you have problems with memory, sleep, nerve pain, balance, nearly falling, or fainting, see a Neurologist.
Keeping a log helps - it provides docs with excellent information to diagnose and treat. Covid symptoms are so different for so many people, focus on your issues - there is plenty of evidence out there linking Covid to ailments you describe.
I have Post Vaccination Syndrome (PVS). Have never had Covid but was injured by the jab. Primary symptom is severe, debilitating weakness. I can barely walk. Shuffle across the floor without lifting my feet and support myself against the walls. My muscles are atrophied and my heart is weak. Found relief with Plavix and Nattokinase but the relief was temporary. No one here in the province of New Brunswick, Canada has any idea how to help. In fact, Canada is a wasteland in treating PVS. Am resigned to slowly fading away unless I can find help.
I got sick in June 2022 the first time and once more in 2023. I already have ADHD, Depression and Anxiety but now things have gotten so bad I can't concentrate long enough, nor stand long enough to do any kind of work consistently.
My worst symptoms come and go and will last anywhere from 1 week to several months (and they seem to be getting worse with time, not better.) The symptoms are:
- Constant low fever (99.3~99.9)
- Exertion based fevers (over 100.2). Even just standing up can give me a fever.
- Excessive fatigue
- Severe brain fog (worse than pre-covid adhd brain fog)
- Hair loss
- Headache and increase in Migraines (I've had at least 20 since May, when i started keeping track)
- Shortness of breath
- Heat intolerance
- Stress intolerance
The accute symptoms are post-exertional, whether that's mental or physical. I have to lay down for the symptoms to lighten up. These symptoms started about 2 weeks after my first covid infection ended, which was itself very mild.
When these periods end I'm somewhat functional, except I still have fatigue, brain fog and memory trouble, near-constant low fever, and hair loss.
I lost my job in Feb 2023 primarily because I couldn't keep up anymore, and I can't handle the stress of job hunting for long enough to land one, and I don't know that I could keep it if I did.
I've had a million tests done to see what could be causing all this, (esp thyroid, since a lot of this sounds related) but my labs come back squeaky clean every time. I really don't know what to do. I wish everyone out there luck and wellness.
Hello Akamaki,
Firstly, I’m sorry I took so long to reply. I too am very ill with LC. so, I’ve been sleeping mostly since last CHAT on here.
Your story is so close to my story. Except I don’t get migraines but have several other additions to my symptoms but all the same way. I started in 2020 with Covid 1, a few symptoms stuck with me, 2/2021 Covid 2, then everything started to hit. Like you, mine gets worse over time, not better. I’m getting everybody’s story for my Drs and now I think SSDI as well. I filed in Feb this year. Just got 4 more envelopes requesting more medical info and employment (things I did and what I could do now). We all know that even a simple job of, I will say greeter at a store. I couldn’t stand or sit for that. I saw you also have heat intolerance, as do I terribly. I have my air on 24/7. Set now at 64. I will increase as high as 66, but that’s too warm
usually. I will actually sweat profusely, get dizzy and nauseous then vomit when warm. Office at Drs that keep it like 70 kill me. I have turned around and rescheduled for 1st appt next visit so I can get out quickly. It’s a terrible feeling.
I want to thank you for helping and I want to encourage others that are having Dr issues or others that don’t believe or understand, make a log of our stories. Show it. My Dr was actually interested. 🤗
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I got sick in June 2022 the first time and once more in 2023. I already have ADHD, Depression and Anxiety but now things have gotten so bad I can't concentrate long enough, nor stand long enough to do any kind of work consistently.
My worst symptoms come and go and will last anywhere from 1 week to several months (and they seem to be getting worse with time, not better.) The symptoms are:
- Constant low fever (99.3~99.9)
- Exertion based fevers (over 100.2). Even just standing up can give me a fever.
- Excessive fatigue
- Severe brain fog (worse than pre-covid adhd brain fog)
- Hair loss
- Headache and increase in Migraines (I've had at least 20 since May, when i started keeping track)
- Shortness of breath
- Heat intolerance
- Stress intolerance
The accute symptoms are post-exertional, whether that's mental or physical. I have to lay down for the symptoms to lighten up. These symptoms started about 2 weeks after my first covid infection ended, which was itself very mild.
When these periods end I'm somewhat functional, except I still have fatigue, brain fog and memory trouble, near-constant low fever, and hair loss.
I lost my job in Feb 2023 primarily because I couldn't keep up anymore, and I can't handle the stress of job hunting for long enough to land one, and I don't know that I could keep it if I did.
I've had a million tests done to see what could be causing all this, (esp thyroid, since a lot of this sounds related) but my labs come back squeaky clean every time. I really don't know what to do. I wish everyone out there luck and wellness.
Yes. The symptoms you describe are not the same as mine, but in the end, many of us are stuck at home and unable to work thanks to Covid. Some of the responses resonate. I have not been able to work in over a year; I am close to retirement age, and have applied for disability.
I got Covid in 2020 - I did not have any respiratory issues. My symptoms were amnesia and fatigue. Long Covid started right away, with nerve pain, memory issues, and insomnia. Two years in I lost my appetite and lost 1/3 of my body weight. A year later I am gaining it back.
At times I have felt I am ‘over’ long Covid, but the reality in my case is covid has done serious neurological damage. In 2023 I had a seizure that got me hospitalized and diagnosed with Epilepsy. Turns out my initial Covid symptom - amnesia in 2020 - was actually a mild seizure. It took Covid 3 years to evolve from a memory lapse into Epilepsy. If you have problems with memory, sleep, nerve pain, balance, nearly falling, or fainting, see a Neurologist.
Keeping a log helps - it provides docs with excellent information to diagnose and treat. Covid symptoms are so different for so many people, focus on your issues - there is plenty of evidence out there linking Covid to ailments you describe.
Good luck to all.
-
Like -
Helpful -
Hug
1 ReactionOh yes. I have felt drunk for the last two plus years. I don’t use a walker, but I am very mindful as I walk, because I have fallen a couple times.
Like you I have seen many, many doctors who are clueless to help me.
Good luck at the Cleveland Clinic.
I have a long list of LC symptoms since onset in Sep. 2020.
Of those, severe brain fog and dizziness remain in full force.
I have seen 'improvement' (none 100%) in many of my symptoms, through prescribed medication/physical/mental health therapies.
Though they all contribute, brain fog has been the primary debilitating symptom making work impossible. I have also had continual moderate to severe dizziness and balance issues. I do not use a walker. I have not yet fallen, though it was kind of iffy a few times in the shower. We have a shower chair to use when I'm feeling particularly unbalanced. If I'm walking in an open area I have room to weave. If in a more confined area there is usually a wall, chair, counter, railing... handy to grab, lean on to, slide down to the floor from, to keep my balance or me from falling. Trying to always be hyper focused on where my feet are going helps me avoid stumbling. I have had Hearing and Balance PT where I learned some tips and very low impact exercises and stretches to help be more mindful and intentional in my standing and walking, but saw no real improvement.
Before LC, I was in good health and regularly walking 3-7 miles a day. I have been unable, since, to walk long distances. Depending on the day, only a couple blocks to maybe a mile without Post Exertional Malaise (PEM) kicking in and wiping me out.
I have been fortunate to have a local Long COVID Recovery Clinic within 75 miles with a good team of medical staff to guide me through trial and error treatments to be my best possible self. I hope you will find the same at the Cleveland Clinic. More importantly, know you are not alone.
We have a lot of things in common. I walked quite a bit and was an avid night time Milky Way photographer. I especially liked to go to Utah out in the desert or other back areas and photograph. But COVID has halted that. No way could I walk around at night looking up and photographing the night skies. I have to use some sort of support for any kind of distance like 50 feet. I use a cane or walker generally. Oddly I had never fallen although I felt like I was going to many times.
Describe what you mean by "brain fog".
-
Like -
Helpful -
Hug
1 ReactionYes, my symptoms actually started 2011 after a resp. Infection, Improved but not back to normal. Same in 2019, improved but less than 2011. Got Covid & pneumonia in Nov. ‘21. Exhausted, dizzy, can’t walk far because of shortness of breath and fall frequently. Rheumatologist diagnosed me with CFS (since 2011) following respiratory infection and of course long Covid is the mother of respiratory symptoms. Just so very tired. Sleep up to 12 hours/day but much better than 20 hrs. when I had first had Covid.
I can only imagine how much you miss your previous you. My daughter loves the night sky! It is so beautiful. It’s expanse gives wonder to life.
Brain Fog:
Journal Entries to give you my own words as I described them along the way…
10/4/2020
Sunday was one of my worst days. Struggled to breathe all day. Yesterday was better than Sunday. Brain in a fog - very hard to focus. Still in bed now, head swimming, chest pressure/pain, yada, yada...
10/29/2020
I’m really thinking the “brain fog” thing is a real thing. My therapist said that last week she didn’t want to freak me out, but she noticed I was missing words when I was talking to her. She knew the thoughts were there, but when I tried to put them into sentences, I missed saying some words.
3/3/2021
Traffic was slow-going down State St/HWY 44 to Middleton/I-84. So slow, I was sincerely surprised when I got to Middleton thinking I already had driven through it. :O
8/25/2021 [My definition]
“Brain Fog” - inability to focus and stay on point with regular tasks of daily living. (I am a writer and haven’t been able to write anything new in almost a year [now 4] and sometimes it can take an hour or two just to cognitively read through an article…)
12/2/2021
Brain fog has affected my ability to accurately process bookkeeping functions for our e-commerce business (selling hobby greenhouse kits). My errors have cost us at least $10,000 since symptom onset.
3/4/2022
The worst part for me with the brain fog (only one of my many persistent symptoms), is that in the moment I think I’m doing [the task] well and then later find I missed steps in the process. IE: Toasting air because I forgot to actually put the bread into the toaster before turning it on; forgetting to process a customer’s payment - to the tune of $3000+ - before shipping out product. Sometimes discovering the error a year later and then having to go through legal channels to collect… things like that. Very frustrating for someone with OCD tendencies and a stickler for details! I feel I’m letting people down, including myself.
5/8/2024
Brain Fog has led me to continually make costly errors in our business operations. While I have seen great improvement in the majority of the cardiopulmonary symptoms, Brain Fog remains the most debilitating. Yesterday, I couldn't even remember what 9 x 7 equals nor the process to figure it out. It was the unlock to parental controls for YouTubeKids :/ Everyone advises me to "write things down so you won't forget". The problem is, in the time it would take to find something to write "it" down on, "it" is long forgotten. Literally seconds from thought in and out. My husband may ask me what I'm doing, and my response is often, "I'm wandering". I can't count the times in a day I'm staring into the refrigerator or cabinet trying to figure out why. I eventually do, but the process takes up so much time, my days are far from efficient or productive. I struggle to have an intelligent conversation because I'm always searching for the proper words. IE:"You know, that actor who was in that movie about, you know. He was also in that movie with that actress, you know, who was in that show..." And so it goes. Every time I turn around another week [month, year] has passed, in which I rarely knew what day it was. I have absolutely no concept of time. In general, thinking is exhausting.
-
Like -
Helpful -
Hug
1 ReactionI thought all my weird symptoms were LC.
It turned out I have ET, Essential Thrombocytosis, a form of chronic leukemia AND POTS, Postural Orthostatic Tachycardia Syndrome.
Might I suggest seeing a doc who is a great diagnostisn and runs all kinds of tests. For 2 yrs I suffered at home without the correct diagnoses!
So many illnesses have common features that it’s important to keep checking.
Don’t let any doctor tell you it’s in your head - you know when something is wrong!
Good luck and don’t get discouraged.
I have Post Vaccination Syndrome (PVS). Have never had Covid but was injured by the jab. Primary symptom is severe, debilitating weakness. I can barely walk. Shuffle across the floor without lifting my feet and support myself against the walls. My muscles are atrophied and my heart is weak. Found relief with Plavix and Nattokinase but the relief was temporary. No one here in the province of New Brunswick, Canada has any idea how to help. In fact, Canada is a wasteland in treating PVS. Am resigned to slowly fading away unless I can find help.
-
Like -
Helpful -
Hug
1 ReactionHello Akamaki,
Firstly, I’m sorry I took so long to reply. I too am very ill with LC. so, I’ve been sleeping mostly since last CHAT on here.
Your story is so close to my story. Except I don’t get migraines but have several other additions to my symptoms but all the same way. I started in 2020 with Covid 1, a few symptoms stuck with me, 2/2021 Covid 2, then everything started to hit. Like you, mine gets worse over time, not better. I’m getting everybody’s story for my Drs and now I think SSDI as well. I filed in Feb this year. Just got 4 more envelopes requesting more medical info and employment (things I did and what I could do now). We all know that even a simple job of, I will say greeter at a store. I couldn’t stand or sit for that. I saw you also have heat intolerance, as do I terribly. I have my air on 24/7. Set now at 64. I will increase as high as 66, but that’s too warm
usually. I will actually sweat profusely, get dizzy and nauseous then vomit when warm. Office at Drs that keep it like 70 kill me. I have turned around and rescheduled for 1st appt next visit so I can get out quickly. It’s a terrible feeling.
I want to thank you for helping and I want to encourage others that are having Dr issues or others that don’t believe or understand, make a log of our stories. Show it. My Dr was actually interested. 🤗