i'm a 75 yr. old female; used to live in houston for 30 yrs. and an acquaintance told me about this website which i read several times a day..have been on mercapturine (6mp) which is a chemo drug since 2002 to keep my crohns/ulcerative colitis in remission. also bipolar 2 (hypomania/no depression) and take 3rx to sleep. hubby and i contracted virus in dec. 2020; quarantine was easy and i was asymptomatic til i lost taste/smell. have worked out daily for about 35 yrs. and in relatively good health...take many of those great supplements and rode my spin bike at home during quarantine...got the 2 moderna vaccines when developed; 2 mo. post-covid, i've become a long hauler which means i have lingering symptoms; i have energy in the am to still work out hard but insomnia is horrible and some of the meds i've taken in the past now have opposite effect and my dizziness/helium head starts at 2pm til bedtime now going on 7 mo. i've recently gotten the booster because i'm immunocompromised. blood work is normal and neurology appt. was worthless; neuro didn't prescribe m r i, ct scan, etc. but suggested other ntidepressants to possibly help w/insomnia tho when i researched, they indicated they might trigger more mania so didn't ask my psych nurse to prescribe what neuro suggested. i read as much as i can on another website from other long haulers who have kidney/lung/heart and so many other symptoms that i'm grateful i have the symptoms that i have! so my questions are, and realize no one has a crystal ball: 1) do i need to mask up when going to grocery/costco? i don't mask up walking into/leaving restaurants and we eat indoors most of the time; and 2) will my long haul symptoms ever dissipate due to my immune system being compromised for probably 55 years? would appreciate any input any of you might have.
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WOULD LIKE ONE OR MORE OF THE DR./NURSES TO RESPOND PLEASE
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Last: 3 yr ago by Petrino1
I think you should have this discussion with your primary care provider.
They will have the best idea of your personal situation, considering it is a bit more complicated in that you are on an immunosuppressant.
They will have the best idea of your personal situation, considering it is a bit more complicated in that you are on an immunosuppressant.
thanks for your reply: i just want to point out that i got the long haul symptoms BEFORE GETTING THE 2 MODERNA VACCINES and recently the booster. i assume your advice/input remains the same whether it was the virus rather than vaccines which have given me long haul symptoms.
trnrmom said:
thanks for your reply: i just want to point out that i got the long haul symptoms BEFORE GETTING THE 2 MODERNA VACCINES and recently the booster. i assume your advice/input remains the same whether it was the virus rather than vaccines which have given me long haul symptoms.
Seriously, talk to your primary care physician or go get one and talk to them.
Same advice on the mask, if you are not wearing it to eat but wondering if walking around Costco is safe there really isn't a difference so if you dont wamt to wear it then don't. Highly unlikely you would get covid again with natural immunity and 3 shots.
As far as the long haul sound bad and I dont have advice only thing I have heard is for some people it subsides but nothing to offer you
As far as the long haul sound bad and I dont have advice only thing I have heard is for some people it subsides but nothing to offer you
First, I'm so sorry you're suffering through all this. It sounds like you have a lot on your plate. I'm not sure TexAgs is really the best place for help, though. There are doctors who post here, but I'm afraid they won't really be able to help you because they don't know all your history and stuff.trnrmom said:
thanks for your reply: i just want to point out that i got the long haul symptoms BEFORE GETTING THE 2 MODERNA VACCINES and recently the booster. i assume your advice/input remains the same whether it was the virus rather than vaccines which have given me long haul symptoms.
I do really appreciate you clearing up the mistake that guy made assuming you got your long-haul symptoms from the vaccine. There are a lot of people who like to blame vaccines for all kinds of things. It's interesting that they don't really blame the covid. Long-Covid is no fun. I have some friends who struggle with it, and they don't have anything like your health problems before.
I hope you can get a doctor to sit down and go over all your meds and review everything. It sounds like maybe you need some fresh eyes to take a look at everything to see if you have going on to see if there's something they can do to help.
If I’m posting, it’s actually Mrs GeographyAg.
Mr. GeographyAg is a dedicated lurker.
Mr. GeographyAg is a dedicated lurker.
thank you for your empathetic response; i've got a primary dr. and saw a neurologist once who either was not informed about long haul symptoms or felt my neurological issues weren't as bad as possibly other long haulers he may have treated. i am part of a f/b long hauler group; my god: my symptoms are so minor compared to the others yet my symptoms have been life-altering for me as well as for my husband. i applied for being part of a naturopathic research study but because i'm 75, i didn't qualify. i realize i may never recover and may have to adjust/accept my new `abnormal normal' like many thousands of others who've been impacted by this virus...and i realize there's no magic bullet or one-size fits all solution...
trnrmom. I'm not a doctor nor have medical advice and all I can offer is prayers on your behalf and an encouragement to keep hope that things will get better. There are good days ahead.
I'm praying for you and the other long-haulers. Hopefully time will help with healing, and hopefully they'll begin to develop better treatments for long-haul symptoms in the days ahead.trnrmom said:
thank you for your empathetic response; i've got a primary dr. and saw a neurologist once who either was not informed about long haul symptoms or felt my neurological issues weren't as bad as possibly other long haulers he may have treated. i am part of a f/b long hauler group; my god: my symptoms are so minor compared to the others yet my symptoms have been life-altering for me as well as for my husband. i applied for being part of a naturopathic research study but because i'm 75, i didn't qualify. i realize i may never recover and may have to adjust/accept my new `abnormal normal' like many thousands of others who've been impacted by this virus...and i realize there's no magic bullet or one-size fits all solution...
If I’m posting, it’s actually Mrs GeographyAg.
Mr. GeographyAg is a dedicated lurker.
Mr. GeographyAg is a dedicated lurker.
Be very VERY careful of anything you read on the internet. That includes TexAgs.
Seems some form of dizziness is a long term symptom for a lot of people. For this, skip the primary care doctor, ENT, and neurologist. Find a neuro-otologist in one of the large cities. If you aren't happy with them, find another one.
I am not trying to diagnose people but you might google PPPD.
I am not trying to diagnose people but you might google PPPD.
thanks for the suggestions: i live in scottsdale so maybe i can find that specialist here or in phoenix.
We have over 30 studies showing masks don't work for airborne viruses, Covid, is no different.
WestGalvestonAggie said:
Be very VERY careful of anything you read on the internet. That includes TexAgs.
if anything, be extra careful of what you read here. there's good information here, but there's also a lot of misinformation asserted very confidently.
OP, first of all I'm sorry you're dealing with this. I can share my personal experience as I'm a covid long hauler (16 months) as well.
Ive had covid long haul symptoms for 16 months, typical symptoms are feverish feeling, ear aches, chills, warm ness feeling, muscle aches, leg pain, fatigue, brain fog. I got the second pfizer vaccine 5 months ago and ever since then my long haul symptoms got much worse. Now I have dizzy/light headed spells and sharp forearm pain almost everyday.
In my opinion, the vaccine is what caused my symptoms to become worse. I used to have periods where I would feel fine for a week then sick for a week. But ever since I got the vaccine I pretty much feel sick daily. Unfortunately there's not much doctors can do to treat this. Heck, you probably (for sure) know more about covid long haul than your PCP or neurologist does. I took ivermectin and it was the only thing that helped relieve my symptoms, but the symptoms returned after I stopped taking it.
The good news is that this won't last forever. It seems as if most long haulers feel better after 9-12 months, and the second group recovers after 16-18 months. I hope yours is the former. You're not contagious so I don't think masks will do much for you. Also, I have a feeling that It's very hard to catch covid again as a long hauler since we are still experiencing symptoms.
I know it's hard but try and live as normal of a life as you can. Don't let this overtake your life. Exercise, get sun light, drink plenty of water, maybe look into CBD (or THC) to help the insomnia, do hobbies, be around family and friends, travel If you can. You will get through this!
Ive had covid long haul symptoms for 16 months, typical symptoms are feverish feeling, ear aches, chills, warm ness feeling, muscle aches, leg pain, fatigue, brain fog. I got the second pfizer vaccine 5 months ago and ever since then my long haul symptoms got much worse. Now I have dizzy/light headed spells and sharp forearm pain almost everyday.
In my opinion, the vaccine is what caused my symptoms to become worse. I used to have periods where I would feel fine for a week then sick for a week. But ever since I got the vaccine I pretty much feel sick daily. Unfortunately there's not much doctors can do to treat this. Heck, you probably (for sure) know more about covid long haul than your PCP or neurologist does. I took ivermectin and it was the only thing that helped relieve my symptoms, but the symptoms returned after I stopped taking it.
The good news is that this won't last forever. It seems as if most long haulers feel better after 9-12 months, and the second group recovers after 16-18 months. I hope yours is the former. You're not contagious so I don't think masks will do much for you. Also, I have a feeling that It's very hard to catch covid again as a long hauler since we are still experiencing symptoms.
I know it's hard but try and live as normal of a life as you can. Don't let this overtake your life. Exercise, get sun light, drink plenty of water, maybe look into CBD (or THC) to help the insomnia, do hobbies, be around family and friends, travel If you can. You will get through this!
welcome to my world in spite of the fact that you have/had many more symptoms than i have; i have m/j dummies for insomnia but use them in afternoon for my high level anxiety and then take my 3rx to get maybe 7 hrs. of sleep; agree: most drs. are just learning about these long haul symptoms but you at least give me a hint of hope that maybe in more time they'll dissipate. i live in az. so i get plenty of sun, and have the energy to work out at our club 6x/week; gonna go back to my ent and maybe, just maybe, he can help w/dizziness/helium head which only starts at 2pm til bedtime. thanks for your response and i wish you a full recovery. patience runs out by end of day on many occasions but i'm very in touch w/my health and how i feel. only another long hauler or a professional who's beginning to understand what we're going thru might `get it'.ea1060 said:
OP, first of all I'm sorry you're dealing with this. I can share my personal experience as I'm a covid long hauler (16 months) as well.
Ive had covid long haul symptoms for 16 months, typical symptoms are feverish feeling, ear aches, chills, warm ness feeling, muscle aches, leg pain, fatigue, brain fog. I got the second pfizer vaccine 5 months ago and ever since then my long haul symptoms got much worse. Now I have dizzy/light headed spells and sharp forearm pain almost everyday.
In my opinion, the vaccine is what caused my symptoms to become worse. I used to have periods where I would feel fine for a week then sick for a week. But ever since I got the vaccine I pretty much feel sick daily. Unfortunately there's not much doctors can do to treat this. Heck, you probably (for sure) know more about covid long haul than your PCP or neurologist does. I took ivermectin and it was the only thing that helped relieve my symptoms, but the symptoms returned after I stopped taking it.
The good news is that this won't last forever. It seems as if most long haulers feel better after 9-12 months, and the second group recovers after 16-18 months. I hope yours is the former. You're not contagious so I don't think masks will do much for you. Also, I have a feeling that It's very hard to catch covid again as a long hauler since we are still experiencing symptoms.
I know it's hard but try and live as normal of a life as you can. Don't let this overtake your life. Exercise, get sun light, drink plenty of water, maybe look into CBD (or THC) to help the insomnia, do hobbies, be around family and friends, travel If you can. You will get through this!
trnrmom said:welcome to my world in spite of the fact that you have/had many more symptoms than i have; i have m/j dummies for insomnia but use them in afternoon for my high level anxiety and then take my 3rx to get maybe 7 hrs. of sleep; agree: most drs. are just learning about these long haul symptoms but you at least give me a hint of hope that maybe in more time they'll dissipate. i live in az. so i get plenty of sun, and have the energy to work out at our club 6x/week; gonna go back to my ent and maybe, just maybe, he can help w/dizziness/helium head which only starts at 2pm til bedtime. thanks for your response and i wish you a full recovery. patience runs out by end of day on many occasions but i'm very in touch w/my health and how i feel. only another long hauler or a professional who's beginning to understand what we're going thru might `get it'.ea1060 said:
OP, first of all I'm sorry you're dealing with this. I can share my personal experience as I'm a covid long hauler (16 months) as well.
Ive had covid long haul symptoms for 16 months, typical symptoms are feverish feeling, ear aches, chills, warm ness feeling, muscle aches, leg pain, fatigue, brain fog. I got the second pfizer vaccine 5 months ago and ever since then my long haul symptoms got much worse. Now I have dizzy/light headed spells and sharp forearm pain almost everyday.
In my opinion, the vaccine is what caused my symptoms to become worse. I used to have periods where I would feel fine for a week then sick for a week. But ever since I got the vaccine I pretty much feel sick daily. Unfortunately there's not much doctors can do to treat this. Heck, you probably (for sure) know more about covid long haul than your PCP or neurologist does. I took ivermectin and it was the only thing that helped relieve my symptoms, but the symptoms returned after I stopped taking it.
The good news is that this won't last forever. It seems as if most long haulers feel better after 9-12 months, and the second group recovers after 16-18 months. I hope yours is the former. You're not contagious so I don't think masks will do much for you. Also, I have a feeling that It's very hard to catch covid again as a long hauler since we are still experiencing symptoms.
I know it's hard but try and live as normal of a life as you can. Don't let this overtake your life. Exercise, get sun light, drink plenty of water, maybe look into CBD (or THC) to help the insomnia, do hobbies, be around family and friends, travel If you can. You will get through this!
Yes, unfortunately a lot of doctors think it's all in your head or that It's all psychosomatic. I have a PCP who is very caring and understanding of my covid long haul, but has yet to come up with an effective treatment for it. We are doing blood work next week to see if I have any deficiencies.
I can empathize with your dizziness. It is the absolute worst and really affects your entire day. It's almost impossible to work or get anything done when you feel dizzy the entire time. It really sucks.
Keep us posted about your recovery and I will do the same. Let me know if you find anything that works for you!
I know it's hard because I live it but try not to totally dismiss the "in your head" aspect. It's not that you're imagining it but there can definitely be a link between anxiety/ stress and physical symptoms. Being overly "in touch" and constantly analyzing your symptoms might actually make things worse. My brain fog/ dizziness absolutely gets measurably better when I am heavily distracted. I first realized this when I had to run my wife to the ER one day. I went from barely able to drive to feeling almost completely normal in 15 minutes.
These issues tend to be more common in type A introverts and analytical types which is me for sure. I'm currently on a minimal dose of sertraline. It definitely helps but they don't know why. There's just so much that we don't know about the brain.
Again, I can't stress enough to find a neuro-otologist for your dizziness concerns. I literally saw 30+ ENTs, neurologists, etc with zero help.
These issues tend to be more common in type A introverts and analytical types which is me for sure. I'm currently on a minimal dose of sertraline. It definitely helps but they don't know why. There's just so much that we don't know about the brain.
Again, I can't stress enough to find a neuro-otologist for your dizziness concerns. I literally saw 30+ ENTs, neurologists, etc with zero help.
going to see e n t in nov.; don't think my medicare/aarp ins. covers that neuro ontologist; at least i get a few hrs. in the morning w/o dizziness if i get some decent sleep (medicated w/3rx and great pre-bed hygiene); am hoping maybe time...more time..might be the answer. early on when driving i feared i'd be pulled over for a dui; don't drink alcohol; take tons of supplements and distract as much as i can...at times it's overwhelming and only those people who are long haulers truly understand the magnitude of how this virus has impacted our health and mental well being...because i haven't changed on the outside, people just think i'm ok. if they only knew but most people don't want to hear others' problems; this virus has impacted each and every one of us on some level.
I was just wondering for those long haulers on this thread, does daily exercise have any impact on your symptoms, good or bad, or does it not make any difference?
Being distracted or not at work doesnt really matter for my symptoms. I get them regardless.CS78 said:
I know it's hard because I live it but try not to totally dismiss the "in your head" aspect. It's not that you're imagining it but there can definitely be a link between anxiety/ stress and physical symptoms. Being overly "in touch" and constantly analyzing your symptoms might actually make things worse. My brain fog/ dizziness absolutely gets measurably better when I am heavily distracted. I first realized this when I had to run my wife to the ER one day. I went from barely able to drive to feeling almost completely normal in 15 minutes.
These issues tend to be more common in type A introverts and analytical types which is me for sure. I'm currently on a minimal dose of sertraline. It definitely helps but they don't know why. There's just so much that we don't know about the brain.
Again, I can't stress enough to find a neuro-otologist for your dizziness concerns. I literally saw 30+ ENTs, neurologists, etc with zero help.
Did you finally find a good neurologist that could help you? How long have you had longhaul symptoms?
Exercise doesnt really make a difference. In fact, a lot of long haulers arent able to exercise due to their lung issues, and/or joint pain from the long haul symptoms.Dad said:
I was just wondering for those long haulers on this thread, does daily exercise have any impact on your symptoms, good or bad, or does it not make any difference?
I was laid off last year for 4 months and I exercised everyday. I didnt notice a difference in my symptoms.
I totally agree. Its hard to tell a friend, by the way I may not make dinner tonight because I dont know if Im going to feel like absolute crap from my long haul symptoms and/or feel completely dizzy the entire time lol. I really dont like to talk about it with others, because I dont want people to look at me differently or think Im contagious or something.trnrmom said:
going to see e n t in nov.; don't think my medicare/aarp ins. covers that neuro ontologist; at least i get a few hrs. in the morning w/o dizziness if i get some decent sleep (medicated w/3rx and great pre-bed hygiene); am hoping maybe time...more time..might be the answer. early on when driving i feared i'd be pulled over for a dui; don't drink alcohol; take tons of supplements and distract as much as i can...at times it's overwhelming and only those people who are long haulers truly understand the magnitude of how this virus has impacted our health and mental well being...because i haven't changed on the outside, people just think i'm ok. if they only knew but most people don't want to hear others' problems; this virus has impacted each and every one of us on some level.
Its completely impacted my day to day life for the worse. I just pray that it goes away soon after 16 months of this.
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