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Post by supersoda on Jul 25, 2021 14:22:38 GMT
This is not a hand slap of the original thread’s OP, but my general frustration and an attempt to educate. Everywhere you look, serious is measured by immediate symptoms and hospitalizations. There’s not much focus on long-haulers who weren’t severely ill initially. This is a good opinion piece from CNN about living with long haul symptoms. www.cnn.com/2021/07/23/opinions/long-covid-symptoms-brought-me-to-the-brink-stephens/index.htmlMy long haul symptoms aren’t as severe as hers, but my medical journey for treatment and answers is similar. I’ve spent thousands out of pocket on tests and have no answers and no effective treatment and I’m left wondering if I’ll be dealing with this for the rest of my life. I did not have a severe case of Covid. My family members were sicker than I was, although none of us were hospitalized. But a week after mild flu-like symptoms, I suddenly had a throbbing headache, vertigo, and nausea so severe I couldn’t sit up without vomiting. That’s happened only a couple of time’s since then, but I have had symptoms virtually every day since December. It’s hard to find the words to describe them. Electric shocks running across my skull randomly, but I can trigger them when I wash my face and hair and through eye movement (scrolling through documents and spreadsheets is awful). Not really vertigo or dizziness, but a constant fuzziiness in my head. Fatigue—particularly from heavy brain work. Brain fog, although it has improved a lot. Daily headaches. This dramatically affects my quality of life, but my symptoms are invisible and hard to explain. To most people I don’t seem that different so it can’t be that bad, right? It is. To the unvaccinated, this is the possible consequence that’s not talked about. It’s like I picked up a new auto-immune disorder with no history, no treatment, and no idea where it will go from here. |
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Post by jeremysgirl on Jul 25, 2021 14:32:33 GMT
I have two friends with long covid. One is suffering from mental health issues and things similar to what you are...brain fog, headaches, she definitely thinks she has neurological impairments.
Another person I know with long covid has lung problems now and somehow it impacted her kidney function. She is still seeing pulmonary specialists and her kidney function is at least good enough to avoid dialysis. Both of them were 40s and healthy.
The lung issues with covid didn't scare me near as much as the neurological issues. When you already have a chemical imbalance in your brain, the idea of having more neurological impairment is frightening. I could deal with physical I think. I have no room on my plate for more mental impairment.
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Post by malibou on Jul 25, 2021 14:33:41 GMT
I'm so sorry you have been jumped by covid long haul symptoms. Hopefully as more people come forward, some answer will be found to help.
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Post by freecharlie on Jul 25, 2021 14:38:39 GMT
I'm sorry you are one of the ongoing haulers. I have a friend who is also still suffering the effects of Covid and one who died months after being released from the hospital.
Unfortunately the people who are antivaxxers don't care about any consequences of Covid, including death, unless it happens to them.
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Deleted
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Post by Deleted on Jul 25, 2021 14:42:26 GMT
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Post by Deleted on Jul 25, 2021 14:43:46 GMT
Dd and I both have POTS and Dysautonomia (from hEDS). I wouldn't wish that on anyone. It sucks.
Typical time to diagnosis is 6 years. Took dd 3. 6 years for hEDS.
We both see cardiology for it.
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Post by natscraps on Jul 25, 2021 14:45:43 GMT
I think you explained your symptoms well, but then I have some of the same long covid symptoms as you. I call the dizziness that’s not dizziness brain fuzz. Almost feels like static on an old to set. The daily headaches make me want to scream.
Like I said in the other post, I was unlucky enough to have it twice. The first time around my symptoms were respiratory. For 6 months I could barely walk to the bathroom without getting out of breath (and I’m only 40). 2 ER trips and multiple dr. visits and I still had no answers or treatment. This was early on in the pandemic. Just as my respiratory stuff finally got better, I got Covid again. Much less severe but it’s been over 8 months and I still have the headaches and neurological symptoms. The brain fuzz is the worst. No one understands how I get so tired and need an afternoon nap and I have to explain that my brain is exhausted from just trying to string together coherent sentences all day let alone anything else. Anything I do that requires brain power has to be done by 1pm because that’s when my brain turns to mush.
You’re right in that they should be publicizing the possible long haul effects of those of us who had “mild” cases. Especially those who were young and healthy beforehand. I don’t know if it would get more people vaccinated but it least it would bring an awareness for those of us who continue to live with the after effects.
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Post by supersoda on Jul 25, 2021 15:04:18 GMT
Dd and I both have POTS and Dysautonomia (from hEDS). I wouldn't wish that on anyone. It sucks. Typical time to diagnosis is 6 years. Took dd 3. 6 years for hEDS. We both see cardiology for it. That's terrible, I'm sorry. I'll look into dysautonomia. |
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Post by supersoda on Jul 25, 2021 15:09:07 GMT
Anything I do that requires brain power has to be done by 1pm because that’s when my brain turns to mush. Yes, this exactly. I do my hard stuff in the mornings. But I just can't get through to my colleagues that I literally cannot work late nights and weekends anymore. I have to give my brain downtime, and the more I try to push my working time, the longer it takes to recover. |
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Post by cindyupnorth on Jul 25, 2021 15:13:59 GMT
I work in in healthcare, and I don't think it's being ignored at all. The biggest problem is that this is new. It's brand new. It's not even a yr old disease and all the complications and effects of living with it long term. We just do.not.know. You have to give the medical field grace with this. We went thru a lot, and are trying to compile facts, case studies and just general information. I work with long haulers daily. I know what a struggle it is. The work we are doing now with them, will be the research for others down the line.
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wellway
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Jun 25, 2014 20:50:09 GMT
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Post by wellway on Jul 25, 2021 15:16:29 GMT
supersoda I'm sorry you are still dealing with the effects of covid. I thought you would like to know the research is going on in the UK and no doubt knowledge will be shared once discovered. The nhs also has eighty long covid assessments centres so information should be not too difficult to pull together. I'm guessing that other countries are doing the same, so hopefully, we have some answers sooner rather than later BBC Thousands of people with "long Covid" could benefit from the funding of 15 new studies of the condition, its causes and potential treatments. Researchers from across the UK will investigate everything from brain fog to ongoing breathlessness, using a new technique to detect hidden lung damage. They will be backed by £20m from the National Institute for Health Research (NIHR). Long Covid is still not yet fully understood. Although many people make a full recovery after having Covid-19, some do go on to experience symptoms for many weeks or months afterwards, even if they were not ill enough to be treated in hospital at the time. There is still no official definition for this condition, and estimates vary over how common it is. But doctors are clear it can cause a broad range of long-term symptoms, including fatigue, muscle pain, headaches, brain fog and breathlessness, which are not seen to the same extent with other viruses. More in link www.bbc.co.uk/news/health-57869427
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Post by withapea on Jul 25, 2021 15:24:24 GMT
I’m so sorry you’re dealing with it. I’m frustrated by it too. When I talk about risk, this is definitely part of it. The general public seems to completely ignore the fact that you can have issues like these.
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Post by revirdsuba99 on Jul 25, 2021 15:28:20 GMT
THIS is one of reasons that when anyone said 99% survival rate, many of us said NO! WRONG!! We knew better long ago.
I know. NJ has several research/treatment facilities for long haul issues. The whole body needs treatment, not just the assorted individual symptoms.
Wishing you improved health.
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Post by gar on Jul 25, 2021 16:02:30 GMT
It isn't being ignored and it is considered serious but we're still in the 'finding out' stage. There is a lot of focus on it but there are few definitives to report and therefore treatments/advice to offer yet.
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Deleted
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Post by Deleted on Jul 25, 2021 16:11:41 GMT
I’m so sorry that you are still suffering. I just hope there is a break through soon as to suitable treatment for you and so many others.
My mum’s brother is in the same boat. His wife died of it in April 2020. He didn’t have it that bad at the time and recovered pretty quickly. He was fine for a couple of months then gradually he started to get odd symptoms and that not quite right feeling. He’s only 70 but a very fit and up until this, a very healthy man. Gradually over the last 12 month he’s got worse. He has fluid surrounding his heart that they are having a problem in getting rid of, they clear it and then a week or so later it’s back, his feet & legs swell up for no apparent reason together with a few other symptoms such as headaches that he never used to suffer from.
He does attend a long term covid clinic and he’s also taking part in research being carried out by Imperial college London and has home visits from their team. Between the loss of my aunt and all of this ,his life has turned out so terribly different to what it was pre 2020.
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Post by Scrapper100 on Jul 25, 2021 16:43:15 GMT
So sorry you are going through this. Long Covid is what I have been afraid of. You can have mild case but then have lingering effects for no one knows how long. I’m hoping they can figure out why it happens so they prevent future cases but also how to treat the hundreds of thousands with it. The symptoms seem so vague and there are just so many different forms it seems. Hugs to you and I hope you can find relief soon.
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Post by chaosisapony on Jul 25, 2021 16:52:17 GMT
I'm sorry you're going through those symptoms. It sounds awful! I definitely consider long haulers to have had a serious case and I think the medical community, at least where I live, is doing the best they can but they simply have no idea what to do. I do hope your symptoms improve and this all just becomes a crazy story you have to tell.
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wasil
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Post by wasil on Jul 25, 2021 17:25:55 GMT
There are a lot of mysteries to be solved with COVID and its long term effect on the immune system, for sure.
My DH and I both had moderate cases last October which to our relief involved no lung issues. I recovered after about 10 days but my DH couldn’t seem to shake the gastrointestinal symptoms.
He still has daily stomach and bowel pain along with diarrhea. He’s been to specialists and taken numerous tests. His diagnosis is fructose intolerance and IBS but was told there was not much they could do for him to correct it. He was told to watch what he eats and avoid foods that aggravate his symptoms.
I don’t think it’s a coincidence that these problems began after a COVID infection. His gastroenterologist told him that he was not the only one to experience IBS problems after COVID.
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pancakes
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Post by pancakes on Jul 25, 2021 17:30:02 GMT
Our real estate agent got COVID when it started ramping up in April 2020. Because of it, she has some heart problems and has to continue to see a cardiologist, 15 months later. She was otherwise healthy and in her early 40s.
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used2scrap
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Post by used2scrap on Jul 25, 2021 17:53:32 GMT
I was struggling with long haul symptoms for months after having Covid last March, when I had it again late Oct/Nov. neither were “serious” enough to require hospitalization but felt close at the worst (breathing struggles, low oxygen).
However I’m now wrecked physically and mentally from were I was before Covid. It is a daily struggle and some days I simply cannot get anything accomplished but a nap. I often can’t find the right words for everyday objects. In the mornings my legs refuse to stand up. I have frequent shooting nerve pains. Muscle tightness and leg cramps and pains. Headaches. Mind foggy ness. Many days it still hurts to breathe. If I “over do it” and do some laundry and housework and cooking, the next thing I can do is rest. And nap. And have burning lungs. I try very hard to accept my new much slower pace of life, and thankful to have survived and be fully vaccinated. But frankly with the new variants I’m scared what a round three for me could bring.
I worry for people who insist they don’t need the shot because they had Covid once. I hope they fare better. And I hope soon there are more answers for those suffering from the long term consequences.
Edited to add;
Oh after the shots my sense of taste and smell has started to return. Yet I drive around with a bag of two week old rotten to the point of nearly bursting pico de Gallo that fell down between the seats in my car. My daughter has mentioned that she smelled something terrible in my car. I smelled nothing until I inadvertently found the bag looking for something else and opened it right under my face to see what it was.
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Deleted
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Post by Deleted on Jul 25, 2021 17:54:21 GMT
. This is a subject I have a strong interest in. In general post viral illnesses in the past have been poorly researched. The pandemic has changed this completely. There are billions being funded in the US on Long Covid and a lesser amount in the UK. The research broadly falls into 2 different categories, Biomedical and Psychosocial. Much of past research with post viral conditions centres around ME / CFS - (myalgic encephalomyelitis and chronic fatigue syndrome )and governments and medics around the world are now stating that Long Covid has many of the same symptoms and they draw parallels with ME/CFS . Some clinical trials are using both Long Covid and ME/CFS patients and comparing them against the other. It is hoped that treatments can be found that will work for both. Many of the individual Psychosocial researchers ( that produce low quality research on behalf of insurance companies for ME/CFS) have now done a land grab for Long Covid and have set up Long Covid clinics and are acting as advisors to major health insurance companies. This is not a good thing in my opinion and could be detrimental for Long Covid patients. There is a previous thread where I included a lot more information on this , it is complicated and long winded though ! 2peasrefugees.boards.net/thread/119870/covid-patients-get-neuropsychiatric-problemsI hope that Long Covid patients won’t have to suffer the way ME/CFS patients have . Now that the two conditions have been linked hopefully armed with knowledge and prior experience the same mistakes can be avoided. |
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sassyangel
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Post by sassyangel on Jul 25, 2021 19:16:43 GMT
It isn't being ignored and it is considered serious but we're still in the 'finding out' stage. There is a lot of focus on it but there are few definitives to report and therefore treatments/advice to offer yet. By the general population it kind of is, if that’s what she meant. Idiots quoting the survival rate disregard the amount of people suffering long haul symptoms. I’m so sorry some of you are still dealing with long haul issues. I empathize your frustration, I hope there are answers and treatment coming for you. |
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Post by supersoda on Jul 25, 2021 19:28:25 GMT
It isn't being ignored and it is considered serious but we're still in the 'finding out' stage. There is a lot of focus on it but there are few definitives to report and therefore treatments/advice to offer yet. I'm not talking about medical research--I'm talking about general discourse. The general attitude is if you didn't die or end up hospitalized for an extended period it wasn't that bad, but there are other measures for how life-altering covid can be. It's not merely a matter of "did I survive or not," but "what does life look like after survival?" I also had to push a lot to get my doctors' attention. My GP diagnosed vertigo--I knew it wasn't. The ENT said the ear pressure and pain was from clenching--it's not. I finally got to a neuro who is at least listening and taking me seriously and trying different treatments, even though they aren't working. I'm lucky to have the wherewithall to be able to fight for myself and keep pushing--that as a well-educated white woman I might be taken more seriously than a person of color or someone who can't articulate their position as well as I can. Not to mention access to good insurance and medical care and the financial resources to fill in the gaps. I really wasn't posting to get sympathy, but to create awareness. |
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Post by supersoda on Jul 25, 2021 19:30:19 GMT
However I’m now wrecked physically and mentally from were I was before Covid. It is a daily struggle and some days I simply cannot get anything accomplished but a nap. I'm so sorry. That just sucks. |
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Post by supersoda on Jul 25, 2021 19:31:30 GMT
I don’t think it’s a coincidence that these problems began after a COVID infection. His gastroenterologist told him that he was not the only one to experience IBS problems after COVID. It is bizarre how many systems are affected. I hope he can find a resolution. |
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moodyblue
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Post by moodyblue on Jul 25, 2021 19:43:49 GMT
The news and medical people have done lots of stories about the long haul effects - and concern about those has been a huge motivator for me to be cautious and do everything I can to avoid getting COVID. I’ve read of many people who were very athletic and in great shape who are now living with horrible health problems.
I think there are lots of people who did NOT get so sick they had to be hospitalized - but who are now dealing with all kinds of effects from this virus. That doesn’t even include the ones who were so sick they were admitted. I really don’t want to have lung, heart, kidney, brain, etc., issues for months, years, or the rest of my life.
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Post by Lindarina on Jul 25, 2021 19:45:40 GMT
We have a friend that studies the effects of long covid, (at a medical lab, not as a hobby😂)
Last time we spoke, his only advice was «don’t get Covid».
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Post by voltagain on Jul 25, 2021 21:52:48 GMT
This is not a hand slap of the original thread’s OP, but my general frustration and an attempt to educate. Everywhere you look, serious is measured by immediate symptoms and hospitalizations. There’s not much focus on long-haulers who weren’t severely ill initially. This is a good opinion piece from CNN about living with long haul symptoms. www.cnn.com/2021/07/23/opinions/long-covid-symptoms-brought-me-to-the-brink-stephens/index.htmlMy long haul symptoms aren’t as severe as hers, but my medical journey for treatment and answers is similar. I’ve spent thousands out of pocket on tests and have no answers and no effective treatment and I’m left wondering if I’ll be dealing with this for the rest of my life. I did not have a severe case of Covid. My family members were sicker than I was, although none of us were hospitalized. But a week after mild flu-like symptoms, I suddenly had a throbbing headache, vertigo, and nausea so severe I couldn’t sit up without vomiting. That’s happened only a couple of time’s since then, but I have had symptoms virtually every day since December. It’s hard to find the words to describe them. Electric shocks running across my skull randomly, but I can trigger them when I wash my face and hair and through eye movement (scrolling through documents and spreadsheets is awful). Not really vertigo or dizziness, but a constant fuzziiness in my head. Fatigue—particularly from heavy brain work. Brain fog, although it has improved a lot. Daily headaches. This dramatically affects my quality of life, but my symptoms are invisible and hard to explain. To most people I don’t seem that different so it can’t be that bad, right? It is. To the unvaccinated, this is the possible consequence that’s not talked about. It’s like I picked up a new auto-immune disorder with no history, no treatment, and no idea where it will go from here. Even to the vaccinated that end up with covid break through the long haul symptoms are possible. Yeah, my vaccination means I won't die from it, but I already have a list of debilitating symptoms from other diseases. I don't need to add the long haul (potentially permanent) symptoms from a bout of covid! |
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Post by 950nancy on Jul 25, 2021 22:33:39 GMT
I have mentioned it to a few friends who are vaccinated, but have been pretty casual about the whole crisis. When I mentioned long Covid, they had no idea what it was.
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AllieC
Pearl Clutcher
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Post by AllieC on Jul 26, 2021 1:03:13 GMT
I’m so sorry you are suffering from these after effects.
It isn’t talked about much in Australia In the mainstream media as we haven’t had the cases that many other countries have had. Now that Sydney has a large outbreak I wish it would be talked about more. Although the great majority take it seriously, the long Covid stories need to be out there more so that people don’t have the “not many die” mindset.
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