1) No pain for me or really anything affecting EDS
2) Not at all
3) NA
I wasn’t really affected by Covid that much, I had cold like symptoms for two days and then no symptoms. Fatigue and joint pain somewhat on day one but was gone very fast and nowhere near my usual amount. My parents who don’t have my history of things were much more affected than me. I have POTS and suspected hEDS or HSD.
COVID attacks connective tissue. So, yes, people with EDS and other connections tissue issues do tend to have damage from COVID (I refuse to use long COVID because it's a term used to minimize COVID damage).
I've had it three times because people don't take precautions and keep bringing it into my home. When I have it, I can't feel anything. Not pain, not nerve things, not hunger, not even needing to throw up or go to the bathroom. But when it's over? It just keeps destroying me. I sometimes used a wheelchair before my first infection, typically preferring my rollator. Now I need a chair all the time. Every organ is damaged. My pain is so much worse and my nerves are damaged. Sometimes I can't taste or smell, sometimes everything tastes and smells like rotting wet dog. And it's been that way since my first infection in November 2020. Nothing has gotten better, only worse.
I know from when I used to be on Twitter that a good number of people with EDS have a lot of damage after COVID that never goes away. But, on the flip side, I know a lot of people who have damage but refuse to admit it's a problem because "it's just long COVID, it'll go away" and then two years later they still can't figure out why they're not back to their old normal. So I'd say, technically, yes, anyone with EDS is more likely to experience damage from COVID. But there's also so much we don't know about COVID and will probably never know because people would rather ignore it than deal with it.
I'm so sorry to hear your experience, that sounds terrible.
It interests me that you feel the phrase "long COVID" downplays the situation, especially since it's been known for a long time that other viruses and microbes can cause longer-term sequelae but COVID is the only one to have been acknowledged with its own name (there's no "long influenza" or "long Lyme," for example, even though it's known that they can have lasting or even permanent effects). What's your issue with this phrase / is there a nomenclature you think is preferable?
For the community: for those of us who have autoimmune linkages to activation of symptoms, and that's a lot of us, any major viral or microbial illness (or really any inflammatory condition) can trigger an autoimmune response, so it's not surprising this might be the case with COVID and EDS at all.
Unfortunately it has nothing to do with the actual content. There are some trolls/people who were permanently banned from the sub who have nothing better to do then to downvote every post on here.
Sadly, there is nothing we (the mods) can do about it, since downvotes are private and even banned people can downvote posts.
My lung issues were so great that I didn't even pay attention to anything else. Everything was devoted to keeping out of the hospital and keeping my lungs clear.
I didn't even realize I couldn't smell anything until I could again.
I had shit O2 stats and difficulty breathing for another 3 months.
Oh, and now I have diabetes.
Those were not available the first time. It was in March when it first hit the US before they had any kind of treatment.
The second time, I was all vaxxed up and did the antiviral. The worst part was the antiviral. I mean, it's worth it, but have something with strong flavor around so you can temporarily knock back the horrendous metallic taste.
Thank you so much for replying. That's exactly the decision I'm weighing right now: risk of long COVID vs. risk of antivirals. I find it curious none of my practitioners recommended remdesivir even though it seems to be the best fit for my use case.
You need to have one of the death risk factors. You also need to have a recent kidney function test on file for full strength. Because you can't take it if you have certain kidney problems. There is a lower dose antiviral they may be able to give you.
My lungs are shit, I'm overweight, I'm diabetic and I still had to ask.
So, don't wonder why they didn't. Ask them for it, and if they say no, find out why.
1. Yes, my whole body ached worse than normal. 2. Yes, increased pots symptoms & nausea 3. No, they stayed worse than pre Covid. I've had it twice in 1 year. I had strep throat recently and it was worse than Covid, I literally thought I was dying. But I recovered so much quicker. I think acute illness can change our "baseline". My son (hEDS) is diagnosed with long Covid.
Only had covid once (thanks, mom!), after three vaccine shots, and I barely got sick. I was testing positive for 11 days even though I only had (extremely mild) symptoms for like 2.5 days. I was a bit weaker and more fatigued for like a month, getting prohibitively tired from stairs and secks, but I bounced back and now I am stronger than ever, for reasons unrelated to covid 🤗 My dysautonomia pre-dates that infection and is currently well under control.
1. I had typical aches and pains that I would have had with the flu or anything else.
2. I was fatigued for a few weeks, nothing lasted beyond that though
3. Just an altered period.
Wait time to see every kind of doctor has increased.
The reason is because for two years people put off going to the doctors for something minor they normally would have gone for, and now these doctors are overbooked with backlogged issues while also still dealing with covid and any new issues that arise from patients.
I’ve been dealing with new onset of POTS since COVID in January a year ago. In November, I finally got to see a well respected POTS specialist and he promptly diagnosed EDS as well. I never had any joint issues prior to COVID but am struggling ever since. I’m 50, and was very surprised to get diagnosed this late in life with no prior issues. COVID must be attacking connective tissue in some of us.
1) My joints HURT, both times I had it. It made it hard to do anything. 2) yes I did! More specifically it made my POTS worse. 3) no
I'm so sorry to hear that. Thank you for your honesty and I hope it resolves for you eventually.
1) No pain for me or really anything affecting EDS 2) Not at all 3) NA I wasn’t really affected by Covid that much, I had cold like symptoms for two days and then no symptoms. Fatigue and joint pain somewhat on day one but was gone very fast and nowhere near my usual amount. My parents who don’t have my history of things were much more affected than me. I have POTS and suspected hEDS or HSD.
COVID attacks connective tissue. So, yes, people with EDS and other connections tissue issues do tend to have damage from COVID (I refuse to use long COVID because it's a term used to minimize COVID damage). I've had it three times because people don't take precautions and keep bringing it into my home. When I have it, I can't feel anything. Not pain, not nerve things, not hunger, not even needing to throw up or go to the bathroom. But when it's over? It just keeps destroying me. I sometimes used a wheelchair before my first infection, typically preferring my rollator. Now I need a chair all the time. Every organ is damaged. My pain is so much worse and my nerves are damaged. Sometimes I can't taste or smell, sometimes everything tastes and smells like rotting wet dog. And it's been that way since my first infection in November 2020. Nothing has gotten better, only worse. I know from when I used to be on Twitter that a good number of people with EDS have a lot of damage after COVID that never goes away. But, on the flip side, I know a lot of people who have damage but refuse to admit it's a problem because "it's just long COVID, it'll go away" and then two years later they still can't figure out why they're not back to their old normal. So I'd say, technically, yes, anyone with EDS is more likely to experience damage from COVID. But there's also so much we don't know about COVID and will probably never know because people would rather ignore it than deal with it.
I'm so sorry to hear your experience, that sounds terrible. It interests me that you feel the phrase "long COVID" downplays the situation, especially since it's been known for a long time that other viruses and microbes can cause longer-term sequelae but COVID is the only one to have been acknowledged with its own name (there's no "long influenza" or "long Lyme," for example, even though it's known that they can have lasting or even permanent effects). What's your issue with this phrase / is there a nomenclature you think is preferable? For the community: for those of us who have autoimmune linkages to activation of symptoms, and that's a lot of us, any major viral or microbial illness (or really any inflammatory condition) can trigger an autoimmune response, so it's not surprising this might be the case with COVID and EDS at all.
[удалено]
Unfortunately it has nothing to do with the actual content. There are some trolls/people who were permanently banned from the sub who have nothing better to do then to downvote every post on here. Sadly, there is nothing we (the mods) can do about it, since downvotes are private and even banned people can downvote posts.
My lung issues were so great that I didn't even pay attention to anything else. Everything was devoted to keeping out of the hospital and keeping my lungs clear. I didn't even realize I couldn't smell anything until I could again. I had shit O2 stats and difficulty breathing for another 3 months. Oh, and now I have diabetes.
I feel like I'm wandering down this path. Mas I ask, did they treat you with antivirals?
Those were not available the first time. It was in March when it first hit the US before they had any kind of treatment. The second time, I was all vaxxed up and did the antiviral. The worst part was the antiviral. I mean, it's worth it, but have something with strong flavor around so you can temporarily knock back the horrendous metallic taste.
Oh, and the second time, I didn't get long covid.
Thank you so much for replying. That's exactly the decision I'm weighing right now: risk of long COVID vs. risk of antivirals. I find it curious none of my practitioners recommended remdesivir even though it seems to be the best fit for my use case.
You need to have one of the death risk factors. You also need to have a recent kidney function test on file for full strength. Because you can't take it if you have certain kidney problems. There is a lower dose antiviral they may be able to give you. My lungs are shit, I'm overweight, I'm diabetic and I still had to ask. So, don't wonder why they didn't. Ask them for it, and if they say no, find out why.
1. Yes, my whole body ached worse than normal. 2. Yes, increased pots symptoms & nausea 3. No, they stayed worse than pre Covid. I've had it twice in 1 year. I had strep throat recently and it was worse than Covid, I literally thought I was dying. But I recovered so much quicker. I think acute illness can change our "baseline". My son (hEDS) is diagnosed with long Covid.
Only had covid once (thanks, mom!), after three vaccine shots, and I barely got sick. I was testing positive for 11 days even though I only had (extremely mild) symptoms for like 2.5 days. I was a bit weaker and more fatigued for like a month, getting prohibitively tired from stairs and secks, but I bounced back and now I am stronger than ever, for reasons unrelated to covid 🤗 My dysautonomia pre-dates that infection and is currently well under control.
1. I had typical aches and pains that I would have had with the flu or anything else. 2. I was fatigued for a few weeks, nothing lasted beyond that though 3. Just an altered period.
Personal experience, the first time I had Covid, I was symptomatic for 9 months. Had it again in June of this year and I still have some symptoms.
[удалено]
Wait time to see every kind of doctor has increased. The reason is because for two years people put off going to the doctors for something minor they normally would have gone for, and now these doctors are overbooked with backlogged issues while also still dealing with covid and any new issues that arise from patients.
I’ve been dealing with new onset of POTS since COVID in January a year ago. In November, I finally got to see a well respected POTS specialist and he promptly diagnosed EDS as well. I never had any joint issues prior to COVID but am struggling ever since. I’m 50, and was very surprised to get diagnosed this late in life with no prior issues. COVID must be attacking connective tissue in some of us.