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Connective Tissue Disorder

Posted by jeindc @jeindc, Sep 23 11:50am

After nearly 1.5 years of asking and seeing doctors about the issues with which I've dealt since having COVID, one was finally "thought to be something": a connective tissue disorder.

I did lots of searching and learned that it is likely from COVID, is part of long COVID. The words used in searches resulted in NIH and other reliable resources when doctors "c/wouldn't say for sure".

If you, like many of us, are still struggling to find out anything and have yourself be taken seriously, do searches for your symptoms +Long COVID. Then ask more questions. My disorder is not easily or really treatable nor can it be cured. It is likely to get worse and thus my quality of life will further deteriorate. Except no one can tell me what to expect.

We are an experiment as yet another new variant is announced and too few have gotten updated boosters. Hospitalizations for those 65+ with COVID have increased. They say summer was for younger victims; 65 and older will be likely hit this Fall and Winter. Protect yourselves if others won't.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

emo | @emo | Sep 23 5:20pm

I’m glad you were able to get a possible explanation.

What type of connective tissue disorder is it? There are several.

Sadly, it doesn’t surprise me this would happen. It was well known before COVID that a viral infection, even just a cold, could trigger an autoimmune condition. That’s what my doctors suspect happened to me because I was otherwise healthy until a few weeks after I had a very bad illness and then unexplained symptoms developed and progressed and years later I got diagnoses, only for symptoms to return and get worse after a covid infection.

I feel conflicted that on the one hand there are a whole lot of other people who have joined our ranks of the chronically ill and are just as up in arms and frustrated at the slow pace of accessing care of at all, as we were, and now there are more people who understand, but I’m sorry it had to be this way for more people to finally be aware of the challenges facing people with these complex and systemic conditions.

It bothers me when people draw a false parallel of covid to the flu. The flu doesn’t kill or disable as many people as COVID is continuing to do, nor does it appear to cause as many post-viral conditions, yet we’re literally still arguing over the merits of vaccines. It’s a role of the dice.

I couldn’t have protected myself from the ordinary virus that triggered my condition, but we had the power to do it and not enough people cared. It’s sad.

I’m glad you may be on your way to more answers and hope you’ll get relief soon.

REPLY
1 reply
jeindc | @jeindc | Sep 23 5:42pm
In reply to @emo "I’m glad you were able to get a possible explanation. What type of connective tissue disorder..." + (show)
@emo

I’m glad you were able to get a possible explanation.

What type of connective tissue disorder is it? There are several.

Sadly, it doesn’t surprise me this would happen. It was well known before COVID that a viral infection, even just a cold, could trigger an autoimmune condition. That’s what my doctors suspect happened to me because I was otherwise healthy until a few weeks after I had a very bad illness and then unexplained symptoms developed and progressed and years later I got diagnoses, only for symptoms to return and get worse after a covid infection.

I feel conflicted that on the one hand there are a whole lot of other people who have joined our ranks of the chronically ill and are just as up in arms and frustrated at the slow pace of accessing care of at all, as we were, and now there are more people who understand, but I’m sorry it had to be this way for more people to finally be aware of the challenges facing people with these complex and systemic conditions.

It bothers me when people draw a false parallel of covid to the flu. The flu doesn’t kill or disable as many people as COVID is continuing to do, nor does it appear to cause as many post-viral conditions, yet we’re literally still arguing over the merits of vaccines. It’s a role of the dice.

I couldn’t have protected myself from the ordinary virus that triggered my condition, but we had the power to do it and not enough people cared. It’s sad.

I’m glad you may be on your way to more answers and hope you’ll get relief soon.

Jump to this post

Thank you, emo. They think it's lipedema - which is, they say and I've read, inherited but no one on either side of my family had it. I had an horrific rash on one leg and ankle as a result of COVID. PCP sent me to ER - twice - once they thought it was cellulitis; then an 'unknown skin condition' - alas, no one did a culture of it. Then dermatologist; then, a year later, an extensive ultrasound bec they thought lymphedema. And there is more. There is no cure or real treatment. It can get progressively worse but there are no specialists in my area - a major US city! or any that have yet been found elsewhere. And even if there were....

YES! Those who equate COVID with flu are annoying. The statistics of who is now getting and expected to get COVID are those in the 65+ age group. Those who are not getting boosters are in the low percentages in all age groups. It's as if the pandemic never happened. With the latest (since FLiRT) variant (XEC), the expected surge again this winter may be worse because of too few boosters.

I encourage people and try to explain that long COVID stinks and it's not worth chancing it.

Your note is so appreciated. Your frustration and mine are being heard and by too few PCPs and even specialists. I think I read more than many of them.

Here's to better.

REPLY
1 reply
emo | @emo | Sep 24 12:27am
In reply to @jeindc "Thank you, emo. They think it's lipedema - which is, they say and I've read, inherited..." + (show)
@jeindc

Thank you, emo. They think it's lipedema - which is, they say and I've read, inherited but no one on either side of my family had it. I had an horrific rash on one leg and ankle as a result of COVID. PCP sent me to ER - twice - once they thought it was cellulitis; then an 'unknown skin condition' - alas, no one did a culture of it. Then dermatologist; then, a year later, an extensive ultrasound bec they thought lymphedema. And there is more. There is no cure or real treatment. It can get progressively worse but there are no specialists in my area - a major US city! or any that have yet been found elsewhere. And even if there were....

YES! Those who equate COVID with flu are annoying. The statistics of who is now getting and expected to get COVID are those in the 65+ age group. Those who are not getting boosters are in the low percentages in all age groups. It's as if the pandemic never happened. With the latest (since FLiRT) variant (XEC), the expected surge again this winter may be worse because of too few boosters.

I encourage people and try to explain that long COVID stinks and it's not worth chancing it.

Your note is so appreciated. Your frustration and mine are being heard and by too few PCPs and even specialists. I think I read more than many of them.

Here's to better.

Jump to this post

Thank you for sharing. I wasn’t familiar with this condition, and I’m sorry you’re going through this but glad you were able to get a diagnosis. I hope you’re able to find a treatment to help manage symptoms. I looked it up and I see what you mean about there not being a gold standard treatment. I think I had a PT who treated both lymphedema and lipedema, but it seems hard to find those who specialize, like you said. I’m not even sure how someone would even know she treated this conditions in addition to some more common issues PTs treat. Wishing you all the best and hoping you find that’ll help sooner rather than later.

REPLY
1 reply
jeindc | @jeindc | Sep 24 10:02am
In reply to @emo "Thank you for sharing. I wasn’t familiar with this condition, and I’m sorry you’re going through..." + (show)
@emo

Thank you for sharing. I wasn’t familiar with this condition, and I’m sorry you’re going through this but glad you were able to get a diagnosis. I hope you’re able to find a treatment to help manage symptoms. I looked it up and I see what you mean about there not being a gold standard treatment. I think I had a PT who treated both lymphedema and lipedema, but it seems hard to find those who specialize, like you said. I’m not even sure how someone would even know she treated this conditions in addition to some more common issues PTs treat. Wishing you all the best and hoping you find that’ll help sooner rather than later.

Jump to this post

Thank you, emo. I had no idea what it was either - I of course blamed my inherited fat thighs - but it seems it has nothing to do with it! I was given a list of physical therapists, none of whom are near me and I don't drive. I looked at a few websites for those that had them and just wasn't convinced. I had already spent time getting lymphedema leg and foot wraps when they thought that. They seem to make the main area of lipedema worse. I asked for a list of nutritionists who specifically know lipedema nutrition since that one of the things I read that could help tho' it wasn't clear which of the recommended ones worked if at all. None of my doctors said I should do surgery - another recommended option.

Are we having fun yet?! You'd think long COVID would have become a priority given the number of us with it. It's classified a disability. Shrug.

To us all, hope since there's not much else that can be done.

I appreciate your taking time to read and write more.

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