I was wondering if there has been any research into the effects of COVID19 and EM. My company has allowed people to be remote since the beginning of the outbreak, but they want people to come back now. A lot of the high risk conditions are vascular in nature, and I have my concerns that EM might also be high risk but because its so hard to see a Rheumatologist, that I’ll be exposed before I can see one - especially since its unlikely the first one will have ever heard of it.
I was diagnosed in 2018 but started showing symptoms as early as 2005. Is any else concerned that their EM might back them high risk should they catch COVID19? Has anyone of the community been diagnosed with COVID? Are my concerns unjustified?
EM is a neurological disorder. The Covid virus affects various organs of the body as it continues to mutate. However , those of us with EM will agree , that EM was around way before the Covid 19 virus reared it’s ugly head. there is most likely NO connection between the two. So , IMO your concerns are unwarranted.
I’m not a medical professional per se (just a Biomedical Scientist with EM and EDS) so can only offer my personal opinion: given that EM is thought to arise from dilation of blood vessels, I’d think we’re at no more risk than the general population.
Having said that, my company put me in the “at risk” category, even though I was not classed as being so by the UK Government.
If you are able to work remotely, could you broach the subject with your boss and explain your concerns? Under the Equality Act 2010, you have a right to request “reasonable adjustments” to your workplace - this includes working from home.
I’m not a doctor but I have also had concerns about this - it might be neurological in nature, but that still affects the way our bodies react to stimuli, whether a disease or simply going for a walk.
I’ve seen the way my hands and feet turn red and swell and such during an attack, I’m concerned that my lungs might invisibly do the same if I were to catch COVID. I had pneumonia as a child and that was rough but my EM has only gotten worse as an adult and I’m definitely concerned that that could be an underlying issue.
I suppose that without proper research into it, the best we can do is be as safe as we can be. Insist that you’re at risk to your work and hopefully they will accommodate you, you have a right to that. I don’t know what country you’re in, so I can’t really speak for any specific laws. But in general, they’d be super gross not to accommodate.
In short, I don’t know but I’ve been thinking a lot about this for some weeks now and you’re valid. Stay safe!
I just came here, specifically to start a discussion about this. I’ve seen a couple of pieces online (Science Mag and Medium articles citing published studies) that suggest COVID-19 seems to be a disease that attacks the blood vessels. I have genetic EM & Raynauds. Ever since the news of “Covid Toes” came out (I have had chilblains just like that a few times since EM began), I’ve been a little on edge wondering just what kind of risk category I fall into. Having circulatory issues like EM/Raynauds seems like it would almost certainly complicate an infection/disease that has been seen to cause vascular damage and (sometimes widespread) blood clots. I am no expert (came here hoping to find some, haha), but this seems like an obvious reason for concern.
While EM does not currently fit into any of the broad categories of people at higher risk for severe illness from COVID-19 per the CDC, if you asked a doctor they would likely say you should exercise caution simply because knowledge of each disease is limited.
Basically, since no one can answer the question with any degree of certainty, a doctor will say you should exercise caution simply to limit their legal liability. When in doubt, always err on the side of caution. That’s why I haven’t bothered to ask my doctors. I already know that’s what they would say.
Quick update. I did a little reading on Covid recently and there is a recent release that talks about some of the ways people die from Covid. I don’t think EM makes you any more at a risk of dying from Covid than not having it. They did mention some might have reduced clotting which can be a cause of death by taking blood thinners. It helps the circulation but they still don’t know how much blood thinners or asperin can lesson the risk of dying from Covid. As blood clots can be a major cause of death for most of the versions of the disease having better blood flow may help you some and those with EM often have better blood flow and increased blood flow. So maybe they could have a better chance at not dying due to better circulation. But Covid of course is bad. I’m not saying weird web rumors, like one disinformation rumor by a friend who is often in denial about Covid sent me should be considered true. The quote I’m giving is not about blood thinners and antibiotics for bacteria infections which I think is Russian disinformation or a fake story proposing to be facts from a denial of Covid direction. Coved still is serious and just because you may have better circulation or have better blood flow from you’re version of the EM disease (not everyone has that, some have mixed symptoms from polyneuropathies) you won’t be immune magically from getting Covid nor necessarily have a greater chance at recovery. I think the best thing about having EM it is may limit you’re social interaction and going out and you may be isolated and that may actually limit you’re exposure to this thing. Our household is pretty much locked in and has been in lockdown before covid due to health problems. Being a sole caretaker for both my mom and my dad. We don’t go out much. We’ve actually adjusted to the lockdowns better than most families, because we were already isolated and live a life of being mostly shut-ins. So we were pretty much adjusted for the new normal of lockdowns and limited social life before others were hit with Covid. That being the case, we still practice staying safe with masks and I won’t let people visit who are careless or might be Covid carrying folks. Rarely medical staff visit our house, and we rarely go out to medical visits. We are very lucky to not have to go to as many appointments as most patients, due to the length of time and the relatively stable medicine routine we get. (I don’t want to get into this but because mom is chronic without a cure and on a medical routine which pretty much is the same pain medication that doesn’t change much we are fortunately setup with a diagnosis which allows us to go to the see the doctor less than most patients and still get prescriptions.) But we also have AT HOME HEALTH care workers and doctors that arrive so we get visits at home and also go to the office. But the visits at home have been severely curtailed. There is to much COVID in this state and to much risk of giving it to patients, so most the home care staff as far as doctors don’t even visit us now they use phone visits, and rarely send someone to our house to do a medical lab test.
I believe in wearing N95 masks or better. Staying away from big crowds if possible, but even better if you can afford it buy a PAPR system and wear a papr. It may be difficult to nearly impossible to purchase a medical PAPR at least that was the case for the first six months or so of the epidemic. But you can get a WELDER PAPR which has a HEPA 3 filter and that is way better than even a n95 mask and a lot easier to use, although it does have an belt air filter supply system that pumps clean and filtered air into you’re welding mask or “medical PAPR” mask. I own a welding PAPR system but bought a 3m tube which can fit my non-3m brand and a 3m medical mask because I was tired of wearing a welding mask and looking like a knight or super hero or welding freak or whatever. Although people didn’t mind it the mask I had with the welding system had a very narrow opening a tall window and it was a bit of a pain to walk around in a grocery store and turn my head left and right all the time to look out for other customers. The 3m medical welding masks are nice colored, white and mostly a clear round wide open visor with a huge face mask. They may resemble some grinding masks that are not even designed to be used for welding applications. In either case the welding mask PAPRs or a medical PAPR will often have an 8 hour or longer battery that is charged and supplied filtered air through a hepa 3 filter. As well as other filters for welding which can be removed or left in. And the hepa 3 filter will block out more than an n95 mask would and you have a completely enclosed mask, but they are expensive to buy. The hepa 3 filters an be replaced and will last about a year and cost about $50 to replace them. So for $100 I’m set to resist Covid with a GOLD STANDARD of protection that doctors or nurses would desire in a COVID ER. In one Covid hospital in New York (under EM Crit youtube video discussion of Covid with ten doctors. . . the host said nobody working outside the ICU for COVID patients which has a high exposure dosage picked up covid in the entire hospital. They all wore n95 masks. They were not in the COVID ICU ward which is highly infected with a lot of virus in it. They were in other parts of the hospital but it was a hospital for COVID treatment. This means if the average medical worker in a regular hospital with sick patients did not get covid, the average shopper if they wear a N95 mask properly fitted and don’t make mistakes can be essentially free of most all covid risk if they simply wear an N95 mask when shopping. But the government doesn’t push or suggest n95 masks. They often said at the beginning of the epidemic save those for medical staff and first responders, which made sense back then. But they have never said wear n95 masks. I’m telling you now, the vaccine of course is a good thing for most everyone out there. The masks you should be wearing if you can get them is n95 masks. If you’re wearing them you protect yourself and are not depending on someone else wearing a lesser mask to protect you from his water droplets. Don’t worry about what mask others wear, wear the right one and protect yourself. For this reason as I wear a papr and keep my guard up I’m actually not very afraid of covid nor particularly worried if I see an occassional shopper who didn’t wear a mask when they should have. As I’m wearing something that will probably be a gold standard for a COVID ICU I’m not to worried about two or three people being lazy and cheating and taking off their masks in a grocery store. I just go inside get the groceries, sometimes tell others about the PAPR system and go on and do the necessary shopping. I may be in a store for 20 minutes max. I will often go in pick up a few items and go out. I also use a pantry for canned goods and it’s quite large. I started it when the pandemic hit and focused mostly on can goods of stuff we already eat like soups and veggies and fruits. By having an expanded pantry I had enough food if things got really bad. But I found I still went out to get things the perishables as much as I normally did and probably went out more during Covid than I did before it hit. I stopped eating fast food, to many fast food people in some of the places were taking off their mask when the customers were not at the drive through. They would cheat and then put on the masks when you’d show up. I would not order dinner or take out from those places. I did order pizza and reheated it in an air fryer to make sure it was hot enough to kill any COVID that might be put on there by a pizza maker. If I can heat up and kill the virus off the food, then I may buy some fast food, but it’s mostly pizza. As a sole care givers for two elderly I’m determined not to bring home COVID. I hope and trust most of you have stayed safe from the COVID. EM is bad enough to deal with. It’s important to be vigilant and not let your guard down and respect this terrible viral disease.
The post you responded to here was about a year old, @watchman. I’d just encourage everyone get vaccinated. I successfully avoided COVID-19 with prudent mitigation strategies that didn’t require medical grade equipment or extreme social isolation. I am now vaccinated.
COVID-19 vaccines are abundant and easily obtainable everywhere in the United States, so go get vaccinated today if you haven’t already. Most places are now taking walk-ins with no appointment necessary.
