CRPS and the COVID vaccine

Posted by amywood20 @amywood20, May 7 5:46pm

Hello! My twin sister has CRPS, affecting her right hand. The COVID vaccine is available here and she is concerned about getting it because of having CRPS. She said she's done her research on it and doesn't feel comfortable getting the vaccine. I am not sure what her research consists of though. Can anyone provide some insight into the vaccine and CRPS so that I can pass it along to her? I would love links to scientific articles to share with her. Thanks!

@amywoodj. I am so sorry to hear that your sister is dealing with CPRS. She’s lucky to have you looking out for her. Unfortunately, most research was done excluding many groups of people. I included the page of the Covid discussion groups. You’ll see that many people are asking similar questions.
https://connect.mayoclinic.org/group/covid-19/
Has your sister asked her physician if the vaccine is safe for her?

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@becsbuddy

@amywoodj. I am so sorry to hear that your sister is dealing with CPRS. She’s lucky to have you looking out for her. Unfortunately, most research was done excluding many groups of people. I included the page of the Covid discussion groups. You’ll see that many people are asking similar questions.
https://connect.mayoclinic.org/group/covid-19/
Has your sister asked her physician if the vaccine is safe for her?

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@becsbuddy I did ask her yesterday what he doctor thought. She pointed out how her doctor retired and she says she doesn't have one now (he retired a few years ago). She did mention the nurse at that doctor's office. I suggested she contact her. My sister said that of course the nurse would say to get the vaccine, as all doctors are saying to get it. Of course this isn't true.

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@amywood20 You say that your sister hasn’t had a doctor for several years? Is her CRPS active and who treats it? From everything I am reading, on this site and in newspapers, it is okay to get the vaccine. If in doubt, ask your doctor. I would also suggest asking the nurse at the office since the office is asked this question frequently. And invite her to MayoClinicConnect!
And be a good role model—get your vaccine!

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@becsbuddy I believe it's active. It's the result of a hand surgery that didn't go well a few years ago. One bone didn't heal correctly and she says it's not even connected anymore and that nobody will touch it because they are afraid of the CRPS. She also got C-Diff while in the hospital. She is not seeing anyone for the CRPS anymore. The nurse I mentioned was at her now retired primary care physician's office. I actually tried to get her up to Mayo to see someone who treats CRPS. They said they didn't have appointments for her due to being booked up and that she could try again in a year. Her only form of insurance is through the government (not sure if it's Medicare or Medicaid). I don't know if that played a role in that or not. I'm a Mayo patient and didn't have any issues getting my first appointment for my PKD (I have Tricare). Anyway, she's not very proactive with the CRPS and I think has just accepted it…and that her finger will always be messed up. She has two boys 10 and 13 and I asked since she's not going to get the vaccine does that mean when they have one available for kids will she allow them to get it. Nope. She's not anti-vaccine; just feels this one was rushed. Everyone else in the family has gotten it.

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@amywood20

@becsbuddy I believe it's active. It's the result of a hand surgery that didn't go well a few years ago. One bone didn't heal correctly and she says it's not even connected anymore and that nobody will touch it because they are afraid of the CRPS. She also got C-Diff while in the hospital. She is not seeing anyone for the CRPS anymore. The nurse I mentioned was at her now retired primary care physician's office. I actually tried to get her up to Mayo to see someone who treats CRPS. They said they didn't have appointments for her due to being booked up and that she could try again in a year. Her only form of insurance is through the government (not sure if it's Medicare or Medicaid). I don't know if that played a role in that or not. I'm a Mayo patient and didn't have any issues getting my first appointment for my PKD (I have Tricare). Anyway, she's not very proactive with the CRPS and I think has just accepted it…and that her finger will always be messed up. She has two boys 10 and 13 and I asked since she's not going to get the vaccine does that mean when they have one available for kids will she allow them to get it. Nope. She's not anti-vaccine; just feels this one was rushed. Everyone else in the family has gotten it.

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Amy, that’s sad to hear. Maybe she’ll eventually change her mind. I know the vaccine was ‘rushed’ but it still went through all the safety protocols and millions of us are doing fine. Just keep being positive and maybe she’ll come around. You’re a good sister for caring about her. Becky

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I doubt that a rushed vaccine has been adequately tested. So, safety? I can't be anything but sceptical. When polio was a feared epidemic many rushed out to take the vaccine only to be stricken by polio as a result!

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@krisjb1

I doubt that a rushed vaccine has been adequately tested. So, safety? I can't be anything but sceptical. When polio was a feared epidemic many rushed out to take the vaccine only to be stricken by polio as a result!

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Hello @krisjb1 and welcome to Mayo Clinic Connect. It is easy to wonder how a vaccine could be produced and tested so quickly. You may find this article on the history of how the vaccine came to be beneficial.

– How a Decade of Coronavirus Research Paved the Way for the COVID-19 Vaccines:
https://www.ama-assn.org/delivering-care/public-health/how-decade-coronavirus-research-paved-way-covid-19-vaccines
Do you also have CRPS?

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@amywood20 – Good morning.

I'd like to address the issue of covid vaccines being rushed because too many people have a misconception about it like the government was doing something wrong by giving an emergency clearance to vaccinate people. My first point is that thousands of people were dying! COVID-19 was declared a pandemic. WHO and CDC and science researchers worked as hard and quickly as they could to come up with a vaccine to stop the carnage that the virus was doing. There have been years and years of research done prior to this that allowed for a swift result. Was it perfect? no. Has the vaccine been successful in saving lives? yes. For all the naysayers to this vaccination, I'm sure that there would be as many complaints if there hadn't been as quick a response.

There is nothing that indicates that the current vaccines are dangerous or that they don't work. They have saved millions of lives. There have been side effects, yes. But people can live with side effects and many do because they have chosen to have the vaccine over the possibility of dying from COVID-19 or the chance of passing it to someone else.

I don't know the reason why your sister has neglected her health by not contacting another doctor or getting vaccinated. There is nothing to indicate that she should avoid getting the vaccine. Doctors are not advising against it but for it. And for the sake of her children, she should have it. No one is special enough to avoid the chance of contacting COVID-19, no one.

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Should Individuals with CRPS take a COVID-19 Vaccine?
We asked this question to members of RSDSA’s Scientific Advisory Committee and members of the International Research Consortium for CRPS. Their consensus opinion was:
“We unanimously agree that there is no reason that people with #CRPS patients should avoid the vaccines, and they will not recommend that their patients avoid them. One did however note the recent British recommendation that patients with known severe allergies should avoid the Pfizer vaccine, due to possibly severe allergic reactions it may trigger. It is important that patients communicate with the healthcare provider giving the vaccines about any known specific immune issues they may have or immune-modulating medications they may be taking.”

Learn more about CRPS Warriors and all types of vaccines in this article from the National Library of Medicine: https://pubmed.ncbi.nlm.nih.gov/26501109/
*As always, we are NOT instructing/demanding anyone get the vaccine. We will simply continue to provide information that is relevant to the community if you do choose to take it. However, please consult your physician for personalized medical advice.*
https://myjourneywithrsd.com/2021/04/06/covid-vaccine-and-crps/
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
Here are a few more pieces of feedback from Warriors on Twitter who have taken the vaccine: https://twitter.com/BaylyTaylor/status/1375872415381749761

@krisjb1 and Amy all doctors are advocating for people to get the vaccine unless they have had a severe allergic reaction to a previous vaccine. And yes some people died from the polio vaccine but only from one company that made the vaccine. It was called the Cutter Incident in 1955. No other people died when they took the vaccine off the market because all the other companies did not use live viruses. Covid-19 vaccines do not have any covid-19 live virus in them, none. It has a message to kick start your immune system in recognizing the virus so that you can build up immunity against it.

Both Amanda and Becky have given great links to learn more about the history and effectiveness of the vaccines. I'd like to say just one more thing. People who do not get vaccinated or wear masks are very likely to get COVID 19. One out of every 9.8 Americans has gotten infected. So if you haven't gotten vaccinated what makes you think that you special and not get infected? 1 out of every 555 Americans is now dead of covid-19.

Please help your sister to take care of her family by being vaccinated and to get another doctor.

REPLY
@amandajro

Hello @krisjb1 and welcome to Mayo Clinic Connect. It is easy to wonder how a vaccine could be produced and tested so quickly. You may find this article on the history of how the vaccine came to be beneficial.

– How a Decade of Coronavirus Research Paved the Way for the COVID-19 Vaccines:
https://www.ama-assn.org/delivering-care/public-health/how-decade-coronavirus-research-paved-way-covid-19-vaccines
Do you also have CRPS?

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Hello, I don't question "How" but I do question "Why." Obviously, the "Why" has to do with fear generated mainly by the press being a driving force in the politics that caused the vaccine push. The deaths attributed to Covid have been inflated in a number of ways including cash incentives to hospitals for reporting deaths as Covid if a patient who has tested positive dies of any reason including a traffic accident or a heart attack. Survival for those who have symptomatic Covid is documented to be extremely high especially for young people whose immunity is at its peak. Older people who receive the vaccine often do not have enough of an immune response to the vaccine to make it worth their becoming guinea pigs. I am in my 70's and survived Covid and it was not the worst illness I have ever endured. Prevention by nutrition and supplements known to enhance immunity is a far safer alternative than inviting a substance that alters genetic code to assume that responsibility.

REPLY
@krisjb1

Hello, I don't question "How" but I do question "Why." Obviously, the "Why" has to do with fear generated mainly by the press being a driving force in the politics that caused the vaccine push. The deaths attributed to Covid have been inflated in a number of ways including cash incentives to hospitals for reporting deaths as Covid if a patient who has tested positive dies of any reason including a traffic accident or a heart attack. Survival for those who have symptomatic Covid is documented to be extremely high especially for young people whose immunity is at its peak. Older people who receive the vaccine often do not have enough of an immune response to the vaccine to make it worth their becoming guinea pigs. I am in my 70's and survived Covid and it was not the worst illness I have ever endured. Prevention by nutrition and supplements known to enhance immunity is a far safer alternative than inviting a substance that alters genetic code to assume that responsibility.

Jump to this post

@krisjb1 I realize there is a lot of information that can also lead to misinformation. On Connect we work hard to ensure information is fact-based to provide the best environment for people to share and seek information.

I have heard from many people with same concern about the vaccine altering DNA/genetic code and found this article that may give you some additional information/background.

– Understanding mRNA COVID-19 Vaccines:
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html
Here is an especially important excerpt from the article:
They do not affect or interact with our DNA in any way.

mRNA never enters the nucleus of the cell, which is where our DNA (genetic material) is kept.
The cell breaks down and gets rid of the mRNA soon after it is finished using the instructions.

REPLY
@merpreb

@amywood20 – Good morning.

I'd like to address the issue of covid vaccines being rushed because too many people have a misconception about it like the government was doing something wrong by giving an emergency clearance to vaccinate people. My first point is that thousands of people were dying! COVID-19 was declared a pandemic. WHO and CDC and science researchers worked as hard and quickly as they could to come up with a vaccine to stop the carnage that the virus was doing. There have been years and years of research done prior to this that allowed for a swift result. Was it perfect? no. Has the vaccine been successful in saving lives? yes. For all the naysayers to this vaccination, I'm sure that there would be as many complaints if there hadn't been as quick a response.

There is nothing that indicates that the current vaccines are dangerous or that they don't work. They have saved millions of lives. There have been side effects, yes. But people can live with side effects and many do because they have chosen to have the vaccine over the possibility of dying from COVID-19 or the chance of passing it to someone else.

I don't know the reason why your sister has neglected her health by not contacting another doctor or getting vaccinated. There is nothing to indicate that she should avoid getting the vaccine. Doctors are not advising against it but for it. And for the sake of her children, she should have it. No one is special enough to avoid the chance of contacting COVID-19, no one.

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Should Individuals with CRPS take a COVID-19 Vaccine?
We asked this question to members of RSDSA’s Scientific Advisory Committee and members of the International Research Consortium for CRPS. Their consensus opinion was:
“We unanimously agree that there is no reason that people with #CRPS patients should avoid the vaccines, and they will not recommend that their patients avoid them. One did however note the recent British recommendation that patients with known severe allergies should avoid the Pfizer vaccine, due to possibly severe allergic reactions it may trigger. It is important that patients communicate with the healthcare provider giving the vaccines about any known specific immune issues they may have or immune-modulating medications they may be taking.”

Learn more about CRPS Warriors and all types of vaccines in this article from the National Library of Medicine: https://pubmed.ncbi.nlm.nih.gov/26501109/
*As always, we are NOT instructing/demanding anyone get the vaccine. We will simply continue to provide information that is relevant to the community if you do choose to take it. However, please consult your physician for personalized medical advice.*
https://myjourneywithrsd.com/2021/04/06/covid-vaccine-and-crps/
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
Here are a few more pieces of feedback from Warriors on Twitter who have taken the vaccine: https://twitter.com/BaylyTaylor/status/1375872415381749761

@krisjb1 and Amy all doctors are advocating for people to get the vaccine unless they have had a severe allergic reaction to a previous vaccine. And yes some people died from the polio vaccine but only from one company that made the vaccine. It was called the Cutter Incident in 1955. No other people died when they took the vaccine off the market because all the other companies did not use live viruses. Covid-19 vaccines do not have any covid-19 live virus in them, none. It has a message to kick start your immune system in recognizing the virus so that you can build up immunity against it.

Both Amanda and Becky have given great links to learn more about the history and effectiveness of the vaccines. I'd like to say just one more thing. People who do not get vaccinated or wear masks are very likely to get COVID 19. One out of every 9.8 Americans has gotten infected. So if you haven't gotten vaccinated what makes you think that you special and not get infected? 1 out of every 555 Americans is now dead of covid-19.

Please help your sister to take care of her family by being vaccinated and to get another doctor.

Jump to this post

@merpreb I will share the info you provided with my sister. Thanks!

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@amywood20

@merpreb I will share the info you provided with my sister. Thanks!

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Hi @amywood20 I’m so glad that @merpreb was able to give you some really good information. Let’s just hope that your sister likes it also and gets her vaccine! Will you let us know if she does?

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