I need to hear from people who've gotten BOTH shots of the covid vaccine

Gingergrrl

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I don't have MCAS but sometimes I get angioedema out of the blue
Thank you for explaining all of this further and it has been very helpful for me to hear about people's reactions to the vaccine, their prior symptoms & diagnoses, and then compare them to my own situation.

Has there ever been a known trigger to your angiodema (beyond histamine in the most general sense) or is completely random?

I suspect I have some type of myositis.
Have you had any blood-work or Neuro testing (like an EMG and nerve conduction test)?

All of these muscle problems are on top of the everyday pain from ME/CFS or fibromyalgia, take your pick. Some days I don't have much pain and other days I have a lot.
I am so sorry to hear this :(... in light of everything, have you decided yet if you are going to get your second dose of the vaccine? (and apologies if you already said your decision and I missed it).
 

hapl808

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I don't have MCAS but sometimes I get angioedema out of the blue. I do have a lot of allergies to all sorts of things but the reactions are all mild. My food allergy tests showed I was allergic to a lot of foods and I totally changed my diet (drastically) and I did see some improvements but in the past year or so the improvements have pretty much disappeared. New food allergy tests didn't reveal much so I'm not sure what is going on. I have allergies to pollens, animals, all kinds of stuff you can't help being exposed to.
I have multiple chemical sensitivity in that exposure to all kinds of various chemicals in everyday things makes me feel sick with flu-like symptoms.

I suspect I have some type of myositis. Very often my muscles feel lethargic & heavy like they are 1/2 dead, when I am flaring the muscles feel diseased which is hard to explain. It feels like my muscles are being poisoned or have a disease at the cellular level. When I'm like that, the muscles get strained/injured extremely easily and sometimes take months to heal, sometimes years. In general I get muscle/ligament/tendon strains extremely easily and end up taking ibuprofen quite often. Sometimes the muscles do this weird thing where if I rub one, say my calf muscle, the pressure seems to cause the muscle fibers to stiffen and almost start to charley horse but only in the area that had the pressure. Oh, and brace yourself...I get what feel like rectal charley horses. Severe pain in my rectom that can last from a few minutes to 20 to 30 minutes. It usually goes away when I drink a lot of water and eat some honey. It suggests some kind of blood sugar or electrolyte/hydration issue, I am guessing.

All of these muscle problems are on top of the everyday pain from ME/CFS or fibromyalgia, take your pick. Some days I don't have much pain and other days I have a lot.
I have a lot of similar issues. When I have a flare, my muscles start to not only feel painful but also extremely brittle and easy to damage from extremely minor exertions. And like you, healing those strains can take hours or days or years or never. I've had MRIs and such looking for myositis but nothing found. I avoided things like biopsies as it seemed unlikely to provide helpful information and seemed very likely to do permanent damage. (Like many things where doctors say you'll be fine, and years later you're dealing with the damage.)

I also get electric muscular twitches that are short and painful during flares. I believe it's called myoclonic jerks. They are visible to others, but by the time I've reacted to the twitch, the pain is usually already gone.

The heavy and lethargic feeling is always there, and it becomes extreme during periods of PEM. The muscle brittleness doesn't always accompany an episode of PEM, but usually does accompany any period where my overall health has declined.

I haven't gotten the vaccine yet - still deciding which one seems best / least likely to put me into a long term flare.
 

jen1177

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Thank you for explaining all of this further and it has been very helpful for me to hear about people's reactions to the vaccine, their prior symptoms & diagnoses, and then compare them to my own situation.

Has there ever been a known trigger to your angiodema (beyond histamine in the most general sense) or is completely random?



Have you had any blood-work or Neuro testing (like an EMG and nerve conduction test)?



I am so sorry to hear this :(... in light of everything, have you decided yet if you are going to get your second dose of the vaccine? (and apologies if you already said your decision and I missed it).
In the past I've figured out that eating a lot of berries and citrus fruit is what would cause me to get angioedema on a regular basis. Since I stopped eating berries and oranges, I haven't needed to carry an epipen with me. But I do occasionally get a small spot of angioedema out of the blue and I don't know why. Almost never, though. Maybe 1 to 3 times a year. I did recently get bit or stuck by something when I was gardening and my finger swelled and itched like crazy and I got angiodema on my privates (sorry if that is TMI) :D and my throat was itchy. All I did was check the moisture level in the soil in several potted plants with my index finger and the next thing I know I was worried I was going to have to go to the ER. I ended up taking benadryl and recovering quickly, but it was a little alarming.
The only other known cause for my angioedema is menthol & eucalyptus. I avoid those like the plague.
I am trying to add small amounts of blueberry and strawberry to my diet to try to do a gradual desensitization and it seems to be working. (A friend gave me a strawberry plant and I really want to be able to eat the strawberries that it produces.)🍓😋

I haven't had any testing regarding the muscle problems. I've asked multiple docs for a muscle biopsy and they all come up with all kinds of excuses as to why they think it would be a waste of time. They write all my symptoms off as fibromyalgia. Which is a non-diagnosis anyway. I know other people with fibromyalgia and they don't get these muscle injuries like I do.

I haven't decided about Moderna #2 yet. I moved my appt to the 20th so I have a little more time to decide and hopefully get more input from others who've had both shots. But it's looking like not enough people are responding to this thread or the polls, or maybe not many people have gotten both shots yet. My head and my gut are odds. My gut is putting so much pressure on myself to get the 2nd shot so I can be as protected from covid as I can be & as soon as I can, but my head is saying to be patient and wait for a safer vaccine like J&J or Novavax. But that would take months.
 

Gingergrrl

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In the past I've figured out that eating a lot of berries and citrus fruit is what would cause me to get angioedema on a regular basis. Since I stopped eating berries and oranges, I haven't needed to carry an epipen with me. But I do occasionally get a small spot of angioedema out of the blue and I don't know why. Almost never, though. Maybe 1 to 3 times a year. I did recently get bit or stuck by something when I was gardening and my finger swelled and itched like crazy and I got angiodema on my privates (sorry if that is TMI) :D and my throat was itchy. All I did was check the moisture level in the soil in several potted plants with my index finger and the next thing I know I was worried I was going to have to go to the ER. I ended up taking benadryl and recovering quickly, but it was a little alarming.
Can you carry the EpiPen with you just to be safe?

I haven't had any testing regarding the muscle problems. I've asked multiple docs for a muscle biopsy and they all come up with all kinds of excuses as to why they think it would be a waste of time.
They might feel that a muscle biopsy is too invasive (and I have never had one either). But I have done a lot of blood tests and I did an EMG and nerve conduction test that all helped determine what was going on in my case.

I haven't decided about Moderna #2 yet. I moved my appt to the 20th so I have a little more time to decide and hopefully get more input from others who've had both shots.
That is good you have a little bit more time to decide. The COVID vaccines are still only available to people 65+ years old in my area so I have not yet officially declined it (although I still intend to).

But it's looking like not enough people are responding to this thread or the polls, or maybe not many people have gotten both shots yet.
There is a FaceBook group for people with ME/CFS (and other illnesses) discussing their experience with the COVID vaccine. I can try to find the link for you if it would be helpful.

My gut is putting so much pressure on myself to get the 2nd shot so I can be as protected from covid as I can be & as soon as I can, but my head is saying to be patient and wait for a safer vaccine like J&J or Novavax.
Why do you feel that the J&J or Novavax vaccine would be safer for you? I am not disagreeing vs. just curious. For me, the mRNA vaccines without any adjuvants seem safer (from an autoimmunity perspective) but even those could still cause or re-trigger autoimmunity.
 

bensmith

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I dont know if i should add this, but my friend who lives in norman said its a shit show hear and nobody knows what they are doing. Giving vax that is. Like measurements are not homogenized, sometimes they dont even give out the vax, sometimes too much, some people get sick. 5 got ill so far at their place on pfizer, one had to get cpr. On reddit too some are getting long haul from vax. Sorry if this is too
Much just what i’ hearing. For most its fine im pretty sure, nust crazy to hear these things.
 

vision blue

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We have quite a few areas of overlap, even more than i firsttbought.

what you describe with misscles And tendons very sImilar to me. I always laugh when someone. says do 3 sets of 8 repitiotions. Repulitive activity makes my musxles weaken rather than strengthen. Two times i went down and up a flight of stairs too quickly sbd my keg musckes did not recover to before. The first time, my legs went back to near normal a year kater. I thought was a fluke but then happened a second time and took a few years til i was able to Really use stairs (and still must be careful) i also will get spasms if i massage, especially feet. Also get tendonitis for nearly nothing

now as mmable to walk more stamina wise but consequence is my legs ate in constant muscle soreness. I nean all day every day.
I almost got a muscle biopsy but right when i figured i had nothing left to lose and to risk it , they improved (thry had gotten weak) after 6 weeks of vitamin D. Never foind out if coincidence



howcone you think yours is not mast cell nexiated despite chemical sebsitivity issues, intermittanr angioedena, food allegies, multippe AI, strange symptoms

i do t hace the bowel issue but any bleeding after an episode? Just wondering if maybe some ischemia. Blood flow/oxygen problens coukd affect both muscles and bowek. So can food sensitivity i think- coukd be snother nast cell reaction

both graves and hadhimoros? Meaning yku have both types of anti thyroid antibodies?

on second vaccine, isnt the most important thing whether your nasty side effects have gone away? Have stuff to say on ykur other thread on mrRNA vaccines and your lack of reaction to otgers. when i get the energy.
based on the poll at health rising, for both moderna and pfizer , about 10 percent of those with CFS continue to have side Effects 30 days after vaccine. Or is concern that even if folirst set resolves (have they?) second set will not?



was glad i did not risk biopsy and did learn after its rarely useful even if they find glaring red fibrers. And have had a couple even of docs saying do tnot get a muscle biopsy (not that i care except to note that even if an oblivious MD warns about it, that must really be saying sonething)
 

jen1177

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Can you carry the EpiPen with you just to be safe?



They might feel that a muscle biopsy is too invasive (and I have never had one either). But I have done a lot of blood tests and I did an EMG and nerve conduction test that all helped determine what was going on in my case.



That is good you have a little bit more time to decide. The COVID vaccines are still only available to people 65+ years old in my area so I have not yet officially declined it (although I still intend to).



There is a FaceBook group for people with ME/CFS (and other illnesses) discussing their experience with the COVID vaccine. I can try to find the link for you if it would be helpful.



Why do you feel that the J&J or Novavax vaccine would be safer for you? I am not disagreeing vs. just curious. For me, the mRNA vaccines without any adjuvants seem safer (from an autoimmunity perspective) but even those could still cause or re-trigger autoimmunity.
Re: epipen...I probably should carry one but I don't.
Re: muscle biopsy...only one doc said that was the reason they didn't want to do it. The other two said I was too young to have myositis, the other just insisted it was fibromyalgia
Re: vaccine distribution...same here, it was basically a mistake/oversight that I was able to get vaccinated during the 65 + age group, that's why I am trying so hard to figure out if I should get the second shot. If I cancel the appointment I will have to wait a month or two and then compete with a lot of others for an appointment. (I didn't lie or anything to get the vaccine -- it was just that my pharmacy was not getting enough of the eligible people signing up to get vaxed so they were giving the vax to any adult of any age with underlying health conditions -- for a while until I guess someone complained and they stopped)
Re: FB group...yes, please post the link, thanks
Re: vax safety...I only recently learned of these adjuvants -- very good point that I hadn't thought of, so I googled it and the Novavax does have an adjuvant. J&J does not but still uses a harmless virus to invade cells and make copies of the spike protein which seems like a lot of work for the immune system, similar to the mRNA vaxes. I no longer feel that any of these vaxes are safe for me.
 

jen1177

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We have quite a few areas of overlap, even more than i firsttbought.

what you describe with misscles And tendons very sImilar to me. I always laugh when someone. says do 3 sets of 8 repitiotions. Repulitive activity makes my musxles weaken rather than strengthen. Two times i went down and up a flight of stairs too quickly sbd my keg musckes did not recover to before. The first time, my legs went back to near normal a year kater. I thought was a fluke but then happened a second time and took a few years til i was able to Really use stairs (and still must be careful) i also will get spasms if i massage, especially feet. Also get tendonitis for nearly nothing

now as mmable to walk more stamina wise but consequence is my legs ate in constant muscle soreness. I nean all day every day.
I almost got a muscle biopsy but right when i figured i had nothing left to lose and to risk it , they improved (thry had gotten weak) after 6 weeks of vitamin D. Never foind out if coincidence



howcone you think yours is not mast cell nexiated despite chemical sebsitivity issues, intermittanr angioedena, food allegies, multippe AI, strange symptoms

both graves and hadhimoros? Meaning yku have both types of anti thyroid antibodies?

on second vaccine, isnt the most important thing whether your nasty side effects have gone away? Have stuff to say on ykur other thread on mrRNA vaccines and your lack of reaction to otgers. when i get the energy.
based on the poll at health rising, for both moderna and pfizer , about 10 percent of those with CFS continue to have side Effects 30 days after vaccine. Or is concern that even if folirst set resolves (have they?) second set will not?



was glad i did not risk biopsy and did learn after its rarely useful even if they find glaring red fibrers. And have had a couple even of docs saying do tnot get a muscle biopsy (not that i care except to note that even if an oblivious MD warns about it, that must really be saying sonething)

i do t hace the bowel issue but any bleeding after an episode? Just wondering if maybe some ischemia. Blood flow/oxygen problens coukd affect both muscles and bowek. So can food sensitivity i think- coukd be snother nast cell reaction


Yes, we do seem to have a lot of overlapping problems. What you described with the muscles and tendons, that is exactly what happens to me, but not all the time. I seem to go through phases and I don't know why.
I haven't explored the MCAS avenue yet. I don't know a lot about it.
I was diagnosed with Graves' and had a thyroidectomy and the pathology report said I had Hashimoto's. It was so long ago that I can't remember if I was ever tested for the antibodies.
Yes, all those are concerns as far as the vaxes go. I'm most concerned with long term effects, which it seems I may be having.
 

jen1177

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I dont know if i should add this, but my friend who lives in norman said its a shit show hear and nobody knows what they are doing. Giving vax that is. Like measurements are not homogenized, sometimes they dont even give out the vax, sometimes too much, some people get sick. 5 got ill so far at their place on pfizer, one had to get cpr. On reddit too some are getting long haul from vax. Sorry if this is too
Much just what i’ hearing. For most its fine im pretty sure, nust crazy to hear these things.
Where is Norman? Yikes, I had not heard that some people were getting long haul symptoms from the vax. That is exactly what I am afraid of.
 

jen1177

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Here's what I've been hearing so far as of March 11, 2021....these are all the scenarios I've heard reported by others:

-- little to no reaction to #1 ----> little to no reaction to #2
-- little to no reaction to #1 ----> medium to large reaction to #2
-- medium reaction to #1 ----> reduced reaction to #2
-- medium reaction to #1 ----> increased reaction to #2
-- large reaction to #1 ----> lessened reaction to #2

I am not hearing that people who had a large reaction to #1 had an even worse reaction to #2. So far that bodes well for me with #2, but I'm still not sure I should take the gamble.
 

Gingergrrl

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Re: vaccine distribution...same here, it was basically a mistake/oversight that I was able to get vaccinated during the 65 + age group, that's why I am trying so hard to figure out if I should get the second shot. If I cancel the appointment I will have to wait a month or two and then compete with a lot of others for an appointment.
I don't know if this will be helpful in your decision making process, but President Biden said in his speech tonight that ALL adults will be eligible to get the vaccine by May 1st. He clarified that it did not mean that all adults will have gotten the vaccine by May 1st but that all adults will be eligible. In my state, I had heard that my age group might not even start until June or July so this is definitely an improvement. It doesn't change anything for me since I am going to be declining the vaccine, but I wanted to mention it in case it was relevant for you.

Re: FB group...yes, please post the link, thanks
The FB group is called "ME/CFS and the COVID VACCINE". It is a private group (so the content is only visible to members) but they are still taking new members and you just have to ask the moderators to join. I originally learned of it a few months ago here on PR.

Re: vax safety...I only recently learned of these adjuvants -- very good point that I hadn't thought of, so I googled it and the Novavax does have an adjuvant. J&J does not but still uses a harmless virus to invade cells and make copies of the spike protein which seems like a lot of work for the immune system, similar to the mRNA vaxes. I no longer feel that any of these vaxes are safe for me.
I have been studying these vaccines for months (and am trying not to become obsessive about it!) but I truly believe that the COVID vaccine has the potential to end my remission. I have spoken to my doctor about it in great detail and he supports my decision but so much about these vaccines are still unknown. I am confident in my case (if I ever were to get the vaccine) that it would be one that did NOT contain any adjuvants.
 

jen1177

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I don't know if this will be helpful in your decision making process, but President Biden said in his speech tonight that ALL adults will be eligible to get the vaccine by May 1st. He clarified that it did not mean that all adults will have gotten the vaccine by May 1st but that all adults will be eligible. In my state, I had heard that my age group might not even start until June or July so this is definitely an improvement. It doesn't change anything for me since I am going to be declining the vaccine, but I wanted to mention it in case it was relevant for you.



The FB group is called "ME/CFS and the COVID VACCINE". It is a private group (so the content is only visible to members) but they are still taking new members and you just have to ask the moderators to join. I originally learned of it a few months ago here on PR.



I have been studying these vaccines for months (and am trying not to become obsessive about it!) but I truly believe that the COVID vaccine has the potential to end my remission. I have spoken to my doctor about it in great detail and he supports my decision but so much about these vaccines are still unknown. I am confident in my case (if I ever were to get the vaccine) that it would be one that did NOT contain any adjuvants.
Yep, I heard it on the news about the plan to make vaccines available to everyone by May 1st. We'll see if it actually happens. Thank you for the name of the FB group. I will check it out.
I totally agree with you about the vaxes causing worsening chronic conditions for people like us. But the alternative is living like a hermit who has germophobia, agoraphobia, OCD, etc. for the rest of my life. I don't know how much longer I can do it and stay sane. I haven't hugged another person in a year. But if I don't live like that it is a matter of time before I will actually get covid and then I probably would not survive, and if I did I would probably be so disabled that life would not be worth it. It could be years before the virus mutates into something like a cold/flu, or it might never mutate into something less deadly & severe. So many unknowns and impossible choices. :(
 

bertiedog

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I feel I should add that I just took an antibody test today and it was negative (3 weeks after my 1st Moderna shot)
My understanding is that there are 2 different types of antibodies and the sort of test you had won't show up antibodies from a vaccine. It was a very knowledgeable UK doctor/researcher that has said this on several occasions. His name is Dr Chris Smith and he does many phone-ins on the BBC especially Radio 5.

So I don't think you have to worry over your result it would be as expected and very normal.

Pam
 

jen1177

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My understanding is that there are 2 different types of antibodies and the sort of test you had won't show up antibodies from a vaccine. It was a very knowledgeable UK doctor/researcher that has said this on several occasions. His name is Dr Chris Smith and he does many phone-ins on the BBC especially Radio 5.

So I don't think you have to worry over your result it would be as expected and very normal.

Pam
Yeah, I knew that going in to take the test, but my doctor suggested it so I figured I might as well try it out just to see. I figured if it came back positive that would tell me the vax had worked. But a negative result wouldn't tell me anything.
 

jen1177

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Just an update....I finally decided to not get Moderna #2. There just is no way to know what will happen. I can't risk getting even sicker than I am right now. I am still not feeling back to my normal self. At this point I can't even be sure of what is causing it. It might still be from Moderna #1 or it could be from other things. The more I read about mRNA vaccines the more I question the safety of it. I might, down the line, get a different type of vax against covid.
 

jen1177

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I had a bad reaction to my first AstraZeneca vaccination and have been advised not to have the second dose.
Me, too. My regular doctor said it was up to me, my naturopath said not to get the second shot. I even called Moderna and they said it was up to me. Since no one was saying anything like "don't worry, the second shot is easier if you had a bad reaction to the first" I had to conclude that the safest thing was to not get the second shot.
 

vision blue

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I was diagnosed with Graves' and had a thyroidectomy and the pathology report said I had Hashimoto's. It was so long ago that I can't remember if I was ever tested for the antibodies.
QUOTE]

yet.
One of the things about Hashimotos that alot do mot know is that there can be a period of hyperactive thyroid activity first before (i think even years) before the familiar hypothyroidism occurrs. One wonders how many people with hyperthyroidism are misdiagnosed as Graves

I will check the last post to see if you have decided