Vaccine & EDS: Has anyone who's had the... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Vaccine & EDS


Has anyone who's had the covid vaccine notice their EDS symptoms suddenly get worse after the injection. I had mine yesterday and by the evening I had severe shooting pains, the worst I've ever had, plus I was over heating, had a stunningly bad headache, this nuisance cough I have is back and my epigastric symptoms worsened. I'm trying to work out if this was going to happen anyway or if it's related to the vaccine. I would appreciate your thoughts. Thank you.

21 Replies

Covid vaccine can cause flu-like symptoms also people with EDS tend to have all the bad reactions. You normally feel bad for at least 2-3 day but it should ease up!

AiMax in reply to Fuunycat

Thank you. I was expecting a little reaction like pain on the injection site, possibly a temperature but I wasn't expecting severe nerve pain, pain all down my arm that had the injection, joint pain which has now developed and a rash just on my forehead which I've had before, and it feels like my foreheads on fire. EDS is a weird thing, it really is.

Sometimes people with suppressed immune response and other CNS issues the vaccine can cause some side effects - pain, nerve tingles etc. It's just the body overreacting to a threat that doesn't exist.

AiMax in reply to saspa4260

Thank you. That's reassuring.

I'm quite certain that EDS has very little connection to the immune system. It is a defect of collagen. A genetic condition.

Yes it does make us far more fragile than others so in that respect maybe it's wrong of me to say that it's not going to affect the immune system. Anyone who is far more fragile is going to be at risk and so I suppose I would agree that someone with EDS is more susceptible to immune system disorders!!

I understand that the vaccine boosts the immune system. EDS patients could get more of a boost to their immune system than others so now I agree that the symptoms would be much worse for some.

Definitely you should expect to be quite ill with flu like symptoms for 2 or 3 days.

People who have EDS are also very susceptible to suffering after any needle pricks! I had just a simple blood test. My GP took 4 attempts to find a suitable vein. Each of these sites caused me pain for over a week. The one where she managed to take the blood, was the back of my hand, is still bruised and my whole hand is painful - it's been two weeks now! I'm having another blood test tomorrow so goodness knows how she's going to find a suitable vein!

My whole family have EDS because both my Mother and Father had EDS. There are 5 of us children still alive. I'm the youngest at 64. The oldest sister must be 72. My Mother is alive and she's 94 - the same age as the Queen! My Mother had no symptoms at all following the vaccine - she stated that she slept without interruption for the first time for decades!

The Sister who is the next one up from me had terrible symptoms. I would suggest anyone who is having the vaccine to take Paracetamol to PREVENT symptoms but PLEASE be sure to check with your DOCTOR before listening to my advice. It's better to PREVENT the side effects than to TREAT the side effects. If you find that you are so ill that you have to spend time being completely inactive be absolutely SURE to gently exercise your limbs. Preferably get up and move around slowly. If you can't cope with weight bearing activity don't forget your bed is the ideal place for non weight bearing exercises!

Lying flat and lifting your legs up to 90 degrees and then carefully bending the leg from the knee joint -10 repetitions maximum for beginners. I can't do circular movements. If you are ok with circular movements then cycling in the air is very good and moving your feet round from the ankle joint. If not scissor movements are good too.

If like me you can't do circular movements then simply moving the foot up and down from the ankle joint is great. The idea is to keep your blood flowing round your body to prevent problems caused by long periods of inactivity - just as you should do on a flight!

My Sisters daughter and the daughter,'s daughter both have EDS. The granddaughter who is around 21 had very severe symptoms for more than a week following the vaccine. She also had to wear dark glasses. I'm not sure whether she became over sensitive to light or whether it was because of the very severe head pain. I believe she has now fully recovered and is back at work.

My oldest sister had no side effects. My brother had no side effects but he seems to be less affected by his EDS than the females. Another Sister had no side effects.

So everyone has proven to be very different but then our EDS symptoms vary in severity too. I think those who have more severe EDS symptoms being the ones who suffered more following the vaccine.

I have other conditions which prevented me from having the vaccine. My lungs are very severely damaged caused by my immune system going into overdrive. With oxygen levels already sometimes dropping down to 76% and regularly dropping down to 82% I just couldn't risk further deterioration. Lower oxygen levels would mean I would need high flow oxygen which would be impractical to install at home unless there was a long term need for it. I am on already on supplemental oxygen. I certainly couldn't risk having to be admitted to hospital during a Pandemic!

I am obviously extremely upset that I wasn't able to have the vaccine. The risks of COVID-19 are far higher than the risks from having the vaccine. I am mainly too ill to go out but I would have still much preferred to be protected by the vaccine!.

Sorry this post has got so long! I should mention that it's difficult for me to be concise because like many people who have EDS I am Dyspraxic. Clearly very severe Dyspraxia in my case! Lol Watch out for hypersensitivity following needle pricks!!

To make it absolutely clear - I do support the fact that people with EDS are more susceptible to immune system disorders purely because we are far more fragile BUT not because EDS is an immune system disorder. There's a massive difference!

Jay66 in reply to TwinklingStar

Hi - you say there isn't a connection between EDS and the immune system. However, there is a connection. It is just not much is known about it. Virtually everybody with EDS also has an autoimmune condition too. Often two or more. Nobody knows why, or whether EDS causes it or how they are connected. But connected they are.

In my case psoriasis. Other people have lupus, Sjögren’s, MS, rheumatoid arthritis and so on. Many have IBD.

I've had the jab and suffered more side effects than most people I know. But I'm glad I've had it. People I know who have already had the disease seem to be reporting worse side effects, but there seems to be no real pattern for the public of who will get really bad side effects and who won't. It passes within a few days.

TwinklingStar in reply to Jay66

Yes if you read my answer although I started by saying that EDS has little to do with the immune system I went on to say that many people with EDS do have immune system disorders because of us being so fragile.

Also I dispute the fact that ALL these diagnoses are true diagnoses. Many people who gave EDS have spent decades trying to get a diagnosis. In my own case I was "diagnosed" PREVIOUSLY with:

ME, Rheumatoid Arthritis, Underactive Thyroid, Overactive Thyroid, Chronic Fatigue Syndrome, Myasthenia Gravis, Sjogrens Syndrome, Multiple Sclerosis, Irritable Bowel Syndrome and Fibromyalgia!

Now I'm not stupid! There's NO WAY that most of these diagnoses have anything to do with EDS! They are purely INACCURATE diagnoses that should be totally disregarded and REPLACED with the correct diagnosis of EDS!

I am afraid that what many people do, who have EDS, for some reason cling onto all these years of INACCURATE diagnoses. I wish someone would educate them! The DOCTORS labelled us with ANYTHING they could get away with!!

Now I'm not suggesting that a person's symptoms of Psoriasis are not REAL. Yes the person clearly has Psoriasis! EDS causes us to be extremely fragile so yes people who have EDS are going to be far more susceptible to having any skin condition or allergy or hypersensitivity. Our blood can show inflammation but I doubt very much that it is a TRUE diagnosis of Rheumatoid Arthritis! Fibromyalgia has almost the same symptoms as many of the symptoms of EDS but we don't have TWO different causes for those symptoms. IBS is generally NOT a true diagnosis in people who have EDS - it is usually a condition called Intestinal Dysmotility or Gastroparesis.

My test results for Overactive Thyroid, Underactive Thyroid, Sjogrens Syndrome all turned out to be totally inaccurate diagnoses. The overactive thyroid being caused by excess iodine from eating a high amount of yoghurt! Immediately I stopped eating the yoghurt the test showed normal thyroid results! Iodine is injected into cows so is present in ALL milk products.

And I'm very tired so I won't go on. Now it used to be that Doctors were trained to look for ONE SINGLE diagnosis to explain ALL the symptoms of a patient. This is NOT to say that a person can not have TWO DIFFERENT diagnoses. This is very common in fact. A person will often have EDS OR MS but they can still become Diabetic. What it does dispute is that a person does NOT have two conditions causing the EXACT same symptoms. A person who has EDS does NOT also have Fibromyalgia. The pain is caused by the EDS, as is the terrible fatigue, and other symptoms!

These people who cling on to multiple inaccurate PREVIOUSLY diagnosed conditions are truly letting us all down! Those people who do this are giving Doctors who STILL don't believe EDS is a REAL condition the ammunition to support their inaccurate beliefs!

Now to make things ABSOLUTELY clear:

Yes a person with EDS is FAR more fragile and will frequently have EDS related Psoriasis, allergies and hypersensitivities!

A person who has EDS will frequently show inflammation in their blood results!

A person with EDS has frequently experienced a difficult birth and this will show up on MRI or electrical evoked potential tests which test the electric activity of the brain. BUT they will NOT have EDS AND MS! They will not have TWO TOTALLY different causes for their fatigue, their joint pains, their lack of coordination, etc!

BUT YES of course a person who has EDS can also suffer with under or overactive thyroid or diabetes, etc.

MY argument is that during my 54 years of fighting for a diagnosis I would then be making myself look PARTICULARLY STUPID if I were to believe AND hang on to ALL my previous INACCURATE DIAGNOSES!

Of course, people can have EDS and then get bitten by a tick and also then develop Lyme's Disease! I don't know quite know how to get this important fact over to people. My post will no doubt upset many people!

Frankly, anyone who still believes that they have EDS AND MS AND ME AND Fibromyalgia clearly need desperate medical help. Anyone who declares this to a Doctor should expect the reaction they deserve!

Yes we do frequently suffer from autoimmune disorders purely because of our EXTRA FRAGILITY!

I hope my post doesn't upset too many people! If you are upset by reading this then I am truly sorry. I have a great deal of experience in EDS and multiple inaccurate diagnoses. If I have upset you then wait a few days and read it a second time. It's been posted to help ALL of us. If we expect support with our EDS we do need to understand the irrelevance of PREVIOUS INACCURATE DIAGNOSES!

Sorry for the rant!! And YES I have EDS and Hepatitis C, and Hepatitis B, and CRPS and Dyspraxia & associated brain abnormalities, Musculoskeletal Abnormalities AND Gastric Dysmotility, at times more severe - Intestinal Paresis (NOT BOTH AT THE SAME TIME! Lol) skin conditions, hypersensitivities to foods and other things (as opposed to true allergic reactions ,ie. I don't suffer from anaphylactic type reactions), my immune system has in trying to fight the Hep C has at some point gone into overdrive and attacked my lungs! Oh and I have POTS.

YES except for the Hepatitis All these things are known to be things caused by or closely related to EDS!! The hepatitis was caused by being given contaminated blood during a 6 unit blood transfusion.

What I don't have: ME, MS, IBS, Myasthenia Gravis, Fibromyalgia - these are ALL COMPLETELY INACCURATE DIAGNOSES made PRIOR to me being diagnosed with EDS!

AiMax in reply to TwinklingStar

Thank you for your comment. I appreciate it. You have written your comment well. EDS is not an immune disorder I agree but it can affect the immune system with conditions that affect the autoimmune system. With me I have had to self isolate during lock down as I am more susceptible to infections. When my son would have a minor cold I would catch it and have a full blown cold with high temperatures for 2 - 3 weeks and a severe chest infection every time. Also with EDS it can affect the absorption of vitamins and minerals through the gut which can have an effect on how strong the immune system is if the immune system doesn't have what it needs to repair and replace its cells. I would encourage everyone that can have the vaccine to have the vaccine because in doing so eventually we would be able to protect those that can't have the vaccine like you.

TwinklingStar in reply to AiMax

Thank you. Yes I agree totally that we are much more susceptible to EVERYTHING! Immune system problems, skin problems , heart disorders, and just about everything!

This is probably because the defect in the collagen makes us very fragile causing everything to be oversensitive or defective. POTS is a good example of this where just from changing our position we get a very sudden rise in heart rate and some people also get a sudden fall in blood pressure.

I have to get to the surgery early tomorrow for a Cortisol level test. It has to be taken first thing in the morning hence the repeated visit for blood to be taken.

Then back a third time for blood to be taken which must reach the lab within 6 hours! For a special test to measure my Liver Fibrosis - I think it's called an EFL test. That is in connection with the Hepatitis C from blood transfusions.

AiMax in reply to TwinklingStar

Thank you for your comment. I hope tomorrow goes well for you.

My son and I both had our vax at the same time on Saturday. I have been absolutely fine, no increase in pain or any other symptoms, barely felt anything at the injection site.

Son had erratic heart rate, increase in pain and fatigue, headache (which he never gets) and generally feels really horrible, even now three days later.

We both have EDS, presumably the same kind, but immune systems are the most unique of all bodily systems, and no one is the same.

With your immune system, even without EDS, you may have had the same reaction.

AiMax in reply to cyberbarn

Thank you. I've had vaccines before with no problems so this one took me by surprise.

Do you know which one you had? I’m about to go for mine... will keep you posted!

AiMax in reply to ecaps10

Yes. It was Astrazeneca vaccine. Thank you.

ecaps10 in reply to AiMax

I woke up at 3.15am freezing cold and all my mild hurts intensified dramatically. My body is not happy! Headache and over heating have since joined in. Such fun! But I’m holding on to the truth that COVID itself would have been 💯 worse!

AiMax in reply to ecaps10

It will pass. The symptoms that I had started to disappear after 48 hours. I had terrible shivers and no matter what I did I couldn't warm up. Then I was over heating. As my symptoms have now improved and everything has gone back to how it was I do think the vaccine may well affect EDS symptoms. It's worth people knowing it might happen. I hope you recover soon. Thank you for talking about your experience.

0101 in reply to AiMax

It's been really useful reading this thread and your comments too AiMax. Sometimes hard to know how I should react suitably when people scratch their heads saying 'you couldn't have had that reaction' when I am having symptoms. I had a few hairy days of bad flu-like symptoms and waited til it passed. High temperature, severe headache and shivers were quite bad. When fever passed after a few days I felt so relieved :-). Read some things about a stronger reaction being more common in younger people due to the way their immune system responds but am not an immunologist so figuring it all out.

Thank you. It is a relief to know it will be over soon!

AiMax in reply to ecaps10

All I've got left from the symptoms I had on the day of the vaccine on Monday is a persistent, crazy twitching eyelid. I'm keeping away from people because it does look like I could be giving them an over the top wink :)

I would urge everyone to remember that PREVENTING the side affects is FAR better than treating the side effects! If you can take 2 Paracetamol immediately following the vaccine and at the usual intervals for the first 48 hours you should be able to prevent these uncomfortable side effects.

AiMax in reply to TwinklingStar

I absolutely agree with you. The side effects are short lived with this vaccine and they will pass. I'm glad I've had it.

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