Hi everyone
I took my one and only pfizer vaccine in September 2021. 24 hours after all have started… tingling, numbness, tinnitus, muscle twitching, burning, pins and needles. I was slowly recovering from that, I had some flare ups but I was getting better, it was gone in 90%. Now it’s all back even stronger I feel like I will never recover, I am only 28 and don’t have kids 😞
Another morning waking up sobbing, so frightened that the pfizer has given me m.s. I'm literally so so scared. Tingling constantly, even my eyes hurt at times. I'm so scared. Have dr again tomorrow. The symptoms had pretty much gone after a year, and then boom, they came back with a vengeance. I'm so scared.
@paulina-m Hi Paulina,
I am so sorry to hear that the symptoms have all come back for you! I am coming up on my one year since my one and only dose as well, and I am in the exact same situation at 27 years. I also have extreme ear pain and pressure and am losing all of my hair 🙁 It’s extremely scary and disheartening. Just know that you are absolutely not alone ❤️❤️.
@montydes when I do a light touch of my outer thigh I can feel my foot plant tingle, like barely passing fingers through it, no idea what that could be
I’m now 13.5 months into this ‘situation’ we’ve all landed in – I was going to share an update at the one-year mark, in case it was any help to anyone, but the reality is that I don’t know much more than I did when I first posted (think it was March this year, around P126).
Briefly, I had Pfizer No2 on Sept 13, 2021, and immediately suffered anaphylaxis, requiring three shots of adrenaline and a trip to hospital. Since then, I’ve had all the usual tingling, burning, coldness, numbness, tightening, pressure points and weird creepy-crawly sensations. I also relived v similar symptoms to the anaphylaxis, causing swelling, numbness, tingling and tightening in my head, neck, mouth and face every day for months. Also, muscle weakness, being sort of ‘pushed’ to the side when walking, sharp bone pain during flare-ups and some tinnitus just for additional fun. Oh, and new allergies/reactions to things I wasn’t affected by before – spinach, dark chocolate (that one hurts), medical tape … just random things that my immune system now has a problem with.
So far, I have seen:
* Immunologist.
He initially said this presented as textbook mastocytosis. After a range of tests, inc one that analysed my mast cells over a month, the results showed – normal mast cell form and function, so not mastocytosis. The next thing to examine is PEG allergy (I have been affected by PEG before), but he can’t do the tests until I have at least three months of stable health with low symptoms (or pref none). I’ve not yet had a day symptom-free, so the wait goes on (he also prescribed four antihistamine a day).
While we wait, the immunologist generated a referral to a neurologist in the hope that they can pool expertise and work together, each focusing on their own specialist area.
* Cardiologist.
Due to long waiting times, I didn’t see him until 11 months after the second shot. He said my chest symptoms at the beginning – which an ED doctor originally attributed to costochondritis – sounded more like pericarditis (it was a feeling that someone was pressing their palm down heavily into the centre of my chest and I couldn’t get my breath all the way in. Also, extreme breathlessness and heart beating out of my chest with v minimal exertion).
Cardiologist was v good and did a scan even though it was 11 months after the event – and found a 2mm area of pericardial inflammation still remaining. This is not considered significant at this stage, but does back up his suspicion about what was initially affecting me.
He was the most candid of anyone I’ve seen and admitted that v little is yet known about the mechanisms involved in Long Covid, and even less about these vaccine reactions. However, he agreed it seemed sensible to approach my recovery as I would approach recovery from LC. So, I continue with gentle exercise like tai chi or walking. He agreed with the immunologist that I need to see a neurologist.
* Neurologist.
Oh wait, I didn’t actually see a neurologist because … my doctor put through the referral, as requested by the immunologist, and this is what came back (paraphrasing, obv)…
We don’t need to see this patient because we have seen a small group of patients with vaccine injuries, and we didn’t find any underlying malignancies with any of them. Tell her that time appears to be the only treatment and, BTW, don’t get anxious because that will make it worse.
Honestly, I don’t know whether to laugh or cry. Imagine taking a year-long headache to the doctor and him saying, well, hey, I think you will be just fine because my last three headache patients didn’t have anything major wrong with them …
* Psychiatrist
I am very lucky – due to the immediacy of my reaction – to be receiving wage compensation from a government department (and I’m both angry and sorry that many of you won’t be receiving this support when you really, really should be). However, it means I have to agree to things like being analysed by a psychiatrist (I have to be seen to be trying all avenues to recover etc). I’m also starting to get the message that they believe I had anaphylaxis, but they don’t really buy the fact that I’m still having symptoms nearly 14 months later.
So, I spoke to a psychiatrist, and he was keen to tell me that the mind is a very powerful thing and I could well be imagining into existence all this tingling and tightening etc – that physical symptoms don’t always start in the body. I get the power of the mind, but what I don’t get is the medics who will not listen to me or take me seriously when I say, ‘But, hang on, there are hundreds of people all over the world independently describing exactly the same symptoms as me. We’ve not even met and we’re using the same terms to describe these unique sensations that none of us have ever experienced before.’ I said a version of this to the psychiatrist and he couldn’t understand why I was so offended about anxiety as a possible generator of symptoms … as we all know, that is not what I’m offended about! I just want this to be seen and heard for what it actually is.
The better news … the neck and chest symptoms have lessened in intensity over time, but do make themselves felt during flare-ups. The neuro-type symptoms and bone pain are perhaps gaining a bit in intensity with each flare-up, but definitely liveable on a day-to-day basis – and, on the flipside, the good days are also stronger than they were. Overall, I feel stronger than I was six months ago, and definitely way better than I felt a year ago. So, I echo everyone else who says it’s a long, gradual road to recovery and that it’ not linear – flare-ups have been triggered along the way.
Finally, I know I’m getting better because I now have enough energy to be absolutely raging about the way we’ve been treated as a community of patients - and even if I wake up tomorrow and I’m 100 per cent recovered, I will not stop speaking out about this. I’ve tried to gain traction with three different journalists and had a long phone conversation with one who actually took the time to follow up my email. If this doesn’t start to gain the coverage, discussion, research and investigation that it deserves, then I’ll start my own site and push the hell out of it that way.
I think I’d better stop before I enter a full-on middle-aged rant, but I know people have sometimes wondered where earlier posters have disappeared to, so I just wanted to provide an update – and to say that I, for one, will not be walking away and forgetting about all of you any time soon. I really feel for anyone who is suffering – please know you’ve been seen and heard and those of us who are getting stronger will just keep getting louder and louder in our requests for help, validation, support and truth. Also, I have midlife hormones and no one wants to be messing with those!
Ps. Intermittent fasting has been great for me, as well as the usual vitamins and turmeric (I really notice the difference if I run out of stock and don’t take that one! … don’t take it with some medicines, though as it’s a blood thinner and can react with some medications).
Take care everyone and sorry I don’t have more definitive news, but overall I’m stronger than I was (and just a bit rantier). PPs. Another one here who had anaemia post-vax and I feel so much better since taking iron supplements for the past five months.
So I went back to the dr today for reassurance I'm not suffering from m.s or another horrible neurological disease, and after another thorough exam, he assured me that I do not. I'm having all my bloods done again in 2 weeks to cover all bases (I have to take no supplements in the next 2 weeks so that the readings will be accurate to my actual body). I'm feeling better, even if the tingling relentlessly tingles away, 24/7!!
Now they are asking for "Pandemic Amnesty". Unbelievable!
Make all of them accountable.
https://www.theatlantic.com/ideas/archive/2022/10/covid-response-forgiveness/671879/
I have been posting recently about my most recent flare up. I am waiting on another MRI result of my head with contrast (I had one in Jan without contrast that they said was normal even tho it did show 2-3 tiny lesions they were not concerned they were related to the symptoms). Assuming this MRI is OK I am also waiting on a significant amount of blood work from my Rhuematologists and an integrative dr-who does think the VX can bring out issues like Lyme that I may never realized I had. I am just wondering, has anyone has flare ups that not only affect your whole body but this time my stomach is on and off tender and just way off. And my muscles (back, arms legs) have random pulsing pain and spasms. I remember having back and neck pain when this all started but the locations of pain seem different. Even my joints ache on and off. My brain fog is better, no headaches, pins and needles seems to have lightened a bit (I am on week 7 since this flare up started). My vision still gets wonky when I look at certain things but that started last year and never went away, same with the tinnitus-its not horrible but its there and has been for a while. I am having an ultrasound of my abdomen next week and possibly an upper GI/colonoscopy even tho they do not think there are any issues, its more for my own sanity at this point. Over a year with no answers can be scary. I am starting to get back into a workout routine this week as I ususally work out 5-6 days a week and since this flare up it came to a halt, maybe making my pain feel worse honestly. They had me try gabapentin along with prednisone which I am not a huge fan of just trying random medications and honestly, I can't tell if it helps or if this it just getting better like it always does after 6-8 weeks. Its literally like something just travels thru my body head to toe affecting every part of me, then goes dormant for a while. I will let you all know how my blood work and imaging comes back.
PS-my MRI tech today asked me what was going on, I let him know this all started after my VX last year and his exact words were "yea I hear this a lot lately unfortunately"
@kg1986 I'm the same, it does it's thing then disappears on it's own and you think ahh the accupuncture must have fixed it or the b vitamins or iron tablets and then it comes back and your back to square one. I haven't found anything that helps and probably would have been the same if I had left it without all the treatments/vitamins..
Is there anyone who recovered? Please I need someone to say that I need it so bad…
@montydes Hey, yeah, I have something similar going on; just the other way around. A slight touch to my heel and I get a buzz/tingling sensation up my leg till my knee. And it happens every time I feather-touch that part of the heel; sometimes the buzz is more intense and other times, not so much.
@vaxstuff22 I only had as john, blood tests and simple tests of nerves and reflexes done by the neurologist (uk - when I saw him back in july I was feeling so much better). I'm frightened now, again, I have something awful like m.s. It is reassuring to here of us experiencing the same things though. I wonder what is doing this to us? Its horrible thinking we will probably never know...
I just hope every day it all starts really going away again. Take care, know you are not alone. There are others experiencing the same things all over the world. Take care
@vaxstuff22 @volam76 @buzzgirl - to update you all and hopefully bring some hope and guidance… so this relapse that has lasted 3-4 weeks so far has been a bad one, especially the last week my nerves were burning so painful over a lot of my limbs. I went to see the GP on Friday and a couple of things that may help you all… I’m in the Uk by the way in case some of the tests or meds are called different names where you are..
i told her of my issues and straight away she believed me and that it was because of the vaccine. She said she has other patients suffering the same pins and needles and burning nerve pain and she said the more boosters people have (in the Uk they are giving out 2nd boosters now) the more these problems may come to light with more people coming forward with side effects, she also told me don’t have any more vaccines and I said don’t worry you couldn’t pay me to have another! So back to the appointment. She went through some blood tests I had done 2 weeks ago and was waiting in results, it was a thorough blood test and the only thing it found was low iron. My iron count was 10 and she said it should be as high as 120 - she said having low iron can contribute to nerve pain and pins and needles. I’ve never had low iron before in my life and I’ve had lots of blood tests over the years - it’s since the vaccine. I searched on this group key word “low iron” and found others having the same problem linked to the vaccine - I mentioned it to my auntie today and she has had the exact same issue - low iron from a blood test since the vaccine and again she has also never suffered with low iron before! She told me to go to the pharmacy and ask for the 200mg iron tablets so I’ve been taking these for 3 days (be mindful your stools will be black haha don’t be alarmed!)
as well as this, I’m also trying for a baby at the moment so I cannot take the usual gabapentin or amatriptaline for risk to a pregnancy and I wanted something to help with the nerve pain. She suggested a steroid called prednisolone that I take for 5 days - it reduces inflammation. Well let me tell you I’ve only taken it for 2 days so far and yesterday and today my nerve pain has been sooo much better im not feeling it that much at all. It could be a combination of the iron tablets and the steroids but honestly I feel Loads better already - look into it if not already with your Gp they can give you a prescription for a short course of steroids it’s certainly helping me so far and it doesn’t carry the side effects that gabapentin does - she said it was safe for taking when trying for a baby so can’t be that bad to take.
the third thing I requested and spoke to her about was a spike protein test. She has written to Immunology department at the hospital to request this test to be done so we can measure the amount of spike proteins in my body. If the number is high it will prove the reason for my suffering, then the million dollar question is how do they get rid of the spike proteins in my body or is it just something that will reduce in numbers over time till it eventually leaves our bodies. On this forum I’ve read of other people having this test at a point in time and the numbers are high, then they have the test done again a few months later to show the spike proteins coming down which means it’s slowly working it’s way out of the body.
You can also order the test online privately as an at home kit - some kits don’t tell you the actual spike protein levels they just say “positive” or “negative” so check in the details before ordering.
the gp dr has asked to see me again on the 4th November to see if these steroids have a, done the job and resolved all my nerve pain, b, done the job whilst I was taking the steroids and then symptoms return or c, even done anything at all. She also said if we’re waiting too long to have the spike protein test done at the hospital I could also order the home test kit by then and send off for it myself.
i told her about our group and the support and advice we’re all sharing with eachother to get through it and she was really impressed and supportive of it and that we are taking matters into our own hands to help heal ourselves when so many drs aren’t listening to us and dismissing us!
anyway I’ll be finished these steroids in another 3 days so when I’ve finished them I’ll give it a few days to see if the pains return and then I’ll come back on here and update you all but so far so good!keep the faith and take comfort in all the negative scans and blood tests were all getting for any bad illnesses - yes I had low iron but it’s easily fixable and it might just be one of the causes of this nerve pain.
Be back with an update in a few days 🙂
I’ve attached a photo of the home test kit I found for the spike proteins
P.s. When you see this GP next, can you please ask what other suggestions she might have. Also any feedback on what was effective for other people she might have seen.
Thank you!!
@volam76 @buzzgirl @vaxstuff22
so it’s been 2-3 days since I finished the steroids and unfortunately as feared symptoms of burning tingling nerve pain have returned. The steroids certainly helped the pain whilst I was taking them it’s just annoying that it hasn’t resolved. I’m seeing the gp who put me on them on Friday the 4th so will look at next steps with her.
had some bad news the other day, immunology wrote back to the gp and said they won’t do the spike protein tests because they see no evidence that my symptoms are linked to the vaccine!!! I was soooo angry as you can imagine, how dare they make such a bold statement when they have no proof that it isn’t caused by the vaccine! Looks like I’m going to have to have that test done privately. I’m so frustrated with the nhs and their lack of knowledge or belief for people suffering with vaccine side effects!
@buzzgirl to answer your question in your other post, when the gp told me she had other patients suffering the same it was my immediate question - “have they gotten better” and she said they haven’t yet found resolution because they are also on the same timeline as me - symptoms started for them in November:December last year when they got their first booster vaccines.
Although it will be 12 months on Jan 10th since my symptoms started I can’t say I’ve been Ill or suffering for almost a year. I’ve had 2 episodes/periods of time during the last 9 and a half months where I’ve suffered with symptoms/side effects.
jan 10th the first initial symptoms lasted around 8 weeks and then in this 2nd random relapse I’m now around 5-6 weeks in. I’m hoping this relapse follows a similar pattern to the first which would mean I should start to feel better in 2-3 weeks but who knows. I don’t know if this is just coincidence but on Wednesday this week I caught a stomach bug that I am still battling. As my immune system is down whilst I’m unwell, that could have affected the steroids working - I still had 1 more day of steroids to take when the stomach bug started and as I say all my nerve pain is back so wonder if me being unwell with a virus has had an affect - I’ll ask the gp on Friday. I can’t eat really at the moment with this bug but once I’m better I’m going back on my ketovore diet. I cut out all carbs and sugar (as John referred to) I eat a lot of red meat and some low oxalate vegetables. I first learnt about a meat/animal based diet through a guy called “Liam stops tinnitus” you can find him on Instagram and YouTube and he has lots of videos and resources. I was suffering with tinnitus from an ear infection unrelated to the vaccine and so came across his advice. This woman in the YouTube video below suffered vaccine injuries like us and one of her side effects was tinitus so she followed Liam’s advice which is to eat only meat, liver, eggs (carnivore), get sunlight, take cold showers, grounding (walking barefoot on the earth) no tap water, (I bought a water filter jug on Amazon and now use that) exercise, and some fasting.
here’s the video it’s an interesting watch.when I was following an animal based diet for a few weeks before I got this virus, my 15 years of TMJ issues went away, my ibs issues went away and all my gut inflammation, acid reflux was gone and if I’d been able to carry on with it a few more weeks I really think it would’ve helped my nerve pain seen as though this way of eating reduces inflammation in the body.
I’ve watched videos of people who are carnivore on YouTube and they have come off their MS medication and reversed type 2 diabetes so that says a lot..anyway just sharing if anyone wanted to give it a go or research further into it - dr Ken berry is worth a watch on YouTube too - he talks about nerve pain and carnivore.
anyway, I’ll come back on here after my appointment with the go on Friday and let you know how it goes.
Stay positive everybody, we will fight this and get better! 🙂
Hi
Thank you for update. Its complicated hey. I look forward to your update after seeing your GP next.
There is another spike blood test you can do, c/o Incelldx. Apparently it's available in the UK now. It is supposed to see how much "spike" is in your body.. not antibodies.. honestly I think both tests would be beneficial. S1 Immune subset test is what its called.
https://www.covidlonghaulers.com/
Mike411 posted this in a Facebook Group.
I watched a few of those YouTube videos you suggested and will watch them better next week.
I think PEA is good. LDN helps with sleep and pain, but it gives me weird dreams and might be elevating my heart rate a bit. Unsure so I have stopped taking it to see. I am going to ask about another immune modulator next week and will let you all know.
I’m now 13.5 months into this ‘situation’ we’ve all landed in – I was going to share an update at the one-year mark, in case it was any help to anyone, but the reality is that I don’t know much more than I did when I first posted (think it was March this year, around P126).
Briefly, I had Pfizer No2 on Sept 13, 2021, and immediately suffered anaphylaxis, requiring three shots of adrenaline and a trip to hospital. Since then, I’ve had all the usual tingling, burning, coldness, numbness, tightening, pressure points and weird creepy-crawly sensations. I also relived v similar symptoms to the anaphylaxis, causing swelling, numbness, tingling and tightening in my head, neck, mouth and face every day for months. Also, muscle weakness, being sort of ‘pushed’ to the side when walking, sharp bone pain during flare-ups and some tinnitus just for additional fun. Oh, and new allergies/reactions to things I wasn’t affected by before – spinach, dark chocolate (that one hurts), medical tape … just random things that my immune system now has a problem with.
So far, I have seen:
* Immunologist.
He initially said this presented as textbook mastocytosis. After a range of tests, inc one that analysed my mast cells over a month, the results showed – normal mast cell form and function, so not mastocytosis. The next thing to examine is PEG allergy (I have been affected by PEG before), but he can’t do the tests until I have at least three months of stable health with low symptoms (or pref none). I’ve not yet had a day symptom-free, so the wait goes on (he also prescribed four antihistamine a day).
While we wait, the immunologist generated a referral to a neurologist in the hope that they can pool expertise and work together, each focusing on their own specialist area.
* Cardiologist.
Due to long waiting times, I didn’t see him until 11 months after the second shot. He said my chest symptoms at the beginning – which an ED doctor originally attributed to costochondritis – sounded more like pericarditis (it was a feeling that someone was pressing their palm down heavily into the centre of my chest and I couldn’t get my breath all the way in. Also, extreme breathlessness and heart beating out of my chest with v minimal exertion).
Cardiologist was v good and did a scan even though it was 11 months after the event – and found a 2mm area of pericardial inflammation still remaining. This is not considered significant at this stage, but does back up his suspicion about what was initially affecting me.
He was the most candid of anyone I’ve seen and admitted that v little is yet known about the mechanisms involved in Long Covid, and even less about these vaccine reactions. However, he agreed it seemed sensible to approach my recovery as I would approach recovery from LC. So, I continue with gentle exercise like tai chi or walking. He agreed with the immunologist that I need to see a neurologist.
* Neurologist.
Oh wait, I didn’t actually see a neurologist because … my doctor put through the referral, as requested by the immunologist, and this is what came back (paraphrasing, obv)…
We don’t need to see this patient because we have seen a small group of patients with vaccine injuries, and we didn’t find any underlying malignancies with any of them. Tell her that time appears to be the only treatment and, BTW, don’t get anxious because that will make it worse.
Honestly, I don’t know whether to laugh or cry. Imagine taking a year-long headache to the doctor and him saying, well, hey, I think you will be just fine because my last three headache patients didn’t have anything major wrong with them …
* Psychiatrist
I am very lucky – due to the immediacy of my reaction – to be receiving wage compensation from a government department (and I’m both angry and sorry that many of you won’t be receiving this support when you really, really should be). However, it means I have to agree to things like being analysed by a psychiatrist (I have to be seen to be trying all avenues to recover etc). I’m also starting to get the message that they believe I had anaphylaxis, but they don’t really buy the fact that I’m still having symptoms nearly 14 months later.
So, I spoke to a psychiatrist, and he was keen to tell me that the mind is a very powerful thing and I could well be imagining into existence all this tingling and tightening etc – that physical symptoms don’t always start in the body. I get the power of the mind, but what I don’t get is the medics who will not listen to me or take me seriously when I say, ‘But, hang on, there are hundreds of people all over the world independently describing exactly the same symptoms as me. We’ve not even met and we’re using the same terms to describe these unique sensations that none of us have ever experienced before.’ I said a version of this to the psychiatrist and he couldn’t understand why I was so offended about anxiety as a possible generator of symptoms … as we all know, that is not what I’m offended about! I just want this to be seen and heard for what it actually is.
The better news … the neck and chest symptoms have lessened in intensity over time, but do make themselves felt during flare-ups. The neuro-type symptoms and bone pain are perhaps gaining a bit in intensity with each flare-up, but definitely liveable on a day-to-day basis – and, on the flipside, the good days are also stronger than they were. Overall, I feel stronger than I was six months ago, and definitely way better than I felt a year ago. So, I echo everyone else who says it’s a long, gradual road to recovery and that it’ not linear – flare-ups have been triggered along the way.
Finally, I know I’m getting better because I now have enough energy to be absolutely raging about the way we’ve been treated as a community of patients - and even if I wake up tomorrow and I’m 100 per cent recovered, I will not stop speaking out about this. I’ve tried to gain traction with three different journalists and had a long phone conversation with one who actually took the time to follow up my email. If this doesn’t start to gain the coverage, discussion, research and investigation that it deserves, then I’ll start my own site and push the hell out of it that way.
I think I’d better stop before I enter a full-on middle-aged rant, but I know people have sometimes wondered where earlier posters have disappeared to, so I just wanted to provide an update – and to say that I, for one, will not be walking away and forgetting about all of you any time soon. I really feel for anyone who is suffering – please know you’ve been seen and heard and those of us who are getting stronger will just keep getting louder and louder in our requests for help, validation, support and truth. Also, I have midlife hormones and no one wants to be messing with those!
Ps. Intermittent fasting has been great for me, as well as the usual vitamins and turmeric (I really notice the difference if I run out of stock and don’t take that one! … don’t take it with some medicines, though as it’s a blood thinner and can react with some medications).
Take care everyone and sorry I don’t have more definitive news, but overall I’m stronger than I was (and just a bit rantier). PPs. Another one here who had anaemia post-vax and I feel so much better since taking iron supplements for the past five months.
Hi
Thank you for your update. I remember you.... I think you got your 2nd dose in a drive thru jab place. If that's you, your experience was horrible. Thank you for your passion and love!!
