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Tingling/Numbness In Body

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(@chesca17)
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Posted by: @buzzgirl
Posted by: @chesca17
Posted by: @buzzgirl
Posted by: @chesca17
Posted by: @volam76

@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. 

https://youtu.be/C74TB_f4xjs  

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.

Hey @buzzgirl,

so I went to the dr this morning and I told her that the prednisone helped me during the 5 days I was taking it, but as soon as I finished it the symptoms returned. She said it was good that it did help as it shows there is inflammation in my body that the steroid helped to reduce it and reduce my symptoms. 
before my appointment I wrote a page of notes of all the tests I want done and inflammatory markers etc - all research from reading comments in this forum. 
I’d also written down some non -steroidal anti inflammatory medications I’d researched for me to try that weren’t gabapentin or amitryptaline. So basically I did the job for her haha - I just wanted to get the most out of my appointment so went in with as much research and info and things to ask for as I could. 
she took the paper from me and first we started with the blood tests. I’ve had a lot of the standard nhs ones already which showed nothing but the low iron so today I had these other blood tests done - anti nuclear antibodies erythrocyte sedimentation rate, and anti- acetyl choline receptor antibodies - to see if they find anything, I should get my results early next week so I’ll report back when I do. 

Then do you remember saying that she wrote to immunology for me and they wrote back and said they wouldn’t see me on the nhs because there is no evidence that my symptoms are from the vaccine.., we’ll she’s recommended a private immunologist for me to see and wrote to him so I just need to call and make an appointment. It’s going yo cost me a lot probably even for just a consultation but at this point I don’t care, I can’t put a price on my health and I just want the answers and to get on with my life. So I’m going to see what these two tests I had done today bring back and then I’ll make the appointment with this private immunologist via the Nuffield. hopefully he can do some in depth tests on me and find some answers - I’ll update in this group on that. 
then medication wise I wrote a list of anti inflammatory non steroid drugs I’d found through my own google search, one of them was Diclofenac - it’s the strongest non steroid anti inflammatory drug. The gp saw it on my list and straight away she said we can try this I’ve perscribed it many times for my arthritis patients and it’s good for inflammation. It’s 50mg and I have to take it 3 times a day - again if it starts to work I’ll report back and let everyone know. Anything to avoid taking gabapentin and amitryptaline I’ll do it. Gabapentin masks pain but doesn’t treat the problem - at least if this pill is anti inflammatory it should reduce the inflammation in my body. 
so this is pretty much where im at. The nerve pain has been bad this week, im 7 weeks into this relapse now - in many ways it’s worse than what it was in January when I first had it, this time I feel the tingling in my face and gums and sometimes my lips - not everyday but sometimes and I never had the nerve pain and tingling in my face when I first started with all this in Jan. 
some people have said their relapses lasted 2-3 months so im hoping im one of those people which would mean I’d have another 4-5 weeks of this till it dies down. 
hoping the diclofenac takes some of the burning nerve pain away between now and then. 
i will come back next week and update on my blood tests results for those antibody tests I’ve had today and then by that point hopefully I’ll also feel these tablets start to work. 
hang in there - I find going for a walk, keeping myself busy and eating a keto low oxalate diet helps my symptoms x 


   
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(@montydes)
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Joined: 2 years ago
Posts: 40
 

Fewer than HALF of those eligible for Covid booster have come forward for vaccine, analysis shows | Daily Mail Online

Plenty of comments in there blaming vaxx for health issues!!


   
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(@margaret2022)
Very Active Member
Joined: 2 years ago
Posts: 335
 
Posted by: @kg1986

So I am in the middle of a TERRIBLE flare up. A lot of the same old symptoms (muscle weakness, ringing in ears, nerve pain etc, brain fog) but this time I feel very achy in my joints and awful back spasms. It again sparked extreme anxiety in me. I am back to Dr appts every day ruling out other scary things (so far so good like usual). They are doing an abdominal MRI because this time around my stomach is really tender on and off, a lot of GI symptoms. And also they are doing another Brain MRI but this time with contrast. They gave my gabepentin which I just started last night. I am also seeing an integrative DR that is really diving into ruling out Lyme. I take ALL the supplements in the world, work out (not for a few weeks because this has been a terrible flare up), and eat very clean. They even tried prednisone for me, which didnt do a whole lot. 

Has anyone heard of being able to have your blood checked for the Spike proteins in the VX? I only ask because I really don't know where else to go from here. I finally have several Drs that are willing to talk about VX reactions and admit that its real, and that yes-it has had very strange effects on some individuals. 

 

I have to keep telling myself that it's not cancer...it just comes and goes for the last year, and most tests are normal besides IGG/ANA and some inflammation markers (and Vit D orignally/low B12)...I just had this nagging fear that I have some terminal illness that they are missing..but I think I have had almost every test/scan available at this point. I have 2 daughters under 3 so I think that makes my anxiety level higher when I feel this ill. I know it will get better ( I am on week 5 of this) so hopefully in a few more weeks I start to feel good again, seems like everytime this happens it lasts 6-8 weeks.

 

I tested my antibodies for the vaccine Moderna first shot march 2021 second end of April 2021 then booster mid December 2021.

hell started January 10th 2022. The day my life flipped upside down. April 2022 antibodies 1927u/ml. September 2022 antibodies 900 something. 

symptoms: hearing sensitivity to left side

Left eye doesnt work well with right eye.

hissing in head. Progressively got worse in July after seeing audiologist that did hearing test made the hissing in head worse. Had couple super sensitive relapses improved slightly but still not prevax. 
currently on prednisone I can certainly see slight improvement with the hearing sensitivity. My eye does kinda wanna work together with my other eye. But not a full pre vax. 
seen ENT, neuro ophthalmology, neurology, optometrist, audiology, many general practitioners.

had mri ct scans blood work and all good.

I keep praying for all of us suffering. Many bad days  but more better than good. I’m learning to live with it. I can’t remember what normal feels like anymore.

I’ve been on anti inflammatory diets that seemed to help a lot as well. 


   
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(@enzed22)
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@buzzgirl Wow, you have an amazing memory! Yes, that was me – the drive-thru was at an old fertiliser shed next to the city dump (I really don’t know why I thought anything about it was a good idea).

I remember you, too – it’s been a long haul for us, that’s for sure. Thanks also for the info and links you’ve posted along the way, I don’t always catch up with them until a bit later but, from memory, I’ve got at least a few of your ideas bookmarked. I didn’t know about the S1 test so I’m off to find out about that. Good luck with continued investigations and I’ll keep battling on across the ditch from you in NZ.

@vaxstuff22 That made me laugh. Glad you appreciate it as I’m not sure whether my nearest and dearest do! Best of luck with your own challenges, I hope we all get there in the end.


   
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(@buzzgirl)
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@enzed22 you are a kiwi??


   
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(@enzed22)
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@buzzgirl Yes, I am, though I poss don't sound the most 'Kiwi as' poster because I also lived in the northern hemisphere for a long time! Am trying to raise awareness over here now that I feel a bit stronger (and I've also followed the challenges you guys have faced over there).


   
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(@kg1986)
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Has anyone ever had a Dr mention vasculitis to them?


   
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(@chesca17)
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Posts: 26
 
Posted by: @chesca17
Posted by: @buzzgirl
Posted by: @chesca17
Posted by: @buzzgirl
Posted by: @chesca17
Posted by: @volam76

@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. 

https://youtu.be/C74TB_f4xjs  

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.

Hey @buzzgirl,

so I went to the dr this morning and I told her that the prednisone helped me during the 5 days I was taking it, but as soon as I finished it the symptoms returned. She said it was good that it did help as it shows there is inflammation in my body that the steroid helped to reduce it and reduce my symptoms. 
before my appointment I wrote a page of notes of all the tests I want done and inflammatory markers etc - all research from reading comments in this forum. 
I’d also written down some non -steroidal anti inflammatory medications I’d researched for me to try that weren’t gabapentin or amitryptaline. So basically I did the job for her haha - I just wanted to get the most out of my appointment so went in with as much research and info and things to ask for as I could. 
she took the paper from me and first we started with the blood tests. I’ve had a lot of the standard nhs ones already which showed nothing but the low iron so today I had these other blood tests done - anti nuclear antibodies erythrocyte sedimentation rate, and anti- acetyl choline receptor antibodies - to see if they find anything, I should get my results early next week so I’ll report back when I do. 

Then do you remember saying that she wrote to immunology for me and they wrote back and said they wouldn’t see me on the nhs because there is no evidence that my symptoms are from the vaccine.., we’ll she’s recommended a private immunologist for me to see and wrote to him so I just need to call and make an appointment. It’s going yo cost me a lot probably even for just a consultation but at this point I don’t care, I can’t put a price on my health and I just want the answers and to get on with my life. So I’m going to see what these two tests I had done today bring back and then I’ll make the appointment with this private immunologist via the Nuffield. hopefully he can do some in depth tests on me and find some answers - I’ll update in this group on that. 
then medication wise I wrote a list of anti inflammatory non steroid drugs I’d found through my own google search, one of them was Diclofenac - it’s the strongest non steroid anti inflammatory drug. The gp saw it on my list and straight away she said we can try this I’ve perscribed it many times for my arthritis patients and it’s good for inflammation. It’s 50mg and I have to take it 3 times a day - again if it starts to work I’ll report back and let everyone know. Anything to avoid taking gabapentin and amitryptaline I’ll do it. Gabapentin masks pain but doesn’t treat the problem - at least if this pill is anti inflammatory it should reduce the inflammation in my body. 
so this is pretty much where im at. The nerve pain has been bad this week, im 7 weeks into this relapse now - in many ways it’s worse than what it was in January when I first had it, this time I feel the tingling in my face and gums and sometimes my lips - not everyday but sometimes and I never had the nerve pain and tingling in my face when I first started with all this in Jan. 
some people have said their relapses lasted 2-3 months so im hoping im one of those people which would mean I’d have another 4-5 weeks of this till it dies down. 
hoping the diclofenac takes some of the burning nerve pain away between now and then. 
i will come back next week and update on my blood tests results for those antibody tests I’ve had today and then by that point hopefully I’ll also feel these tablets start to work. 
hang in there - I find going for a walk, keeping myself busy and eating a keto low oxalate diet helps my symptoms x 

Hi All, 

for anyone who’s been following my other posts just thought I would come back and update as promised. 
So I’ve been taking the diclofenac for a week now and wow it’s been helping my nerve pain so much!! It honestly feels ten times better than it was so for anyone suffering with burning nerve pain like me then I highly recommend trying them - I’ve had no side effects (obviously that’s my experience). Worth asking your gp about them as they are a strong anti inflammatory and it’s inflammation that a lot of us have! It says it takes at least a week to feel the benefit but I honestly felt them work within 2-3 days! I’m not void of any nerve pain at all and back to pre booster me but it’s a million times better and just get the odd niggle - mainly my right food when it gets cold and burning a bit. Honestly this relapse was so bad so these tablets have massively calmed it all down. 
then I got the test results back today from those two anti body tests I had above - one of them was the anti nuclear antibody test and both came back negative/normal with no further action. I’m relieved the Ana came back negative as I know alot of people on this forum had it come back positive. However as relieved as I am I’m still non the wiser for answers. 
today I did the spike protein home kit and posted it off - I should get results in 48 hours, might be Monday with the weekend now so we’ll see. I just ordered that home kit that I shared the link of previously. Will update what my spike protein results is when I get it. It will be a year on 22nd December since I had the booster that started all this so I’m hoping my spike proteins should be quite low a year down the line so we’ll see! 
Now that those two last bloody tests I had done are normal my only option now is to go and see a private immunologist for further tests. I’m still on a very long waiting list for neurology with the nhs but from reading about everyone else’s experiences at the neurologist I doubt I’ll get any answers or verdict. 
anyway that was my update so some positive news and happy to share that the diclofenac is helping my inflammation. I’ve also started taking acetyl l Carnitine - it’s a supplement that my chiropractor recommended for tingling nerve pain. Her mum takes it for tingling feet from chemo and it helps her. Only started that today though so again I’ll let you know if I see any benefit from it. 
i feel like I would rattle if you shook me after taking all these supplements haha 


   
Buzzgirl reacted
ReplyQuote
(@buzzgirl)
Very Active Member
Joined: 2 years ago
Posts: 120
 

@chesca17 Thanks for your update. That's great you are finding relief on the non steriod anti inflammatory. 

Can I ask you some specific questions please? This might help other readers as well.

When you say burning nerve pain, what exactly do you mean? A burning sensation on a part of your body which is painful? Or a burning ache? Or like you have pinched a nerve type feeling? Where do you experience it? Is or has it been constant since your flare up or intermittent?

Is your tingling sensation tingling? Or more like pins/needles? Or a weird feeling on or under your skin? Where do you experience this? Is it constant or intermittent?

Has the anti inflammatory helped with the tingling/pins/needles or only the burning sensation? Hopefully over time the anti inflammatory helps you more.

Yes I am interested to hear your results from your spike test and also to hear if you are finding anymore relief from the anti-inflammatory.

I have nothing really to report at present except for that some people who have been really bad with numbness and pain have had to be on steriods for 10 months in order to find relief. At least non steriods have less side effects. There's definitely a lot of similarities between people on this forum and Long Covid sufferers. 

Are you able to sleep with your discomfort and also work (paid employment)?

Thanks


   
ReplyQuote
(@chesca17)
Active Member
Joined: 2 years ago
Posts: 26
 
Posted by: @buzzgirl

@chesca17 Thanks for your update. That's great you are finding relief on the non steriod anti inflammatory. 

Can I ask you some specific questions please? This might help other readers as well.

When you say burning nerve pain, what exactly do you mean? A burning sensation on a part of your body which is painful? Or a burning ache? Or like you have pinched a nerve type feeling? Where do you experience it? Is or has it been constant since your flare up or intermittent?

Is your tingling sensation tingling? Or more like pins/needles? Or a weird feeling on or under your skin? Where do you experience this? Is it constant or intermittent?

Has the anti inflammatory helped with the tingling/pins/needles or only the burning sensation? Hopefully over time the anti inflammatory helps you more.

Yes I am interested to hear your results from your spike test and also to hear if you are finding anymore relief from the anti-inflammatory.

I have nothing really to report at present except for that some people who have been really bad with numbness and pain have had to be on steriods for 10 months in order to find relief. At least non steriods have less side effects. There's definitely a lot of similarities between people on this forum and Long Covid sufferers. 

Are you able to sleep with your discomfort and also work (paid employment)?

Thanks

@buzzgirl I’ve been lucky in the sense that I haven’t suffered with insomnia (I did whilst I was taking the steroids those 5 days - first time in my life I’d ever struggled to sleep) but for some weird reason when I’m asleep my nerve pain and pins and needles stops. It must be because my body is resting and When asleep part of my immune system etc must just calm down. I’ve also not had to take time off work because it doesn’t stop me from walking and I don’t suffer with dizziness etc. I’m in pain with my nerve pain when it’s bad  but I can still function and do my job. I prefer to try and keep active to distract me from the pain and worry and take my mind off it. The more normality I can keep in my life the better - I appreciate that some peoples side effects are so bad that they can’t even get out of bed or walk 100 meters so I know I am lucky compared to those people. 
Ok I will try to describe my pain as best as I can - it’s hard to put it in exact terms unless you feel it yourself but I will try and liken the pain to a feeling. So firstly, I haven’t had numbness in the sense that I can still feel sensations/ touch and temperatures with my limbs and haven’t had any loss of feeling in my fingers or feet etc. I have a pins and needles feeling mainly in my lower legs and feet and then burning pain in my nerves. It’s always in my feet, lower legs, upper back, arms and chest  (this is where I had it in Jan when i first reacted to the booster) but this time round sometimes I also get tingling in my face, lips and gums and burning palms of my hands - this part only happens the odd day of the week. 
now to describe the burning nerve pain, I my feet especially my right foot its a similar feeling to putting your feet in the snow - its like a freezing burn with a tingling feeling. It’s the most extreme in my foot. I have suffered with cold feet alot in my life but never with a burning nerve pain and tingling. 
The burning nerve pain In the other limbs feels a bit like sunburn pain or that pain you feel when you fall over and put your hands out to break your fall - Then when you stand up the Palms of your hands sting and burn where they hit the ground to break your fall - it feels like that. Really hard to explain and that’s the most 2 similar feelings I can liken it too - the sunburn and hitting your hands on the ground in a fall - hopefully someone else suffering with my burning tingling nerve pain can relate haha. 
I don’t get pins and needles all over my body as I said that part is mainly in my lower legs and feet - but the burning nerve pain can be accompanied by tingling. 
I’ve been in more pain with this relapse than I was back in January. I’m 8 weeks in now to a relapse and I’m hoping it settles down at 12 weeks like it did when I had initial symptoms in Jan. 

yes I’m so happy I have found a non steroid tablet that helps to take the edge off my pain - I’ve been given a month prescription so I’m going to call the dr on Monday and ask if I should only take them for a month and taper off during that time or take the full course and then just finish or repeat the prescription. 
Most medication has side effects and if you google diclofenac you’ll see a list of them. I haven’t experienced any as yet but it does say if you take them for a long period of time you could suffer with a stomach ulcer or bleeding from stomach they just to clarify what a long period of time is! I only want to be on them whilst in this relapse but i of course have the fear that I if I stop them then will the pain come back if I’m still in a relapse. 
Dr didn’t want to repeat the steroid they’re really cautious of the side effects and the insomnia I had was not fun when I had work! 
hope I managed to explain my pain well enough - all I ever say to my husband and family is “I wish you could feel what I’m feeling so then you would understand how it feels” 

I’ll be back in a few days to let you know my spike test results. 
Hope your doing ok @buzzgirl

i wish we had a few more recent recovery stories from people but I genuinely believe that Anyone who hasn’t been on here for a while has recovered. I’m a classic example of that. When I first had the side effects in Jan I was all over this group when I found it right up until the pain went away 3 months in. Then for the whole of spring and summer when I thought it was healing I didn’t log onto this group once I’d reported my nerve pain had gone. I’ve only come back on here since I got my relapse of symptoms in mid September. So I think we need to take peoples silence if they haven’t been on for months that they are healed. 


   
ReplyQuote
(@buzzgirl)
Very Active Member
Joined: 2 years ago
Posts: 120
 
Posted by: @chesca17
Posted by: @buzzgirl

@chesca17 Thanks for your update. That's great you are finding relief on the non steriod anti inflammatory. 

Can I ask you some specific questions please? This might help other readers as well.

When you say burning nerve pain, what exactly do you mean? A burning sensation on a part of your body which is painful? Or a burning ache? Or like you have pinched a nerve type feeling? Where do you experience it? Is or has it been constant since your flare up or intermittent?

Is your tingling sensation tingling? Or more like pins/needles? Or a weird feeling on or under your skin? Where do you experience this? Is it constant or intermittent?

Has the anti inflammatory helped with the tingling/pins/needles or only the burning sensation? Hopefully over time the anti inflammatory helps you more.

Yes I am interested to hear your results from your spike test and also to hear if you are finding anymore relief from the anti-inflammatory.

I have nothing really to report at present except for that some people who have been really bad with numbness and pain have had to be on steriods for 10 months in order to find relief. At least non steriods have less side effects. There's definitely a lot of similarities between people on this forum and Long Covid sufferers. 

Are you able to sleep with your discomfort and also work (paid employment)?

Thanks

@buzzgirl I’ve been lucky in the sense that I haven’t suffered with insomnia (I did whilst I was taking the steroids those 5 days - first time in my life I’d ever struggled to sleep) but for some weird reason when I’m asleep my nerve pain and pins and needles stops. It must be because my body is resting and When asleep part of my immune system etc must just calm down. I’ve also not had to take time off work because it doesn’t stop me from walking and I don’t suffer with dizziness etc. I’m in pain with my nerve pain when it’s bad  but I can still function and do my job. I prefer to try and keep active to distract me from the pain and worry and take my mind off it. The more normality I can keep in my life the better - I appreciate that some peoples side effects are so bad that they can’t even get out of bed or walk 100 meters so I know I am lucky compared to those people. 
Ok I will try to describe my pain as best as I can - it’s hard to put it in exact terms unless you feel it yourself but I will try and liken the pain to a feeling. So firstly, I haven’t had numbness in the sense that I can still feel sensations/ touch and temperatures with my limbs and haven’t had any loss of feeling in my fingers or feet etc. I have a pins and needles feeling mainly in my lower legs and feet and then burning pain in my nerves. It’s always in my feet, lower legs, upper back, arms and chest  (this is where I had it in Jan when i first reacted to the booster) but this time round sometimes I also get tingling in my face, lips and gums and burning palms of my hands - this part only happens the odd day of the week. 
now to describe the burning nerve pain, I my feet especially my right foot its a similar feeling to putting your feet in the snow - its like a freezing burn with a tingling feeling. It’s the most extreme in my foot. I have suffered with cold feet alot in my life but never with a burning nerve pain and tingling. 
The burning nerve pain In the other limbs feels a bit like sunburn pain or that pain you feel when you fall over and put your hands out to break your fall - Then when you stand up the Palms of your hands sting and burn where they hit the ground to break your fall - it feels like that. Really hard to explain and that’s the most 2 similar feelings I can liken it too - the sunburn and hitting your hands on the ground in a fall - hopefully someone else suffering with my burning tingling nerve pain can relate haha. 
I don’t get pins and needles all over my body as I said that part is mainly in my lower legs and feet - but the burning nerve pain can be accompanied by tingling. 
I’ve been in more pain with this relapse than I was back in January. I’m 8 weeks in now to a relapse and I’m hoping it settles down at 12 weeks like it did when I had initial symptoms in Jan. 

yes I’m so happy I have found a non steroid tablet that helps to take the edge off my pain - I’ve been given a month prescription so I’m going to call the dr on Monday and ask if I should only take them for a month and taper off during that time or take the full course and then just finish or repeat the prescription. 
Most medication has side effects and if you google diclofenac you’ll see a list of them. I haven’t experienced any as yet but it does say if you take them for a long period of time you could suffer with a stomach ulcer or bleeding from stomach they just to clarify what a long period of time is! I only want to be on them whilst in this relapse but i of course have the fear that I if I stop them then will the pain come back if I’m still in a relapse. 
Dr didn’t want to repeat the steroid they’re really cautious of the side effects and the insomnia I had was not fun when I had work! 
hope I managed to explain my pain well enough - all I ever say to my husband and family is “I wish you could feel what I’m feeling so then you would understand how it feels” 

I’ll be back in a few days to let you know my spike test results. 
Hope your doing ok @buzzgirl

i wish we had a few more recent recovery stories from people but I genuinely believe that Anyone who hasn’t been on here for a while has recovered. I’m a classic example of that. When I first had the side effects in Jan I was all over this group when I found it right up until the pain went away 3 months in. Then for the whole of spring and summer when I thought it was healing I didn’t log onto this group once I’d reported my nerve pain had gone. I’ve only come back on here since I got my relapse of symptoms in mid September. So I think we need to take peoples silence if they haven’t been on for months that they are healed. 

Hi. Thanks for your reply and describing your symptoms.

Pre virus my pins and needles sound similar to yours (mine was palms of hands and soles of feet) and would stop just before I would fall to sleep. Post virus it developed into a constant annoyance. Lately it's been better while sleeping and during the day. 

As for burning, mine was more like a sunburn feeling and when bad it would have an ache to it. I don't really get the burning much now it's more aches, weird skin sensations etc.

I do have some other symptoms but they are all post virus 

So at present the anti inflammatories haven't helped with the pins/needles? Did the steroid help your pins/needles sensations? I agree, you would prefer not being on them long term, especially the steriods due to the side effects. I know of someone who is on an anti-inflammatory and antidepressant which stops their joint pain (not covid related), so I am very interested in your experience with an anti-inflammatory. It's an option I was wondering about. It's just a shame that things have side effects.

PEA might help you will your burning pain. LDN is an immune modulator and some people have found it beneficial. There's also herbs which are immune modulators.

I look forward to your next update.


   
ReplyQuote
 J
(@j)
Active Member
Joined: 3 years ago
Posts: 51
 

Yale is recruiting study participants globally for their LISTEN study.  They may select you to take blood samples from (USA only). Looking for vaccine injured and long COVID participants. Essentially fill in a bunch of surveys. You sign up at the link below.  This study is also posted on the React19 website!!!! I signed up - they need us. They have also posted their preliminary results at the second link (near end of video)

https://www.kindred.hugo.health/research/listen-study?fbclid=IwAR2ATHdpnh_do23U9gPh7rpYmqGElmlIw4cq9d_BZkaqFSpNfU_N4l6voFQ

https://youtu.be/jt8K1Q7V7YA


   
ReplyQuote
(@chesca17)
Active Member
Joined: 2 years ago
Posts: 26
 
Posted by: @buzzgirl
Posted by: @chesca17
Posted by: @buzzgirl

@chesca17 Thanks for your update. That's great you are finding relief on the non steriod anti inflammatory. 

Can I ask you some specific questions please? This might help other readers as well.

When you say burning nerve pain, what exactly do you mean? A burning sensation on a part of your body which is painful? Or a burning ache? Or like you have pinched a nerve type feeling? Where do you experience it? Is or has it been constant since your flare up or intermittent?

Is your tingling sensation tingling? Or more like pins/needles? Or a weird feeling on or under your skin? Where do you experience this? Is it constant or intermittent?

Has the anti inflammatory helped with the tingling/pins/needles or only the burning sensation? Hopefully over time the anti inflammatory helps you more.

Yes I am interested to hear your results from your spike test and also to hear if you are finding anymore relief from the anti-inflammatory.

I have nothing really to report at present except for that some people who have been really bad with numbness and pain have had to be on steriods for 10 months in order to find relief. At least non steriods have less side effects. There's definitely a lot of similarities between people on this forum and Long Covid sufferers. 

Are you able to sleep with your discomfort and also work (paid employment)?

Thanks

@buzzgirl I’ve been lucky in the sense that I haven’t suffered with insomnia (I did whilst I was taking the steroids those 5 days - first time in my life I’d ever struggled to sleep) but for some weird reason when I’m asleep my nerve pain and pins and needles stops. It must be because my body is resting and When asleep part of my immune system etc must just calm down. I’ve also not had to take time off work because it doesn’t stop me from walking and I don’t suffer with dizziness etc. I’m in pain with my nerve pain when it’s bad  but I can still function and do my job. I prefer to try and keep active to distract me from the pain and worry and take my mind off it. The more normality I can keep in my life the better - I appreciate that some peoples side effects are so bad that they can’t even get out of bed or walk 100 meters so I know I am lucky compared to those people. 
Ok I will try to describe my pain as best as I can - it’s hard to put it in exact terms unless you feel it yourself but I will try and liken the pain to a feeling. So firstly, I haven’t had numbness in the sense that I can still feel sensations/ touch and temperatures with my limbs and haven’t had any loss of feeling in my fingers or feet etc. I have a pins and needles feeling mainly in my lower legs and feet and then burning pain in my nerves. It’s always in my feet, lower legs, upper back, arms and chest  (this is where I had it in Jan when i first reacted to the booster) but this time round sometimes I also get tingling in my face, lips and gums and burning palms of my hands - this part only happens the odd day of the week. 
now to describe the burning nerve pain, I my feet especially my right foot its a similar feeling to putting your feet in the snow - its like a freezing burn with a tingling feeling. It’s the most extreme in my foot. I have suffered with cold feet alot in my life but never with a burning nerve pain and tingling. 
The burning nerve pain In the other limbs feels a bit like sunburn pain or that pain you feel when you fall over and put your hands out to break your fall - Then when you stand up the Palms of your hands sting and burn where they hit the ground to break your fall - it feels like that. Really hard to explain and that’s the most 2 similar feelings I can liken it too - the sunburn and hitting your hands on the ground in a fall - hopefully someone else suffering with my burning tingling nerve pain can relate haha. 
I don’t get pins and needles all over my body as I said that part is mainly in my lower legs and feet - but the burning nerve pain can be accompanied by tingling. 
I’ve been in more pain with this relapse than I was back in January. I’m 8 weeks in now to a relapse and I’m hoping it settles down at 12 weeks like it did when I had initial symptoms in Jan. 

yes I’m so happy I have found a non steroid tablet that helps to take the edge off my pain - I’ve been given a month prescription so I’m going to call the dr on Monday and ask if I should only take them for a month and taper off during that time or take the full course and then just finish or repeat the prescription. 
Most medication has side effects and if you google diclofenac you’ll see a list of them. I haven’t experienced any as yet but it does say if you take them for a long period of time you could suffer with a stomach ulcer or bleeding from stomach they just to clarify what a long period of time is! I only want to be on them whilst in this relapse but i of course have the fear that I if I stop them then will the pain come back if I’m still in a relapse. 
Dr didn’t want to repeat the steroid they’re really cautious of the side effects and the insomnia I had was not fun when I had work! 
hope I managed to explain my pain well enough - all I ever say to my husband and family is “I wish you could feel what I’m feeling so then you would understand how it feels” 

I’ll be back in a few days to let you know my spike test results. 
Hope your doing ok @buzzgirl

i wish we had a few more recent recovery stories from people but I genuinely believe that Anyone who hasn’t been on here for a while has recovered. I’m a classic example of that. When I first had the side effects in Jan I was all over this group when I found it right up until the pain went away 3 months in. Then for the whole of spring and summer when I thought it was healing I didn’t log onto this group once I’d reported my nerve pain had gone. I’ve only come back on here since I got my relapse of symptoms in mid September. So I think we need to take peoples silence if they haven’t been on for months that they are healed. 

Hi. Thanks for your reply and describing your symptoms.

Pre virus my pins and needles sound similar to yours (mine was palms of hands and soles of feet) and would stop just before I would fall to sleep. Post virus it developed into a constant annoyance. Lately it's been better while sleeping and during the day. 

As for burning, mine was more like a sunburn feeling and when bad it would have an ache to it. I don't really get the burning much now it's more aches, weird skin sensations etc.

I do have some other symptoms but they are all post virus 

So at present the anti inflammatories haven't helped with the pins/needles? Did the steroid help your pins/needles sensations? I agree, you would prefer not being on them long term, especially the steriods due to the side effects. I know of someone who is on an anti-inflammatory and antidepressant which stops their joint pain (not covid related), so I am very interested in your experience with an anti-inflammatory. It's an option I was wondering about. It's just a shame that things have side effects.

PEA might help you will your burning pain. LDN is an immune modulator and some people have found it beneficial. There's also herbs which are immune modulators.

I look forward to your next update.

@buzzgirl - the lab sent my results today but they’re not detailed as I’d hoped and I can’t differentiate what is spike protein and antibodies.. here’s the screen shots 

it says my antibodies are greater than 2,500. I got my booster in December last year 21 so almost a year ago now so I’d of thought they would be lower by now? 

 


   
ReplyQuote
(@buzzgirl)
Very Active Member
Joined: 2 years ago
Posts: 120
 
Posted by: @chesca17
Posted by: @buzzgirl
Posted by: @chesca17
Posted by: @buzzgirl

@chesca17 Thanks for your update. That's great you are finding relief on the non steriod anti inflammatory. 

Can I ask you some specific questions please? This might help other readers as well.

When you say burning nerve pain, what exactly do you mean? A burning sensation on a part of your body which is painful? Or a burning ache? Or like you have pinched a nerve type feeling? Where do you experience it? Is or has it been constant since your flare up or intermittent?

Is your tingling sensation tingling? Or more like pins/needles? Or a weird feeling on or under your skin? Where do you experience this? Is it constant or intermittent?

Has the anti inflammatory helped with the tingling/pins/needles or only the burning sensation? Hopefully over time the anti inflammatory helps you more.

Yes I am interested to hear your results from your spike test and also to hear if you are finding anymore relief from the anti-inflammatory.

I have nothing really to report at present except for that some people who have been really bad with numbness and pain have had to be on steriods for 10 months in order to find relief. At least non steriods have less side effects. There's definitely a lot of similarities between people on this forum and Long Covid sufferers. 

Are you able to sleep with your discomfort and also work (paid employment)?

Thanks

@buzzgirl I’ve been lucky in the sense that I haven’t suffered with insomnia (I did whilst I was taking the steroids those 5 days - first time in my life I’d ever struggled to sleep) but for some weird reason when I’m asleep my nerve pain and pins and needles stops. It must be because my body is resting and When asleep part of my immune system etc must just calm down. I’ve also not had to take time off work because it doesn’t stop me from walking and I don’t suffer with dizziness etc. I’m in pain with my nerve pain when it’s bad  but I can still function and do my job. I prefer to try and keep active to distract me from the pain and worry and take my mind off it. The more normality I can keep in my life the better - I appreciate that some peoples side effects are so bad that they can’t even get out of bed or walk 100 meters so I know I am lucky compared to those people. 
Ok I will try to describe my pain as best as I can - it’s hard to put it in exact terms unless you feel it yourself but I will try and liken the pain to a feeling. So firstly, I haven’t had numbness in the sense that I can still feel sensations/ touch and temperatures with my limbs and haven’t had any loss of feeling in my fingers or feet etc. I have a pins and needles feeling mainly in my lower legs and feet and then burning pain in my nerves. It’s always in my feet, lower legs, upper back, arms and chest  (this is where I had it in Jan when i first reacted to the booster) but this time round sometimes I also get tingling in my face, lips and gums and burning palms of my hands - this part only happens the odd day of the week. 
now to describe the burning nerve pain, I my feet especially my right foot its a similar feeling to putting your feet in the snow - its like a freezing burn with a tingling feeling. It’s the most extreme in my foot. I have suffered with cold feet alot in my life but never with a burning nerve pain and tingling. 
The burning nerve pain In the other limbs feels a bit like sunburn pain or that pain you feel when you fall over and put your hands out to break your fall - Then when you stand up the Palms of your hands sting and burn where they hit the ground to break your fall - it feels like that. Really hard to explain and that’s the most 2 similar feelings I can liken it too - the sunburn and hitting your hands on the ground in a fall - hopefully someone else suffering with my burning tingling nerve pain can relate haha. 
I don’t get pins and needles all over my body as I said that part is mainly in my lower legs and feet - but the burning nerve pain can be accompanied by tingling. 
I’ve been in more pain with this relapse than I was back in January. I’m 8 weeks in now to a relapse and I’m hoping it settles down at 12 weeks like it did when I had initial symptoms in Jan. 

yes I’m so happy I have found a non steroid tablet that helps to take the edge off my pain - I’ve been given a month prescription so I’m going to call the dr on Monday and ask if I should only take them for a month and taper off during that time or take the full course and then just finish or repeat the prescription. 
Most medication has side effects and if you google diclofenac you’ll see a list of them. I haven’t experienced any as yet but it does say if you take them for a long period of time you could suffer with a stomach ulcer or bleeding from stomach they just to clarify what a long period of time is! I only want to be on them whilst in this relapse but i of course have the fear that I if I stop them then will the pain come back if I’m still in a relapse. 
Dr didn’t want to repeat the steroid they’re really cautious of the side effects and the insomnia I had was not fun when I had work! 
hope I managed to explain my pain well enough - all I ever say to my husband and family is “I wish you could feel what I’m feeling so then you would understand how it feels” 

I’ll be back in a few days to let you know my spike test results. 
Hope your doing ok @buzzgirl

i wish we had a few more recent recovery stories from people but I genuinely believe that Anyone who hasn’t been on here for a while has recovered. I’m a classic example of that. When I first had the side effects in Jan I was all over this group when I found it right up until the pain went away 3 months in. Then for the whole of spring and summer when I thought it was healing I didn’t log onto this group once I’d reported my nerve pain had gone. I’ve only come back on here since I got my relapse of symptoms in mid September. So I think we need to take peoples silence if they haven’t been on for months that they are healed. 

Hi. Thanks for your reply and describing your symptoms.

Pre virus my pins and needles sound similar to yours (mine was palms of hands and soles of feet) and would stop just before I would fall to sleep. Post virus it developed into a constant annoyance. Lately it's been better while sleeping and during the day. 

As for burning, mine was more like a sunburn feeling and when bad it would have an ache to it. I don't really get the burning much now it's more aches, weird skin sensations etc.

I do have some other symptoms but they are all post virus 

So at present the anti inflammatories haven't helped with the pins/needles? Did the steroid help your pins/needles sensations? I agree, you would prefer not being on them long term, especially the steriods due to the side effects. I know of someone who is on an anti-inflammatory and antidepressant which stops their joint pain (not covid related), so I am very interested in your experience with an anti-inflammatory. It's an option I was wondering about. It's just a shame that things have side effects.

PEA might help you will your burning pain. LDN is an immune modulator and some people have found it beneficial. There's also herbs which are immune modulators.

I look forward to your next update.

@buzzgirl - the lab sent my results today but they’re not detailed as I’d hoped and I can’t differentiate what is spike protein and antibodies.. here’s the screen shots 

it says my antibodies are greater than 2,500. I got my booster in December last year 21 so almost a year ago now so I’d of thought they would be lower by now? 

 

Thanks. Yes its a shame they don't differentiate between the two. There are tests that do. I wonder if the above 2,500 and Positive are the two different tests. Positive I imagine is the virus. What do you think? Are you able to phone them?

How's the non steriod anti-inflammatory going?


   
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(@rastin)
Active Member
Joined: 2 years ago
Posts: 30
 

@paulina-m I am 95% better after 16 months, (Mine was just my feet)


   
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