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Tingling/Numbness In Body

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(@margaret2022)
Very Active Member
Joined: 2 years ago
Posts: 335
 
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? 

 

My booster was December 2021…

antibodies were 1927 in April 2022

Antibodies in sept 2022 were 900’s

interesting to see yours are still high. And with all the symptoms you’re experiencing. The symptoms are definitely related to amount of antibodies you have. I believe there’s a correlation there. I did see a post on one of these forums that it took 18 months for this person to be symptom free. 

im gonna retest again in January to see if there’s any further decrease. I’m hoping once this toxin leaves our bodies we will get better. I honestly don’t remember what normal feels like. It’s been 10 months now since s#!t hit the fan.


   
ReplyQuote
(@buzzgirl)
Very Active Member
Joined: 2 years ago
Posts: 120
 
Posted by: @margaret2022
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? 

 

My booster was December 2021…

antibodies were 1927 in April 2022

Antibodies in sept 2022 were 900’s

interesting to see yours are still high. And with all the symptoms you’re experiencing. The symptoms are definitely related to amount of antibodies you have. I believe there’s a correlation there. I did see a post on one of these forums that it took 18 months for this person to be symptom free. 

im gonna retest again in January to see if there’s any further decrease. I’m hoping once this toxin leaves our bodies we will get better. I honestly don’t remember what normal feels like. It’s been 10 months now since s#!t hit the fan.

Hi @margaret2022 

What are your symptoms and have they decreased as your antibodies decreased? Some people experience this. Unfortunately some people don't (I have read this on this forum). 

Have you caught the virus since your booster? I was doing okay but the virus increased my then current symptoms and gave me additional ones. I have improved a little but have not returned to pre virus baseline unfortunately. Are you on other platforms? Reddit, FB etc? 


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

 

My booster was December 2021…

antibodies were 1927 in April 2022

Antibodies in sept 2022 were 900’s

interesting to see yours are still high. And with all the symptoms you’re experiencing. The symptoms are definitely related to amount of antibodies you have. I believe there’s a correlation there. I did see a post on one of these forums that it took 18 months for this person to be symptom free. 

im gonna retest again in January to see if there’s any further decrease. I’m hoping once this toxin leaves our bodies we will get better. I honestly don’t remember what normal feels like. It’s been 10 months now since s#!t hit the fan.

Hi @margaret2022 

What are your symptoms and have they decreased as your antibodies decreased? Some people experience this. Unfortunately some people don't (I have read this on this forum). 

Have you caught the virus since your booster? I was doing okay but the virus increased my then current symptoms and gave me additional ones. I have improved a little but have not returned to pre virus baseline unfortunately. Are you on other platforms? Reddit, FB etc? 

My symptoms are hearing sensitivity to left ear  trouble with left eye where my left can’t and doesn’t work well with my right eye causing it hard to focus meanwhile my vision is clear got some eye floaters as well in both eyes this was brought on by loud sounds … I also have like brain fog/ weird feeling in my head like no clarity or something like I’m not the same person just a weird feeling….I feel like the hearing sensitivity has gone up and down where I’d have a relapse where it’s super sensitive. As in the light LED bulbs in my house I had to change to regular bulbs because the LED were sending off a vibrating sound..couldn’t sleep with the fan on like I use to because the vibration of the fan being on…also dishes pots and pans forks clinking hurt my ears. Also have a loud hissing in my head. That’s how bad it was. Had to stop sleeping with my husband because his snoring really hurt my ears to the point where it was making me dizzy. Loud sudden sounds we’re making me dizzy. And I just finished prednisone less than 2 weeks ago and it did bring down the hiss and also decreased the hearing sensitivity a bit but not pre vax. I Would say my symptoms were slightly decreasing but then the exposure to loud sudden sounds would throw me off and I would have a relapse. Because in June 2022 I didn’t have a loud hiss like it was right now it was when I saw a different audiologist that did these tests on my flapping my ear drums to see if they were working and also checking to see if my hair cells in my ears were good increased my hissing so loud and my hearing sensitivity got really bad after that appointment I was living In regret because I was adapted to the hissing and symptoms before that. I as fine. But then that happened and I haven’t been the same. Feels like it was just getting worse and worse. But the prednisone really helped I found. So it’s definitely inflammation related. Also all my tests MRI of head neck spine good, CT of temporals and head good, blood work good, however I had an elevated CRP and ESR but nothing for them to get excited about apparently. Hearing tests normal as well. Eye exams normal normal optic nerves dilated pupils and normal. Normal motor function they said both eyes are fine. Which is great. 

I haven’t caught COVID thank goodness. I do work in health care I am very cautious and I always wear PPE. I’m really worried to even catch a cold thinking this will make my nerves in my head swell up again or become inflamed and start getting all wonky.

I’ve been masking up since march 2020. 

I don’t have any social media. I’ve been on Reddit just to read the stories I think I do have an account with them. But I haven’t really read too much. 

are there other links or forums you recommend? I be really glad to read them and I always want to hear positive stories. 


   
ReplyQuote
(@buzzgirl)
Very Active Member
Joined: 2 years ago
Posts: 120
 
Posted by: @margaret2022
Posted by: @buzzgirl
Posted by: @margaret2022
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? 

 

My booster was December 2021…

antibodies were 1927 in April 2022

Antibodies in sept 2022 were 900’s

interesting to see yours are still high. And with all the symptoms you’re experiencing. The symptoms are definitely related to amount of antibodies you have. I believe there’s a correlation there. I did see a post on one of these forums that it took 18 months for this person to be symptom free. 

im gonna retest again in January to see if there’s any further decrease. I’m hoping once this toxin leaves our bodies we will get better. I honestly don’t remember what normal feels like. It’s been 10 months now since s#!t hit the fan.

Hi @margaret2022 

What are your symptoms and have they decreased as your antibodies decreased? Some people experience this. Unfortunately some people don't (I have read this on this forum). 

Have you caught the virus since your booster? I was doing okay but the virus increased my then current symptoms and gave me additional ones. I have improved a little but have not returned to pre virus baseline unfortunately. Are you on other platforms? Reddit, FB etc? 

My symptoms are hearing sensitivity to left ear  trouble with left eye where my left can’t and doesn’t work well with my right eye causing it hard to focus meanwhile my vision is clear got some eye floaters as well in both eyes this was brought on by loud sounds … I also have like brain fog/ weird feeling in my head like no clarity or something like I’m not the same person just a weird feeling….I feel like the hearing sensitivity has gone up and down where I’d have a relapse where it’s super sensitive. As in the light LED bulbs in my house I had to change to regular bulbs because the LED were sending off a vibrating sound..couldn’t sleep with the fan on like I use to because the vibration of the fan being on…also dishes pots and pans forks clinking hurt my ears. Also have a loud hissing in my head. That’s how bad it was. Had to stop sleeping with my husband because his snoring really hurt my ears to the point where it was making me dizzy. Loud sudden sounds we’re making me dizzy. And I just finished prednisone less than 2 weeks ago and it did bring down the hiss and also decreased the hearing sensitivity a bit but not pre vax. I Would say my symptoms were slightly decreasing but then the exposure to loud sudden sounds would throw me off and I would have a relapse. Because in June 2022 I didn’t have a loud hiss like it was right now it was when I saw a different audiologist that did these tests on my flapping my ear drums to see if they were working and also checking to see if my hair cells in my ears were good increased my hissing so loud and my hearing sensitivity got really bad after that appointment I was living In regret because I was adapted to the hissing and symptoms before that. I as fine. But then that happened and I haven’t been the same. Feels like it was just getting worse and worse. But the prednisone really helped I found. So it’s definitely inflammation related. Also all my tests MRI of head neck spine good, CT of temporals and head good, blood work good, however I had an elevated CRP and ESR but nothing for them to get excited about apparently. Hearing tests normal as well. Eye exams normal normal optic nerves dilated pupils and normal. Normal motor function they said both eyes are fine. Which is great. 

I haven’t caught COVID thank goodness. I do work in health care I am very cautious and I always wear PPE. I’m really worried to even catch a cold thinking this will make my nerves in my head swell up again or become inflamed and start getting all wonky.

I’ve been masking up since march 2020. 

I don’t have any social media. I’ve been on Reddit just to read the stories I think I do have an account with them. But I haven’t really read too much. 

are there other links or forums you recommend? I be really glad to read them and I always want to hear positive stories. 

 

Thanks for sharing. I have mainly being following LC stories and a few V ones. Both reddit and FB post some good ghings bit you do have to be mindful on what you read. Although we are all suffering, some people have only experienced a few issues where others are quite bad. What was the course of steriods you went on? For how long and what dosage? I have read some stories where the symptoms come back when going off, or when they taper down to 10mg. I am glad to hear you can still work, some people cannot.


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

 

My booster was December 2021…

antibodies were 1927 in April 2022

Antibodies in sept 2022 were 900’s

interesting to see yours are still high. And with all the symptoms you’re experiencing. The symptoms are definitely related to amount of antibodies you have. I believe there’s a correlation there. I did see a post on one of these forums that it took 18 months for this person to be symptom free. 

im gonna retest again in January to see if there’s any further decrease. I’m hoping once this toxin leaves our bodies we will get better. I honestly don’t remember what normal feels like. It’s been 10 months now since s#!t hit the fan.

Hi @margaret2022 

What are your symptoms and have they decreased as your antibodies decreased? Some people experience this. Unfortunately some people don't (I have read this on this forum). 

Have you caught the virus since your booster? I was doing okay but the virus increased my then current symptoms and gave me additional ones. I have improved a little but have not returned to pre virus baseline unfortunately. Are you on other platforms? Reddit, FB etc? 

My symptoms are hearing sensitivity to left ear  trouble with left eye where my left can’t and doesn’t work well with my right eye causing it hard to focus meanwhile my vision is clear got some eye floaters as well in both eyes this was brought on by loud sounds … I also have like brain fog/ weird feeling in my head like no clarity or something like I’m not the same person just a weird feeling….I feel like the hearing sensitivity has gone up and down where I’d have a relapse where it’s super sensitive. As in the light LED bulbs in my house I had to change to regular bulbs because the LED were sending off a vibrating sound..couldn’t sleep with the fan on like I use to because the vibration of the fan being on…also dishes pots and pans forks clinking hurt my ears. Also have a loud hissing in my head. That’s how bad it was. Had to stop sleeping with my husband because his snoring really hurt my ears to the point where it was making me dizzy. Loud sudden sounds we’re making me dizzy. And I just finished prednisone less than 2 weeks ago and it did bring down the hiss and also decreased the hearing sensitivity a bit but not pre vax. I Would say my symptoms were slightly decreasing but then the exposure to loud sudden sounds would throw me off and I would have a relapse. Because in June 2022 I didn’t have a loud hiss like it was right now it was when I saw a different audiologist that did these tests on my flapping my ear drums to see if they were working and also checking to see if my hair cells in my ears were good increased my hissing so loud and my hearing sensitivity got really bad after that appointment I was living In regret because I was adapted to the hissing and symptoms before that. I as fine. But then that happened and I haven’t been the same. Feels like it was just getting worse and worse. But the prednisone really helped I found. So it’s definitely inflammation related. Also all my tests MRI of head neck spine good, CT of temporals and head good, blood work good, however I had an elevated CRP and ESR but nothing for them to get excited about apparently. Hearing tests normal as well. Eye exams normal normal optic nerves dilated pupils and normal. Normal motor function they said both eyes are fine. Which is great. 

I haven’t caught COVID thank goodness. I do work in health care I am very cautious and I always wear PPE. I’m really worried to even catch a cold thinking this will make my nerves in my head swell up again or become inflamed and start getting all wonky.

I’ve been masking up since march 2020. 

I don’t have any social media. I’ve been on Reddit just to read the stories I think I do have an account with them. But I haven’t really read too much. 

are there other links or forums you recommend? I be really glad to read them and I always want to hear positive stories. 

 

Thanks for sharing. I have mainly being following LC stories and a few V ones. Both reddit and FB post some good ghings bit you do have to be mindful on what you read. Although we are all suffering, some people have only experienced a few issues where others are quite bad. What was the course of steriods you went on? For how long and what dosage? I have read some stories where the symptoms come back when going off, or when they taper down to 10mg. I am glad to hear you can still work, some people cannot.

My neurologist started me on 60mg for two days then tapered down from there I was on it for 2 weeks. I was worried about it being a high dose but it was only for a short period. I didn’t experience too much side effects, I did feel a bit jittery but nothing crazy. I was still able to sleep okay decently. Also one of my side effects from this vaccine was sleep issues where I don’t get that tired exhausted feeling anymore like before I’d be able to fall asleep on the couch and sleep through noise like if someone were to come home I’d use to be able to roll over on the couch and sleep but now little noise boom I’m wide awake. I only get a solid 5-6 hours then wake up wide awake and have to try and sooth myself back to sleep, for another 2-3 hours  to equal at least 6-7 hours. 

yeah work is difficult at times. I can’t work with kids right now. I’m a nurse. I can’t do anything with kids because of their screaming it’s too loud for my sensitive ears. Also my coworkers well one in specific I can’t be around due to their frustration tactics such as phone slamming, hitting hands on desk, hitting the keyboard keys. I think they have the most t wonderful job which is answering the phone and directing the calls. Gosh I’d do it in a heart beat with no complaints. It’s very juvenile. But it’s healthcare I guess …can be frustrating? Meanwhile my jobs not frustrating? I don’t go huffing and puffing slamming..( sorry just had to vent) I just do it get er done. Anyways I just stay far away from that one particular person other than that everyone’s pretty supportive at work in terms of being loud. My employer and my coworkers which I’m very grateful for.

I was off work initially when this all occurred I was off for a good 3 1/2 months. I was glad to go back but scared due to the sudden noise that are beyond my control.


   
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(@paulina-m)
Active Member
Joined: 2 years ago
Posts: 6
 

@rastin 

I am very happy for you 🙏

Was it going away and coming back? 


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

@paulina-m No, it was non stop everyday!


   
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 Gail
(@beecig)
Active Member
Joined: 1 year ago
Posts: 5
 

I haven't heard any posts for awhile. I still have tingling in my legs and numbness in my fingertips from the moderna booster I got last December and now it's been a year coming. Have any of you had these symptoms? And if so did you get any relief  from anything? Been to neurologist and family doctor no answers. Have anyone seen an immunologist for this. Scared that this will never away.


   
ReplyQuote
(@allablaze)
New Member
Joined: 1 year ago
Posts: 1
 
New Boy Here In The UK
 
AstraZenaca x 2 2020 - no apparent problems apart from losing my voice.
Nov 2021 Pfizer - everything went to hell.
Oct 2022 Moderna - ground hog day.
 
After the Pfizer booster I got most symptoms described in these pages. As well as the underlying fire in my body, raging variable tinnitus, sight &, gastric, brain, nerve pain problems, dramatic muscle loss and weakness, I started reacting to dust, any trace sugars, starch, lactose, etc in food, drink, or medicines, and histamine. I probably carry an underlying mast cell condition based on the things that have happened to me over the years but hadn't even heard of them until I started researching this lot.
 
Food wise I'm down to a lot of strategically timed free from porridge with water, spinach and kale which are lowest in sugars, and the lowest sugar chicken breast pieces you can get delivered from Tesco in the UK (corn fed chicken has too much for me). Purchased a new hoover months ago to try and get rid of the dust. I've showered the cat and hidden everything containing a whiff of scent. Nothing stops the underlying reaction but all the things I've mentioned just make it a lot worse.
 
At night the worst of the poison racks me and with my veins looking fit to burst it's all a bit Edgar Allan Poe. GP is in denial and worse than useless. She had me on a pile of sedatives and painkillers since 2016 for something else and they had to stopped quickly due to the fillers and sugars in them. If doctors actually treated root causes instead of playing whack a mole with symptoms the world would be a much better place.
 
This forum is the only place I've found that actually contains visible normal people in desperate plights from all of this. All I can say at the moment is that in the days before I got upended again by the Moderna I had noticed tiny improvements in bodily function but that was all set back to ground zero again so it'll be a while. Just gotta keep grinding on and pray that nothing else falls apart. Whoever, wherever you are just try and keep going. and we can see this nightmare through. If you've got any strength left do post if you find anything new.
 
They'll have to acknowledge all of this one day but we just have to look after ourselves and do whatever we need to in the meantime. Keep going all whatever. Jon and Cat.
 
This post was modified 1 year ago by allablaze

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

@chesca17 Hi. How are you? How's the non steriod anti inflammatory going? Did you get another script?


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

Posted by: @buzzgirl

@chesca17 Hi. How are you? How's the non steriod anti inflammatory going? Did you get another script?

hi @buzzgirl thanks for checking in! 
no after 10 days I decided to stop taking them, I just don’t like the risks and risk of side effects with medication and didn’t want to take anything that would interfere with plans to have a baby. So, I’ve gone back to my original plan and I’m back on the natural route and I’m so glad I’ve made that decision. I came across “the nerve doctors” on YouTube and started watching some of dr Valerie’s videos about the supplements to take for nerve repair. She has her own website called heal my nerves where she sells the supplements but it worked out cheaper for me to buy all of the supplements separately than to buy her tablets. She doesn’t try and sell them to you she even gives you tips of which supplements to take to heal the nerves. I spoke to her on email and she’s helped 10 other patients make a full recovery after suffering nerve issues following the vaccine. If you’re interested I can share the supplements I’m taking but after only a week I’m already having more good days than bad now and alot of the burning has subsided. The main supplements in the programme I’m taking are benfotiamine, R - Alpha lipoid acid (watch her video on YouTube about r alpha lipoid acid - the alpha lipoic acid without the R doesn’t work and is a watered down version of the R alpha) I’m also taking acetyl l carnitine. 
here’s the links to some of her really useful videos. 
I finally had my neurology appointment through after waiting since March! It’s this Thursday - I’m going to ask to be tested for peripheral neuropathy and sfn and ask about other vaccine suffering patients and see if they acknowledge it! 
here’s the videos - I also emailed her via her website and she was really helpful. 

this one is about why you should take r alpha lipoic acid and not alpha lipoic acid. 
https://youtu.be/8_rg_VbDoRQ

this one is about the therapeutic dosages of the supplements you should be taking 

https://youtu.be/dKMPMPJM4JY

 

 


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

Posted by: @chesca17

Posted by: @buzzgirl

@chesca17 Hi. How are you? How's the non steriod anti inflammatory going? Did you get another script?

hi @buzzgirl thanks for checking in! 
no after 10 days I decided to stop taking them, I just don’t like the risks and risk of side effects with medication and didn’t want to take anything that would interfere with plans to have a baby. So, I’ve gone back to my original plan and I’m back on the natural route and I’m so glad I’ve made that decision. I came across “the nerve doctors” on YouTube and started watching some of dr Valerie’s videos about the supplements to take for nerve repair. She has her own website called heal my nerves where she sells the supplements but it worked out cheaper for me to buy all of the supplements separately than to buy her tablets. She doesn’t try and sell them to you she even gives you tips of which supplements to take to heal the nerves. I spoke to her on email and she’s helped 10 other patients make a full recovery after suffering nerve issues following the vaccine. If you’re interested I can share the supplements I’m taking but after only a week I’m already having more good days than bad now and alot of the burning has subsided. The main supplements in the programme I’m taking are benfotiamine, R - Alpha lipoid acid (watch her video on YouTube about r alpha lipoid acid - the alpha lipoic acid without the R doesn’t work and is a watered down version of the R alpha) I’m also taking acetyl l carnitine. 
here’s the links to some of her really useful videos. 
I finally had my neurology appointment through after waiting since March! It’s this Thursday - I’m going to ask to be tested for peripheral neuropathy and sfn and ask about other vaccine suffering patients and see if they acknowledge it! 
here’s the videos - I also emailed her via her website and she was really helpful. 

this one is about why you should take r alpha lipoic acid and not alpha lipoic acid. 
https://youtu.be/8_rg_VbDoRQ

this one is about the therapeutic dosages of the supplements you should be taking 

https://youtu.be/dKMPMPJM4JY

 

 

Hi. Thanks for your reply.

Yes I would appreciate knowing the supplements you are taking, and dosage. Glad to hear you are having more better days. Has your tingling subsided a bit as well?

Great timing with your neurologist appointment. Do the do skin biopsies in the uk? There is another test they can do for sfn.. you might have to Google it.

I am going to send you a private message as well. Thanks

 


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

@chesca17 Do you know what your b1 levels are already? Just curious. Thanks


   
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(@cramps2021)
Active Member
Joined: 1 year ago
Posts: 5
 

@kg1986 

did they check you for celiac disease? 
being increased inflammatory markers and positive ANA, were you checked for Lupus or Rheumatoid Arthritis? 

All I can say is stop worrying about cancer as you have had all these tests as you said and if it were, there would be signs somewhere. Definitely if nothing is caught on MRI… the stress of thinking that can cause increased side effects and you don’t want to attract negativity either… think positive! I know it’s hard as I’m going through same thing with having not answers with every test a surgeon and 2 GI docs can think of without answers. I pray you find your answers and it’s easily treatable:) 


   
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(@cramps2021)
Active Member
Joined: 1 year ago
Posts: 5
 

@buzzgirl 

 

im amazed she had decreased symptoms after only a week, placebo effect? Typically herbal supplements take about 3 MONTHS to kick in. Additionally I would do more research on if the supplements are safe during pregnancy if trying to get pregnancy. But yes, better than NSAIDS for pregnancy as they are not recommended. 

not  a lot of options to treat peripheral neuropathy other than pharmaceutical meds like gabapentin, Lyrica and possibly duloxetine for pain.  If there’s a good herbal supplement I would love to hear about it so I can do a thorough search on it through reliable resources.. hope things are going well for you. 


   
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