Shingrix and peripheral neuropathy

Posted by joannerhodes @joannerhodes, Feb 1, 2019

4 days after my 2nd Shingrix vaccination, I suddenly developed intense peripheral neuropathy in both feet…for the first time in my life…anyone else?

Liked by sunnyflower

@helennicola

yes, thanks Toni for your reply, I’m always looking for the cause of my SFN, I believe there has to be a reason. 🙄 Helen

Jump to this post

@helennicola Helen, I understand. It is difficult to know definitively when there are so many variables. I feel many times as patients we take our own treatments for granted and not think there are any risks involved because the cure is more important. It is a chance we take. I wish you well in your research! Toni

Liked by HankB, sunnyflower

REPLY
@rwinney

Hi all –

I wanted to share my happenings as they pertain to this discussion about needles and injections.

Going back to the beginning of my health issues…I began with cervical and occipital pain coupled with migraine, and occasional shoulder/arm numbness. MRI's only showed 2 bulging discs and a moderate herniated disc. Orthopedic Drs found no great defect and steered me to Pain Management where the Dr immediately diagnosed me with Occipital Neualgia. Cervical Spondylosis, Cervicogenic Migraine. It took all of 5 minutes for them to push injections. I mean that's what I was there for, I guess. I believed them and wanted pain relief so I went for it. First, were C4-7 facet joint nerve blocks which were diagnostic tests to determine if they provided acceptable pain relief. Then right and left occipital nerve blocks. I had to report my findings back to them and if enough pain relief was felt then we'd move on to burning off the nerves by Radio Frequency Ablation. This would fry those nerves so I didnt feel pain for a longer period of time. The nerves do grown back eventually, with or without the same pain, and insurance allows for RFA every 6 months. The fine print of course reads that these procedures can possibly cause permanent nerve damage. But, like opting to take medication with side effects, we weigh the odds and take a gamble. Maybe certain things are worth the risk for pain relief.

So, on I went…I believed I had felt pain reduction from the nerve blocks in both the right and left side of my head and neck. I honestly questioned myself as in do I truly feel relief or do I desperately want to feel relief??? After 2 years and 10 RFA's to my head and neck, pain began to increase. Laying on a table face down time and time again for fluoroscopy guided nerve burning in my head and neck was no picnic. I opted out of sedation because I knew I could handle it. By the end of 2 years, I no longer could and would cry on the table from such terrible pain and experience.

Bottom line is, was too much, too much? Probably. Do I suffer from permanent nerve damage now? Yes. Was it from all those needles being injected and further more being fished through my body to burn my nerves? Maybe.

As you all mostly know I inevitably was diagnosed as B12 deficient and with Small Fiber Polyneuropathy. Hmm…let's see, which came first? The chicken or the egg? I've often wondered…did I just have horrible luck and was bound to have permanent nerve damage one way or the other, or, did I contribute to the mess with all those needles and such? I will never know. Water under the damn now.

I also have back pain and have received two sets of low back steroid injections. They helped my hip as well as back but, I no longer receive them. I suppose I'm leery, afraid and concerned going forward with any more needles. Enough was simply enough for me.

I do think injections are of benefit for some and believe in them to a point. They certainly are a bandaid and can be a life saver to many who are desperate for pain relief.

Rachel

Jump to this post

@rwinney. Thanks for sharing. Your experience was no picnic

REPLY
@rwinney

Hi all –

I wanted to share my happenings as they pertain to this discussion about needles and injections.

Going back to the beginning of my health issues…I began with cervical and occipital pain coupled with migraine, and occasional shoulder/arm numbness. MRI's only showed 2 bulging discs and a moderate herniated disc. Orthopedic Drs found no great defect and steered me to Pain Management where the Dr immediately diagnosed me with Occipital Neualgia. Cervical Spondylosis, Cervicogenic Migraine. It took all of 5 minutes for them to push injections. I mean that's what I was there for, I guess. I believed them and wanted pain relief so I went for it. First, were C4-7 facet joint nerve blocks which were diagnostic tests to determine if they provided acceptable pain relief. Then right and left occipital nerve blocks. I had to report my findings back to them and if enough pain relief was felt then we'd move on to burning off the nerves by Radio Frequency Ablation. This would fry those nerves so I didnt feel pain for a longer period of time. The nerves do grown back eventually, with or without the same pain, and insurance allows for RFA every 6 months. The fine print of course reads that these procedures can possibly cause permanent nerve damage. But, like opting to take medication with side effects, we weigh the odds and take a gamble. Maybe certain things are worth the risk for pain relief.

So, on I went…I believed I had felt pain reduction from the nerve blocks in both the right and left side of my head and neck. I honestly questioned myself as in do I truly feel relief or do I desperately want to feel relief??? After 2 years and 10 RFA's to my head and neck, pain began to increase. Laying on a table face down time and time again for fluoroscopy guided nerve burning in my head and neck was no picnic. I opted out of sedation because I knew I could handle it. By the end of 2 years, I no longer could and would cry on the table from such terrible pain and experience.

Bottom line is, was too much, too much? Probably. Do I suffer from permanent nerve damage now? Yes. Was it from all those needles being injected and further more being fished through my body to burn my nerves? Maybe.

As you all mostly know I inevitably was diagnosed as B12 deficient and with Small Fiber Polyneuropathy. Hmm…let's see, which came first? The chicken or the egg? I've often wondered…did I just have horrible luck and was bound to have permanent nerve damage one way or the other, or, did I contribute to the mess with all those needles and such? I will never know. Water under the damn now.

I also have back pain and have received two sets of low back steroid injections. They helped my hip as well as back but, I no longer receive them. I suppose I'm leery, afraid and concerned going forward with any more needles. Enough was simply enough for me.

I do think injections are of benefit for some and believe in them to a point. They certainly are a bandaid and can be a life saver to many who are desperate for pain relief.

Rachel

Jump to this post

@rwinney It seems like many people go into various treatments with the idea that it might help or possibly not. They of course hope so. But it seems like not many understand the risks involved in the treatment itself. This was definitely the case with chemotherapy in regards with the risk for the development of neuropathy as a result. Linda and I attended a class prior to chemo that gave us (supposedly) the risks involved. I believe that class either did not mention neuropathy as a possible side effect of chemo, or if they did mention it, it was seriously downplayed. When Linda did develop neuropathy symptoms after the 2nd infusion, she met with her PCP there in San Diego and she said to Linda "Oh, that will go away as soon as you stop the chemo". Her quick dismissal was a red flag for Linda, and it resulted in her questioning the whole chemotherapy regime, as I at the same time was feeding her a lot of "devil's advocate" info about chemo from the internet, and she ultimately quit chemo at that point, to the extreme consternation of many of her medical advisors at that time.

So I think everyone needs to be very careful about going forward with a treatment, given that downsides might exist that the medical profession will either not tell you about or will downplay in an inappropriate and dishonest manner in my opinion. You really have to be careful about the advice you get and who is giving it.

Rachel, it sounds like you are coming to the opinion that it may have been those treatments (needles, etc.) which you have received which may have contributed to the serious chronic disability you find yourself with now. I agree with your reticence or dubiousness about going forward with more treatments. It's a very sad statement about how little the professionals really know about what they are recommending to people, regardless of their good intentions or not.

Hank

REPLY
@jesfactsmon

@rwinney It seems like many people go into various treatments with the idea that it might help or possibly not. They of course hope so. But it seems like not many understand the risks involved in the treatment itself. This was definitely the case with chemotherapy in regards with the risk for the development of neuropathy as a result. Linda and I attended a class prior to chemo that gave us (supposedly) the risks involved. I believe that class either did not mention neuropathy as a possible side effect of chemo, or if they did mention it, it was seriously downplayed. When Linda did develop neuropathy symptoms after the 2nd infusion, she met with her PCP there in San Diego and she said to Linda "Oh, that will go away as soon as you stop the chemo". Her quick dismissal was a red flag for Linda, and it resulted in her questioning the whole chemotherapy regime, as I at the same time was feeding her a lot of "devil's advocate" info about chemo from the internet, and she ultimately quit chemo at that point, to the extreme consternation of many of her medical advisors at that time.

So I think everyone needs to be very careful about going forward with a treatment, given that downsides might exist that the medical profession will either not tell you about or will downplay in an inappropriate and dishonest manner in my opinion. You really have to be careful about the advice you get and who is giving it.

Rachel, it sounds like you are coming to the opinion that it may have been those treatments (needles, etc.) which you have received which may have contributed to the serious chronic disability you find yourself with now. I agree with your reticence or dubiousness about going forward with more treatments. It's a very sad statement about how little the professionals really know about what they are recommending to people, regardless of their good intentions or not.

Hank

Jump to this post

@jesfactsmon Hi Hank, I agree with your comments. As soon as I woke from my last AVM repair surgery, I felt the annoying numbness and tingling. I reported it to my neurosurgeon right away. He told me the very same, that it would go away by the next day. For me, the benefits outweighed the risks. I was lucky no nerve was severed. Don’t forget these professionals are from the generations following us. Need I say more? Lol. That is why being knowledgeable with medical procedures allows us to ask detailed questions so WE can make the decisions. I believe it is important to always have a plan B ready. Sadly today more emphasis is placed on profits rather than the caring of people and their ailments. Toni

Liked by HankB

REPLY

@jesfactsmon @rwinney Thanks for the chemo feedback Hank. I have had friends who went through chemotherapy and not one of them mentioned neuropathy as a possible side effect. I have to believe the medical community is really not warning people strongly enough about this possible side effect and based on the high level of pain associated with it as evidenced by these postings. Wrong, wrong, wrong.

REPLY
@helennicola

Hi Hank, I had read that post; I just think it unbelievable that a little needle could cause such a negative reaction as to cause neuropathy. I’d love to be able to read how that is physically possible. Thanks, Helen

Jump to this post

Hi Helen, I just read that trauma can damage nerves so it seems like
the injection could have caused it. @jesthefactsmon

REPLY
@rwinney

Hi all –

I wanted to share my happenings as they pertain to this discussion about needles and injections.

Going back to the beginning of my health issues…I began with cervical and occipital pain coupled with migraine, and occasional shoulder/arm numbness. MRI's only showed 2 bulging discs and a moderate herniated disc. Orthopedic Drs found no great defect and steered me to Pain Management where the Dr immediately diagnosed me with Occipital Neualgia. Cervical Spondylosis, Cervicogenic Migraine. It took all of 5 minutes for them to push injections. I mean that's what I was there for, I guess. I believed them and wanted pain relief so I went for it. First, were C4-7 facet joint nerve blocks which were diagnostic tests to determine if they provided acceptable pain relief. Then right and left occipital nerve blocks. I had to report my findings back to them and if enough pain relief was felt then we'd move on to burning off the nerves by Radio Frequency Ablation. This would fry those nerves so I didnt feel pain for a longer period of time. The nerves do grown back eventually, with or without the same pain, and insurance allows for RFA every 6 months. The fine print of course reads that these procedures can possibly cause permanent nerve damage. But, like opting to take medication with side effects, we weigh the odds and take a gamble. Maybe certain things are worth the risk for pain relief.

So, on I went…I believed I had felt pain reduction from the nerve blocks in both the right and left side of my head and neck. I honestly questioned myself as in do I truly feel relief or do I desperately want to feel relief??? After 2 years and 10 RFA's to my head and neck, pain began to increase. Laying on a table face down time and time again for fluoroscopy guided nerve burning in my head and neck was no picnic. I opted out of sedation because I knew I could handle it. By the end of 2 years, I no longer could and would cry on the table from such terrible pain and experience.

Bottom line is, was too much, too much? Probably. Do I suffer from permanent nerve damage now? Yes. Was it from all those needles being injected and further more being fished through my body to burn my nerves? Maybe.

As you all mostly know I inevitably was diagnosed as B12 deficient and with Small Fiber Polyneuropathy. Hmm…let's see, which came first? The chicken or the egg? I've often wondered…did I just have horrible luck and was bound to have permanent nerve damage one way or the other, or, did I contribute to the mess with all those needles and such? I will never know. Water under the damn now.

I also have back pain and have received two sets of low back steroid injections. They helped my hip as well as back but, I no longer receive them. I suppose I'm leery, afraid and concerned going forward with any more needles. Enough was simply enough for me.

I do think injections are of benefit for some and believe in them to a point. They certainly are a bandaid and can be a life saver to many who are desperate for pain relief.

Rachel

Jump to this post

Rachel, 😲 and @jesfactsmon, @hazlenut, @hellenicola @avmcbellar, @johnbishop .

😥!! Oh my GRACIOUS what you've been through!! I am so sorry you've suffered so!

I like the way you approach it. Really no other choice. Water under the bridge. You don't complain, only deliver the info. Bless your heart ♥️

You're correct when you say these injections work for some and not for others (not your words verbatim).

I 've never heard of frying the nerves but it makes sense. I can't believe you weren't sedated! The only side effects of sedation I' ve ever had are the munchies! 🤣 Man do I ever blow my diet something awful on those days!

I worked in Healthcare 20 years and believe in specialty. I believe a well trained anesthesiologist of well repute is the best doctor to do these procedures.

I 'm dealing with almost identical cervical pathology and head Sxs as you described. My spine doc wants me to have steroid injection /s there too; occipital and /or C-spine. Oy vei.

Good talk. I will send up a few on you behalf. Deeply caring, your friend Sunnyflower 🤗💗

REPLY
@rwinney

Hi all –

I wanted to share my happenings as they pertain to this discussion about needles and injections.

Going back to the beginning of my health issues…I began with cervical and occipital pain coupled with migraine, and occasional shoulder/arm numbness. MRI's only showed 2 bulging discs and a moderate herniated disc. Orthopedic Drs found no great defect and steered me to Pain Management where the Dr immediately diagnosed me with Occipital Neualgia. Cervical Spondylosis, Cervicogenic Migraine. It took all of 5 minutes for them to push injections. I mean that's what I was there for, I guess. I believed them and wanted pain relief so I went for it. First, were C4-7 facet joint nerve blocks which were diagnostic tests to determine if they provided acceptable pain relief. Then right and left occipital nerve blocks. I had to report my findings back to them and if enough pain relief was felt then we'd move on to burning off the nerves by Radio Frequency Ablation. This would fry those nerves so I didnt feel pain for a longer period of time. The nerves do grown back eventually, with or without the same pain, and insurance allows for RFA every 6 months. The fine print of course reads that these procedures can possibly cause permanent nerve damage. But, like opting to take medication with side effects, we weigh the odds and take a gamble. Maybe certain things are worth the risk for pain relief.

So, on I went…I believed I had felt pain reduction from the nerve blocks in both the right and left side of my head and neck. I honestly questioned myself as in do I truly feel relief or do I desperately want to feel relief??? After 2 years and 10 RFA's to my head and neck, pain began to increase. Laying on a table face down time and time again for fluoroscopy guided nerve burning in my head and neck was no picnic. I opted out of sedation because I knew I could handle it. By the end of 2 years, I no longer could and would cry on the table from such terrible pain and experience.

Bottom line is, was too much, too much? Probably. Do I suffer from permanent nerve damage now? Yes. Was it from all those needles being injected and further more being fished through my body to burn my nerves? Maybe.

As you all mostly know I inevitably was diagnosed as B12 deficient and with Small Fiber Polyneuropathy. Hmm…let's see, which came first? The chicken or the egg? I've often wondered…did I just have horrible luck and was bound to have permanent nerve damage one way or the other, or, did I contribute to the mess with all those needles and such? I will never know. Water under the damn now.

I also have back pain and have received two sets of low back steroid injections. They helped my hip as well as back but, I no longer receive them. I suppose I'm leery, afraid and concerned going forward with any more needles. Enough was simply enough for me.

I do think injections are of benefit for some and believe in them to a point. They certainly are a bandaid and can be a life saver to many who are desperate for pain relief.

Rachel

Jump to this post

Boy, I botched that expression….
Water under the damn??? 😂

How about
Water over the dam
or
Water under the bridge

Hah! I just couldn't let it go unnoticed without making fun of myself. 😊 I'll be here all week!

REPLY
@rwinney

Boy, I botched that expression….
Water under the damn??? 😂

How about
Water over the dam
or
Water under the bridge

Hah! I just couldn't let it go unnoticed without making fun of myself. 😊 I'll be here all week!

Jump to this post

Hi Rachel, I had to laugh, I always mess that saying up too! 🙄 😁 Helen

REPLY
@jesfactsmon

@rwinney It seems like many people go into various treatments with the idea that it might help or possibly not. They of course hope so. But it seems like not many understand the risks involved in the treatment itself. This was definitely the case with chemotherapy in regards with the risk for the development of neuropathy as a result. Linda and I attended a class prior to chemo that gave us (supposedly) the risks involved. I believe that class either did not mention neuropathy as a possible side effect of chemo, or if they did mention it, it was seriously downplayed. When Linda did develop neuropathy symptoms after the 2nd infusion, she met with her PCP there in San Diego and she said to Linda "Oh, that will go away as soon as you stop the chemo". Her quick dismissal was a red flag for Linda, and it resulted in her questioning the whole chemotherapy regime, as I at the same time was feeding her a lot of "devil's advocate" info about chemo from the internet, and she ultimately quit chemo at that point, to the extreme consternation of many of her medical advisors at that time.

So I think everyone needs to be very careful about going forward with a treatment, given that downsides might exist that the medical profession will either not tell you about or will downplay in an inappropriate and dishonest manner in my opinion. You really have to be careful about the advice you get and who is giving it.

Rachel, it sounds like you are coming to the opinion that it may have been those treatments (needles, etc.) which you have received which may have contributed to the serious chronic disability you find yourself with now. I agree with your reticence or dubiousness about going forward with more treatments. It's a very sad statement about how little the professionals really know about what they are recommending to people, regardless of their good intentions or not.

Hank

Jump to this post

Hank, I am so sorry for what Linda has been through! And You by her side! How is she doing now in regard to the cancer that she stopped chemo for? Take care, Sunny flower

REPLY
@rwinney

Boy, I botched that expression….
Water under the damn??? 😂

How about
Water over the dam
or
Water under the bridge

Hah! I just couldn't let it go unnoticed without making fun of myself. 😊 I'll be here all week!

Jump to this post

@rwinney
You give me such a kick sometimes Ms. Winney. 🤣 When you first said it I thought "Hmmm, how DOES water actually GET under a dam?" And the fact that you are coming back to it and talking about it makes me laugh (affectionately) at you. Rachel being Rachel!
Hank

PS: great new photo.

Liked by rwinney

REPLY
@bustrbrwn22

@jesfactsmon @rwinney Thanks for the chemo feedback Hank. I have had friends who went through chemotherapy and not one of them mentioned neuropathy as a possible side effect. I have to believe the medical community is really not warning people strongly enough about this possible side effect and based on the high level of pain associated with it as evidenced by these postings. Wrong, wrong, wrong.

Jump to this post

@bustrbrwn22
It is not PC to say this, but here goes: Chemo, regardless how many or few are helped by it (a separate discussion) means, nonetheless, big $$$ to the drug companies. I believe they pressure the med. community to keep neuropathy hidden so people aren't scared away from doing the chemo. By putting 2 and 2 together you can see clearly what happens. Sad. Hank

PS:I know, it might not be true, but it sure makes sense.

REPLY
@bustrbrwn22

@jesfactsmon @rwinney Thanks for the chemo feedback Hank. I have had friends who went through chemotherapy and not one of them mentioned neuropathy as a possible side effect. I have to believe the medical community is really not warning people strongly enough about this possible side effect and based on the high level of pain associated with it as evidenced by these postings. Wrong, wrong, wrong.

Jump to this post

There are dangers involved with the handling of chemotherapy. Therefore, it can only be administered by nurses who receive the specialty training certificate. You would think the information of neuropathy and the drug would be known as a warning. 🤨 Toni

Liked by HankB

REPLY
@jesfactsmon

@bustrbrwn22
It is not PC to say this, but here goes: Chemo, regardless how many or few are helped by it (a separate discussion) means, nonetheless, big $$$ to the drug companies. I believe they pressure the med. community to keep neuropathy hidden so people aren't scared away from doing the chemo. By putting 2 and 2 together you can see clearly what happens. Sad. Hank

PS:I know, it might not be true, but it sure makes sense.

Jump to this post

@jesfactsmon Hank. Being the wise man you are what is really behind this opioid epidemic where now people that are really in need can’t get pain pills. It’s similar to benzo’s. There’s something I am missing here. Best. Jen

Liked by HankB

REPLY
@jesfactsmon

@bustrbrwn22
It is not PC to say this, but here goes: Chemo, regardless how many or few are helped by it (a separate discussion) means, nonetheless, big $$$ to the drug companies. I believe they pressure the med. community to keep neuropathy hidden so people aren't scared away from doing the chemo. By putting 2 and 2 together you can see clearly what happens. Sad. Hank

PS:I know, it might not be true, but it sure makes sense.

Jump to this post

@jesfactsmon Hank, but then why don’t they have any “power” to get pain pills to people
who need them? That’s a money-maker isn’t it? I’m a little bit of a jerk today. I tripped and fell over my TENS unit when I went to the bathroom in the middle of the night….

Liked by HankB

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