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?

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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

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@helennicola

Toni, you said it is possible to get nerve damage which can cause neuropathy by the needle used when getting a shot? Is it then possible this could also happen when getting a flu shot? A few years ago the pharmacist who administered mine caused it to bleed when he administered the shot. He said it was very unusual. Helen

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Hi Helen, Remember there 2 injections i.e. intramuscular (longer needle for muscle tissue) and subcutaneous( shorter needle for fat tissue). For intramuscular injections bleeding and redness are other possible side effects at the injection site. Burning pain at the time can indicate a nerve being involved, for the bleeding, blood vessel(s). The nurse, most often, administering the injection can give you the possible dangers, including with the injection itself and the medication. The physician who gives the order for an injectable medication can also be asked. It is always good to ask prior so you can decide for yourself( avoid any surprises when possible). Hope this answers your question. Toni

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@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

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Hi Helen, Don’t forget your nerve cells are small too. Neuropathy Is caused by nerve damage. The tip of that little needle has the ability to penetrate some cells. Toni

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@jesfactsmon

@helennicola @avmcbellar

Helen, just FYI, 4 days ago @hazelnut posted this:

"I had a ultra sound guided steroid injection for the arthritis in my hip. The rhuemologist must have erred as my leg jumped off the table during the procedure and since that injection I have unbearable pain. The neurologist believes it also polyneuropathy but haven't had tests done for that. I did have the EKG that shows nerve damage."

This is a link to the page the post was on:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=194#comment-425429

Just thought it interesting that this came up again so soon. Hank

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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

REPLY
@avmcbellar

Hi Helen, Remember there 2 injections i.e. intramuscular (longer needle for muscle tissue) and subcutaneous( shorter needle for fat tissue). For intramuscular injections bleeding and redness are other possible side effects at the injection site. Burning pain at the time can indicate a nerve being involved, for the bleeding, blood vessel(s). The nurse, most often, administering the injection can give you the possible dangers, including with the injection itself and the medication. The physician who gives the order for an injectable medication can also be asked. It is always good to ask prior so you can decide for yourself( avoid any surprises when possible). Hope this answers your question. Toni

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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

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@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

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@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

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@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

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@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

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@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.

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