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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@rwinney

@helennicola Thank you Helen! I just looked it over and will keep an eye on the company's progress. I hope you have a comfortable day. 🌻
Rachel

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thanks Rachel, you too! Helen

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@jesfactsmon

@artscaping @maryflorida
I would add that Linda gets shooting pains regularly that start quick and over quick, which is a little different than you both are describing. They happen suddenly, without warning, and seem to happen somewhat randomly. It might happen in her chest, her side, a foot, a leg. Most often probably one or other of her feet, and of course that is the center of her PN. But it happens in other places too. Sometimes it will start in her foot and then go all the way up her body, not just localized. Usually lasts about 30 seconds to a minute or two at most. Sometimes will repeat soon after the first instance. No clue why it comes or where it goes. I know it happens at times I am not around as well as times when I am, and I would estimate that it happens once or twice a week in my presence.

The pain from these incidents is super intense, she sometimes says it's like someone is shoving a needle into her, very sharp,very intense, she yells out in pain, holding whatever place is affected, then it is over, thankfully. She says it seems electrical in nature. I suppose it's just another neuropathy symptom as I don't think it used to happen before she got PN. Hank

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I guess what I am thinking is that there is a difference between an "episode" and a "flare". Episodes are something many of us pass through. They are worth mentioning and probably seeking some answers to the question "has anyone else had this?"

The fire in my abdomen was like that......I needed help to deal with the discomfort and I also needed answers as to why my neuropathy was just hanging out in my stomach. I never got any answers and so I stopped asking. Every once in awhile, a member will ask about the fire in their belly. So is "fire in the belly" something every newly diagnosed neuropathy patient will eventually encounter? If so....how do we know that it is coming and help spread the word about it so that others can say....."that is something I know about.....and it will not hang around."

What episodes or flares have you been dealing with recently?

May you be free of suffering (at least from that last flare) and the causes of suffering.
Chris

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@iceblue

Thanks for all the info. Yes - the video I like is Chapman Fu - who is a Canadian Registered Physiotherapist and Acupuncturist. I will have to see what tomorrow brings, but I can say that after doing the 7 recommended exercises this morning, my pain dissipated and remains absent at this point - 13 hours later. Forward bends are next to nothing for me. I have always been very flexible, and despite being in terrible shape these days, I can still bend over (standing position) and touch my toes without ANY effort. There is no stretch in that specific exercise for me. The exercise that recommends a forward bend from a sitting position feels positively BLISSFUL. But again, I will see what tomorrow (and future days) bring. If I start to hurt, I will know I've made an error in judgement....

I also found a video that showed how to address the trigger point you are explaining. That may also have contributed to how good I felt today. I just know that my feet, my legs, and my lower back have been essentially pain free today 🙂

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@iceblue, I haven't seen that name come up lately? It has been a very tough year, emotionally for me. Are you still having "essentially" pain-free days? I think "Blissful" was your description. I don't quite know what group we are in here, I just saw your iceblue go by and wanted to check-in.

May you be content and at ease.
Chris

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@artscaping

I guess what I am thinking is that there is a difference between an "episode" and a "flare". Episodes are something many of us pass through. They are worth mentioning and probably seeking some answers to the question "has anyone else had this?"

The fire in my abdomen was like that......I needed help to deal with the discomfort and I also needed answers as to why my neuropathy was just hanging out in my stomach. I never got any answers and so I stopped asking. Every once in awhile, a member will ask about the fire in their belly. So is "fire in the belly" something every newly diagnosed neuropathy patient will eventually encounter? If so....how do we know that it is coming and help spread the word about it so that others can say....."that is something I know about.....and it will not hang around."

What episodes or flares have you been dealing with recently?

May you be free of suffering (at least from that last flare) and the causes of suffering.
Chris

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@artscaping
Linda has had PN in her feet mostly, hands sporadically, calves/shins sometimes. Never fire in the stomach. How can you tell if it was neuropathy and not some sort of GI issue? Because of the type of burning sensation?

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@jesfactsmon

@artscaping
Linda has had PN in her feet mostly, hands sporadically, calves/shins sometimes. Never fire in the stomach. How can you tell if it was neuropathy and not some sort of GI issue? Because of the type of burning sensation?

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@jesfactsmon, Hi Hank, No....not the type of burning...the fact that it was in my abdomen. It felt like one of those glass-filled fireplaces when you see the flames just above the glass. It actually replaced the sharp pain attacks in my legs that had been awakening me about 5 a.m. for a long time. Now the fire in the belly took over that job. My neurologist insisted on every test in the book and then another MRI of my brain. He didn't see anything abnormal....just changes due to aging. And so it continued until one day after several months, it just didn't happen. And I have never had it again. That's the kind of "incidents" or "episodes" I am trying to understand. The recent heel was just a "flare" and the burning in the belly was definitely an episode.

So much for trying to categorize this medical condition in terms that can be understood and mean the same thing to everyone. Thanks for responding.

May you have peace and contentment.
Chris

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@artscaping

@jesfactsmon, Hi Hank, No....not the type of burning...the fact that it was in my abdomen. It felt like one of those glass-filled fireplaces when you see the flames just above the glass. It actually replaced the sharp pain attacks in my legs that had been awakening me about 5 a.m. for a long time. Now the fire in the belly took over that job. My neurologist insisted on every test in the book and then another MRI of my brain. He didn't see anything abnormal....just changes due to aging. And so it continued until one day after several months, it just didn't happen. And I have never had it again. That's the kind of "incidents" or "episodes" I am trying to understand. The recent heel was just a "flare" and the burning in the belly was definitely an episode.

So much for trying to categorize this medical condition in terms that can be understood and mean the same thing to everyone. Thanks for responding.

May you have peace and contentment.
Chris

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@artscaping I am right there with you Chris, as you describe trying to understand episodes and incidents. I know exactly what you mean. It's not only unpredictable, its mind boggling. Nature of the beast I suppose. I'm certainly glad I have you all here on Connect because others simply are not able to comprehend the true impact of such fluctuation. Or as I like to call it...chaos.

Best wishes for a peaceful, content evening,
Rachel

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@artscaping

@jesfactsmon, Hi Hank, No....not the type of burning...the fact that it was in my abdomen. It felt like one of those glass-filled fireplaces when you see the flames just above the glass. It actually replaced the sharp pain attacks in my legs that had been awakening me about 5 a.m. for a long time. Now the fire in the belly took over that job. My neurologist insisted on every test in the book and then another MRI of my brain. He didn't see anything abnormal....just changes due to aging. And so it continued until one day after several months, it just didn't happen. And I have never had it again. That's the kind of "incidents" or "episodes" I am trying to understand. The recent heel was just a "flare" and the burning in the belly was definitely an episode.

So much for trying to categorize this medical condition in terms that can be understood and mean the same thing to everyone. Thanks for responding.

May you have peace and contentment.
Chris

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Hello, @artscaping @rwinney and others in this discussion,

I just wanted to say thank you for your posts. I'm a month into a Shingles diagnosis and while the lesions disappeared quite quickly with the anti-viral drug the pain remains (oh what pain). I've been somewhat encouraged by your posts, however. As my lesions were on the waist-band area of my back, the pain circles around to the abdomen and the side as well and feels like a deep sunburn and sometimes, when intense, feels like a ball of fire. Your posts describing this helps me to realize that this is just part of the pain that is to be expected and not something to overly worry over. I'm going to talk with my neurologist and see what she has to say, but you've given me some hope that this might be a come-and-go problem and not a forever problem.

As I'm looking to reduce my need for Gabapentin (which causes balance problems and fogginess) I'm wondering, has anyone tried a Tens Unit for this type of nerve pain?

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@hopeful33250

Hello, @artscaping @rwinney and others in this discussion,

I just wanted to say thank you for your posts. I'm a month into a Shingles diagnosis and while the lesions disappeared quite quickly with the anti-viral drug the pain remains (oh what pain). I've been somewhat encouraged by your posts, however. As my lesions were on the waist-band area of my back, the pain circles around to the abdomen and the side as well and feels like a deep sunburn and sometimes, when intense, feels like a ball of fire. Your posts describing this helps me to realize that this is just part of the pain that is to be expected and not something to overly worry over. I'm going to talk with my neurologist and see what she has to say, but you've given me some hope that this might be a come-and-go problem and not a forever problem.

As I'm looking to reduce my need for Gabapentin (which causes balance problems and fogginess) I'm wondering, has anyone tried a Tens Unit for this type of nerve pain?

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@hopeful33250 Teresa, your handle says it all...hopeful. I'm real sorry for the pain your experiencing. I can not imagine those lesions. I'll tell you this....I had a severe bout of Chilblains last year and got through it although at the time, it was unimaginable with sores, burning, itching, swelling. Burning is a force and it takes great mental toughness to see it through. Believe it or not...last night my feet were intensly burning to the point that I wanted to give up, exhausted from fighting so much but, I thought of my friends here on Connect and the challenges we all face. I was motivated to get through it. These miseries may come and go, some may linger but, we are tough and stronger together. I hope someone here steps up and answer you about TENS unit help. Do you have a TENS unit? I say go for it, try it, you have nothing to lose. Also, I hope your neurologist provides suggestions for better help while you weather this storm. My best wishes, coming your way. 😊 Hang in there.
Rachel

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@rwinney

@hopeful33250 Teresa, your handle says it all...hopeful. I'm real sorry for the pain your experiencing. I can not imagine those lesions. I'll tell you this....I had a severe bout of Chilblains last year and got through it although at the time, it was unimaginable with sores, burning, itching, swelling. Burning is a force and it takes great mental toughness to see it through. Believe it or not...last night my feet were intensly burning to the point that I wanted to give up, exhausted from fighting so much but, I thought of my friends here on Connect and the challenges we all face. I was motivated to get through it. These miseries may come and go, some may linger but, we are tough and stronger together. I hope someone here steps up and answer you about TENS unit help. Do you have a TENS unit? I say go for it, try it, you have nothing to lose. Also, I hope your neurologist provides suggestions for better help while you weather this storm. My best wishes, coming your way. 😊 Hang in there.
Rachel

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@rwinney and to all my fellow Neuropathy Warriors Rachel, I am glad to see you here. I did not find posts from you for awhile, and was worried. Somehow you do write things so perfectly and are able to conceptualize things that I cannot. I feel them, but cannot express them. You describe burning as a "force," and it certainly is. It is an evil monster that resides in me, and is often so much stronger than me. That force utterly wears me out, as we deal with the pain itself, and the utter exhaustion it causes us. No one that has never experienced this war with pain could ever understand it completely, and I am actually kind of happy when they don't quite get. It means they are fairly well, and I am so happy for them. And yes, we at Connect get it. We really are connected!!! I can't imagine not having anyone to share with that really gets it. So Rachel, may your burning be not as horrific today. May it come less, and be less bright. We are Warriors with only the weapons of our minds and hearts. Love to all, Lori

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@lorirenee1

@rwinney and to all my fellow Neuropathy Warriors Rachel, I am glad to see you here. I did not find posts from you for awhile, and was worried. Somehow you do write things so perfectly and are able to conceptualize things that I cannot. I feel them, but cannot express them. You describe burning as a "force," and it certainly is. It is an evil monster that resides in me, and is often so much stronger than me. That force utterly wears me out, as we deal with the pain itself, and the utter exhaustion it causes us. No one that has never experienced this war with pain could ever understand it completely, and I am actually kind of happy when they don't quite get. It means they are fairly well, and I am so happy for them. And yes, we at Connect get it. We really are connected!!! I can't imagine not having anyone to share with that really gets it. So Rachel, may your burning be not as horrific today. May it come less, and be less bright. We are Warriors with only the weapons of our minds and hearts. Love to all, Lori

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@lorirenee1 Thank you for your heartfelt response Lori. I'm here, not going anywhere. I think of you often. Sending love, hugs and strength to you and all who tune in to Connect.
Rachel

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