Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@johnbishop

Hi @steeldove, can I ask what your source is for numbness and pain together means that both your small and large fiber nerves are involved? I've never read anything where numbness is caused by one and pain by the other. Interesting for me since my symptoms for my diagnosis of idiopathic small fiber PN is numbness only. Thanks for any information you can share!

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@steeldove

@johnbishop I was given that information by a osteopathic physician who specializes in osteopathic manual manipulation and who I see for pain management. He explained that one of the fibers is sending to my brain a message that's causing numbness and the other fibers is sending the pain message. Of course, his explanation was much more detailed, but that was the gist of it.

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Thanks @steeldove. I've just not seen anything describing the difference between numbness and pain. We had a guest neurologist researcher at the Minnesota Neuropathy Association a few years ago that mentioned the same thing that my Mayo neurologist told me that only about 20% or less of the people with neuropathy have only numbness as a symptom. I guess I should be thankful that I'm in the 20% category. Also have never read anything on NIH or other neuropathy sites that mentions it so was just curious.

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Thanks @steeldove, I've read both of those and didn't see any specific reference for numbness being a symptom of only small fiber or only large fiber nerves but then I may not be understanding what I read 🙂

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Today, half of my left foot is black and blue and has a big lump in the middle. I don't know what happened. It should be very painful, it should have been painful when it happened. It must be very numb now. Peggy

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@pfbacon

Today, half of my left foot is black and blue and has a big lump in the middle. I don't know what happened. It should be very painful, it should have been painful when it happened. It must be very numb now. Peggy

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Hi Peggy, it sounds like you might want to call your doctor about this. It may be something serious. Especially since you were unaware of anything happening to cause it.

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@jesfactsmon

Thanks for this insight Lori. I will talk to Linda about this when she gets up. From what you say about Central Sensitization (CS) I bet you are right. Linda is sensitive to EVERYTHING. And she startles very very easily. There was a show about ten years ago in which the British comedienne Catherine Tate plays a woman who reminds me of Linda. If her husband lightly placed his pipe on the side table she would jump out of her chair and shriek "Ahhhh!!!!! What was THAT!!?" Linda's not usually that bad but we both watched her play that character and shared a knowing laugh over it. And sensitivity to chemicals? Oh my gosh, so so sensitive. Can you imagine what chemo is like to someone like that? It put her into another world, and a hellish one. One thing about Linda as well as you and many others that I notice is that so often do people with PN have many different things going ka-flooie in their bodies. In Linda's case she also has severe debilitating tinnitus, SAD (seasonal affective disorder), sinus issues, and extremely severe itch from fibromyalgia which feels like its deep inside where you can't scratch. She has other things as well and I can't always remember them all. But she always said she could deal with everything else if she could just get rid of the pain in her feet and lower legs. Anyway, thanks again Lori.

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@jesfactsmon Hi Hank, The more you describe, I can tell you that Linda is like the poster child for Central Sensitivity. Fibromyalgia is a major central sensitization pain problem, and the startling, extreme med sensitivities, are all part of the Central Sensitivity problem. The terrible thing is that nerve pain does not respond very well with techniques used in central sensitivity type pain. I have tried, and my pain is so constant, that I would literally have to try retraining my brain to not feel pain, all day long. Techniques, along with regular exercise, good diet, etc., are things like telling yourself that you are well, and don't need pain signals. You tell yourself, over and over, till the pain leaves. Another…picturing the painful area as something wonderful to you…in my case, radiant sunshine. Singing away the pain is another one. Just sing whole heartedly. I actually love to sing, and this distracts, and may even break the pain cycle sometimes. Let's face it, Hank. Nerve pain is very alien, and hard to handle. I fall back on Kratom, CBD, and marijuana. Praying for my DRG trial. My heart breaks for Linda. My heart breaks for everyone in constant pain. Be safe, Hank Lori

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@pfbacon

Today, half of my left foot is black and blue and has a big lump in the middle. I don't know what happened. It should be very painful, it should have been painful when it happened. It must be very numb now. Peggy

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@pfbacon I concur with Hank. Can you at least send your doctor a picture of your foot? Sunday is just about the worst day to need a doctor, but she/he very likely has an answering service that can page the doctor. Is your foot so numb that you wouldn't feel some sort of trauma? That's one of the reasons I never walk barefoot.

Jim

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@jesfactsmon

Thanks for this insight Lori. I will talk to Linda about this when she gets up. From what you say about Central Sensitization (CS) I bet you are right. Linda is sensitive to EVERYTHING. And she startles very very easily. There was a show about ten years ago in which the British comedienne Catherine Tate plays a woman who reminds me of Linda. If her husband lightly placed his pipe on the side table she would jump out of her chair and shriek "Ahhhh!!!!! What was THAT!!?" Linda's not usually that bad but we both watched her play that character and shared a knowing laugh over it. And sensitivity to chemicals? Oh my gosh, so so sensitive. Can you imagine what chemo is like to someone like that? It put her into another world, and a hellish one. One thing about Linda as well as you and many others that I notice is that so often do people with PN have many different things going ka-flooie in their bodies. In Linda's case she also has severe debilitating tinnitus, SAD (seasonal affective disorder), sinus issues, and extremely severe itch from fibromyalgia which feels like its deep inside where you can't scratch. She has other things as well and I can't always remember them all. But she always said she could deal with everything else if she could just get rid of the pain in her feet and lower legs. Anyway, thanks again Lori.

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@jesfactsmon Hi Hank, Linda sounds like the poster child for Central Sensitization. Her extreme chemical sensitivities, startling so easily, and MOSTLY….FIBROBYALGIA. That illness is almost like the cornerstone of central sensitization. I have a long history of fibromyalgia as well, but over the last 10 years or so, it is very mild. There was a time that I was very sensitive to almost all meds, too. However, it has settled down with age. I have read that people with a history of fibromyalgia often get neuropathy. The problem, however, is that nerve pain does not respond all that well to things people do when their pain is from Central Sensitization. So many techniques, without effectiveness. Anyway, we all keep searching to feel better. Be safe, Hank. Lori

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@johnbishop

Thanks @steeldove. I've just not seen anything describing the difference between numbness and pain. We had a guest neurologist researcher at the Minnesota Neuropathy Association a few years ago that mentioned the same thing that my Mayo neurologist told me that only about 20% or less of the people with neuropathy have only numbness as a symptom. I guess I should be thankful that I'm in the 20% category. Also have never read anything on NIH or other neuropathy sites that mentions it so was just curious.

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@johnbishop John, I'm completely numb from the waist down to the bottom of my feet and both hands are very numb, yet I experience terrible pain in both legs. So when I asked my osteopath how it's possible to have numbness and pain at the same time, he gave me the explanation about the different fibers carrying messages to my brain, and some of the difference in whether the fibers are myelinated. I'm still trying to schedule an appointment with the Mayo pain clinic this summer because I'm trying to sort out what's causing what…as I have severe arthritis throughout my spine, spinal stenosis, scoliosis, etc. My last appointment at Mayo's neurology department was a disaster as the doctors I'd seen in the spine center disagreed with everything the neurologist said. I'd about given up on Mayo, but I've now decided to give them one more shot at the pain clinic,

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@steeldove

@johnbishop John, I'm completely numb from the waist down to the bottom of my feet and both hands are very numb, yet I experience terrible pain in both legs. So when I asked my osteopath how it's possible to have numbness and pain at the same time, he gave me the explanation about the different fibers carrying messages to my brain, and some of the difference in whether the fibers are myelinated. I'm still trying to schedule an appointment with the Mayo pain clinic this summer because I'm trying to sort out what's causing what…as I have severe arthritis throughout my spine, spinal stenosis, scoliosis, etc. My last appointment at Mayo's neurology department was a disaster as the doctors I'd seen in the spine center disagreed with everything the neurologist said. I'd about given up on Mayo, but I've now decided to give them one more shot at the pain clinic,

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@steeldove I hope you get some relief from the Mayo pain clinic this summer and can give us a follow up report with your appointment/treatment. @rwinney has an upcoming appointment with the pain clinic and we are all excited to hear how it goes for her too.

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John- could I ask if you are in the Phoenix Area? I'm hoping they open a full-time pain clinic, but didn't hear yet if they will. thank you, chaplain John

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@lorirenee1

@jesfactsmon Hi Hank, Linda sounds like the poster child for Central Sensitization. Her extreme chemical sensitivities, startling so easily, and MOSTLY….FIBROBYALGIA. That illness is almost like the cornerstone of central sensitization. I have a long history of fibromyalgia as well, but over the last 10 years or so, it is very mild. There was a time that I was very sensitive to almost all meds, too. However, it has settled down with age. I have read that people with a history of fibromyalgia often get neuropathy. The problem, however, is that nerve pain does not respond all that well to things people do when their pain is from Central Sensitization. So many techniques, without effectiveness. Anyway, we all keep searching to feel better. Be safe, Hank. Lori

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Lori, I am starting to do some reading online about central sensitization (CS) and trying to figure out whether Linda has it. Though she has been sensitive to certain external stimuli since the early 80's, she never had chronic pain until chemo in 2014. Her fibromyalgia symptoms began around 1983 and I relate much of her sensitivity to stimuli to fibro. She is highly sensitive to speed (driving 30 mph feels like 70 mph to her sometimes). She is sensitive to bright lights, e.g. even if someone is shining a flashlight at the camera on a TV show it really bothers her. And like I said before, she startles very easily. She is affected by tiny amounts of alcohol or marijuana, i.e. it takes very little to get her high. She does not experience pain from touch, smells or sounds as far as I know, though she has an acute sense of hearing and smell. I think I am still not sure whether she falls into the CS category exactly or not. Her pain is pretty much localized to her feet and just above the ankles and not so much anywhere else. For that I am very grateful and I hope it stays that way and she does not develop pain in other parts of her body.

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@johnjames

John- could I ask if you are in the Phoenix Area? I'm hoping they open a full-time pain clinic, but didn't hear yet if they will. thank you, chaplain John

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Hi John @johnjames – I live in the Rochester, Minnesota outlying area. According to their website, they have pain rehabilitation centers at all three Mayo Clinic Campuses — https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691. I think they are 3 week programs so it may just be specific dates that you would have to have an appointment to go. It might be worth a phone call or you could also try scheduling an appointment on the website and see what is offered?

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@jesfactsmon

Lori, I am starting to do some reading online about central sensitization (CS) and trying to figure out whether Linda has it. Though she has been sensitive to certain external stimuli since the early 80's, she never had chronic pain until chemo in 2014. Her fibromyalgia symptoms began around 1983 and I relate much of her sensitivity to stimuli to fibro. She is highly sensitive to speed (driving 30 mph feels like 70 mph to her sometimes). She is sensitive to bright lights, e.g. even if someone is shining a flashlight at the camera on a TV show it really bothers her. And like I said before, she startles very easily. She is affected by tiny amounts of alcohol or marijuana, i.e. it takes very little to get her high. She does not experience pain from touch, smells or sounds as far as I know, though she has an acute sense of hearing and smell. I think I am still not sure whether she falls into the CS category exactly or not. Her pain is pretty much localized to her feet and just above the ankles and not so much anywhere else. For that I am very grateful and I hope it stays that way and she does not develop pain in other parts of her body.

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@jesfactsmon Hi again, Hank, The problem with learning about CS, is that once you know so much, with nerve disease, there is little to be done about it anyway. The ineffective meds are the same, the methodologies for dealing with the pain, and perhaps, even making it go away, do not work. I really don't care particularly about the intellectual exercise of understanding it, when still, nothing much helps. I just took my Kratom pills, all 9 of them, and in about 15 minutes, my toes will feel less twisted up, the throbbing will vanish. I too, have very focal pain. Only feet. But these feet make my life quite unbearable, much of the time. My problem is that I don't like the feel of being high on marijuana, or very sleepy from Kratom. To me, it is barely a life. I am sorry I am so down. Still waiting for my pain doc to call about my DRG trial, and I think I may have a long wait, due to the 2 month surgical back up due to the virus. Meanwhile, I continue my marijuana, Kratom, and do whatever I can do distract myself from pain. To think that just 2 years ago, I was leading a spunky, normal, life, astounds. me. Man, appreciate every minute of good health. Let me know if you find anything useful in your quest. What a husband you are to do this for Linda. She is blessed with such a good husband…….Be safe. Lori

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@lorirenee1

@jesfactsmon Hi again, Hank, The problem with learning about CS, is that once you know so much, with nerve disease, there is little to be done about it anyway. The ineffective meds are the same, the methodologies for dealing with the pain, and perhaps, even making it go away, do not work. I really don't care particularly about the intellectual exercise of understanding it, when still, nothing much helps. I just took my Kratom pills, all 9 of them, and in about 15 minutes, my toes will feel less twisted up, the throbbing will vanish. I too, have very focal pain. Only feet. But these feet make my life quite unbearable, much of the time. My problem is that I don't like the feel of being high on marijuana, or very sleepy from Kratom. To me, it is barely a life. I am sorry I am so down. Still waiting for my pain doc to call about my DRG trial, and I think I may have a long wait, due to the 2 month surgical back up due to the virus. Meanwhile, I continue my marijuana, Kratom, and do whatever I can do distract myself from pain. To think that just 2 years ago, I was leading a spunky, normal, life, astounds. me. Man, appreciate every minute of good health. Let me know if you find anything useful in your quest. What a husband you are to do this for Linda. She is blessed with such a good husband…….Be safe. Lori

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Linda says she agree with you right down the line on every point you just made. In her words she feels that feet, back and head (as in migraines) are the 3 worst pain areas anyone can deal with. She also disagrees with me in my feeling she may not have CS. She says she definitely fits the profile in her opinion and she has convinced me that this is true. I know what you mean about how strange for your life to have gone from night to day (or vice versa) due to this one malady. Linda was WAY more functional prior to the chemo. For one thing she could travel alone back then. She could get herself to the airport, fly wherever and get to wherever she was going. No way could that be possible today even without the lockdown. She has turned into a semi invalid. She also had spunk, stubbornness and a very healthy will (actually that is still intact). PN has taken much of her life away. And mine of course. I am a willing caregiver but I'd prefer to be a partner for doing things, traveling, going places including restaurants which we used to do a fair amount but haven't done much in the last couple of years. When we do get angry about it it's usually her oncologist we focus it on, who was a nazi and made chemo much more of a nightmare than it had to be by upping her dosages to the max. But after the anger subsides we are left in the same place as before. I tell you if it weren't for a strong belief in god this would be hell. Thank heavens for the sense of proportion that that gives to one. Thanks for all your highly appreciated perspectives Lori. We are rooting for you to get scheduled for your trial soon. -Hank

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