Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
@jesfactsmon Hi Hank, I have read so much about Central Sensitization and with all of Linda's allergies/med intolerances, I would imagine she does have Central Sensitization. One of the characteristics of this disorder is an intolerance to chemicals. There can also be intolerances to loud sound, too much light…. just thought I would give you this info. I am pretty sure I have it, too. Not easy. Lori
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Also Lori, I think you might get a lot out of this book. It dives deep into Central Sensitization theories and how to re-train your pain pathways. I found it fascinating. It opened my thoughts up on helpful ways to navigate around chronic pain. Let me know your thoughts, if you ever read it.
Liked by John, Volunteer Mentor
@rwinney Hi Rachel, I would say that I am almost positive you and I have Central Sensitization. We have so many classic features of it. I did read Jonathan Kuttner's book, Life Without Pain, and gained info and insight. At the time I read it, he was offering on line audio consultations regarding my pain. All I had to do was fill out some info, and Naomi Kuttner, his daughter, sent an audio response to me. Long story short, they do not do very well with nerve pain, as far as Central sensitization techniques. I appreciated her honesty, and did not take Jonathan Kuttner's on line class about handling pain. It was not cheap, and I just did not feel it would help. However I do things on my own as far as Central sensitization techniques. However, to be really effective, I would have to do them all day long. I hurt all day long, and it is worsening. How can a person focus only on their pain, all day long? I do so many things to distract myself, but I have to admit, the pain always haunts me in the background. Like constant background painful static, that just never stops. I work so hard at my life that it is exhausting in itself. Oy. What can I say. I just hope you get some help at Mayo. I hope I am scheduled for my DRG trial before I just go and cut my toes off. Meanwhile, I am gonna go listen to Hauser. He is dreamy, and helps me cope…..what a handsome man….Have a decent weekend. You are my warrior hero! Love, Lori
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I hear what you're saying and agree with you. I just posted to Jeff about working hard and how exhausting it can be. I make no promises (regarding the books strategies) but, will continue to try and learn and share and seek personal comfort and distraction. Ughhh…truth is…Mayo's pain program scares the crap out of me. So, the hard work and strategies continue. YOLO (you only live once)!
Enjoy that hunky man you speak of! Now that it what we call distraction. 😍
In late Dec 2019 a sudden and sever pain in my right leg and foot led to an MRI in early January 2020 a Spinal MRI found a "Right-sided lateral disk herniation at L5/S1 affecting the L5 nerve." This was causing the pain in the right leg & foot. I describe the pain as a tightness across the entire foot & ankle and especially across the instep. A feeling as if my skin has shrunk. Also, the bottom of my feet feel like dry leather when I curl my toes. When I walk it feels like I'm walking on crumbled up socks.
In February 2020 a nerve velocity conduction (NVC) and a electromyography study showed mild "sensory diffuse peripheral neuropathy" (PN) on both legs. This is in addition to the pain from the L5/S1 pinched nerve. Surgery at the end of March 2020 successfully removed the compression on the L5 nerve. Complete recovery, when the nerve is no longer inflamed, is expected to take at least 1 more month. My Drs. expect most of the pain – tightness – in my right foot/ankle to resolve with the healing of the nerve. However, they expect the idopathic PN will still there. I'm on 1200mg Gabapentin a day but I'm not sure it is having any positive effect. I'd love to hear from anyone that has a similar symptom with their sensory PN. But here is what's strange about my symptoms: When I awake each day the pain in both feet is gone. BUT by noon both feet start to feel tight and painful. This pain continues to get worse throughout the day and by bedtime it's up to an 8-10. It's difficult to fall asleep with the pain but somehow, I manage to sleep. When I awake the next morning, again no pain. This pattern has been occurring even before the surgery 5 weeks ago. Does anyone else have this weird pattern? From all my research I have not found any articles that explain PN going away during the night only to return mid-morning the next day. It's my belief the pain in both the right foot and left are caused by inflammation of the L5 nerves aggravated by being on my feet and sitting during the day. I can't prove this until I'm able to get another MRI. Plus, the level of PN pain is too extreme to be the result of "Mild sensory diffused PN" to quote the neurologist.
Further supporting my belief that I don't have significant – based on the pain levels – PN is the following. I have tried most of the therapies that fellow sufferers have listed on this forum with zero relief: CBD salve, 500mg full spectrum Hemp extract; DMSO cream,70% DMSO, 30% Aloe Vera; Gummies, 50mg CBD each; and lately Phenytoin 10% PLO gel. Has anyone used all these and found no relief?
I'm hoping to try the Scrambler when California lifts the stay-at-home order. Has anyone with PN tried the Scrambler therapy without results? They're promotional material claims after just a few of the 10 sessions they recommend PN symtoms have been drastically reduced. Anyone tried the Scrambler?
I'd appreciate hearing from anyone with experiences similar to mine, i.e., pain building during the day into late evening only to be gone upon waking.
My pattern is the same in reverse: I wake up every morning with so much pain in my legs and feet that I'm yelling as I hobble to the bathroom and take my morning meds (including gabapentin). I do stretches while waiting for pain to subside. After awhile, I can think about my day ahead and start living it. In the afternoon, I run a few miles and feel much better. In the evening, I'm my old healthy self. I also have idiopathic sensory neuropathy. Peggy
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@pfbacon Lucky woman! You must be one of very few on Connect who is able to RUN!
Correction: I was diagnosed with Axonal Sensory Neuropathy. I don't know what the difference is between Axonal and Idiopathic … Response to steeldove: I have to run – it's the only thing that makes me feel happy. Peggy
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hello Ali or is it @rabbit10 (?) and others. I am so new at blogs but wondered if I can be in on this discussion with @martid and @grandma41 ?? Thanks so much, Sunnyflower
I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome. I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.
Hello you beautiful people. The numbness is unbelievable. How can one have SEVERE sting/burn and numbness at the same time EVERYWHERE?? Nerve disease has to be the worst! Warm regards, Sunnyflower
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.
James, my wife Linda has had PN in her feet since 2014. It started for the first year or two by showing up in the late afternoon. In the morning and early afternoon, no problem. But over the course of years it has started earlier and earlier in the day until now she wakes up in the morning with the bad pain. Later in the day it usually eases somewhat but then kicks back into gear by the early evening and continues to worsen and worsen until she goes to bed. She usually sleeps, which is a blessing. I think maybe the fact that your body and nerves get rest when you sleep has something to do with why you are better in the morning. Hopefully you will continue to get at least that respite during the day. Nerve pain is the weirdest most inexplicable thing. Everyone experiences it a little differently and it changes over time for each person it seems. Linda has tried gabapentin and it did nothing for her except provide awful side effects. She also tried cbd oil with no help from that. She tried lidocaine cream, dmso, different essential oils, off the shelf homeopathics, and a few things I can't even remember, again no lasting help from any of them. @lorirenee1 has mentioned that she did try scrambler therapy. If you enter the word scrambler into the search at the top of this page some of those posts will appear for you to read. She found a good guy in Illinois that she went to. Another poster to this forum, Jim @jimhd got a spinal cord stimulator which gave him significant relief for a year or two but has mentioned recently that he no longers gets any benefit from it. We all seem to be shooting blind at this thing hoping we will hit something. That's all you can do with PN, at least so far. I do think some pieople have derived enough benefit from the Calmere (scrambler) therapy that it might be worth looking into. I am waiting patiently to hear the results of the phase 3 trials of a substance called tertodotoxin (actually a poison derived from pufferfish) to complete being performed by Wex pharmaceuticals. Troublingly I just looked and Wex has taken down some old pages I had links to regarding this. I hope that doesn't me they have quit researching it as it sounded like a very promising pain relief avenue for PN sufferers. Here is a link from 2019 regarding it which I just went and found: https://www.sciencedaily.com/releases/2019/06/190612141435.htm
Good luck James, I hope you have better luck with your PN then some others.
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Hi @sunnyflower and welcome. There's nothing to being included in this ongoing discussion except start posting. You are right, nerve disease is a terrible affliction. Feel free to describe your situation in detail and include anything you have tried to relieve the pain. I got started on this and other forums because of the frustration with reading all the info that exists online of medical websites written by health practitioners. I found that I got more practical and useful info from the people who were actually living with peripheral neuropathy rather than merely researching it. I think you may also find this more useful for you as well. Best to you, Hank
@sunnyflower numbness and pain together means that both your small and large fibers are involved, one causing the numbness, the other causing the pain.
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!
@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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