Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@betty1954

Thanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms are ongoing and I try to always smile and tell everyone I am great. I know my primary doctor who is wonderful wants to help but he has also seen doors closed without any answers given. I will have to read up on SFN and small fiber neuropathy. That is something that I have never heard about. I sometimes feel like no one wants to take the time to just sit down and explain to me what to expect or how to deal with what is happening to my body. I feel shoved aside when it comes to doctors explaining anything. I print off each report after seeing a doctor and that is the way I learn more about what is going on than from the doctors. I guess I am looking for a plan on how to deal with this. I am a doer not a sit and let it happen person. I have yet to have someone tell me this is what you can do to get better or feel better or feel more informed. Everyday is more pain and more spasms and no answers.

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@betty1954, Good afternoon. Oh, my dear….knowledge is power and you certainly seem to need some of that stuff. I have to leave right now and will return to your need to know questions later this evening. In the meantime, I am tagging @johnbishop so that he can share with you the video with the explanations of all types of neuropathy. Don't let the big words scare you away.

You may want to share with John and me, the medications you are currently taking. Do you have an exercise program that helps like gentle yoga? Do you practice mindful meditation? There are many feel better options. Let's get this wheel in motion.

Goodmorning @johnbishop.
If you have a minute will you help @betty1954 understand neuropathy better? Thanks….and may you both be free of suffering for even a few moments today @betty1954. Chris

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Hi @betty1954 — I shared a short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed in an earlier post in this discussion. Here is a link to the post with the video: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=101#comment-321457

He also has many Youtube videos that you can find by searching using his name. Chris @artscaping is right that the more you can learn about your health condition, the better you can advocate for yourself. I shared my story of my diagnosis of idiopathic small fiber peripheral neuropathy and what has helped me in an early post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

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@betty1954

Thanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms are ongoing and I try to always smile and tell everyone I am great. I know my primary doctor who is wonderful wants to help but he has also seen doors closed without any answers given. I will have to read up on SFN and small fiber neuropathy. That is something that I have never heard about. I sometimes feel like no one wants to take the time to just sit down and explain to me what to expect or how to deal with what is happening to my body. I feel shoved aside when it comes to doctors explaining anything. I print off each report after seeing a doctor and that is the way I learn more about what is going on than from the doctors. I guess I am looking for a plan on how to deal with this. I am a doer not a sit and let it happen person. I have yet to have someone tell me this is what you can do to get better or feel better or feel more informed. Everyday is more pain and more spasms and no answers.

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Good evening again @betty1954, I hope the evening has been pleasant for you. Your story of discovery is frustrating and not uncommon. There is nothing wrong with you. For how long have you been in constant pain? What have you read in your patient reports that might give a clue about your next step or even a possible diagnosis?

Sometimes this disconnect happens when the patient doesn't know how to describe what the body is feeling in the terminology that the clinician uses. My journey took between 2-3 years to correctly identify and diagnose SFN (small fiber neuropathy). There is a skin test that pretty much seals the deal. Here is the medical language. "Demonstration of a reduction in the Epidermal Nerve Fiber Density (ENFD) on punch skin biopsy is a highly sensitive and specific test for Small Fiber Neuropathy (SFN)."
By the way, this test is minimally discomforting. It takes about 45 seconds. Then it is sent off to one of the few labs that analyze the results.

So for tonight….just breathe….3 deep breaths. Accept that you are beginning a journey and it is too soon to be dismayed and discouraged. Your "homework" includes John's video and any tips you might pick up by perusing the SFN discussion on Connect. Here is the link.
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/?pg=4#comment-266111

I do want you to know that I noted your comment about your retiree status and financial resources. I think we are in the same boat.
May you be free of suffering and the causes of suffering. Chris

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@artscaping

Good evening again @betty1954, I hope the evening has been pleasant for you. Your story of discovery is frustrating and not uncommon. There is nothing wrong with you. For how long have you been in constant pain? What have you read in your patient reports that might give a clue about your next step or even a possible diagnosis?

Sometimes this disconnect happens when the patient doesn't know how to describe what the body is feeling in the terminology that the clinician uses. My journey took between 2-3 years to correctly identify and diagnose SFN (small fiber neuropathy). There is a skin test that pretty much seals the deal. Here is the medical language. "Demonstration of a reduction in the Epidermal Nerve Fiber Density (ENFD) on punch skin biopsy is a highly sensitive and specific test for Small Fiber Neuropathy (SFN)."
By the way, this test is minimally discomforting. It takes about 45 seconds. Then it is sent off to one of the few labs that analyze the results.

So for tonight….just breathe….3 deep breaths. Accept that you are beginning a journey and it is too soon to be dismayed and discouraged. Your "homework" includes John's video and any tips you might pick up by perusing the SFN discussion on Connect. Here is the link.
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/?pg=4#comment-266111

I do want you to know that I noted your comment about your retiree status and financial resources. I think we are in the same boat.
May you be free of suffering and the causes of suffering. Chris

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Your reply is so very encouraging

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@rwinney

You have inspired me!
Thank you.

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Happy Sunday everyone!
I keep a library of helpful links on my phone that I refer to periodically and thought I'd share on occasion. Here's one for today.
Rachel

https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/

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Welcome, Betty! I have been with this loop for about a year I think. People here are supportive and we share our experiences with neuropathy and remedies that work for us and which ones don't. I have learned a lot about it that doctors don't have time to tell us. I found out that we're all different — this is a capricious condition we have. Peggy

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I was diagnosed with Chronic Demylinating Ideopathic Polyneuropathy (non-diabetic) in the mid-late 90s. Went from a feeling of having balled up tissue under my foot to so many kinds of pain I still can't find the words to describe them. Stabbing pains were the worst and my Neurologist sent me to a Anestheoligist to get stronger meds. I eventually learned how to manage each kind as well as possible. Stabbing pain required Percocet be taken as soon as the stabbing starts, otherwise nothing stops it. The intense burning is sometimes helped by walking, pressure, cold, and the Percocet also helped. At the worst times, I went without much sleep for weeks at a time – often only getting 10-15 minutes between the spikes of pain. It seems to be less severe for the time-being. I pray it stays like this for the foreseeable future. I was completely unprepared to learn there were no magic pills that would cure this disease and all we could do was manage the symptoms.

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I too have had different kinds of pain, at first it was the pin sticks and numbness described in websites, them pain like flaming swords jabbing up through my feet and legs, and flaming fireworks bursting up through my feet and legs, some days it's like steady burning inside my feet and legs, the latest feels like wasps stinging and stinging my arms … this condition that we have is horrible. Peggy

Liked by rwinney

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@pammy922

Yes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose.. Came on after a broken ankle surgery..
Orthopedist thought it was nerve damage from surgery, but spread to opposite foot leg and hands. Had surgery, spinal taps, cat scans, mris, electrical studies. Finally diagnosed at Cornell Weil in manhattan. Was in a wheelchair by then. Was put on intravenous Ivig immunoglobulins every 2 weeks for 2 yrs. lost all motor and sensory in lower legs feet, and hands. I can walk again after much PT, immunoglobulin Iv and time to re myelinated the peripheral nerves. I was a health practitioner 25 yrs prior to my ankle fracture. Now, I can't work at all. My life has become confined and depressing.
My mom, why taking care of me had a major stroke. I tried gaba, neuron tin, lyrica, cbd oil, medical marijuana, now legal in New York but very expensive in liquid form. None of it has done much to decrease the constant tingling, burning, tightness, spasms,numbness. Has anyone tried the supplements with the b vitamins, alpha lipoid acid, turmeric, scull cap, omega 3 ? Has anyone tried ,laser treatments, acupuncture, anything?
Does anyone have a comfortable shoe or slipper? I tried at least 20 shoes. Lems are the only brand I can wear and not have to cut up.
I guess this is all…..my neurologists are pleased that I can walk again, and I will continue the immunoglobulin I've, but my quality of life
Is slim to none. Can't go anywhere without counting the minutes until I can take my shoes off. I am open to any suggestions, will go any where in the world for relief. Thank you

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Hi Pammy, I have chemo induced peripheral neuropathy and diabetes 2 from the steroids during cancer treatment, along with a couple of other reminders.Congratullation on persevering to be able to walk again! 👍. My daughter- in-law recommended the LEMS shoes this summer, and they have been a blessing. Although I Must use a trekking pole or a rollator for balance, I’m able to walk with some measure of comfort. I’ve read that Xeno shoes are much like the Lems with a wider toe box and zero drop. I’m allowed 1 pair of diabetic shoes a year (with Medicare paying 80%) and I’ve had good luck with the Dr Comfort brand. You don’t have to be diabetic to buy them.
I have read quite a bit about “The Protocol” on the small fiber neuropathy Facebook group but haven’t tried it yet. I understand that it usually takes a while to take effect if it does help, so I’m weighing the cost against the possible benefits. I’ll post to Connect if I find that it does help. I hope you’re in a location to enjoy the lovely fall weather. We’ve already had a light snow, but Mother Nature is teasing with a couple of fall like temperatures every 10 days or so. I really treasure those days as I can be outside more safely. Once winter settles in here in MN, I will lose much of my mobility to leave the house 🏡 until April or May. Wishing you the best …

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I've had peripheral neuropathy for 7 years ! Both feet and toes really hurt all the time ! I've tried all the medicines but no pain relief ! I've had 7 back surgeries and the 7th worked and I have no back pain ! I'm scheduled to see a vascular surgeon Nov. 6th for tests to see if my feet are getting enough blood flow to them !? Any suggestions will be appreciated !

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@seniordon09

I've had peripheral neuropathy for 7 years ! Both feet and toes really hurt all the time ! I've tried all the medicines but no pain relief ! I've had 7 back surgeries and the 7th worked and I have no back pain ! I'm scheduled to see a vascular surgeon Nov. 6th for tests to see if my feet are getting enough blood flow to them !? Any suggestions will be appreciated !

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@seniordon09

You may have observed that there are 104 pages of posts in this discussion. If you have the time and energy, you would be helped by reading through them. Maybe you'll find something that will work for you.

Good luck.

Jim

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I've PN for many years in my both feet and toes ! It's really dabilitating !! My feet and toes feel like they're on fire and feels like knives and feels like they are on fire 24/7 !! I went to a Neurologist who specializes in PN ! He gave me an EMG and let me tell you that really, really hurt like heck ! The EMG came back negative ! So, he put me on Horizant 900 mg a day and it has helped just a little bit !! I have an appointment with a vascular doctor because my primary seems to think that my feet and toes aren't getting enough blood flow to them ! This doctor is probably my last chance to get some pain relief !! I also have a nerve stimulator in my back to help my PN but I don't think it's helping ! To everyone with PN, I pray that you can get some pain relief !!!!!

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@seniordon09

I've PN for many years in my both feet and toes ! It's really dabilitating !! My feet and toes feel like they're on fire and feels like knives and feels like they are on fire 24/7 !! I went to a Neurologist who specializes in PN ! He gave me an EMG and let me tell you that really, really hurt like heck ! The EMG came back negative ! So, he put me on Horizant 900 mg a day and it has helped just a little bit !! I have an appointment with a vascular doctor because my primary seems to think that my feet and toes aren't getting enough blood flow to them ! This doctor is probably my last chance to get some pain relief !! I also have a nerve stimulator in my back to help my PN but I don't think it's helping ! To everyone with PN, I pray that you can get some pain relief !!!!!

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Thanks for the information !!

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@seniordon09

I've PN for many years in my both feet and toes ! It's really dabilitating !! My feet and toes feel like they're on fire and feels like knives and feels like they are on fire 24/7 !! I went to a Neurologist who specializes in PN ! He gave me an EMG and let me tell you that really, really hurt like heck ! The EMG came back negative ! So, he put me on Horizant 900 mg a day and it has helped just a little bit !! I have an appointment with a vascular doctor because my primary seems to think that my feet and toes aren't getting enough blood flow to them ! This doctor is probably my last chance to get some pain relief !! I also have a nerve stimulator in my back to help my PN but I don't think it's helping ! To everyone with PN, I pray that you can get some pain relief !!!!!

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@seniordon09 It sounds like you are finally on a journey for an accurate diagnosis after years of suffering. That might tell you the source or you might end up with an inability to identify the cause which will then be referred to as idiopathic.

There is one test that is simple and informative. If your neurologist has the option to conduct a skin punch biopsy for small fiber neuropathy (SFN) please see if it is time for you to have the skin punch test.

it also appears that you are asking for information about treatments that help more than "just a little bit". With a diagnosis, the source of pain will be more definitive and the treatment can be appropriate for the condition.

Have you experimented with medical cannabis? Have a restful sleep. Chris

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I have recently been diagnosed with a form of myelopathy (inflamation on the spine with no known cause). My symptoms have been persistant for the last 18 months (burning, tingling, and numbness in feet, legs, knees, thighs, buttocks, groin, waist area). Tried IV prednisone (8 weeks) and oral prednisone, 60 mg daily, ( 5 months.). Endured harsh side effects and currently weaning off the prednisone. No relief. Symptoms persist 24/7. Next up: mycophenolate(CellCept), another drug that suppresses the immune system followed by a long list of serious side effects, including the risk of skin cancer or lymphoma. Also comes with the FDA Black Box warning. Regular blood checks also required. This drug was designed to prevent rejection of transplanted organs, but evidently is an "off-label" use for fighting inflamation. Because of the severe side effects and other health risks associated with this drug, I am extremely hesitant to begin a regimen to help ease my symptoms. My quality of life has suffered greatly, and I am looking for alternatives. Any suggestions?

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