Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@rwinney

Back in 2017 my husband and I agreed to make this our last effort to find help. The cost of all those years has really taken it's toll as well. I walked into Dr. Bluestien's office with a chip on my shoulder. The very first thing she said to me was "I have to apologize to you because your case has been mishandled in so many ways". Just the verification that I wasn't crazy made me have a meltdown right in front of her. I explained to her that this was the last time I was going to reach out. How amazing that I found her and even more so that she happens to have had a Tarlov cyst too. I couldn't be thankful enough.

When attempting to offer advice for anyone looking for help, I can't stress enough how important it is for you to be your own advocate. I learned this the hard way. For so long I would just believe whatever the doctor told me. Then slowly I started to see some red flags, things wrong with testing, etc. The list goes on & on. When you go to see a new provider for the first time, instead of looking at it like you are pouring all of your pain out to that person, look at it like you are interviewing the doctor. Basically, you are paying them for a service and therefore you need to have some say in the way they perform that service. Be confident. Have your "speech" ready ahead of time. Explain that you are tired of jumping around looking for a decent doctor that is willing to work with you. Stress that you are not looking for medications, you're looking for help with your condition and some pain relief, whatever that may entail. Watch for red flags. If they seem skeptical of what you're saying, don't seem to have much knowledge of your condition, don't seem to want to answer questions, etc. again, move on. Basically, don't take any crap! In the end ask them right out if they would be willing to work with you.

Subject change… Do you know what nerves go into the tops of your feet or what may be pressing on the nerves? I always have to look everything up and can't really find any info. on it. I'm a weird anatomy buff. I've had PN for a while now from the Tarlov cysts but within the last month the tops of my feet have really started burning like crazy!

Terri

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@rwinney

Hi Ruth

Welcome to Connect. You will see my response earlier to a newly diagnosed member. Well, same thoughts are for you. It really does suck and is unfortunate …the way we need to fend for ourselves with this disease.

I need to sleep in my recliner 50% of the time for pain reasons like yours. It's not fun waking up feeling like you've been hit by a train

My fears of not walking one day are the same as yours and I understand how much negative thoughts can consume the mind.

My best advice is to take each day as it comes, as hard as it may be to stay in the moment. Learn as much as you can about the disease. Understand that each persons case will be unique to them. Keep connected and talk about what you are going through.

Wishing you the best. Take care
Rachel

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RWinny,
Thank You so much
It feels good that I'm not alone in this new horrible journey. I was wondering if you find it less painful when walking or standing up?
I have noticed lately that I'm unable to drive the car because the pain that runs down my left leg into my foot. Even after sitting in the car for longer than 20 mins I find it so hard to stand up straight.
Thank you for any input.
Ruth

REPLY
@adrianna143

RWinny,
Thank You so much
It feels good that I'm not alone in this new horrible journey. I was wondering if you find it less painful when walking or standing up?
I have noticed lately that I'm unable to drive the car because the pain that runs down my left leg into my foot. Even after sitting in the car for longer than 20 mins I find it so hard to stand up straight.
Thank you for any input.
Ruth

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Driving kills my feet! Numbness and cramping

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@wisfloj

Hi Ruth, another Floridian here. Just one thought for you-did your bloodwork she a deficiency in B12 and calcium? The first neurologist I had gave me an RX for a 'super B' type vitamin. He never did bloodwork. I took it for about 5 days and my pain got worse because I didn’t need the B6, my primary dr. then did bloodwork so I know now I did need B12.

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Wisfloj,
No, I haven't seen any doctor besides my pain clinic. She the one who had my nerve test done on my legs and feet. I seen her a week ago and she told me the results, as well as the name of my problem. What kind of doctor do you recommend? ( yes, I have put myself on a high dose of vitamin B12 as well as a calcium pill till I see the right doctor.
Thank you
For any helpful information
Ruth

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It's wonderful to hear from you all right away. I usely don't bother jumping in a group for anything because I never get any responses. So I would like to say " Thank You all So much"
Ruth

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@qball2019

@rwinney

Back in 2017 my husband and I agreed to make this our last effort to find help. The cost of all those years has really taken it's toll as well. I walked into Dr. Bluestien's office with a chip on my shoulder. The very first thing she said to me was "I have to apologize to you because your case has been mishandled in so many ways". Just the verification that I wasn't crazy made me have a meltdown right in front of her. I explained to her that this was the last time I was going to reach out. How amazing that I found her and even more so that she happens to have had a Tarlov cyst too. I couldn't be thankful enough.

When attempting to offer advice for anyone looking for help, I can't stress enough how important it is for you to be your own advocate. I learned this the hard way. For so long I would just believe whatever the doctor told me. Then slowly I started to see some red flags, things wrong with testing, etc. The list goes on & on. When you go to see a new provider for the first time, instead of looking at it like you are pouring all of your pain out to that person, look at it like you are interviewing the doctor. Basically, you are paying them for a service and therefore you need to have some say in the way they perform that service. Be confident. Have your "speech" ready ahead of time. Explain that you are tired of jumping around looking for a decent doctor that is willing to work with you. Stress that you are not looking for medications, you're looking for help with your condition and some pain relief, whatever that may entail. Watch for red flags. If they seem skeptical of what you're saying, don't seem to have much knowledge of your condition, don't seem to want to answer questions, etc. again, move on. Basically, don't take any crap! In the end ask them right out if they would be willing to work with you.

Subject change… Do you know what nerves go into the tops of your feet or what may be pressing on the nerves? I always have to look everything up and can't really find any info. on it. I'm a weird anatomy buff. I've had PN for a while now from the Tarlov cysts but within the last month the tops of my feet have really started burning like crazy!

Terri

Jump to this post

You are correct in your analogy of interviewing. My Neuro is a brilliant man but lacks bedside manner and empathy, unless I'm crying. I have felt trapped with him and because he is highly acclaimed, Im afraid to search for another who may not know as much or be as connected in the field as he. I go back for a follow up Wed after a slew of new blood tests which he tried to reply (via portal) by referring me to a Gastro Dr (for new findings) with not so much as even addressing the chief reason he did the blood work up in the first place…my heightened pain and failing body. This is what I mean. UGH! Because I know my stuff and generally come in prepared, he appears to be put off. I am polite in my presentation except when I get beyond frustrated or scared. That may result in tears or mild sass. Anyway, thanks for the advice. We all continue to help each other through experience. Unfortunately, I do not know specifically the nerves along the top of a foot but do know that mine burn and are painful from any form of flexing or pressure such as snug shoes, walking, standing, driving etc… which is why I cant drive, stand long or walk much. For me, due to Small Fiber Poly Neuropathy.

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@rwinney

You are correct in your analogy of interviewing. My Neuro is a brilliant man but lacks bedside manner and empathy, unless I'm crying. I have felt trapped with him and because he is highly acclaimed, Im afraid to search for another who may not know as much or be as connected in the field as he. I go back for a follow up Wed after a slew of new blood tests which he tried to reply (via portal) by referring me to a Gastro Dr (for new findings) with not so much as even addressing the chief reason he did the blood work up in the first place…my heightened pain and failing body. This is what I mean. UGH! Because I know my stuff and generally come in prepared, he appears to be put off. I am polite in my presentation except when I get beyond frustrated or scared. That may result in tears or mild sass. Anyway, thanks for the advice. We all continue to help each other through experience. Unfortunately, I do not know specifically the nerves along the top of a foot but do know that mine burn and are painful from any form of flexing or pressure such as snug shoes, walking, standing, driving etc… which is why I cant drive, stand long or walk much. For me, due to Small Fiber Poly Neuropathy.

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@rwinney

Oh my gosh! Huge red flags there. I absolutely understand your concern regarding finding a new neuro. I would suggest "interviewing" a few though. When you find someone else you feel comfortable with then tell the current one you're moving on. It's great that you know your stuff, you need to. It is absolutely ridiculous that he didn't explain what the tests were for or what the new findings are. Things like this really upset me. It's the doctor's responsibility to discuss these things with you. You pay plenty of money for those things. You should really make a list of questions and call his office for some answers. You can also call your insurance co. and request a case manager to help you navigate. Please let us know how your next visit goes. I hope it goes well.

I've been there with the tears too, I feel you. I've had many meltdowns in front of doctors over the years. You feel like nobody understands you or believes you and you're just left suffering. The only people who understand what pain does to a person are those who experience it themselves.

Terri

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@adrianna143

RWinny,
Thank You so much
It feels good that I'm not alone in this new horrible journey. I was wondering if you find it less painful when walking or standing up?
I have noticed lately that I'm unable to drive the car because the pain that runs down my left leg into my foot. Even after sitting in the car for longer than 20 mins I find it so hard to stand up straight.
Thank you for any input.
Ruth

Jump to this post

Hi. The most confusing and frustrating part of SFN, for me, has been and continues to be the layers of the disease. Keeping in mind, each persons case may be different.

My neuropathy came in slow (almost 4 years ago) then fast and furious (over a year ago). It has brought pain, aching, stabbing, burning (internal and external), throbbing, tingling, pins, needles, zaps, sun burning, numbness, cramping, muscle weakness, muscle twitching, vibrations, spasms,..I could go on and don't mean to alarm anyone but it's the only way I can explain layers. Some layers I no longer have thanks to Lyrica, some have never left, some have gotten worse.

To answer your specific question…I can no longer drive but when I was trying to, I found ways such as only short distance, putting car in park while at red lights, using cruise control to free me legs/feet and driving with my left foot (little dangerous) as my right foot was worse. Proceed with caution!

This may not happen to you and I truly hope it does not. Remember we're all different.

Some basic steps to try for relief may be topicals, ice, heat, stretching, massage and rest. Although, I have found it's helpful to have the right balance of rest verses activity

Best of luck to you. Be well.
Rachel

REPLY
@rwinney

Hi. The most confusing and frustrating part of SFN, for me, has been and continues to be the layers of the disease. Keeping in mind, each persons case may be different.

My neuropathy came in slow (almost 4 years ago) then fast and furious (over a year ago). It has brought pain, aching, stabbing, burning (internal and external), throbbing, tingling, pins, needles, zaps, sun burning, numbness, cramping, muscle weakness, muscle twitching, vibrations, spasms,..I could go on and don't mean to alarm anyone but it's the only way I can explain layers. Some layers I no longer have thanks to Lyrica, some have never left, some have gotten worse.

To answer your specific question…I can no longer drive but when I was trying to, I found ways such as only short distance, putting car in park while at red lights, using cruise control to free me legs/feet and driving with my left foot (little dangerous) as my right foot was worse. Proceed with caution!

This may not happen to you and I truly hope it does not. Remember we're all different.

Some basic steps to try for relief may be topicals, ice, heat, stretching, massage and rest. Although, I have found it's helpful to have the right balance of rest verses activity

Best of luck to you. Be well.
Rachel

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@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

2013PriusC

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@steeldove

@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

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I am a paraplegic so I drive using hand controls. It was not very costly to convert our car. My husband can still drive it the usual way using his feet.

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@steeldove

@rwinney Rachel, if driving is important to you and you can afford the best, take a look at the digital hand controls at http://www.kempf-usa.com It's really pricey, but it helps me to feel in control of my disease. I drive to the swimming pool three days a week, I drive to physical therapy and other medical appointments. Twice I drove it to Minnesota for appointments at Mayo. The inside ring on the steering wheel of my little Prius C is my gas, and the knob on the right is my brake. I can press a small button the dashboard, and the system immediately converts to the usual gas and brake pedals.

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I like your system much better than mine, but I have used my hand controls for five years now and am used to it. I don’t like driving on the interstate because of the speed and trucks.

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@adrianna143

RWinny,
Thank You so much
It feels good that I'm not alone in this new horrible journey. I was wondering if you find it less painful when walking or standing up?
I have noticed lately that I'm unable to drive the car because the pain that runs down my left leg into my foot. Even after sitting in the car for longer than 20 mins I find it so hard to stand up straight.
Thank you for any input.
Ruth

Jump to this post

@adrianna143

I've had SFPN for more than ten years, first with tingling in my feet, then numbness and around 5 years ago the burning pain kicked in. I have some good doctors, but no medication has helped significantly with the pain. I shouldn't say none of them helped. Lyrica was starting to give me some pain relief, but before I made it up to the full dosage my body reacted dramatically – incoherent, memory loss, couldn't complete a sentence – went to the ER and was admitted for a few days. Bummer. A spinal cord stimulator implant in June of 2017 relieved 75% of the pain. It was wonderful to experience the near absence of pain. Along with morphine sulfate contin, it made life easier for a year. The effectiveness of the stimulator decreased after the first year, and meant that I have to have the settings adjusted every 3 months. I still have a lot of pain, but I believe it would be much worse without medication and the stimulator.

Driving is painful. Thank God for cruise control! It allows me to move my feet around, searching for a position of comfort, which only lasts for a few minutes. Standing still seems to hurt a little more than walking, but lying in bed or the recliner with my feet up is the worst. A day in town for a doctor appointment (4 days this week) and some shopping becomes painful before very long. I browse through stores much more quickly these days.

And now I'm starting to feel the signs of autonomic neuropathy. I didn't need that added to my list of ailments. I often read references here to the interweaving of physical problems and mental health. I found a therapist, and had my first session with him today, after 6+ months of not being able to see one. I've been treated for major depression since 2002, but I didn't start seeing a therapist until I was in deep trouble, down farther and farther into a black hole, and attempting suicide. I can vouch for the fact that pain and depression often feed off each other and the effect is cumulative.

I'm certainly helped by all of the good people here in Connect. I've learned a lot about a wide variety of subjects, from aftercare for a toenail removal to surviving major organ transplants. I'm thankful for the encouragement and support that's been offered to me. It's made my life more bearable.

Jim

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Started with charley horses in October, worsening every day into both legs and burning feet, meds don't help much, did the hot water bottle, a little
help from TIGER BALM after rubbing for more than a minute or two, got GABBABENTIN, didn't do a thing, got to the emergency room, the pain was
tremendous down the legs into the feet, got another drug, TRAMADOL 50 mgs. and an appointment with a NEUROLOGIST next week. Hard to get an appointment five different NEURO DOCTORS FULL UP….I only take a bus now and then, no transportation, found a NEUROLOGIST IN MY TOWN
what do they do? I had every test at the EMERGENCY ROOM already, is this more tests?

Liked by rwinney

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@jimhd

@adrianna143

I've had SFPN for more than ten years, first with tingling in my feet, then numbness and around 5 years ago the burning pain kicked in. I have some good doctors, but no medication has helped significantly with the pain. I shouldn't say none of them helped. Lyrica was starting to give me some pain relief, but before I made it up to the full dosage my body reacted dramatically – incoherent, memory loss, couldn't complete a sentence – went to the ER and was admitted for a few days. Bummer. A spinal cord stimulator implant in June of 2017 relieved 75% of the pain. It was wonderful to experience the near absence of pain. Along with morphine sulfate contin, it made life easier for a year. The effectiveness of the stimulator decreased after the first year, and meant that I have to have the settings adjusted every 3 months. I still have a lot of pain, but I believe it would be much worse without medication and the stimulator.

Driving is painful. Thank God for cruise control! It allows me to move my feet around, searching for a position of comfort, which only lasts for a few minutes. Standing still seems to hurt a little more than walking, but lying in bed or the recliner with my feet up is the worst. A day in town for a doctor appointment (4 days this week) and some shopping becomes painful before very long. I browse through stores much more quickly these days.

And now I'm starting to feel the signs of autonomic neuropathy. I didn't need that added to my list of ailments. I often read references here to the interweaving of physical problems and mental health. I found a therapist, and had my first session with him today, after 6+ months of not being able to see one. I've been treated for major depression since 2002, but I didn't start seeing a therapist until I was in deep trouble, down farther and farther into a black hole, and attempting suicide. I can vouch for the fact that pain and depression often feed off each other and the effect is cumulative.

I'm certainly helped by all of the good people here in Connect. I've learned a lot about a wide variety of subjects, from aftercare for a toenail removal to surviving major organ transplants. I'm thankful for the encouragement and support that's been offered to me. It's made my life more bearable.

Jim

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I got a spinal cord stimulator seven years ago and it helped a lot at first, but as time went on, the relief changed even with the settings being changed many times. High doses of gabapentin works for me. It doesn’t take all the pain away, but I have no side effects from this drug. When I first became paralyzed, I was also put on Tramadol. I hated it because it could be addictive and I got off it after about two years. I dislike going to so many doctors and spending hours in the waiting room with my legs dangling down. The burning pain gets worse this way and by the time I finally get into the exam room, I am hurting a lot. Then when the doctor asks me what my pain level is, I answer ten and he just jots it down but does nothing to relieve my pain. I know how frustrating this is for everyone. Six months ago, I was also diagnosed with kidney failure. Holy smoke, not something else! Two weeks ago, I was back in the hospital with a new blockage in my heart. I had bypass surgery ten years ago and I have six new blockages now. I have a bunch of stents that are blocked up too. But I just soldier on. I won’t be defeated! I know what you mean about that black hole of depression because I have been there in the distant past and have learned never to get there again. Whenever I see it on the horizon, I get my mind to a better place by distraction to something uplifting. I taught myself how to change my mood by changing my environment. Sometimes I would go to a store and be with a bunch of strangers. I would not fall apart or cry in public and it helped me to think about something else. Sometimes I used to play happy music on my stereo or watch a sweet movie. I haven’t fallen into that black hole for many years. I know how to avoid it now. I fought it for many years, more years than I care to admit.

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Good morning everyone who has posted thus far. Some very moving words and statements to wake up to. I'm debilitated from the start of each day til the end and sometimes your words are all I have to look forward to. Despite being about pain, sadness and troubles…navigating through, I find inspiration, grit and tenacity.

You see, I worked for 27 years with and for people. As a bank manager I was a problem solver, a psychiatrist, a friend and financial assistant. Customer Service was the most important part to me, not writing loans or caring about money. I'm a people person and it was more about helping others than anything. I truly miss that aspect since becoming disabled. You may wonder why I'm so vocal on Connect….well, there's why. This place fills my void because I'm home bound and the world is revolving without me. Tough to be alone all day when you're a people person.

@darlingtondoll – amazing that you feel comfortable enough to share your obstacles with us now. Feels good to open up to strangers, weirdly enough. You are inspirational.

@margaretob – you just keep plugging along. Your ALL CAPS statements tell me you mean business! Thats where tenacity comes in. Keep fighting for comfort and relief. And YES…there are always more tests, unfortunately.

@jimhd – you triumph regardless of your challenges because that's just who you are.

@steeldove – look at you go with that car! Never give up, never surrender.

My hands are aching and throbbing now….neuropathy spares no part of this little body. Talk later. Be well everyone.
Rachel

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