Living with Neuropathy - Welcome to the group

Posted by Colleen Young @colleenyoung, Jul 14, 2017

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?

@johnbishop

Hi @maddholly, Welcome to Connect. I have idiopathic small fiber PN. Once I found out alcohol damages nerves I stopped drinking. I have no medical training or background but from the reading I've done if you have neuropathy any alcohol is not going to help your body if it is trying to recover. Here are a couple of articles that may be helpful.

Alcoholic Polyneuropathy Issues & Treatment
https://www.alcohol.org/comorbid/polyneuropathy/

Alcoholic neuropathy
https://medlineplus.gov/ency/article/000714.htm

Alcoholic neuropathy: possible mechanisms and future treatment possibilities
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3370340/

I know the initial diagnosis of neuropathy can be pretty discouraging but if you learn as much as you can about the condition and find out what helps others, you might find something that helps you. Have you looked into taking any supplements or vitamins to help with the symptoms?

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Thanks for your response. I will read these articles.

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@glenncrawley

Concerning problems of people with neuropathy having pain wearing shoes, and sleeping with sheets hurting their toes. Search these three topics for some decent solutions: 1. “blanket support for foot of bed”, and 2. “diabetic shoes”, and 3. “diabetic socks”. Pick one that fits your circumstances, and that you can afford. They work very well for me.

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@glenncrawley

I can attest to the benefits of a blanket lifter (from Amazon), diabetic socks and shoes that have a wide toe bed. Some of the socks shrank in the laundry, so they were too tight for my feet. I shop for shoes with a whole new perspective.

Jim

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@tigreyes2004

I'm on Gabapentin & at first it made me so tired I couldn't take it but now I take 300 mg at night & it makes you sleep better & I am on 100 mg in the morning & another in the afternoon. I'm new to this Neuropathy & I have seen no help with the Gabapentin butI am taking Cymbalta with it & it gets me to wear I do function so I guess it helps to a degree. I just don't want to increase it anymore bc if you stopped it suddenly you could have seizures I have been told. Does anyone know a good med that gives relief.

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@tigreyes2004

Finding a medication or combination of meds can take a very long time. All of the meds labeled for neuropathy either did nothing or I had unacceptable side effects, the worst one being Lyrica. It put me in the hospital for a few days. The bummer – it was actually helping with the pain.

I finally had a spinal cord stimulator implant in June, 2017, and it was wonderful!!! I had 80% pain relief. After a year, I started needing to have the stimulator settings tweeked every 3 months. I had been seeing a pain specialist, who took the next step in finding a medication that I could tolerate, and I tried a bunch of off label meds. I was taking morphine sulfate contin before the scs implant, and was able to reduce the dosage, but I still take it because it takes the edge off the pain.

A couple of months ago the pain specialist started me on imipramine, and as I increased the dosage it increased my pain relief. Normally I would have had the Abbott rep adjust my stimulator, but I'm not doing anything until my next appointment with the pain specialist, and evaluate the efficacy of Imipramine. My feet hurt, but it's bearable. I keep my fingers crossed.

So, I would say, don't be surprised if it takes a while to land on the medication that gives you relief without unacceptable side effects. It generally means taking a medication for six weeks to assess its benefit or side effects. My siblings all have taken Gabapentin with good results, but it didn't help me.

Jim

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@jimhd

@tigreyes2004

Finding a medication or combination of meds can take a very long time. All of the meds labeled for neuropathy either did nothing or I had unacceptable side effects, the worst one being Lyrica. It put me in the hospital for a few days. The bummer – it was actually helping with the pain.

I finally had a spinal cord stimulator implant in June, 2017, and it was wonderful!!! I had 80% pain relief. After a year, I started needing to have the stimulator settings tweeked every 3 months. I had been seeing a pain specialist, who took the next step in finding a medication that I could tolerate, and I tried a bunch of off label meds. I was taking morphine sulfate contin before the scs implant, and was able to reduce the dosage, but I still take it because it takes the edge off the pain.

A couple of months ago the pain specialist started me on imipramine, and as I increased the dosage it increased my pain relief. Normally I would have had the Abbott rep adjust my stimulator, but I'm not doing anything until my next appointment with the pain specialist, and evaluate the efficacy of Imipramine. My feet hurt, but it's bearable. I keep my fingers crossed.

So, I would say, don't be surprised if it takes a while to land on the medication that gives you relief without unacceptable side effects. It generally means taking a medication for six weeks to assess its benefit or side effects. My siblings all have taken Gabapentin with good results, but it didn't help me.

Jim

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Thank you for your info. I know this is a tough disease to deal with. I guess I will experiment with this Gabapentin but I don't want to take any more because I have Stage 3 Kidney disease & my dr. is worried if I increase it too much. These golden years are not much fun. Thanks Jim. Best wished Tigreyes

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@tigreyes2004

Thank you for your info. I know this is a tough disease to deal with. I guess I will experiment with this Gabapentin but I don't want to take any more because I have Stage 3 Kidney disease & my dr. is worried if I increase it too much. These golden years are not much fun. Thanks Jim. Best wished Tigreyes

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@tigreyes2004
My wife remembers the effect many of the meds I've tried. I think it made me confused and other stuff.

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I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed as idiopathic???. I don't agree and very few tests have been done to prove otherwise. I believe idiopathic is used because it is easier. I feel other things are going on. My question is has anyone with neuropathy found that towards morning light you are awakened by the feeling that your entire body, including face, is engulfed by hot water running through every fiber of your body? I cannot go bed to sleep once this process starts. I almost feel like my breathing is difficult. This along with the numbness in my legs and cramps so bad in my legs and now up the entire leg. I do get up and when the cramps slow down I get in the shower. My anxiety is then over the top. I don't know if these episodes are caused by anxiety or the anxiety is caused by the episodes. This has been going on for almost a year. I have been prescribed Lexapro 5 mg at night to help with anxiety. Well, that's not working. Medication before bed is 5 mg lexapro, 50 mg Elavil (for neuropathy pain) and 600 mg gabapentin. I am now taking 10 mg melatonin for sleep along with 1/2 dropper CBD. Daytime meds 40 mg lasix. 37.5 effexor That is 5 meds prescribed and 2 prescribed by me. I also take (almost forgot) percocet as needed during the day. This may be 2 1/2 the entire day and none taken at night. I don't know. I see my doctor tomorrow and she will "I don't believe it is the medication. OK so what is it and what recommendation do you have. I am really concerned because I am not going to bed until 11 pm and waking every hour or two until about 5 am. I don't want to go to bed at night. I don't want the process to start all over. It's not that I don't want to wake up in the morning. It is that I am worn down from the process. I am now having fears of the nightly and morning episodes. My day gets better and I try to forget it happened. I am getting really messed up here. The neuropathy is kicking my butt with difficulty walking and severe numbness. I am not seeing a neurologist and the neuropathy was diagnosed by pain management by doing the nerve conduction test. Thank you.

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@summertime4

I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed as idiopathic???. I don't agree and very few tests have been done to prove otherwise. I believe idiopathic is used because it is easier. I feel other things are going on. My question is has anyone with neuropathy found that towards morning light you are awakened by the feeling that your entire body, including face, is engulfed by hot water running through every fiber of your body? I cannot go bed to sleep once this process starts. I almost feel like my breathing is difficult. This along with the numbness in my legs and cramps so bad in my legs and now up the entire leg. I do get up and when the cramps slow down I get in the shower. My anxiety is then over the top. I don't know if these episodes are caused by anxiety or the anxiety is caused by the episodes. This has been going on for almost a year. I have been prescribed Lexapro 5 mg at night to help with anxiety. Well, that's not working. Medication before bed is 5 mg lexapro, 50 mg Elavil (for neuropathy pain) and 600 mg gabapentin. I am now taking 10 mg melatonin for sleep along with 1/2 dropper CBD. Daytime meds 40 mg lasix. 37.5 effexor That is 5 meds prescribed and 2 prescribed by me. I also take (almost forgot) percocet as needed during the day. This may be 2 1/2 the entire day and none taken at night. I don't know. I see my doctor tomorrow and she will "I don't believe it is the medication. OK so what is it and what recommendation do you have. I am really concerned because I am not going to bed until 11 pm and waking every hour or two until about 5 am. I don't want to go to bed at night. I don't want the process to start all over. It's not that I don't want to wake up in the morning. It is that I am worn down from the process. I am now having fears of the nightly and morning episodes. My day gets better and I try to forget it happened. I am getting really messed up here. The neuropathy is kicking my butt with difficulty walking and severe numbness. I am not seeing a neurologist and the neuropathy was diagnosed by pain management by doing the nerve conduction test. Thank you.

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Hi @summertime4 — I have small fiber PN and lymphedema mostly in my right leg but some in my left leg. I only have numbness so am not taking any meds except 2 for high BP/hypertension. There are a couple of discussions that I think might be helpful for you. The first one has a great YouTube video that provides a lot of explainations and the second one is where members are sharing what has helped them.

> Groups > Neuropathy > Small Fiber Neuropathy lecture (Small Fibers | Big Pain – Dr. Anne Louise Oaklander)
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-lecture/

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

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@summertime4

I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed as idiopathic???. I don't agree and very few tests have been done to prove otherwise. I believe idiopathic is used because it is easier. I feel other things are going on. My question is has anyone with neuropathy found that towards morning light you are awakened by the feeling that your entire body, including face, is engulfed by hot water running through every fiber of your body? I cannot go bed to sleep once this process starts. I almost feel like my breathing is difficult. This along with the numbness in my legs and cramps so bad in my legs and now up the entire leg. I do get up and when the cramps slow down I get in the shower. My anxiety is then over the top. I don't know if these episodes are caused by anxiety or the anxiety is caused by the episodes. This has been going on for almost a year. I have been prescribed Lexapro 5 mg at night to help with anxiety. Well, that's not working. Medication before bed is 5 mg lexapro, 50 mg Elavil (for neuropathy pain) and 600 mg gabapentin. I am now taking 10 mg melatonin for sleep along with 1/2 dropper CBD. Daytime meds 40 mg lasix. 37.5 effexor That is 5 meds prescribed and 2 prescribed by me. I also take (almost forgot) percocet as needed during the day. This may be 2 1/2 the entire day and none taken at night. I don't know. I see my doctor tomorrow and she will "I don't believe it is the medication. OK so what is it and what recommendation do you have. I am really concerned because I am not going to bed until 11 pm and waking every hour or two until about 5 am. I don't want to go to bed at night. I don't want the process to start all over. It's not that I don't want to wake up in the morning. It is that I am worn down from the process. I am now having fears of the nightly and morning episodes. My day gets better and I try to forget it happened. I am getting really messed up here. The neuropathy is kicking my butt with difficulty walking and severe numbness. I am not seeing a neurologist and the neuropathy was diagnosed by pain management by doing the nerve conduction test. Thank you.

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I'm so sorry to hear this and relate to most everything you say. First things first…find a Neurologist pronto. Pain Management is not Neurology and it's my opinion that you need better guidance and a more clear path forward. Im rooting for you. Keep us posted and good luck.
Rachel

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@rwinney

I'm so sorry to hear this and relate to most everything you say. First things first…find a Neurologist pronto. Pain Management is not Neurology and it's my opinion that you need better guidance and a more clear path forward. Im rooting for you. Keep us posted and good luck.
Rachel

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Sorry, time was limited before with my response. I'd also like to add that you are the first person I've heard speak of full leg cramping and numbness. My legs and arms experience this and it's debilitating. My best relief during these flares is a topical called Topricin Fibro Cream $14. I generously rub it in all over all limbs, shoulder, hands, feet then use a microwavable heat pack and wrap my worse areas first then rotate. Sometimes, I wrap both legs together with heat around calves then with a blanket tightly around both legs. Tightening and losening muscles may help or applying pressure to areas. For instance, when my shoulder and arm flare I literally lean against arm of couch to apply pressure. Rest can be a big help too along with breathing, quiet and calmness to help settle the nerves. The viscous cycle of pain and anxiety is an eye opener. I hear your words and live them regarding dreading bedtime. I bring heat to bed as well. Once I fall asleep I'm usually out but getting asleep is the problem. Many nights I end up sleeping in my recliner due to insomnia and or pain and discomfort in body and head. I take 165mg of Lyrica Controlled Release with dinner. This may help my sleeping in addition to Duloxetine (Cymbalta) in the morning. I take hydrocodone for pain and it is currently dragging with effectiveness. Many daily supplements in between and receive lidocaine infusions which are doing less and less for me, I feel. I have Small Fiber Neuropathy which shares many commonalities with Fibromyalgia. I'm hoping you get better clarification from a Neurologist. Not a bad idea to be tested for Small Fiber Neuropathy via skin punch biopsy as Fibro has been shown to morph into SFN. There may be only so much that can be done but I'm keeping hope alive and you should too. Keep trying and experimenting with the next step. Being debiliated is no fun at any age. Next up for me may be Plasmapherisis and medical marijuana. I hope any of what I've said helped in some way and that today and tonight bring you relief.
Rachel

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@rwinney

Sorry, time was limited before with my response. I'd also like to add that you are the first person I've heard speak of full leg cramping and numbness. My legs and arms experience this and it's debilitating. My best relief during these flares is a topical called Topricin Fibro Cream $14. I generously rub it in all over all limbs, shoulder, hands, feet then use a microwavable heat pack and wrap my worse areas first then rotate. Sometimes, I wrap both legs together with heat around calves then with a blanket tightly around both legs. Tightening and losening muscles may help or applying pressure to areas. For instance, when my shoulder and arm flare I literally lean against arm of couch to apply pressure. Rest can be a big help too along with breathing, quiet and calmness to help settle the nerves. The viscous cycle of pain and anxiety is an eye opener. I hear your words and live them regarding dreading bedtime. I bring heat to bed as well. Once I fall asleep I'm usually out but getting asleep is the problem. Many nights I end up sleeping in my recliner due to insomnia and or pain and discomfort in body and head. I take 165mg of Lyrica Controlled Release with dinner. This may help my sleeping in addition to Duloxetine (Cymbalta) in the morning. I take hydrocodone for pain and it is currently dragging with effectiveness. Many daily supplements in between and receive lidocaine infusions which are doing less and less for me, I feel. I have Small Fiber Neuropathy which shares many commonalities with Fibromyalgia. I'm hoping you get better clarification from a Neurologist. Not a bad idea to be tested for Small Fiber Neuropathy via skin punch biopsy as Fibro has been shown to morph into SFN. There may be only so much that can be done but I'm keeping hope alive and you should too. Keep trying and experimenting with the next step. Being debiliated is no fun at any age. Next up for me may be Plasmapherisis and medical marijuana. I hope any of what I've said helped in some way and that today and tonight bring you relief.
Rachel

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I want to thank everyone for your response to my post. It helps so much to know others experience these symptoms. I will contact a neurologist as I too feel this is going too far. I do use medical marijuana and have my card so I can purchase. Many times it helps especially at the onset of sleep. It seems that nothing works once the pattern establishes itself. I will be seeking a neurologist. Too many things are going on and very few answers. I see my PCP tomorrow. I get concerned about taking Percocet . I sometimes take 3 a day 10s I believe. They do help with pain during the day, but nights are a different story. I truly feel that I will or have lost my mind. I thank everyone for your input. I say, like many others in this group, that you are more helpful than my doctor.

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@cathylc58

Hi Colleen,
I'm so glad that you're here for us. I'm brand new to this group, and I'm feeling very depressed. I'm a 61 year old female, who has had diabetes since 2006. I started having neuropathy symptoms in August of 2018. As of right now, I have neuropathy in both feet, both small and large intestines, bladder( I have a folley catheter), skin, and as of this morning, my throat. I am so depressed. I feel like neuropathy is stealing my life from me. I used to be so active, and love to go to lawn sales, and markdowns stores, and having lots of fun. But not anymore. I have a catheter bag on my leg, and now I need a walker. I can only sing two verses of the songs at church, because I run out of breath, and I used to love singing, and was in the choir. But not anymore. I'm currently being tested for neuropathy in my heart and lungs. Colleen, I have a question for you, can neuropathy kill you? Because I think that's what it's doing to me.
Thank you for listening to me.
Cathy

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Hi Cathy @cathylc58 – My situation is similar to yours. My idiopathic autonomic neuropathy affects my voice, blood pressure, bladder, bowels, and balance. I'm 63 and it all came on very gradually starting 5 years ago and took 3 years to be diagnosed. Thankfully I'm not diabetic but I do self-catheter and must now use a roller walker to get around. The good news is that an MRI-compatibled InterStim bladder therapy "pacemaker" is on track for FDA approval so hopefully that will ease the bladder problem. Maybe that's something you could look into as well? https://www.fiercebiotech.com/medtech/medtronic-submits-rechargeable-sacral-neurostimulation-device-for-fda-approval

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@summertime4

I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed as idiopathic???. I don't agree and very few tests have been done to prove otherwise. I believe idiopathic is used because it is easier. I feel other things are going on. My question is has anyone with neuropathy found that towards morning light you are awakened by the feeling that your entire body, including face, is engulfed by hot water running through every fiber of your body? I cannot go bed to sleep once this process starts. I almost feel like my breathing is difficult. This along with the numbness in my legs and cramps so bad in my legs and now up the entire leg. I do get up and when the cramps slow down I get in the shower. My anxiety is then over the top. I don't know if these episodes are caused by anxiety or the anxiety is caused by the episodes. This has been going on for almost a year. I have been prescribed Lexapro 5 mg at night to help with anxiety. Well, that's not working. Medication before bed is 5 mg lexapro, 50 mg Elavil (for neuropathy pain) and 600 mg gabapentin. I am now taking 10 mg melatonin for sleep along with 1/2 dropper CBD. Daytime meds 40 mg lasix. 37.5 effexor That is 5 meds prescribed and 2 prescribed by me. I also take (almost forgot) percocet as needed during the day. This may be 2 1/2 the entire day and none taken at night. I don't know. I see my doctor tomorrow and she will "I don't believe it is the medication. OK so what is it and what recommendation do you have. I am really concerned because I am not going to bed until 11 pm and waking every hour or two until about 5 am. I don't want to go to bed at night. I don't want the process to start all over. It's not that I don't want to wake up in the morning. It is that I am worn down from the process. I am now having fears of the nightly and morning episodes. My day gets better and I try to forget it happened. I am getting really messed up here. The neuropathy is kicking my butt with difficulty walking and severe numbness. I am not seeing a neurologist and the neuropathy was diagnosed by pain management by doing the nerve conduction test. Thank you.

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@summertime4
Hi,
I was curious what dose of Melatonin you started on or if you started on 10mg.
Generally speaking, less is usually best. Taking more than you need can backfire and cause insomnia.
Here's some tips to help improve sleep.
Your Anxiety is probably your worst enemy in preventing a good night’s sleep.
Try taking a hot bath or shower, it will help relax your muscles. When I was going to the gym and using the Sauna and Stream room I slept like a baby.
If you go outside in the sun it helps our bodies know when to produce Melatonin.
Go to bed and get up at the same time.
Sleep in a dark, quiet and well ventilated cool room.
Stop drinking caffeine a few hours before going to bed. Stop using computer phone and tv. Relax awhile before going to bed. A weighted blanket helps increase melatonin by increasing certain hormones in the brain.
Magnesium increases melatonin levels, spinach is a good source of magnesium. Electromagnetic Fields reduce the production of melatonin as does smoking at night.
Take care,
Jake

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