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?

@artscaping

Good evening @ashley302, I haven't seen an update for you in your search for information about and treatment for SFN. I think you asked about natural remedies. Have you discovered any self-help treatments? At the top of my list are Yoga, Mindful Meditation and Myofascial Release (MFR ). The yoga and meditation are must-dos for connecting the body, mind, and spirit. I am happy to share more with you if you would find it worthwhile.

You are sooooo young. Perhaps there will soon be a medication that encourages nerves to regenerate. How do you think your small fiber nerves were injured?

You have made a decision to stop taking medication. How are you doing without medication? I understand your desire to be unencumbered with side effects and the possibility of dependency. I reached that point early in my SFN journey. That was when I engaged a "coach" to help me find the right natural remedy and that is medical cannabis. Have you explored that option? I am now four years down the cannabis road and have found a regimen that works best for me.

I am concerned about your anger and depression. How do you feel as you read this? How can I help? I am here for you.
May you have relief from pain. Chris

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Good evening @artscaping ,
I've had numerous labs and testing done to find a root cause of the small fiber neuropathy but nothing has come back to say that's what caused it. I do exercise and eat pretty healthy. I have a strong faith in God and that helps me stay positive and cope.

I really hope they come out with some treatment that can repair the nerves.

I'm doing okay without taking medication. It never really helped with my neuropathy symptoms so I would rather find a natural remedy.

I have not explored the medical cannabis option. Would that require a prescription?

My anger about the condition comes and goes. Most days I"m okay but at times this condition can be overwhelming and I can lash out.

Thank you for your concern and help on this. Ashley

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@jeffrapp

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

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Hi Jeff,

I have been to UCLA which is a big hospital in Los Angeles where they have specialists. So far no reason to know what is causing my neuropathy. So I've tried different remedies and whatever seems to naturally help the pain.

You are right about not to be angry. It doesn't make it any better so I do feel like I'm able to find ways to cope and stay calm and hopeful about this condition.

Thank you for your tips!

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@notborntoburn

Thanks,
I am not on any meds at the moment,except blood pressure. Drs offer no help Ichanged neuro dr but appt is a month away.
I am tired and keep looking for some hope

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@notborntoburn – just wanted to check back in with you since you'd mentioned feeling tired, having a neuro appointment a month out and looking for some hope. How are you doing?

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Still feeling the burn!
Dr suggest lidocaine injections but I don’t think they work for very long so not sure about the benefits.
Just once wouldn’t it be great to sleep and not wake up burning?! But then I would get greedy and want feel that freedom again!!
Thanks for the support I really really value this group

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@notborntoburn

Still feeling the burn!
Dr suggest lidocaine injections but I don’t think they work for very long so not sure about the benefits.
Just once wouldn’t it be great to sleep and not wake up burning?! But then I would get greedy and want feel that freedom again!!
Thanks for the support I really really value this group

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Im sorry for butting in, but something you said struck me.

I receive weekly lidocaine infusions and get partial relief although I will agree it is short lived. When I stopped for one week I realized how important they are, regardless.

I question myself all the time about the joy of having partial pain reduction and why cant it be more or last longer. Mind you I still need to take Hydrocodone (along with Cymbalta and Lyrica) but, it manages my pain better in conjunction with lidocaine.

I try my best to just be thankful and not focus on what lurks around the corner each week after my few "better" days are up. So, I agree with your "get greedy" statement. Hard not too when starved for relief.

My neuropathy seems to be different in the fact that I have wide spread pain through my body and it is not contained to my feet.

I suppose trying lidocaine is about what it's worth to you. I'd hope it would bring your feet some relief, albeit temporary.

Not gonna lie…this rollercoaster of neuropathy is really wearing me down mentally and physically.

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@rwinney

Im sorry for butting in, but something you said struck me.

I receive weekly lidocaine infusions and get partial relief although I will agree it is short lived. When I stopped for one week I realized how important they are, regardless.

I question myself all the time about the joy of having partial pain reduction and why cant it be more or last longer. Mind you I still need to take Hydrocodone (along with Cymbalta and Lyrica) but, it manages my pain better in conjunction with lidocaine.

I try my best to just be thankful and not focus on what lurks around the corner each week after my few "better" days are up. So, I agree with your "get greedy" statement. Hard not too when starved for relief.

My neuropathy seems to be different in the fact that I have wide spread pain through my body and it is not contained to my feet.

I suppose trying lidocaine is about what it's worth to you. I'd hope it would bring your feet some relief, albeit temporary.

Not gonna lie…this rollercoaster of neuropathy is really wearing me down mentally and physically.

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…insomnia at its best! I'm usually a very positive person.

Liked by Leonard

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@ashley302

Good evening @artscaping ,
I've had numerous labs and testing done to find a root cause of the small fiber neuropathy but nothing has come back to say that's what caused it. I do exercise and eat pretty healthy. I have a strong faith in God and that helps me stay positive and cope.

I really hope they come out with some treatment that can repair the nerves.

I'm doing okay without taking medication. It never really helped with my neuropathy symptoms so I would rather find a natural remedy.

I have not explored the medical cannabis option. Would that require a prescription?

My anger about the condition comes and goes. Most days I"m okay but at times this condition can be overwhelming and I can lash out.

Thank you for your concern and help on this. Ashley

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@ashley302

When my neuropathy pain got unbearable, I had a spinal cord stimulator implant, and had an 80% reduction in the pain. That worked for the first year, then I had to get the stimulator adjusted every few months. I have an appointment with the pain specialist in a couple of weeks, and we'll evaluate the benefit of a new medication he prescribed – imipramine. It's really the first medication that has helped with the pain without bad side effects. Morphine sulfate contin takes the edge off the pain, but it doesn't do the whole job. I forget to take the midday pill, which is okay most days, but I should have taken it today.

Of the many meds I've tried over the past five years, Lyrica was the only one that gave me relief. Unfortunately, after a few weeks of gradually increasing the dosage, I had a bad reaction to it. My wife took me to the ER because I was incoherent, lost my memory, couldn't get a whole sentence out, and in the ER I went tachycardic. That got everyone's attention! They were all set to defibrillate, but my heart went back to a normal rhythm right when they were going to shock me. One more thing to add to my list of ailments.

I met with a doctor to discuss a dorsal root ganglion stimulator implant. It was an excellent appointment. She had a conversation with the Abbott rep who adjusts my stimulator, and I'll be seeing him after the appointment with the pain specialist. The surgeon is more knowledgeable than the Abbott rep, so I hope she gave him some good information that will affect the way he resets my scs. I don't want to make any changes in my treatment until I see the pain specialist.

Sometimes it seems as though our lives revolve around doctors and medications. I agree, Ashley, that it would be really nice to be pain free even just for a few days. I look forward every day to being in heaven. Lord, come quickly, as one of the last verses in the Bible says.

Jim

Liked by Leonard

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I was referred to a neurologist after suspected nerve damage resulting from a nerve block that was administered behind my left knee for a foot surgery. The neurologist completed an EMG and NCS. EMG was normal but NCS noted sensory damage, which I expected. The problem is that I tried to explain that I’m also experiencing muscle twitching throughout my body, mostly both legs, and a strange water drop sensation on my legs. When I explained this to the neurologist, he said, “That shouldn’t be from the nerve block.” So I asked him to perform more tests. He simply gave me a followup appointment for January! I’ve never felt so dismissed and disregarded in my life. This is my HEALTH! I tried calling several other neurologists in my community but they all say I need a referral from my PCP or the other neurologist. I am hurt and afraid. And EXTREMELY anxious. Actually, I think I’m crossing over to the depression realm. I’ve had thoughts to end my life just so that I won’t have to suffer! I am normally super positive and solution focused. But right now I feel like a coward. And I’m only 36 years old. My husband is being extremely supportive but he doesn’t quite get it. And I haven’t told anyone else in my life because I don’t want to alarm them until I know for certain that there is cause for alarm. I guess I’m seeking advice and prayers. Thanks so much for reading this post.

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@ashley302

Good evening @artscaping ,
I've had numerous labs and testing done to find a root cause of the small fiber neuropathy but nothing has come back to say that's what caused it. I do exercise and eat pretty healthy. I have a strong faith in God and that helps me stay positive and cope.

I really hope they come out with some treatment that can repair the nerves.

I'm doing okay without taking medication. It never really helped with my neuropathy symptoms so I would rather find a natural remedy.

I have not explored the medical cannabis option. Would that require a prescription?

My anger about the condition comes and goes. Most days I"m okay but at times this condition can be overwhelming and I can lash out.

Thank you for your concern and help on this. Ashley

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@ashley302, Good afternoon Ashley. Thanks for responding. It seems like you are on a bit of a roller coaster from day to day as you seek relief from the burning pain as well as your disappointment and anger.

You may just see the nerve repair treatment in your lifetime. As I understand this, we need to be able to extend the lives of the nerves. If bruised or damaged, that process is very slow. During that time many of us succumb to “hope in a jar” products.

You asked about cannabis. Is your purpose right now to alleviate pain and reduce anger? I have a cannabis regimen based on just two products, tinctures and topicals.

You may need a prescription depending on where you live. If it is California then you just need proof of your age 21. There are helpful folks in the dispensaries. And I am always here for you.

Be safe and protected from inner and outer harm. Chris

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@klro0001

I was referred to a neurologist after suspected nerve damage resulting from a nerve block that was administered behind my left knee for a foot surgery. The neurologist completed an EMG and NCS. EMG was normal but NCS noted sensory damage, which I expected. The problem is that I tried to explain that I’m also experiencing muscle twitching throughout my body, mostly both legs, and a strange water drop sensation on my legs. When I explained this to the neurologist, he said, “That shouldn’t be from the nerve block.” So I asked him to perform more tests. He simply gave me a followup appointment for January! I’ve never felt so dismissed and disregarded in my life. This is my HEALTH! I tried calling several other neurologists in my community but they all say I need a referral from my PCP or the other neurologist. I am hurt and afraid. And EXTREMELY anxious. Actually, I think I’m crossing over to the depression realm. I’ve had thoughts to end my life just so that I won’t have to suffer! I am normally super positive and solution focused. But right now I feel like a coward. And I’m only 36 years old. My husband is being extremely supportive but he doesn’t quite get it. And I haven’t told anyone else in my life because I don’t want to alarm them until I know for certain that there is cause for alarm. I guess I’m seeking advice and prayers. Thanks so much for reading this post.

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I have small fiber peripheral neuropathy, and I experience symptoms exactly like yours: muscle twitching and a strange feeling of water running down my leg. You aren't crazy, it is a manifestation of the disease.
Your neurologist is probably right. PN is a strange disease with multiple manifestations.
Having to wait for an appointment for a few months is quite usual, as neurologists are in short supply these days. My advice is to stick with the one you have, if you otherwise like him/her. Nothing bad is going to happen to you in a few months of waiting, other than the anxiety/depression you mentioned. If you haven't already done so, you should get an appointment with your PCP asap to discuss these problems and what to do about them. Don't be bashful about reporting all your psychological symptoms.
As for your husband, he sounds like a good guy. Try to remember that he is also suffering from your PN, and that he will never "get it" completely, because he doesn't have it.
Try to get to the place where you accept the disease, then go from there. It's a hard thing to do in the beginning, because it threatens your self image. Nevertheless, fear, denial and anxiety will always make things worse.

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@jeffrapp

I have small fiber peripheral neuropathy, and I experience symptoms exactly like yours: muscle twitching and a strange feeling of water running down my leg. You aren't crazy, it is a manifestation of the disease.
Your neurologist is probably right. PN is a strange disease with multiple manifestations.
Having to wait for an appointment for a few months is quite usual, as neurologists are in short supply these days. My advice is to stick with the one you have, if you otherwise like him/her. Nothing bad is going to happen to you in a few months of waiting, other than the anxiety/depression you mentioned. If you haven't already done so, you should get an appointment with your PCP asap to discuss these problems and what to do about them. Don't be bashful about reporting all your psychological symptoms.
As for your husband, he sounds like a good guy. Try to remember that he is also suffering from your PN, and that he will never "get it" completely, because he doesn't have it.
Try to get to the place where you accept the disease, then go from there. It's a hard thing to do in the beginning, because it threatens your self image. Nevertheless, fear, denial and anxiety will always make things worse.

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Thank you for your response. I have scheduled an appointment with my PCP for Friday. Thanks again.

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@artscaping

@ashley302, Good afternoon Ashley. Thanks for responding. It seems like you are on a bit of a roller coaster from day to day as you seek relief from the burning pain as well as your disappointment and anger.

You may just see the nerve repair treatment in your lifetime. As I understand this, we need to be able to extend the lives of the nerves. If bruised or damaged, that process is very slow. During that time many of us succumb to “hope in a jar” products.

You asked about cannabis. Is your purpose right now to alleviate pain and reduce anger? I have a cannabis regimen based on just two products, tinctures and topicals.

You may need a prescription depending on where you live. If it is California then you just need proof of your age 21. There are helpful folks in the dispensaries. And I am always here for you.

Be safe and protected from inner and outer harm. Chris

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Chris, does your cannabis tincture make you feel high and do those cannabis products alleviate all or most of your pain? I’m trying to decide what exactly to purchase during my California visit. Thanks in advance. Helen

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@klro0001

I was referred to a neurologist after suspected nerve damage resulting from a nerve block that was administered behind my left knee for a foot surgery. The neurologist completed an EMG and NCS. EMG was normal but NCS noted sensory damage, which I expected. The problem is that I tried to explain that I’m also experiencing muscle twitching throughout my body, mostly both legs, and a strange water drop sensation on my legs. When I explained this to the neurologist, he said, “That shouldn’t be from the nerve block.” So I asked him to perform more tests. He simply gave me a followup appointment for January! I’ve never felt so dismissed and disregarded in my life. This is my HEALTH! I tried calling several other neurologists in my community but they all say I need a referral from my PCP or the other neurologist. I am hurt and afraid. And EXTREMELY anxious. Actually, I think I’m crossing over to the depression realm. I’ve had thoughts to end my life just so that I won’t have to suffer! I am normally super positive and solution focused. But right now I feel like a coward. And I’m only 36 years old. My husband is being extremely supportive but he doesn’t quite get it. And I haven’t told anyone else in my life because I don’t want to alarm them until I know for certain that there is cause for alarm. I guess I’m seeking advice and prayers. Thanks so much for reading this post.

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@kiro0001 It sound like you're dealing with small fiber neuropathy (SFN), and neurologists are as much in the dark as we are when it comes to treating SFN. Keep in touch with this group, educate yourself, and try for yourself options that have worked for others to relieve the pain.

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@klro0001

I was referred to a neurologist after suspected nerve damage resulting from a nerve block that was administered behind my left knee for a foot surgery. The neurologist completed an EMG and NCS. EMG was normal but NCS noted sensory damage, which I expected. The problem is that I tried to explain that I’m also experiencing muscle twitching throughout my body, mostly both legs, and a strange water drop sensation on my legs. When I explained this to the neurologist, he said, “That shouldn’t be from the nerve block.” So I asked him to perform more tests. He simply gave me a followup appointment for January! I’ve never felt so dismissed and disregarded in my life. This is my HEALTH! I tried calling several other neurologists in my community but they all say I need a referral from my PCP or the other neurologist. I am hurt and afraid. And EXTREMELY anxious. Actually, I think I’m crossing over to the depression realm. I’ve had thoughts to end my life just so that I won’t have to suffer! I am normally super positive and solution focused. But right now I feel like a coward. And I’m only 36 years old. My husband is being extremely supportive but he doesn’t quite get it. And I haven’t told anyone else in my life because I don’t want to alarm them until I know for certain that there is cause for alarm. I guess I’m seeking advice and prayers. Thanks so much for reading this post.

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@klro0001
Hi,
My Neuropathy started in my early thirties. I also had the water sensations. The pain, burning, stinging numbness, pins & needles were awful. I couldn't walk very far. I am one of the lucky ones. Mine got better many years later. The burning now is so mild it's virtually gone. All my other symptoms are better too except the numbness which is worse. When I was having other pain problems my doctor prescribed Fentanyl, and it did help my Neuropathy as well.
You talked about Anxiety, depression suicide, and being ”Super positive.” I'm not trying to diminish the seriousness of what you're going through but you can’t allow yourself to change your positive attitude to negative, it will only cause additional problems and you have enough to deal with. Just take one day at a time and never give up. You’ll get through this just like the rest of us have.
Jake

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@jakedduck1

@klro0001
Hi,
My Neuropathy started in my early thirties. I also had the water sensations. The pain, burning, stinging numbness, pins & needles were awful. I couldn't walk very far. I am one of the lucky ones. Mine got better many years later. The burning now is so mild it's virtually gone. All my other symptoms are better too except the numbness which is worse. When I was having other pain problems my doctor prescribed Fentanyl, and it did help my Neuropathy as well.
You talked about Anxiety, depression suicide, and being ”Super positive.” I'm not trying to diminish the seriousness of what you're going through but you can’t allow yourself to change your positive attitude to negative, it will only cause additional problems and you have enough to deal with. Just take one day at a time and never give up. You’ll get through this just like the rest of us have.
Jake

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Thank you so much for your kind words. I was eating lunch in my office earlier and I suddenly felt extremely overwhelmed. I’m not experiencing pain at this point, it’s mostly odd sensations and discomfort for now. I feel like all of my days are consumed with thoughts about when severe pain will begin and if/when I’ll have to end my career (and all the stress that goes with that). Anyway, I apologize for the rant. Thanks again for the encouragement.

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