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?

@margottaylor

Wow JK… that's terrible. I'm horrified that former doctors didn't warm you about the risks of taking too much Ibuprofen. How long after you stopped taking it (for the Bursitis?) did you develop Cirrhosis? May I asked what your symptoms when you were that lead them to diagnose the Cirrhosis?

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@margottaylor I don’t think the ibuprofen actually did cause it but it’s interesting to hear that it can cause liver problems. They said my cirrhosis was non-alcoholic cirrhosis caused by fatty liver – I was quite overweight at one point. The hepatologist said I probably had it for 10 years because it takes a long time to present itself.
The symptom that led to a diagnosis was confusion and irrationality, which was from HE episodes, HE is hepatic encephalopathy. Because I had these crazy episodes my doctor thought my problem was neurological so he sent me to a neurologist. The neurologist was the one who said he thought it was my liver! Prior to that I had declining platelet counts, shaky hands, and a few other symptoms, all typical of cirrhosis but no doctor added them up.
HE happens because your poorly functioning liver cannot filter out the ammonia which is a by-product of digestion. The ammonia goes to your brain and causes confusion.
JK

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Thank you jim for your repely, I feel so alone in my pain hurting day and night,I'm so tired! My family can't see the pain, so I don't think they get how sick I am! Its horrible!! Im so depressed,somne days i dont want to wake up cause when I do, theirs the pain back! I'm gonna call the mayo clinic and seek help before they cut open my head! I want my brains left alone! Lol,God bless you and I'll pray for you!

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@jimhd

@resawaller I have been on a quest for nearly a decade for a medication for my peripheral neuropathy. I've gone through the list my PCP could prescribe, then through the list from my neurologist and I'm down to the end of the list from my pain specialist. Lyrica was the first neuropathy medication that was starting to help until I had a serious reaction to it and was in the hospital for a few days. Two years ago I had a Burst DR spinal cord stimulator implant. After the six week recovery, it was turned on, and I had a taste of what it feels like not to be in pain. Now, two years later, I've concluded that it has become less and less effective. It does help, but my feet are hurting in the 5-8 range.

I've been taking a low dose of morphine sulfate contin for several years and I know that the pain would be much worse without it.

The neurologist and the pain specialist have been really great, and I would recommend seeking help from them.

You can go back through this discussion and see all of the various things people have found helpful. The list is long! Good luck in your search for the right medication.

Jim

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Thank you and wish me luck

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@resawaller

Thank you jim for your repely, I feel so alone in my pain hurting day and night,I'm so tired! My family can't see the pain, so I don't think they get how sick I am! Its horrible!! Im so depressed,somne days i dont want to wake up cause when I do, theirs the pain back! I'm gonna call the mayo clinic and seek help before they cut open my head! I want my brains left alone! Lol,God bless you and I'll pray for you!

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@resawaller I appreciate any prayers. It sounds like you have decided to hold off on the surgery scheduled for tomorrow. I think that's wise. I'm reading Proverbs now, and a few times there are comments like the one in 15:22 "Plans fail for lack of counsel, but with many advisors they succeed." That's not the verse I was thinking of, but it alludes to the wisdom of getting advice from multiple people. Anything that's important, like surgery, deserves as much research as we're able to do. I hope you get some answers and relief from your pain soon.

Jim

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@resawaller

Thank you jim for your repely, I feel so alone in my pain hurting day and night,I'm so tired! My family can't see the pain, so I don't think they get how sick I am! Its horrible!! Im so depressed,somne days i dont want to wake up cause when I do, theirs the pain back! I'm gonna call the mayo clinic and seek help before they cut open my head! I want my brains left alone! Lol,God bless you and I'll pray for you!

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I know how you feel about your pain. I am going through the same thing & the meds don't seem to be working. Even when I am in bed I am in pain. I also dread getting up in the morning. The pain we feel I don't think others know unless they go through it themselves. Mine is a constant pain & does not go away. I do my house work & what I nee dto do but it is with pain & I also get depressed. I wish you the best.

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Does anyone know if there is stage of Neuropathy & what do people find is the best med to take for the pain?

Liked by Leonard

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@tigreyes2004

Does anyone know if there is stage of Neuropathy & what do people find is the best med to take for the pain?

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@tigreyes2004, I'm not sure there is a best med to take for the pain since each of us is different and the different medications used may not stop the pain for all of us. I'm not a doctor so really can only speak to my own diagnosis – idiopathic small fiber peripheral neuropathy. My neurologist told me that over time it will get worse but he couldn't say how fast it will get worse. I think it depends on your diagnosis, any treatments you get that may effect the diagnosis, and your diet and lifestyle play a part in the progression (in my humble opinion). I do not have pain with my neuropathy. I only have the numbness but it's still a big concern if it gets worse. I also think that the medications only treat the symptoms and are not a cure. So if the disease does progress it will probably require new/better/more medications to treat the pain.

Hopefully other members will share their thoughts and experience. Are you able to share what medications you are taking for your pain now and if they are helping with the pain?

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@tigreyes2004

Does anyone know if there is stage of Neuropathy & what do people find is the best med to take for the pain?

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@tigreyes2004 From what I've learned, neuropathy is a disease that progresses differently for each individual. I don't know if there are any particular stages, but I'm far from being an expert on the subject.

Jim

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@johnbishop

@tigreyes2004, I'm not sure there is a best med to take for the pain since each of us is different and the different medications used may not stop the pain for all of us. I'm not a doctor so really can only speak to my own diagnosis – idiopathic small fiber peripheral neuropathy. My neurologist told me that over time it will get worse but he couldn't say how fast it will get worse. I think it depends on your diagnosis, any treatments you get that may effect the diagnosis, and your diet and lifestyle play a part in the progression (in my humble opinion). I do not have pain with my neuropathy. I only have the numbness but it's still a big concern if it gets worse. I also think that the medications only treat the symptoms and are not a cure. So if the disease does progress it will probably require new/better/more medications to treat the pain.

Hopefully other members will share their thoughts and experience. Are you able to share what medications you are taking for your pain now and if they are helping with the pain?

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@johnbishop
My Peripheral Neuropathy has actually improved over the years. Im not sure what type mine is, there are well over 100 types. The burning is much less severe as is the pain. The thing that never improved is numbness and sensory loss. What bothers me most is the feeling my feet and lower legs feel 10 times bigger than they are.
My issues started on the bottom of my feet and eventually progressed just past my waist.
My Electrodiagnostic studies only showed mild to moderate polyneuropathy damage but the Neurologist said Symptomatology is not always consistent with test results so mild results may cause severe symptoms. So hope hangs eternal that things may improve.
Best of luck,
Jake

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@jakedduck1

@johnbishop
My Peripheral Neuropathy has actually improved over the years. Im not sure what type mine is, there are well over 100 types. The burning is much less severe as is the pain. The thing that never improved is numbness and sensory loss. What bothers me most is the feeling my feet and lower legs feel 10 times bigger than they are.
My issues started on the bottom of my feet and eventually progressed just past my waist.
My Electrodiagnostic studies only showed mild to moderate polyneuropathy damage but the Neurologist said Symptomatology is not always consistent with test results so mild results may cause severe symptoms. So hope hangs eternal that things may improve.
Best of luck,
Jake

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Hi Leonard
Your course of illness is very interesting.
I have small fiber PN, present for several years, but much worse for 2 years, since i was also diagnosed with lymphoma. My docs can’t make a connection between the 2, so my PN is of unknown etiology. I have had a positive skin biopsy.
My symptoms are very similar to yours.
Have u had a skin biopsy? What do u think accounts for the improvement in your pain? Did u use any special tricks when you felt the burning?

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@jeffrapp

Hi Leonard
Your course of illness is very interesting.
I have small fiber PN, present for several years, but much worse for 2 years, since i was also diagnosed with lymphoma. My docs can’t make a connection between the 2, so my PN is of unknown etiology. I have had a positive skin biopsy.
My symptoms are very similar to yours.
Have u had a skin biopsy? What do u think accounts for the improvement in your pain? Did u use any special tricks when you felt the burning?

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@jeffrapp
Hi there Jeff,
I’ve had Neuropathy about 42 years. It’s believed to have been caused by long term seizure medication usage.
My theory is that the Neuropathy improved after my lousy eating habits got better. I totally avoided any foods that had any semblance of nutrition associated with them. I use to eat my meals at the bakery. I was a nutrition nightmare. The way I ate I had to have Vitamin deficiencies which has a direct link to Neuropathy.
I’m sorry to hear you had cancer. I can’t imagine how frightening hearing that diagnosis would be. I have read a lot about cancer and anti-cancer treatments as causes of Neuropathy. According to the Lymphoma and
Leukemia Society 10-20
percent of people with cancer develops Neuropathy.
Were you experiencing any type of neuropathic symptoms prior to your Cancer diagnosis?
I have never had a skin biopsy, probably because my nerve conduction study and EMG showed plenty of evidence of nerve damage. Am I correct in assuming Small Fiber Neuropathy doesn’t show up during EMG & Nerve Conduction studies?
I’m clumsy, do you have that problem? I have trouble walking straight too. When I walk down the street I veer out in the street or on a lawn. I don’t know if it’s Neuropathy related or if I’m just naturally uncoordinated. I’m afraid it’s probably the latter. I never used any type of topical products for pain or burning. I used Fentanyl for pain which helped some.
I hope your symptoms improve,
Health & happiness,
Jake

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@jakedduck1

@jeffrapp
Hi there Jeff,
I’ve had Neuropathy about 42 years. It’s believed to have been caused by long term seizure medication usage.
My theory is that the Neuropathy improved after my lousy eating habits got better. I totally avoided any foods that had any semblance of nutrition associated with them. I use to eat my meals at the bakery. I was a nutrition nightmare. The way I ate I had to have Vitamin deficiencies which has a direct link to Neuropathy.
I’m sorry to hear you had cancer. I can’t imagine how frightening hearing that diagnosis would be. I have read a lot about cancer and anti-cancer treatments as causes of Neuropathy. According to the Lymphoma and
Leukemia Society 10-20
percent of people with cancer develops Neuropathy.
Were you experiencing any type of neuropathic symptoms prior to your Cancer diagnosis?
I have never had a skin biopsy, probably because my nerve conduction study and EMG showed plenty of evidence of nerve damage. Am I correct in assuming Small Fiber Neuropathy doesn’t show up during EMG & Nerve Conduction studies?
I’m clumsy, do you have that problem? I have trouble walking straight too. When I walk down the street I veer out in the street or on a lawn. I don’t know if it’s Neuropathy related or if I’m just naturally uncoordinated. I’m afraid it’s probably the latter. I never used any type of topical products for pain or burning. I used Fentanyl for pain which helped some.
I hope your symptoms improve,
Health & happiness,
Jake

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@jakedduck1 There's a whole constellation of symptoms that can be attributed to neuropathy. The things you mention could quite possibly have neuropathy involvement. I have a list of things that could have neuropathy involvement, but the doctors can't say for sure.

I suppose that the menu my wife produces is slowing down my progress. She enjoys cooking, and we (almost) always have well balanced meals. Her mother taught her well.

Jim

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It wasn't until I was diagnosed with Small Fiber Poly Neuropathy that I learned of the disease. Never heard of it prior nor did anyone I know. Setting myself aside, I also learned that cancer survivors are often left with this not so pleasant souvenir. Of course surving cancer is a feat in and of itself but I was dumb founded to learn that patients who have triumphed can be left in such misery. Call me naive but, it really pisses me off! Especially when I sit in the Apheresis unit for my lidocaine inusions and observe the sweet, innocent children fighting for their lives. The thought that IF they conquer cancer they may be left with debiliating nerve damage for the rest of their young lives breaks my heart. I dont mean to be downer but it is reality. To all of you in this forum with neuropathy induced by cancer treatments or any other treatments used to help existing medical problems prior…I am sorry for your unpredictable, unfair and unfortunate outcome. We wonder why these things happen and surely it can consume ones soul however, the fact that a forum such as this exists is an incredible dose of medicine that can not cause more symptoms, repercussions and damage. Keep the faith everyone, keep fighting and keep encouraging each other. Feeling thankful today.
Rachel

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@rwinney

It wasn't until I was diagnosed with Small Fiber Poly Neuropathy that I learned of the disease. Never heard of it prior nor did anyone I know. Setting myself aside, I also learned that cancer survivors are often left with this not so pleasant souvenir. Of course surving cancer is a feat in and of itself but I was dumb founded to learn that patients who have triumphed can be left in such misery. Call me naive but, it really pisses me off! Especially when I sit in the Apheresis unit for my lidocaine inusions and observe the sweet, innocent children fighting for their lives. The thought that IF they conquer cancer they may be left with debiliating nerve damage for the rest of their young lives breaks my heart. I dont mean to be downer but it is reality. To all of you in this forum with neuropathy induced by cancer treatments or any other treatments used to help existing medical problems prior…I am sorry for your unpredictable, unfair and unfortunate outcome. We wonder why these things happen and surely it can consume ones soul however, the fact that a forum such as this exists is an incredible dose of medicine that can not cause more symptoms, repercussions and damage. Keep the faith everyone, keep fighting and keep encouraging each other. Feeling thankful today.
Rachel

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Thanks for an uplifting post to stay positive and keep fighting. I have to remind myself that I too will have good days and bad. I try to focus and remember the good days when my day is coming to a close.
I also tell myself – Take it one day at a time so as to not get overwhelmed with our medical issues.
So to all that are fighting- keep up the good fight and fight it one day at a time. Good luck to all.

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Thanks that was very uplifting! Iv had a very bad day today! The pain has been very unbearable! If tears could heal me ,is be prefect again! I even thought of the perfect pain free soulation, and that would to blow my head off, as bad as thgere sounds! But I got in my car and drove to the lake and prayed, and God said, NO! So I came back home to my husband of 30 yrs and my 9yr old grandson! They give me the strength to go another day! So think about yr loved ones, (even though they don't get the pain yr in, and pray,pray,pray,and keep the faith! Maybe tomorrow I'll feel better!,pray for me!

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