Living with Neuropathy - Welcome to the group

@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

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!

Thank you and wish me luck

@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

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.

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

@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?

@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

@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

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?