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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Jan 8 7:56am | Replies (6210)

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@adrianna143

Hello
I'm new to the Group. I was recently dignosed with
peripheral neuropathy. While at the doctors for my test results and told I have peripheral neuropathy,
I left my doctors office last week realizing she said absolutely nothing to me about my new dignose? ( I don't believe she understands how bad my life has become)
I have no idea what kind of doctor to see, what this is caused from, will it ever get better and so many more questions left unanswered.
It's gotten so bad that I can only lay on my back at night to sleep because trying to sleep on either side causes so much hip pain that's become unbearable. My biggest worry is, when I wake-up because it's become a point that I'm unable to walk.
Can anyone help me out with some
Ideas of a specialist I should see, what others may be going through or any helpful ideas?
I'm really worried that one day I'll be unable to walk. I started myself on a high dose of vitamin B12 and a calcium vitamin. Anyone's input would be so welcomed.
Thank you
All so much
Ruth From Florida

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Replies to "Hello I'm new to the Group. I was recently dignosed with peripheral neuropathy. While at the..."

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

Hi Ruth @adrianna143, I would like to add my welcome to Connect along with @rwinney and other members. You are doing a good thing learning as much as you can about your health condition. I have idiopathic small fiber peripheral neuropathy but I only have numbness. The neurologist who diagnosed me thought it may be heredity in my case. He had no treatment suggestions since they have nothing that works for numbness. I started doing my own research and trying to learn as much as I can to help my condition.
I do take supplements which help me and seems to have slowed or stopped the progression of the neuropathy. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also have trouble sleeping on my right side due to hip pain but I don't think mine is related to neuropathy. I think mine is related to arthritis joint pain. I'm thinking about getting an adjustable bed that has a zero gravity setting which make it easy for sleeping - slightly elevates the head and the legs but you can also manually control the leg and head positions.

Did your doctors offer any suggestions?

Hello Ruth from Florida: So sorry for all the pain you are suffering.
I recently purchased a Cold Laser (12 days ago from Amazon for $129) and have been using morning and night. It has pretty much stopped the pain in my feet. I had also started an over the counter magnesium tablet daily. Maybe it is the combination - but I will keep doing both as long as it is working. It is nice to be able to sleep again.
As a side note to this the numbness in my feet still persist.
Wish you well and hope you can get some relief.
Mike from Surprise AZ