Living with Neuropathy - Welcome to the group

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

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?

I have soreness on both sides so I cannot sleep except in recliner. The problem is inflammation which really hurts. I find green tea and turmeric helps.

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

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?

Hi all. I purchased a Sleep Number bed 2 years ago for pain reasons. It was quite costly however worth It overall. My husband loves the zero gravity setting as @johnbishop referred to. I am all over the map with my settings. Unfortunately, my neuropathy has a mind of its own and every day may be different, resulting in different sleep needs. Sleep Number is definitely worth a try if in the budget.

@rwinney and @johnbishop, Can either of you explain what "zero gravity" means in terms of a sleep number bed?

Hi Teresa @hopeful33250 @rwinney -- Here's a description of the zero gravity setting.

The position relieves the pressures of gravity from the body by distributing the body's weight evenly to permit for the right amount of needed support. Zero Gravity in the adjustable bed frame allows for the legs and head to be raised at just the right angle to reduce back pressure and increase circulation.

I think the Sleep Number is a good option but I'm looking at a Ghostbed adjustable frame and mattress since I can get two XL single frames together (both adjustable individually) for a lot less money than the Sleep Number. We had a Sleep Number bed when they first came out and I loved it. Over the years it started losing air and we got a Ghostbed mattress and used the Sleep number frame. I was probably too large for the bed ☺ -- 300+ pounder on one side of the bed was me. Fortunately I'm no longer at that weight and eating much healthier.

Here's more information on how the zero gravity helps: https://www.ghostbed.com/education/benefits-of-zero-gravity-adjustable-bed-base/

Said it before and I'll say it again...You are THE MAN John Bishop!!!!