Seeking support, new to this nightmare

Thank you for your reply and it disheartens me to read your journey. But I have a question. I have a MRI mode on my SCS that is to be used in the event an MRI is needed. Do you not have that on your device. Secondly, hasn't any doctor recommended a CT Scan?
God bless you.
Charles

The skin, not the direct nerve, biopsy is the most helpful in sorting out which type of neuropathy you have. Treatment options remain scarce but there are some promising ones in the pipeline.

Does anyone with neuropathy have blue/ purple toes that does not have raynauds?

Get an EMG/nerve conduction test on your legs by a neurologist. ( ask for a neuromuscular neurologist) Also, have the neurologist do a small fiber neuropathy biopsy.

I have CIDP, with burning pain in my feet and ankles. My feet are always cold and often red or purple, and my fingertips are often purple.

A few things that help me: soaking my feet in cool tap water for 10 or 15 minutes, Lidocaine cream 5% numbs my feet for a couple of hours, stroking my legs VERY lightly in various places produces a pleasant effect in my feet, a blanket lifter so the bedding doesn't touch my feet, resting my feet on a soft pillow. And then there are the mind games. I focus on a part of my body that doesn't hurt, or I focus on the pain and break it down by sensation. I notice the burning, the electrical tingling, the pulsing of my heart rate. Usually as I do that, the most painful sensation becomes less noticable.

Sitting and lying down are the quickest pain triggers. Of course, that's all I can do these days. Generally walking is less painful, up to around 15 minutes.

It's crazy late and I should try again to go to sleep. Keep us posted as you get more information about the cause of your symptoms.

Jim

Well, apparently I have adrenal insufficiency. I am waiting on new Lyme tests, brain mri and further hormonal and thyroid tests. Nights are most difficult 😢Staying optimistic and grateful not always easy!

I do when I stand too long believe it or not it’s part of neuropathy. It’s read this website
www. texasfootdoctor.org

Hopefully, that will help explain it.
Dr. Anne Oaklander’s YouTube video also covers it if you google her.

Read what I posted about labs. There is a list of labs Dr. Anne Oaklander had me do before I went to see her. That might help. If referred to neurologist make sure they are neuromuscular neurology. They treat neuropathy and the muscle spasms that go with it.

Thank you. I am perplexed by the changing colors of my feet. Blood flow and pulses tested and are very good. I do not think it is strict Raynauds. Something else is happening. I will look at the labs you speak of.

This is caused by the neuropathy
https://comprehensivepain.com/blog/can-nerve-damage-cause-discoloration-of-the-skin-and-other-strange-reactions#:~:text=Changes%20in%20color%20are%20usually,from%20person%2Dto%2Dperson.
https://www.painscale.com/article/skin-reactions-to-nerve-pain-conditions#:~:text=Skin%20reactions%20caused%20by%20nerve,%2C%20swelling%2C%20rashes%2C%20etc.