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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 1 day ago | Replies (6021)

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@contentandwell

@lioness I had been making "Golden Milk" a while ago and I am not sure if it did help with anything but it was a nice evening beverage. If I want to try it again I will need to check with my transplant team to see if turmeric is OK for me.

@mayofeb2020 I have always found cortisone shots to be very helpful if done by the right doctor. It was pretty random with doctors up here (southern NH) so I checked out some doctors in Boston and landed on one who hit the spot every time. Often they don't get it to the exact right spot and then it's no help. I was heavier when I found the doctor in Boston and the first thing he asked me was if the doctors had used a longer needle! I didn't think so, and he said that with patients "with extra padding" a longer needle was needed to get to the spot and he sure was right. I went to him numerous times and he always got it right, even after I lost weight and had less extra padding. Also, you could try going to a physiatrist. They do guided cortisone shots to ensure they do hit it right.
I would like to have a shot but at this point, I have fairly advanced osteoporosis which is primarily from having to take prednisone. I fear that cortisone, also being a steroid, could worsen the bones in my hip. I need to talk to my endocrinologist about that. I have a zoom appointment coming up this week.
I also had PT for my bursitis but did not find that to help much.

@faithwalker007 I am entering into this discussion quite late but I just want to express to you how much your message struck me. We take our health for granted so much and then hear about someone suffering every day. Entering this late, I am not aware of what problems you and your husband have but my hope for you is that you are able to somehow get some relief. I presume you have been to great doctors for help. Never give up. Hugs.
JK

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Replies to "@lioness I had been making "Golden Milk" a while ago and I am not sure if..."

I wish I could say we have been to great doctors for help. Unfortunately, Wyoming has very few of those. My husband still has no true diagnosis other than traumatic arthritis. I believe he has EDS and/or RA. His doctor (now retired) refused to pursue or refer any avenue.
My pain specialist is rather ignorant on how to treat or manage CRPS type 2, especially with my complicating diagnoses. I’m the guiding light on care and I pray every day that my faculties are with me to not screw something up. Pain has a way of blurring lines and I’m not exactly the expert. That’s why I’m going to them in the FIRST PLACE.
I appreciate your words and heartfelt thoughts. Our lives are made complete by much more than what our bodies dish out. That’s why keeps us alive and joyful. And that is what we call success.