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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Nov 23 5:30pm | Replies (573)

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@notgivingup17

Rachel, I'm so sadden by what you are going though. I'm having the same kind of pain only it started in my left foot and spread upward. Sometimes I feel my face getting sensitive and my tongue is burning. I never thought something like this could happen to me at my age of 57 when it all started, I was in good health. I've seen numerous doctors and had several test, to make a long story short. The rheumatologist ruled out Sjogren's and fibromyalgia. I even had back surgery for a herniated disc that didn't help. I will be going in for my second skin biopsy the 1st one came back negative a year ago. I'm taking 50mg of Lyrica 2 x daily and I started LDN 1.5mg now I moved up to 2mg.The LDN save my sanity so far and I believe in God that has saved my life literally.
I pray that the Mayo Pain Rehab give you some relief. Please share an update for us.

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Replies to "Rachel, I'm so sadden by what you are going though. I'm having the same kind of..."

@notgivingup17 Hello. I like your screen name! Not giving up says a lot about you. I'm glad LDN has brought you some relief. Its unfortunate your back surgery did not work. That is the downfall sometimes when we scramble for relief.

Thank you for responding to a past post of mine. SInce that post, a lot has changed for the better. I began researching the complexity of my issues and came up with 2 answers.

1. Chemicals
2. Central Sensitization Syndrome (CSS)

I learned opiates were antagonizing my pain by creating more which is called hyperalgesia, and I 100% lined up with CSS which is an umbrella to my multiple issues including neuropathy. I was able to track back to childhood and all of the symptoms I had been living with became clear, especially once they upregulated to such a severity.

Long story short, yes, I went to Mayo Pain Rehab Center over a year ago. It was life changing and taught me how to depend on myself through physical, emotional and behavioral plans of action. I removed all chemicals while there for 3 weeks. I now have the tools and self awareness to manage my chronic pain and life is more manageable.

It does indeed come as a shock when our bodies change, no matter the age, but we can use our brain (where pain stems from) and retrain for a better life quality.

I am rooting for you in your journey to also find tools to help you with with chronic pain and symptoms. I'm including a video by Dr. Sletten from Mayo Pain Rehab Center about Central Sensitization Syndrome. It is very educational for anyone who has chronic issues. Also, here is a link for Mayo's Pain Rehab Center which gives an idea of how to combat chronic pain.

Do you mind getting back to me with your thoughts on the video?
When is your second skin biopsy being done?
https://youtu.be/8defN4iIbho
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691