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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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I never had any issues until I turned 59. Now I have pain anywhere my skin touches something. I stand most of the day. It is very difficult. I had tests and nothing wrong with nerves etc.
Gosh you need some answers. Have you had a EMG test done to determine if you do have PN or something else,
Yes did an EMG, nerve conduction, MRI on my brain. My neurologist just asks me what medecine I want. Don’t really want any but I’m going have to do something. I’m taking Cymbalta. Don’t think it is doing anything. Need to find someone that can help.
Yes I agree. Not many answers to our condition. I too take Cymbalta, 30 mg once a day plus a total of 300 mg of Lyrica, not sure if it’s helping but also afraid to stop. I have had most procedures done to me. It was confirmed in August it’s PN. From where nobody knows. My doctors suspect maybe Covid or the vaccine itself.
@pitepalten, I'm sorry to hear you haven't found anything yet that helps with your burning pain. I was reading your earlier posts again and it does sound similar to cutaneous dysesthesia. Here is some information I found that I think might be describing the type of pain you are feeling.
"Cutaneous dysesthesia is characterized by a feeling of discomfort when your skin is touched. The symptoms, which can range from mild tingling to ..." --- Everything You Need to Know About Dysesthesia - Healthline: https://www.healthline.com/health/dysesthesia
Was your neurologist able to provide a specific diagnosis?
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1 ReactionNo. He hasn’t told me. They don’t think it is MS. they strange thing it is everywhere where pressure is put on my body. Luckily it’s ok under my feet so standing is best. Gets worse as the day goes. Best a few hours in the morning:)
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1 ReactionGood afternoon @pitepalten, Yes, I agree. with you. You need some help. Cymbalta--duloxetine is my go to for anxiety control. Anxiety creates pain which creates more anxiety.......which.....and on and on. My clinician reworked my Cymbalta dosage (increased) and changed the time to take it...to morning. So, I now take 90 mg and my day starts on a much better pain status.
I also use different dosages of medical cannabis a couple of tmes throughout the day and right before bed. I then add 600mg of gabapentin at bedtime to shut down the tingle tangles.
Let me know if you would like more information. I find that working in an environment of shared decision making with my clinician really helps hit the target a bit better.
May you be free of suffering and the causes of suffering.
Chris
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2 Reactions@pitepalten I too will feel immediately nauseous if my arms are touched. They are extremely hypersensitive. I have to keep them compressed 24/7 in order to function. I am so sorry you are dealing with this ... I pray in your situation it can one day be reversed, and even moreso that you find answers. Best wishes to you
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1 ReactionThanks for all the comments and encouragement. I never had anything wrong with me for 60 years so this is an adjustment. Doing all these test they also want to do a heart cath to check for blockage. I’m going back to my general doctor Tuesday. I want the to look at a rash on my neck that have been there for 3 weeks. At first I thought shingles but it doesn’t hurt unless I touch it. Hope everyone has a great Christmas!
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2 Reactions@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
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