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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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@mamamarch good for you! I see ladies your age and older at my Y in biking class, Body Pump, silver sneakers, doing things even much younger guys can’t do. Always inspiring.
@malmor
I echo your sentiments about the concierge doctor. I chose mine because he is a rheumatologist but like you, I am paying big bucks and still have to connect the dots to get answers to my health questions. It is so disappointing. Surely, our health care system is in peril.
@jum13, as a former physical education instructor I have been lucky enough to maintain a healthy body and attitude toward exercise. I am far from being a "Pump It Up" type of gal preferring consistency and moderation over intensity. In fact, I often wonder if it is the healthier route!
When you mentioned your 20k a day, I immediately thought, too much! Have you tried a more moderate routine with less time spent on one activity and incorporating other forms of movement?
I do a morning routine of leg and hip stretches with some foot massage before I even get out of bed. Just a few minutes, but very helpful for the neuropathy issues. My exercises classes (at a senior center) cover a wide range of low to moderate aerobic movement, lots of stretching, some strength work and most importantly for me, balance.
My choices are based on my goals. I do what makes me feel good and leaves me with a desire to return. I do not believe that intensity and worse, pain will ever inspire me to continue showing up no matter how much "better" my body looks or feels later on. So, yes, I could do more in an effort to improve the nerve damage in my legs. But, I'd rather be enjoying my life as I patiently wait for the slower progress.
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3 Reactions@57phil has anyone had a steroid shot for their neuropathy?
@blowerk1216 Not for my neuropathy but have had a couple in the past for hip and knee joints.
@johnbishop thanks
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1 ReactionI am trying to do some research for the cause of my idiopathic Neuropothy. Has anyone had a bunionectomy done and then started to experience Neuropothy? I am finding more and more of this but Podiatrists and Neurologists deny it but more and more people experiencing this same thing.
@jimminnesota - Here's a search of Connect for members who have mentioned having a bunionectomy in comments in different support groups if you want to scan through them while you wait for members to respond - https://connect.mayoclinic.org/search/comments/.
@jimminnesota
Surgeries come with risks. I had a shin shave biopsy to remove a lesion--which turned out to be benign and now I am dealing with some nerve pain and inflammation from that procedure. The dermatologist said the pain I was having was not due to anything he had done but I disagree. Before that procedure, I had no problems and my neuropathy caused by celiac disease was being managed. Now it is a new ball game and I have to find ways to get out of pain. I will only try holistic means and my trust in doctors has gone way down.
@arcuri24
Thank you for your response. I am finding more and more people who have experienced Neuropothy froma bunionecomy. Podiatrists will not admit it was their fault....in fear of being sued. the risks were not explained fully either.