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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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Thank you so much
I hope you will be helped by it. It really has helped me significantly. Noticed in your entries that you had been very active, running and biking. For some time, I stopped skiing and limited my walking and biking, but I have discovered that it doesn't actually hurt more when I do these things. Just scary to try. Anyway, I'm back to doing all of it and am no worse for it at least. I want to encourage you. It's such a difficult road, but there is hope for us. Hang in there!
@nrivers what helped you the most
So I'd like to describe what happened I'm 45 and five years ago I started to notice very light tingling in my fingers and toes. However if I focussed on it could be felt everywhere. Would come and go some days would be very light pain. Don't remember when but it's all the time on the tingling. Never stops. Had MRI and various neurological tests. Doctor said everything checked out could not find a reason for what o felt.
Fast forward five years. Have had arm pain along with the tingling. Last month my upper back started hurting. Feels more burning below my shoulders. Doctor thinks it's muscle pain. But I'm not sure. This new issue also comes and goes. Some days doesn't bother me at all. I don't eat or do anything different when it's good or bad. Any ideas?
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1 ReactionHello @rubicon and welcome to Mayo Clinic Connect. I am sure this has been puzzling for you. You feel the tingling sensation you have been experiencing in the last five years is connected to the arm pain and possibly the upper back and shoulder pain? Do they all start in at the same time or how do you feel they are interconnected?
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1 ReactionHello @rubicon, I would like to add my welcome to Connect along with @amandjro and other members. You mentioned the tingling all over never stops and the doctors could not find a reason. Did the doctors mention paresthesia? There is another discussion that mentions tingling and other symptoms for paresthesia that you might find helpful.
- Weakness, tingling, hand coordination, paresthesia: https://connect.mayoclinic.org/discussion/weakness-tingling-hand-coordination-paresthesia/
Do you recall having any kind of trauma or accident prior to when your symptoms started that could be a cause?
The same thing happens to all of us. We got better medical help 50 years age.
I’ve been a neuropathy victim for quite a few years. It’s to the point I’m not sure how much longer I can handle the pain. I first noticed it with my left foot. I told my doctor it felt like the numbness from scar tissue. Like from stitches. My doctor didn’t provide any feed back. Many years later it’s progressively gotten worse. I can’t walk very far with out my calves becoming so painful I need to stop and wait 5 or so minutes to rejuvenate them. The numbness is half way up each calf and well into my fingers on both hands. The pain becomes so bad at work I can’t focus or concentrate. The bathroom is so far away from my office I wait until the last minute. I’m embarrassed and my balance is all over the place. I just want to talk with someone that understands. Lonnie
Good evening @lpiper. Welcome to Connect. It appears that you have been challenged by neuropathy for quite some time. And I do agree with you, it does progress in some of the worst ways. I have a request. Can you remember the progression of pain in different parts of your body. Before your calf involvement did you have sharp flashes of pain in your legs at dawn...did your abdomen feel like it was on fire at times....sort of like one of the glass fireplaces might feel.
Would you be able to share your current medication and treatment routine? What have you found most effective?
How is your energy level? Do you have bouts of fatigue at work? Have you been able to exercise or just take a walk?
We have some very creative members here who have explored options and shared their stories. We would love to hear yours so we know what foot to start on.
May you be free of suffering and the causes of suffering.
Chris
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2 ReactionsI had a frustrating form of Guillain Barré Syndrome. I couldn't dress or comb my hair, I lost my strength. I felt into bed. I did not receive proper medical attention and I had sequelae, neuropathic pain is one of them.
In addition to a Multiglandular Syndrome, adrenal, thyroid, pineal classified.
Actually I do have a treatment with Carbamazepine,B Complex, Folic acid, D3.
But the grade and extension of my pain has being growing up. It covers literaly all my body. Since feet to head including face.
While Writing this message, I am standing on foot, to be seat is very painful. To bed too.
I studied Claíseach, dance and chant. I lost two scholarships.