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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, Ray. I hope for a speedy recovery from sepsis that is very serious. I think that we also must manage our expectations. It is unrealistic that we will get back to how we could walk, etc. before PN. Just being mobile and out of a wheelchair is huge and should be congratulated for your hard work. Thanks again. Susan
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1 ReactionI’ve had neuropathy in my legs and it spread up to my groin. The oddest is from feet to legs. Also hammer-toe on each
Of my ten digits. Needless to say, my balance has been shot. I’m ok walking short distances but standing in one place is all but impossible w/o a cane or something to lean on.
Also arthritis throughout with end stage in bothshoulders deterioration.
I keep on pushing. I keep trying.
Mornings are best. The RX prescribed is Gabapentin but I can’t take that hangover.
The neuropathy pain is not so bad.
Any suggestions I can pass to my docs is welcome.
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1 Reaction@sdiane ~
Ditto to what @ray666 said about the pain involved in the nerve study testing. My experience was that it was not a long, drawn-out endurance of pain but rather a series of annoying "sting-like" responses to some kind of stimulus targeting particular nerves or locations of nerves. I'm no fan of pain, but I wouldn't hesitate to repeat the procedure if it sheds light on the problem. Come to think of it, I did have repeat testing, but this time on the upper limbs rather than lower which were the first to be tested. You can do this!! ~ Barb
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3 ReactionsI can relate. Undiagnosed burning pain in my hands and feet. Gabapentin Lyrica all sorts of drugs. Not good. Didn't help. The mindset is key. Being calm. Getting your rest. Nutrition overall. Check what you eat each day. Inflammation is bad for this. Start cleaning it up. Good luck to you.
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2 ReactionsHi, I'm new to this site and am hopeful to have the support that is so important when suffering with Peripheral Neuropathy. I started having pain in my metatarsal in both feet, likely from wearing high heels for years as a Dental Sales Rep. When the pins & needles & numbness started 14yrs ago, my Rheumatologist told me to stop wearing them, so I did. But the constant pins & needles and numbness only got worse. It started with a feeling of phantom socks or something on the bottom of my feet, when there was nothing on my feet! After 14yrs it has continued now up my legs, to just below my knees. There is NO pain at all, just numbness & pins/needles. It has been constant, 24/7 not one second of relief in this many years. I have tried every modality known to man, without success. Tried many supplements and my new Dr. insisted that I try PreGabalin again, which my old Dr. (retired) had me on, with no success. I am so worried as I have a very hard time with walking as I can't feel where I'm placing my foot and cycling is out, as it makes the pins & needles & numbness even worse! MRI shows I have a comressed spine L3 L4 L5 and I am not ready for back surgury, if that even would help with the numbness. Anyone out there have the same issues without pain & have you found any relief at all? Any help would be so appricated, I have continued to try and find answers, but to no avail. Thank you for any help you can lend my way......
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1 ReactionI empathize with your plight. I have neuropathy--perhaps related to my celiac condition or else due to medicines I took for a sinus infection this past winter. Like you, I do not have pain--just numbness and tingling. Recently, I was prescribed amoxicillin for a dental extraction and tried to take it but could not--the tingling increased so my dentist said I could stop it--now using salt water rinses instead--so far so good. Sometimes I think PN is a sensitivity condition more than anything else. And like you, I am dealing with spinal issues--could have been caused by muscle wasting which can be a component of neurological illness. I am in PT and may try acupuncture soon. I have not had an MRI as yet. Back pain is more annoying than PN. No giving up allowed! Hope you get some answers soon.
I have the same but I’ve only had it for 6 years, it’s progressing very slowly, now causing stiffness in my ankles. My EMG shows L5 S1 Radiculopathy but I didn’t bother getting an MRI as I had read only a small number of people benefit from compression release and sometimes it makes things worse.