Neuropathy Feet and legs

In reply to @oliviaflickamay: As Amlodipine is a blood pressure medication and must be taken daily what alternative are you using now if I may ask. Also please clarify how soon did you notice a difference after stopping Amlodipine?

I used a pill cutter and over many many months of tiny removals ended at zero useage. I take nothing now at 87 years of age except albuterol and Flovent for moderate asthma. I’m satisfied with my bp in the 120-128 over 70’s daily averages. Apparently I am an outlier of Cochran’s multivariate analyses of no connection between peripheral neuropathy and Amlodipine.

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You need to change your life style to suit your needs. I’m retired so my main job is staying pain free or as much as I’m able to and nothing else. If I’m going to do something I know will cause me pain afterwards I prepaid for it and treat it appropriately. Sounds like you’re still trying to live your old life style, which has since changed. Sorry but you have to play with the deck you’ve been handed.

I am 18 months post a vertebral artery dissection resulting in a stroke. I've recovered extremely well from the stroke, but have developed burning pain in my legs and bottoms of my feet bilaterally, (all other symptoms are with my affected side only). I've been to an expert neurologist at UCHealth in Denver and just met with one at UCSF neuro rehab. (I live in rural Montana, where there is no longer a neurologist.)

Both experts could not explain my symptoms as a result of the stroke, and presentation is not aligned with a diagnosis of neuropathy. Denver doctor wanted to rule out other neural causes and I've had extensive blood work which rules out toxins, MM, leukemia, etc. I've been up and down on gabapentin and it's been recommended to take cymbalta or similar medication.

The neurologist at UCSF has scheduled me to return for an EMG and told me it would definitively rule out neuropathy. (He also wants a spinal MRI done to rule out tumor.) My local physiatrist told me that small fiber neuropathy can not be ruled out by an EMG. (As I've read through the Mayo posts here, she appears to be correct.)

Everything I've read indicates that even if a diagnosis of SFN is made (guessing the punch biopsy is next), there is no treatment other than the aforementioned recommendation of gabapentin or Lyrica, and a low-dose antidepressant.

I am seriously considering cancelling the EMG and MRI in December. I know it is the physician's job to leave no stone unturned in zeroing in on a diagnosis, but if the results do not point to a different treatment, I am reluctant to go down this rabbit hole. I am 75 years old, and want to focus on living the best life I can, enjoying everything possible. I have improved so much since my stroke (I work very hard at it!) and can accept that my damaged brain is sending out strange signals, and that maybe the power of neuroplasticity will continue to re-wire and my neuropathy symptoms will lessen over time.

I would love it if any of you would share your thoughts, as I think about this decision of testing. Thanks! Rebecca

People say "You need to change your lifestyle", but nobody says what to change or how to change it. And different people mean different things when they say "lifestyle." Some mean physical activity, some mean diet, and some mean habits like smoking, drinking, drugs, etc. So "change your lifestyle", while it may be good advice, is totally ambiguous.

I am so sorry you feel this way. It is different for each of us and I think you’ll have difficulty finding someone else’s “life style” that fits you. What I meant was creating your “life style” that suits your physical and emotional needs due to your illness. As an example I do all our meal planning and prep and any upper body work like countertop preparation causes me grief. Do I divide it up during my day so not everything is prepared at one time. This way I get to lay down and rest my back between sessions. I know I need to walk 2 miles daily and I make that a priority for my day. It’s all about me now after a career in nursing taking care of others. This my idea of My Life Style for my pain control.

Does anyone else have this problem, I have neuropathy in my feet and legs, but it is worse in my right foot and leg. Its almost like I have two bodies and they dont know each other. I use Theroworx cream, which helps some, it seems anything with higher grade menthol works better. The highest cream menthol has 16% but I dont know if you can find higher.

I am so sorry you feel this way. It is different for each of us and I think you’ll have difficulty finding someone else’s “life style” that fits you. What I meant was creating your “life style” that suits your physical and emotional needs due to your illness. As an example I do all our meal planning and prep and any upper body work like countertop preparation causes me grief. Do I divide it up during my day so not everything is prepared at one time. This way I get to lay down and rest my back between sessions. I know I need to walk 2 miles daily and I make that a priority for my day. It’s all about me now after a career in nursing taking care of others. This my idea of My Life Style for my pain control.

Thank you for your response. I've been dealing with neuropathy for 20+ years, and of course I've had to make adjustments. Mine isn't too bad during the day as long as I'm vertical. I can only sleep for an hour or two at a time, so I try to nap in the recliner during the day. I don't waste my time wishing things were different. I'm a pragmatist and accept things as they are. At age 85, I'm still able to drive, which is a good thing because hubby is in a nursing home that's a two and a half hour drive from here.
Thanks again for your clarification.