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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: 9 hours ago | Replies (552)Comment receiving replies
Very interesting thread! I would love getting input as I have no diagnosis. I was prediabetic for about 7 years before becoming diabetic. I lost about 10 pounds (now at 123#) and have given up all dessert and, with an A1C of 5.4, I am no longer diabetic or even prediabetic. Overall, I eat a very healthy diet of veggies, protein and fruit, all in small portions. About three years ago my right leg started having really strange things going on, with the incidents lasting only seconds. By incidents I mean the sensations of being punched, being stabbed with a needle, being pinched, being burned and the like. These happen throughout my left leg only. Otherwise, I also have a small amount of tingling in my feet and legs, but it isn't bothersome. It's the other "stuff" in my right leg that is problematic as it can prevent me from sleeping, and can startle me awake in the middle of the night. I had read that it might go away in a year so I did nothing. Then I read there isn't anything that can be done anyway. I also have a torn meniscus and arthritis in my knee of the same leg but the ortho doc believes it isn't enough to do surgery. Gabapentin did nothing for the sleep/leg pains. Now I just take a single Aleve pill in the evening but it isn't doing much, if anything. Any thoughts on what might be the problem? Any reason to go to the doctor? Would massage or acupuncture help? Any thoughts on whether this might get worse? Of course, I'm still hoping one day it just goes away! Wishful thinking? Thank you for your consideration.
Replies to "Very interesting thread! I would love getting input as I have no diagnosis. I was prediabetic..."
Good afternoon @trieste, and @johnbishop. I am Chris and John and I work well together. See......he doesn’t have pain. I do........and mine started in my right leg and was determined to be another phase of SFN, small fiber neuropathy. It is interesting that the fiery, burny pain just came every morning about 5:00 a.m. Just like you....that is also the leg with a meniscus tear and some arthritis. At first I did nothing except endure the morning wake up calls and increase the gabapentin.
That was four years ago. At this point, my right leg has become harmless because of MFR. My therapist works on that leg every week so I can keep it under control.
John, would you mind sending @trieste the MFR links. I am on a no-can-do device.
May you both have a joyful day.
Chris
PS.....I love your name @trieste, it is elegant.
Yeah, I don't know that there are any easy answers, but from what I've heard and read, it is helpful to keep digging. Sometimes acupuncture and massage do seem to help people. And sometimes, according to my neurologist anyway, these things can fade or go away. You never know. Gabapentin did not help me, but my understanding is that there are some other meds worth trying. But meds also have side effects. I have found some help from an app called curable.com dealing with chronic pain. One of the images that I resort to is this: pain is like a merry go round moving fast. Remember that when you were a kid? Sometimes you'd be on the merry go round and other times, one of those pushing it. Fear/anxiety/focusing on that pain is like a person pushing the merry go round. The more you push, the worse the pain gets. But it's so hard not to keep thinking about it, keep asking what's next, will it get worse, etc. I'm working on not shoving that merry go round quite so much.
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@trieste, If I read your post correctly it's your right light that has the pain and sensations that prevent you from sleeping and wake you up in the middle of the night. I'm not sure if this fits your symptoms but you may want to look at the following discussion or Restless Leg Syndrome.
Is this RLS (restless leg syndrome): https://connect.mayoclinic.org/discussion/is-this-rls-restless-leg-syndrome/
Also, you can find more information here:
- Restless Leg Sydrome Foundation: https://www.rls.org/understanding-rls/symptoms-diagnosis
- Mayo Clinic page on Restless Leg Syndrome: https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/basics/symptoms/con-20031101