Living with Neuropathy - Welcome to the group

My symptoms started about 8 years ago with buttocks numbness and leg stiffness. When I walked it felt like I could not flex my legs or feet. In the ensuing years, I have hot feet and cold feet, and feet that feel that they are hot and cold but are not. (Copious amounts of B12 and wonderful microwaveable booties mitigate some of this.) Can't regulate my body temperature, especially at night when I'm trying to figure out what kind of cover to use. My overhead fan irritates the heck out of me these days. Muscle cramps, foot drop, pain at the end of my toes like wearing too small shoes, shooting pains in feet and hands, and my lower legs now feel like they are wrapped in cellophane. I even have the mysterious little wiggle that feels like a bug trapped beneath my skin. I am beginning to have more trouble walking. And more recently, I sometimes cannot lift my legs upon waking. Elsewhere on my body, I have indiscriminate numbness and tingling, especially on my face and everywhere my skin feels stretched. I mean, should you be aware of your body parts all the live long day? (Otherwise, I'm doing fine.) I have been on gabapentin for years, but my dosage is limited because too much causes fluid in lungs. I am also taking a muscle relaxer. Mostly, I rely on MJ because it is legal in my state and makes me just not care. Recently, I gave up sugar again because I'm a sugar addict, and inflammation has gone way down in just 4 days. However, none of this is a cure. My attempts for medical care led to me to a neurosurgeon who focused on my neck instead of my lower back and/or legs. After surgery (just 3 months post-op), I will have no further elective procedures. My neurosurgeon finally spoke the peripheral neuropathy words at my last visit, and I already knew I had peroneal neuropathy. But not a word about where to go from here, because sadly, there doesn't seem to be many places to go. So, my point is: we need more posts about coping and getting along instead of, in my opinion, the pointless pursuit of a diagnosis from which there is no cure.

Has anyone experienced gut problems and constipation? I have chemo induced peripheral neuropathy and have had these
other problems since I was diagnosed. I’m thinking there has to be a connection.
Thanks
Mary Ann C

I would see a neurosurgeon especially concern numbness on face I ended up have 5 level fusion in my cervical area because I was about to be paralyzed & not be able to breathe on my own, it affected my bslance & gait please look into it soon.

I hav weird numbness under my toes zero pain just feels like some under them, snyone else have this numbness with no pain ?

this was my diagnosis when neuropathy started many years ago.
it now affects my feet and ankles.

I crushed m spinal cord 14 months ago. I am now able to do most things but the nerve pain in my shoulders and upper arm is still present and sometimes even severe. I am on 360mg of gabapentin daily but that only helps a little. Any suggestions on how to stop this pain?

I was on 900mg of gabapentin daily. I have been able to cut it to 600mg I guess I’m saying 360mg doesn’t sound like a lot I also use frankincense- it helps.

I did try DMSO and it is the best of the many lotions and potions I have used. I use a roll-on with Aloe Vera. However, I now have the neuropathy in a larger area, so it's best if it's contained in a smaller area, and, of course, the efficacy wears off after a few hours so it's only a relief, no sort of cure.

On another note, practically overnight I have noticed I now have the neuro in my hands and my entire lower leg below the knee. Might as well have come on me overnight. I guess how it may go, no? I had been stable for years, so, of course, it is agitating and frustrating to have this happen so quickly. Pain level has also increased; tough to sleep. Well, that's my story if anyone has had similar or can relate. Maybe it's just something I ate that set me off on the downward slope?

Have you been a candidate for a spinal cord stimulator? It helps a lot of people with chronic pain. The trial is minimally invasive and is a good indicator as to whether it can help you. At the same time, be aware that not everyone who has a successful trial will have success with the permanent implant. Kind of a coin toss for some. I wish you well.

I can agree that it really spins you around. I was just hoping that folks would share their stories about finding some type of relief. Any relief would be helpful.