Unbearable Neuropathy

I am finally seeing a Neurologist in August, my GP didnt seem to interested so I asked him to get me an appointment with Neurologist, and he did, hoping to get some answers.
I am one of the lucky ones I think, I am pretty sure it is Neuropathy, but just started few months ago, and altho get occasions sharp pains, I am not suffering badly with it. It does seem to have spread a little further from my toes along my feet, and feet and ankles swelling a lot.. I have heard people linking it to covid vaccines, that makes me wonder as I think this started after my 3rd booster in Dec, (2 vaccines, 3 boosters).. My husband talking about another booster, but think will let him have it if he wants, but I am not for now....

Hi, Louise (louise@lou)

I have just the opposite: low arch, or more correctly: no arch, and that's in both feet. If memory serves, I was in grade school when I was first told I had flat-ish feet (no longer -ish, however). When I was in my 30s, I took up running, at first participating in the more modest 5K and 10K events, but, before long, running half-, full-, and once-in-a-while even longer marathons. Ninety percent of today's joint woes are my own doing. LOL You say your one foot is thinner. Oddly enough, my feet – both of them tend to be swollen. My primary has suggested a number of different possible causes and hoped-for solutions (e.g., compression stockings), but nothing those far has helped to reduce the swelling. Is the swelling in any way related to my neuropathy? I wonder.

I've been very concerned about muscle atrophy. Because distance walking (and by "distance," I'm talking only the length of a city block) is no longer fun, I try to be diligent about daily rides on my stationary bicycle, adding distance weekly. I find it puzzling – pleasing, but puzzling – that my neuropathy appears to have no negative bearing on my cycling; in fact, my balance seems to improve as a result – never great, but better, and these days that's something to be grateful for.

For balance, I have a slew of balance-improvement exercises in the form of a gazillion handouts from years of doing PT. Today, I'm no longer going to PT but doing balance PT here at home as a student of an online course. I've been doing the online course since last fall. One positive result of the course, I'm almost certain, is that I've not fallen; my "recovery" skills (fall avoidance) have improved measurably.

As is the case for many of us, after dealing with neuropathy for several years, we've created relationships with what seems like a battalion of specialists. I sure had. A few months ago, I decided I had the cull the herd. I chose the specialist who seemed both the most knowledgeable and the most interested in me, not as a nameless patient but as an individual. He is a neurologist, of course, but has further refined his practice to physiatric medicine. I found him as a result of asking my primary for the name of a neurologist who makes an added effort to consider a patient's whole being, not only their neurological presentation. I regard this doctor as my "lead" doctor. That alone has simplified my life – and opened up whole days (no medical appointments!) on my calendar.

All the best to you, Louise! Let's keep working away at this.

Cheers!
Ray (@ray666)

I have found foam heel supports. They slip in any shoes and work quite well. In addition, Pregabalin did not give me any help with my Trigeminal Neuralgia, but Progabolin has been a wonder drug for me. You might ask your physician about this.
Gina5009

Progabolin what's the difference from Pregabalin?

What is Progabolin?

Sorry, I seem to have a spelling problem with the medications I believe it should be Gabalin and Pregabolin. They Are both medications that are used for Eplepsy but for the Neuralgia they act as Pain Medication. It sometimes takes a trial of different ones to find the right one. I am sure your physician can explain this to you with much more clarity. Sorry for the confusion
Gina5009

I take Nerve Optimizer and Nerve Renew a company located in Idaho. Check them out on the internet. After about 4 to 6 weeks I has a drastic change in burning and pain. I never miss a day. I'm not a paid promoter. Please give it a chance you won't regret it.
Shelley

Hi John, my nerve pain started in my left foot a small area at first then spread to the entire foot. Went to neurologist and he ran nerve tests and said I was fine……No way……then spread to my right foot and then moved to my legs then over my entire body. So far no neurologist can help me. The pain day by day is slowly getting worse. I tried to get exercise but does not help. I believe this all started because I have MGUS. Monoclonal Gammopathy of Undetermined significance. A precursor to cancer Doctors that I have won’t give any pain pills. I get nerve flair ups every day for hours. I see my General Practitioner this coming Friday and i need some kind of relief.

Hi @luckyride, Love your member name!, even though I've had a couple of unlucky rides. Sorry to hear you haven't found any help for the pain. There is another discussion you might want to read through to learn what others have shared.

--- Does anyone have neuropathy related to MGUS?: https://connect.mayoclinic.org/discussion/mgus-neuropathy/

Hoping you get some answers at your upcoming appointment Friday.

Hi Ray, That's great you found a caring neurologist who can really help, and wish you all the best.
I've been through such a herd of orthopedic surgeons, pain specialists, and early on did see a neurologist who was absolutely no help at all.
But I did find (on my own) where a lot of the pain is coming from - it's called pes cavus, another neurological disorder. It's a foot with an abnormally high plantar longitudinal arch. It can be straightened through surgery, but due to other procedures, and the fact I have a highly sensitive foot, that isn't an option. So along with contracture of the plantar fascia and cockup deformity of the big toe, I can only hope it doesn't get worse. Orthotics don't help nor Pregabalin with the pain. Tried compression socks, and they help relieve the pressure from my high arches, and increase blood flow, but I don't know about wearing them all day. Just sick about it really as I was like you, so active in the past and now I have little incentive left.
Do go on my stationary bike, but life just isn't the same without the freedom of motion.
Your positivity, though, is encouraging to hear, and always glad to read your posts. Shall update in future if this deformity can somehow be corrected. My best to you also.