Peripheral neuropathy....do your feet peel? Mine do.

[Thepottingshed]

Hi! From SE Alabama! I saw someone from Alanta? The weather down here in te deep south has been crazy... anyway, I've been lurking around, reading and gleaning all of your thoughts, stories, theories. Seems we all have to become true detectives once you fall down this rabbit hole of peripheral neuropathy. Without this missive getting way too long, I'll try and put my story in a nutshell...although the whole thing comes out eventually.

Im in my 4th month of this, although tell tale signs appeared over the course of the past 2 yrs...oh, hind sight. Sigh.

First, and during the beginning of this medical bout ... note: I'm not one of those "sick" people having been in the hospital some 15yrs prior and barely ever darkening any physicians doorway. I went to doc with 2 numb toes and the tops of my feet feeling sunburned. A course of bloodwork revealed the usual suspects: malnutrition, low electrolytes and a twist low red blood cells, high white and screamingly high ferritin. Next, a hematologist. Same. Bloodwork and "i dont know" why my feet feel sunburned! Now, stop drinking. Fine. Done. Eat. Fine. Another toe numb and tingling growing up my legs and extreme weakness....

Now, im invited to stay at our local hospital...for a bit over three weeks! Three liter blood transfusion, every electrolyte imaginable pumped in. Now im in a wheelchair going downstairs to the mental health ward. Nice.

After fistfuls of different medications prescribed, the right combo was established and out i went. But now where my feet felt sunburned, all the skin is peeling off! Not dry skin flakin, but in sheets.

Last week, meeting with next player on my team...the most arrogant neurologist I've ever met. Now I'm shamed and shocked into tears...only vaguely remembering L4 s2 on my nerve test with a side of EMG. Yes, im getting a new referral. I asked MS? Parkinsons? Fibromyalgia? Can't begin to test until levels are up....in 4 more months! If ever, I believe.

I hobble with a cane now not only with no sense of balance but a strange sense of slipping. Tingling on my arms, feet are both completely numb, and prickles on my torso. I have a patch on my thigh that goes numb after briefly standing. Going into 3rd week with vertigo -finally received meds for that! So much pain.

Upcomg appts with hemotologist and general this week.

Meds: gabapentin 600 3x day, visteril 4x day, remeron at bedtime. Magnesium 3x day, B1, folic, protonix in the morning. Vitamin D 50,000 twice a week. Monthly B12. Most have gotten into range, but as you said, folic, vit D, B1 and 12 need to be nearly the highest end.

My question, finally... reading some of you have YEARS with this...I'm only at 4mos., makes me sad and wonder...is this something that once the process begins, no matter what you do its simply has a course to run?...leaving me physically so disabled and mentally a wreck, again?

It was severe depression with a high dose of paralysing worrying anxiety that got me in this mess in a nutshell...to which, thats the visteril that gave me my life back so i dont sit and stare lost in my own head perpetually what-ifing...its like magic to be clear of thought, however, cursed, while physically crumbling...

I doubt theres a pill to fix this...in a nutshell.

[Vertical]

It sounds as if you’ve been through hell. At least you didn’t have severe pain along with the numbness, if I read your narrative correctly. Is the GABA helping and what about side effects?

I’m in my first month and pain is at the top of my list and can’t see THE neurologist for a month. It’s definitely panic and worry time.

However, my GP is giving me opioids to be able to tolerate otherwise all consuming pain (from feet).

As a point of optimism I read on this site where a couple of fellow PN sufferers

had thei pain remit after a few months back to premorbid baseline. Lucky them.

Please keep us informed about your progress or other. Best wishes.

[Thepottingshed in reply to Vertical]

I've had pain since it's inception however....I was in the hospital (Oct. '18) and the pain was searing. I was SO stiff and in such pain, turning over in bed was impossible as was even getting on and off the toilet to be frank. When I'd shuffle aided to and from each meal, the tears would stream down my face. No joke. Im no whip either...it was worse than the 28 hrs of hard labor delivering my son some 17 yrs ago now. I couldnt be put on narcotic pain meds so it was just the gabapentin and then was300mg 3x day. Today, its now 4mos in and im on 600mg 3x and while pain is becoming my new norm it's at a 4 when walking and tingly pain like a foot going to sleep which i put at a 2. I can get around now although my balance is much worse...prob because the numbness has devoured my feet nearly completely. I take tylenol when i get too stiff which seems to be associated with the pain.

So, YES! My pain got substantially better and its got to be the gabapentin. My electrolytes are again low but that associates with weakness in my muscles rather than pain.

I like alot here I've read, have had to take charge of their care. I was always so "thankful" to a doctor for seeing me...but after this horrible appt with my neurologist, I am seeking a new referral on Friday despite waiting 6 weeks for the appointment. They are part of YOUR team not visa versa.

My gaba was increased after the first month so perhaps yours will too. The process has become more tedious unraveling this puzzle, yet thankfully less painful.

I hope this helps and finds you looking up...

[Vertical in reply to Thepottingshed]

I’m glad to hear you’re on the mend. What an ordeal. At least you’ve got your pain down. Does Gaba-P give you strange side effects?

I’m still waiting to see a neurologist some 4 weeks out, and using opioids to keep the pain down. It seems to rise in the evening. I’m 70+ and retired. This sure has been a life altering illness. I hope to get it under control.

I read to keep walking - ugh, scary but I guess exercise is necessary. Take care.

[Thepottingshed in reply to Vertical]

At first I remember getting drunk-like bed spins when I'd reach down. Didnt last long. Also strange dreams which are still off and on. I WISH I could go walking! Ive tried several times but am just SO wobbly on my feet and the next day I'm down for the count...swollen and everything achy. My nerve conduction study showed nerve root damage in my lower back which finally solves the mystery of a numb area on my thigh when i stand...no matter how brief. The likely cause is simply age related...which really doesn't address the neuropathy and at this point I dont care really about the cause unless its something I do but rather how to FIX it.

Supposedly the vitamin and mineral anemia will but since I've had continued problems keeping them up....whenever theyve been "normal" everything seems to be the same. The muscle weakness and fatigue has proven to be electrolyte ie potassium and magnesium related. My problem is that I can't tolerate prolonged supplemental use.

It certainly is life altering. Holy cow. I'm glad opiods werent an option for me, I'm afraid of getting hooked....which would be just another rabbit hole for me to fall into!

Do what you can and dont risk hurting yourself. Ive really focused on diet. I love to cook and have had to try new ways cook without standing for any length of time. I do use a cane now...something I fought my pride. Im 53 and fiercely independent. Ironic, eh? Now we're at the mercy of meds and specialists....who, I swear are guessing half the time. I've learned to ask lots of questions (I take and make notes) and sometimes question when it doesn't make sense. My neurologist didn't like that.

Stay strong and WARM!

[Valerie58]

Things don't necessarily get worse. Mine is much better than 4 years ago. Ask for a physio referral to help with your balance and walking.

People will always be here to talk to on this site and it definitely helps to talk to other people in similar situations.

Things will get sorted but don't give the medics any excuses by ensuring you are living healthy lifestyle. For me changing my lifestyle has reversed what was an advancing problem.

Good luck and remember it can get better

[Hidden]

Hi pottingshed - Have some information for peripheral nerve pain from the mayoclinic.org. Acetyl - L - Carnitine can be used to treat pain. Whey protein can help gain weight and increase CD4T counts. As your feet are flaky - it might be helped by atheletes foot cream. I had the same condition with bad flaking underneath the foot, round the sides of the feet. Fungal infections thrive on a high sugar diet - so if you can cut down the sugar in your diet. it might help your foot condition. If you change your footwear, so you wear a cotton liner sock under your main socks, it might help if you are rubbing cream on your feet. I use Neutrogena foot cream as well as the atheletes foot cream - my skin had broken down, so I could not walk. If you need more comfortable shoes which are larger, then Cosy Foot wear is on line for shoes. Expect you've already had blood sugar tests so it won't be this.

[Thepottingshed]

Thanks so much for the tips and support! I had a great appointment on Friday with my general practitioner. New neuro referral, ortho referral as well as pain management. She's running full blood panels and checking RA since my whole body stiffness continues. I felt great leaving...hopeful. Vertigo will also be checked. Am staying on meclazine until then.

I do wear 3 pair of socks when I'm home as it really helps with sensitivity. When i wear shoes i simply cannot feel the floor...makes me crazy! I just tell myself to keep my weight over my feet and take my time...am getting much better using my cane.

I lotioned my feet and the peeling has slowed down. No signs of fungal so I'll keep an eye on it.

I received the test results from NCS and EMG. l4-5 and S1 damage to nerve root and early peripheral neuropathy. I also looked up my last hospital tests and on an xray a note was added I'd not noticed stating a degenerative spine. I mentioned that to the GP last week and she said they (the nerve root damage and spinal degeneration) are surely related.

I fell like I'm getting somewhere!