Soles of feet

[spalding]

Does anyone suffer with pain in soles of feet and when you try to stretch feet up or down it feels like something is pulling and stretching cannot move toes apart anymore also get burning still and heels are going numb now as well

[monkeybus]

Sounds like neuropathy/neuropathic pain to me.

4-Aminopyridine enables me to wiggle my toes. 4-ap-3-meoh is even better.

Gabapentin and Lyrica stop the numbness, pins and needles and a good chunk of the pain.

Marijuana made my legs feel fantastic as well, or maybe I was so baked I didn't care.

Neuropathy is a tough one. Time to see a decent neurologist.

[spalding in reply to monkeybus]

Thanks for that it’s a bit easy to blame everything on Amn I already have a neurologist in London will mention it when I see him in April

[Aaron98]

Every. Single. Day.

Seriously, my neuropathic pain is very similar to what you describe. It varies in intensity, but it never goes away, day or night. Some days it is manageable, some days it is exquisitely painful.

In 2017, I tried seven different potential treatments, four oral and three topical. The first three oral medications were amitriptyline, duloxetine, and gabapentin. I got up to a very high dosage on each, but none were effective at reducing pain significantly. Please bear in mind, however, that each of these has been effective for others with AMN. They just weren't for me. The topical ointments/creams that I tried were capsaicin cream, Penetrex, and a compounded cream with amitriptyline/baclofen/ketamine in it. They were worthless.

I am currently taking extended release carbamazepine, which was recommended both by my local doctors and the neurologist at Kennedy Krieger Institute. I've been taking it about four weeks, and am at 200 mg twice a day. So far it has not been effective, but I am going to give it a full eight week test.

I met with my pain management specialist two weeks ago, and he said that the next things to try if carbamazepine doesn't work are cannabis or opioids, preferably Tramadol (apparently a less addictive opioid, although I am extremely low risk for addiction). I have a close friend with chronic illness who vapes marijuana three times a day, and it is effective for him. I just don't know that I want the fumes around my infant daughter. I also prefer an oral medication, for ease of use. Another friend with chronic illness has used CBD oils topically and sublingually, and she stated that while they have been great for her sleep and appetite, they haven't really lessened her pain.

I'm sorry for writing such a long post, but this has been one of my biggest challenges, particularly since my neuropathic pain became so much worse a little over a year ago. I am truly sorry for the pain you are experiencing. Feel free to write more about what you have tried, and we would all be glad to share our experiences.

[monkeybus in reply to Aaron98]

That Tramadol is pretty addictive. I'm going by what my mother tells me here. Barely works as well. Also, these "traditional" painkillers are not in the same ballpark as neuropathic painkillers. Of course, we all know this.

I've heard of this Baclofen/Ketamine mix before. And I've often wondered about psychedelics/dissociatives.

Decades ago, I was on LSD (don't do it kids), and I cut my finger, but it didn't hurt. Not at all. Crossed my mind a while back to try some Benztropine. It's in travel sickness pills. Hardly a long term fix. Be interesting to at least try.

Talking of neuropathy. For years the soles of my feet felt as if they were made of sponge. Uncomfortable, but not painfully so.

4-Aminopyridine stopped that, and now after over three years of daily use, it has gone. Even if I stop for a couple of weeks. Shame it hasn't had a lasting effect on my spasticity.

If I could get some dope that wasn't so blisteringly strong, I'd smoke it again. That stuff I bought in November was terrifyingly potent.

[Aaron98 in reply to monkeybus]

Thanks for the reply, monkeybus. My doctors and I feel that I've tried the neuropathic painkillers, and they haven't worked. Are there other medications you can think of before trying the opioid route?

[monkeybus in reply to Aaron98]

I've just read that carbamazepine can affect bone marrow production.

Given the choice of that or opiates, I certainly wouldn't choose carbamazepine.

Then again, I have been reading up on America's opiate drug epidemic:

amazon.com/Dreamland-True-A...

A great read.

Truth is, you take opiates for any length, you are addicted. Non-negotiable. This includes Tramadol.

The old Marihuana has to be worth a serious go first. So what if it makes you see god? At least it doesn't steal your soul.

As for the fumes and your little daughter. Trust me, you won't be toking up all day.

Have to say, when I smoked it. My legs felt excellent. I did, also, spend all of the rest of the day doing nothing of any productive value at all. I watched a lot of episodes of The Walking Dead.

[9943284]

Yap, it’s been years that I have pain in my sole, the right one, it’s called Drop Foot and it is due to AMN, I tried the orthotics bracers, can’t walk with it, new insoles orthotics, also not good and I can’t find the right shoes too, the most comfortable are old fisherman sandals that I bought at Costco and can’t find them again, I have pain in my foot, hips , lower back and now my left arm (Cain arm),from my neck through my arm to the palm, also some tingling filing, like electric. I don’t take any pain killers anymore, nothing works, the only relief is lying on my back knees up, like a zero gravity chair or the floor, unfortunately there is no magic yet in the drugs world.

[easygoin1]

I also have "discomfort" in my feet all the time. Mostly in the ball of the foot and the toes. It is bearable during the day, but night it changes to a cold wind or cold water feeling from my calves down and interferes with sleep. I have been on Carbamezapine for quite a few years for a type of seizure I was having and have now been on Gabapentin for a few years and the combination seems to keep it manageable. I recently got a prescription for medical Cannabis and have been trying it out and am using a 1:1 oil. It definitely helps sleep, but I don't find it does much for the daytime neuropathy. My wife just went to a Cannabis clinic and the Doctor and the herbologist there had good suggestions for using a combination of CBD oil during the day and a 1:1 oil for night. So that is the next try for to see if that will help.

I hope you find some help soon!!

[SongStream]

Spalding, are you referring to the burning pain in the soles of your feet? If so, you are in another AMN class of symptoms outside of the norm and it's more prevalent with AMN women. I'm familiar with Aaron's grievances with his unending bout and I, myself, have been suffering for years. Now, the burning appears more pronounced in the evening when I am less mobile and it extends to my sleep. It gets to the point now where I unwelcome the evening for I know the pain it will bring. Gabapentin is the the only medication I use but combined with baclofen for the spasm foot jerks (also making an appearance in the evening), I am intoxicated and resemble a dry drunk. I'm reserved with waffling of ever finding complete respite.

[spalding in reply to SongStream]

I do have burning but when I try to point my feet upwards it feels like something is pulling and is really hard to try and do my feet are always worse in the evening and they feel like a ton weight I did not know if it was related to Amn I am female diagnosed 4 years ago

[julie_]

I don't have pain but I do have high sensitivity in the soles; if I step on a sesame seed, it feels like a sharp object!

As for the pulling and stretching, the soles of your feet are connected up your leg. It makes sense you would feel pulling as your calves and probably your shins are very tight. At least this is the case for me. Besides working out, I am constantly stretching my legs, all parts ... and hips ... and back, etc.

[monkeybus]

Pain is a terrible thing. We all know that.

And neuropathic pain seems low on the list of either research or serious thought by doctors.

These neuropathic pain drugs were all developed for wildly different diseases/conditions. Epilepsy, depression, and that.

Stretching works (I know this could sound a bit platitudinous to someone in need of actual, quantifiable relief right now).

But Yoga is both an art and a science, even a simple touching your toes exercise, done well, can free up dull, achey muscles so well.

And, like i said before about spasms:

Where do they originate? The actual muscle, or the brain?

Obviously, you feel the pain in your foot, or wherever. But pain, all kinds, like referred pain: You have a heart attack, you feel it down your left arm. Or (hardly comparable) If I am constipated, I get a headache.

Or people that lose a limb and they still feel it hurting. Phantom pain.

Back when I would do anything for money I signed up for a clinical trial to test a medicine that would block a theoretical pain messenger called "P".

i didn't do the trial in the end and i wonder what happened to it, and "P".

But, getting back on point, as I have posted earlier, I am getting back into electromedicine.

I dug out my beloved TENS machine. I stopped because I kept burning myself. Turns out I had it set too high, duh!

Anyway, TENS works. So much scientific evidence out there regarding pain, spasticity, nerve regeneration, pelvic floor strengthening, constipation, urinary incontinence. I have posted about this before. The skin round your ankle is so thin, a lot of nerves bunched up in there. Plenty of scope to stimulate all kinds of nerves.

I highly recommend TENS.

Here is mine:

amazon.co.uk/NeuroTrac-ECS3...

If it works, it works. TENS units are cheap, and you can buy on Amazon, though the US selection is limited (needs to be FDA approved). Mine is clearly labeled "Not for sale or use in the USA".

And then I built a CES unit.

healthunlocked.com/amneasie...

Like I said, there is zero evidence over decades of research, zero evidence of harmful effects of Cranial Electro Stimulation.

Try this scientific report on neuropathic pain:

ncbi.nlm.nih.gov/pubmed/217...

"On average, CES appears to have provided a small but statistically significant improvement in pain intensity and pain interference with few troublesome side effects. Individual results varied from no pain relief to a great deal of relief."

How about that?

CES is real science, this isn't crystal healing. I'd urge anyone to read The Science behind Crainial Electrotherapy Stimulation.

mybrainchemistry.com/upload...

Just search the references for pain, plenty there.

My posts are getting longer, one of the joys of not having a job.

Be well, folks.

[mariagno]

All of the above but one other thing.

I have experienced dry skin and my neurologist says the have some relation.

Make sure you are taking the B vitamins. Find a B Complex and take everyday.

Then find a decent skin lotion like Eucerin.

I use in the morning and at night.

I had a lot problems when sock were put on. It seems like the pins and needles feeling got worse. Keeping the skin moist helps a lot.

Diabetic neuropathy creates similar issues and there are lots of diabetic skin lotions.

Just be sure to keep the feet clean to avoid athletes foot or bacterial infections that are sometimes hard to heal.