• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Can someone describe neuropathic pain for me?

PaulinaB

PaulinaB

Well-Known Member
Messages
594
Location
London, UK
Type of diabetes
Type 1
Treatment type
Insulin
Hi!

Could someone which neuropathy describe how the pain feels like? All I can ever find is "pins and needles". Does it change during the day, does activity affects it? Is it the same in both libms(ie both legs)? Does it affect the whole area (whole leg, for example) or only a part of it?

My GP suspects I have neuropathy in my legs. We're waiting for MRI results to rule out any back issues, but he's pretty sure that's it. I'm having a hard time describing the pain itself... like trying to describe a hyper or hypo for the first time :) So if someone can share how it is for them, maybe I can find some common words.
 
PaulinaB said:
Hi!

Could someone which neuropathy describe how the pain feels like? All I can ever find is "pins and needles". Does it change during the day, does activity affects it? Is it the same in both libms(ie both legs)? Does it affect the whole area (whole leg, for example) or only a part of it?

My GP suspects I have neuropathy in my legs. We're waiting for MRI results to rule out any back issues, but he's pretty sure that's it. I'm having a hard time describing the pain itself... like trying to describe a hyper or hypo for the first time :) So if someone can share how it is for them, maybe I can find some common words.
Click to expand...
No but how do they diagnose it?
 
JACKTHELAD said:
No but how do they diagnose it?
Click to expand...
I think I'm supposed to see a neurologist if MRI is clear and he can do some tests to diagnose it. From what I understand they put a "current" through your nerves and measure the response.
 
Wow you don't want much do you, now the pain is different for different people, so mine could be different form yours, but here goes, are you ticklish, if so imagine being tickled but the tickle is 100 times worse than usual, add to that the weird feeling you get when you sit on your hand and it goes numb then starts to come round its sort of dead but isn't and when you touch the skin it sort of tingles in a strange way but hurts, imagine that 1000 times worse, everything is super sensitive and painful, exquisitely painful when sheets rub over toes and skin, then there are the spikes of pain that jab through legs and feet just to remind you they are still attached making you jump out your skin, that's about the best description I can give you, hope it helps.
 
Hi there, I have been type 2 diagnosed 7 yrs but gp believes I had it for a few yrs without knowing.
I first noticed strange feelings in my feet whilst on holiday in Majorca, I felt as though I still had beach flip flops on hours after my shower, I kept looking at my feet to see what I was wearing but my feet were bare (in hotel room): I did not go to my go with this as I didn't think it was necessary, I thought what can I say? That I have funny sensations in my feet. I felt I would be wasting the doctor's time, or it was the weather or my age or I had been working too much overtime. my pains vary a lot both in pain level and feelings. Sometimes it's tingling, sometimes like needles shooting in my toe tips and sometimes burning. Before my diagnosis I would stand in the bath and run the cold tap till water was just above my ankles, if I closed my eyes and lifted a foot out of the water and pop it in then out I couldn't really tell if it was in or out of the water! I was oblivious to the cold temperature of the water. I am prescribed 3 different medications for long term pain relief which make it bearable, but rarely am I pain free. On a good day I feel like I am walking on a mattress sort of bouncy and sometimes I am in agony when walking, from the burning on the balls of my feet, this does not go away if I have a rest. The weird sensation is creeping up my legs to mid calf. I wish I could swap them or have feet transplants!! As in knee replacements -- now that would be fabulous.
 
PaulinaB said:
I think I'm supposed to see a neurologist if MRI is clear and he can do some tests to diagnose it. From what I understand they put a "current" through your nerves and measure the response.
Click to expand...
I've had those a few years back ... electrical; potential tests.
Two different types at two different hospitals and they had to abandon them because the effect on me was like being down Saddam Hussiens police station.
But no one mentioned neuropathy.
I hadn't been diagnosed with diabetes then though.
These tests were to see how damaged some nerves were and looking at that point to see if I had MS ... I didn't.
Interesting though ... you might have just shined a light on something for me.
 
Can vary depending on loss of sensation to super sensitisation. Pain as described above can vary from a feeling of warmth, or hot water running down your leg, to burning as if someone has thrown boiling water on your skin. A simple touch sensation can be painful , so clothes and bed sheets can cause painful sensations. Then there's the electric shock pain which is sharp in bursts and comes from nowhere.

Loss of feelings would be numb, iyou can't feel something touching your skin , or can feel as if your feet are in cotton wool, or candy floss.

Areas affected depend on the length of nerve affected and which nerve and can vary. The most common area seems to leg and feet, but when. I had painful sensitive neuropathy it was in my left side, which wasn't typical so took some time for a diagnosis.

In my case the nerves must have repaired to a greater extent as I'm not often troubled by it, now it's just some residual sensitivity in that side.
 
Thanks everyone! It sounds familiar, especially the part where it goes numb and then comes back but muuuuuch worse. And touch hurts, I can't sit or lay down :/ and that it's different between both legs (my left leg is much worse) is also expected?

For me the pain is not the same all the time, my legs are little painful all the time, but it usually gets much worse in the evening.
And yesterday I noticed that when it gets bad, I get a feeling of shooting pain in some placed, like being repeatedly stabbed in this spot...

Can it also affect hands? My hands like to go little numb and the joints in fingers are frozen/painful when I try to move them.


To be honest I was really hoping it's just some kind of vitamin deficiency that's causing muscle spasms, but it seems my gp is right :(

He prescribes gabapentin or something like that, does it sound familiar to anyone?

EDIT:
It's called gabapentin, not gabaliptin, lol :) I knew it's gaba-something
 
Last edited by a moderator:
Thanks for posting this thread. I never thought that I was experiencing neuropathy until I read some of the descriptions. When I get cold outside then go back indoors touching my thighs is like someone stabbing me with pins wherever I touch. I'd always just assumed it was dodgy circulation
 
PaulinaB said:
Thanks everyone! It sounds familiar, especially the part where it goes numb and then comes back but muuuuuch worse. And touch hurts, I can't sit or lay down :/ and that it's different between both legs (my left leg is much worse) is also expected?

For me the pain is not the same all the time, my legs are little painful all the time, but it usually gets much worse in the evening.
And yesterday I noticed that when it gets bad, I get a feeling of shooting pain in some placed, like being repeatedly stabbed in this spot...

Can it also affect hands? My hands like to go little numb and the joints in fingers are frozen/painful when I try to move them.


To be honest I was really hoping it's just some kind of vitamin deficiency that's causing muscle spasms, but it seems my gp is right :(

He prescribes gabapentin or something like that, does it sound familiar to anyone?

EDIT:
It's called gabapentin, not gabaliptin, lol :) I knew it's gaba-something
Click to expand...
I'm on Gabapentin for nerve pain.
 
PaulinaB said:
Any side effects? How are you finding it?
Click to expand...
I go up to 1800 mg a day and that makes me sleepy but I'm on a new opiate that has me taking less of them at the moment.
I can have quite a violent twitch/stab/flash of pain and the gaba helps a great deal with that.
 
JACKTHELAD said:
I go up to 1800 mg a day and that makes me sleepy but I'm on a new opiate that has me taking less of them at the moment.
I can have quite a violent twitch/stab/flash of pain and the gaba helps a great deal with that.
Click to expand...
Do you find it affects your bg? I only took 1st pill yesterday but had a weird high at nigh for no apparent reason that took much bigger corrections to push down...

I'm still not sure if I should be taking it at all. If the pain gets really bad, "regular" stuff like ibuprofen seems to help enough.
 
I can't take Ibuprofen gives me a lot of stomach cramp.
I'm T2 by the way.
My sugars seem to be under control pretty good just now through LCHF.
 
I took gabapentin again tonight (100mg) and half an hour later my bg started rising. Didnt eat anything and my bg was perfectly stable before taking it. I'm at 11.5mmol now and going up :(
Looks like its going to be a another night of shooting up insulin every few hours :/
I guess I'm not going to continue with gaba anymore. My pain is not that bad, and on occiasional worse day,ibuprofen seems to do the trick. I can't afford having more damage done to the nerves by a medication that's supposed to help with it...
 
I take 3200mg of gabapentin a day. It doesn't affect my BGL at all
 
I was diagnosed neuropathy by my go and given 25mg of amyltriptylin at night. This was increased over time to 50 mg then to 75mg.then as pain increased I was given Cymbalta in conjunction. It all helped but I was still in pain and referred to a pain management specialist and started on Gabaphentin. After a few months I had nightmares and hallucinations then double vision which was very scary, I visited my go and stopped gabaphentin. A year later and I was in painful agony again and a new gp started me on Lyrica which is of the same family as Gabaphentin and the pains have subsided a bit. I have my fingers crossed that I don't have any bad side effects with the Lyrica.
Good luck everyone.
 
I have a mild form of neuropathy in both of my feet. I wouldn't describe the feeling as painful, it is more of a discomfort. It feels as though someone has put the inside of my foot in a vice and is squashing it all together. The discomfort feeling is always there, but more so when I'm sat down or lying in bed. I also have episodes where patches of skin on my body become ultra sensitive and painful to the touch, very similar to shingles type pain. This pain will last for a few days then just disappear. Fortunately, none of the pain is bad enough to need specialist painkillers.
 
I have neuropathy in my left leg the one I have just had a hip replacement on. I went to the pain clinic for a year before the op and they told me I had 2 pains in my leg my hip and neuropathic pain from damaged nerves. Now I have had the hip done the pain I have is sharp pins and needles, burning pain and bolts of pain that make me jump across my knee . I thought the hip op might help but no pain back as it was before . I refuse to take the opioid painkillers I was on before as I became a complete zombie and was really ill coming off them and lost so much weight as I completely lost my appetite .
 
Back
Top