I agree with Megan, with the baffling part. I am 3 years post PN, they beleive it was a once off autoimmune reaction with me, and I still have odd things going one that I cannot explain.

3 nights ago I woke up with leg cramps so severe in both calfs, I was in severe pain. This was at 3 am,and then I was up all night with pain.My legs still hurt. I am trying magnesium/calcium and I eat banannas yet I have leg cramps 4 x a week on average with no evidence of anything but small fibre neuropathy, and really no evidence of that either except subjective clinical.

Interesting concept in PN for all I think - I dont feel pain as much as severe fatique if I'm overdoing something at first, then the next two or three days just ache and hurt and zip and zap much more then normal..... I always know this is going to happen - so literally plan around it - also, used to pop out of bed in one hop and go - now its a slow crawl and reaching for pain killers...... quite a change.....

What I find most interesting is that Pain killers don't do a thing for Alan's neuropathy pain. Nada, nothing at all.

He was just operated on. The doctor told us to give him a percocet BEFORE THE PAIN STARTS, because you don't take PERCOCET once the pain is already there.

So the night of the operation, I gave Alan the Percocet and massaged him and said 'okay, you should be okay now". He laid in the bed for one hour and ultimately said "when do I fall asleep?" and I said "are you in pain?" and he said "yeah, my toes are killing me" . I said "but you took a percocet" and he said "it did nothing".

So 90 minutes after he took the percocet I gave him one alprazolam and in 15 minutes he was beddy bye.

So I gather that Percocet does NOTHING for neuropathic pain??

Well, he can't take lyrica or neurontin. So I guess we have to be thankful that he at least gets to go to sleep because of the alprazolam.

Hi All

Thanks for your replys
It appears that pain with P/N can be of differant levels for each
one of us
On a scale of 1 to 10 what would you consider your pain and frustrations
to be, I would consider mine to be at least 8 or 9 24/7
Megan -- I got this P/n through taking the drug Amioderone to control Atrial Fibulation , took this drug for 2 1/2 years then felt my feet starting to tingle
, I didnt think much of it until about 6 months later , but by then it was too late , noticed it in the left leg first , then the right leg , it has gone up to the buttoch in the left leg and knee hight in the right leg'. I cannot find a pain killer including Metadone that works at all
Tell me Megan are you from NZ ?
I as have said before I have a permanent water basin beside my bed to bathe in when they are too hot
I take 3200 mg of neurontin and 50 mg of lamatrigine per day
having tried most thing I find this works reasonable
My drug draw is like a chemist shop
Mind you I have always been one that was on the go , and find it a bit restraining to have P/n
The Dr said that if you find yourself in a situatuon that it is starting to feel uncomfortable , is to have a shower or rest with feet up.
cheers to all , keep smilng matia from NZ

Hi Matia,

No I'm not from NZ but have been there a couple of times. I'm from Melbourne, Aus where the drought continues!!! Last year in March/April (just before the onset of my PN) we travelled the South Island in a motor home. It was Autumn and we stayed one night in the town of Lake Wanaka which I think we all fell in love with - along with Arrowtown and Lake Tekapo and ....I could go on and on!

When I arrived back from NZ I didn't bounce back and remained extremely tired for several weeks until the PN started to come on in full force. When we went to NZ we went with another couple who are ten years older than us and within a couple of days of being home they were back to normal (travelling can be tiring) so then I guessed something wasn't quite right....and from there it went from bad to worse!

I wouldn't put my pain on as high a scale as you. 8 or 9/10 that must be terrible! Perhaps I estimate mine to be between 2 and 5, 24/7. Possibly I am being conservative. I am often aware of the pain and bone weariness even in my sleep which wakes me. Frustration probably sits at about 5/10.

I'm not on any specific medication for PN as yet.....so hope it stays that way. As with all of us, I certainly don't know whether this is going to get better or worse in the future!

Look after yourself!

Ther is a reason the Percocet did not work. The pecrcocet does not cross the blood/brain "barrier". That's why you can have an epideral and it doesn't affect the rest of you. PN involves the CNS. Pain meds do not touch. Just make ya high.

I had no idea why the Percocet did nothing for him. Now I understand.

Thanks so much for the explanation.

I'm confused we know that so bare with me..Wasn't Alan on
the Fentanyl Patch, was this for PN or foot? I hope his leg and
foot sugary help in a big way...Thinking of both of
you. ......sue

I don't know how to rate my pain I guess. When I go to the docs and they ask it is so hard. Mine raises for sure with activity but sometimes there is no connection. I will just get a huge flare up. I give you credit for mowing but there is no way for me. I can't push anything heavy or lift. I am walking 20minutes now and errands but things like housecleaning or a lot of bending is a no. Other things like biking too is a no. I do push like today did way to much and felt the pain.My issue is the inner ankles and legs but now have a back issue too. For me I have to find the balance. When I joined this forum I was in bed full days in pain and now can walk like I said 20 minute and out errands etc. I remember last year the doc said I had to learn to live with my pain and I was like no way in hell but I have realized what is the alternative to go back to bed like last year and no way. Sorry this is off base. I guess for me I pick the things I can do and the others I let go or have others do. To be honest though before the pn I would of not mowed the lawn but I was super active at the gym etc. My goal is to just be able to do normal things like work,school,social and be in tolerable pain. Feel better.

Please use Search on People's Pharmacy and type in Ivory soap. I have a friend whose husband had severe leg cramps at night. She put a bar of Ivory soap under the sheets of their bed at night and he does not have leg cramps anymore. Doesn't make sense but this was addressed in a People's Pharmacy column.