Hi to All

just thought this thread would be interesting
Just wondered what your perception of pain is.
I mowed my lawn today , probably only took about 30 mins all told,
but boy oh boy I was in a mess at the end , in a complete sweat
aching feet and ankles ,and all the rest that goes with P/N.
I had to take a shower to relieve the effects , this would be the 1st time in 10 years of P/N that it has been so bad .
Your thoughts would be interesting
Thats all matia do your know the meaning of that word (matia)
It's a hardwood in New Zealand , excellant for making furniture
Very pricy , and very scarce

Hi Matia, from beautiful Wanaka, the superb South Island!

I have experienced that every time I do something outdoors in the past few months. I try to do a task (I love mowing the lawns) and afterwards am just about crippled.

Yesterday I decided to tidy up one section of our fernery as it had got out of hand with months of neglect. It was not strenuous at all and only took about 20 minutes, then for the rest of the evening I was shuffling along - such nonsense. Being Friday night we went out for a bite to eat at our local shopping centre and my husband had to hold my arm and walk slowly with me while I basically shuffled. Usually I walk briskly - so I have two extremes now.

What baffles me, as it obviously does you - is why does this happen? There has to be a cause associated with our PN surely?

Do you have a diagnosis as to the cause of your PN, Matia?

I too would love to hear anyones expert thoughts on this.

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

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.

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.

Matia,
The pain scale that is most commonly used by docs
is the Mankoski (or Mankowski) pain scale.
If I can find it in my files, I'll copy and paste it.
But.... that is the one where a 10 is unconsciousness,
9 is excruciating with constant migraines of an unbearable level,
and so on down the line. Most who claim to be at a 10 level,
who aren't really aware of this scale, are probably at
a 7 or 8 on the Mankoski scale.

I found it:

Mankoski Pain Scale
Copyright © 1995, 1996, 1997 Andrea Mankoski. All rights reserved.
Right to copy with attribution freely granted.

0-- Pain Free No medication needed.

1-- Very minor annoyance - occasional minor twinges. No medication needed.

2-- Minor annoyance - occasional strong twinges. No medication needed.

3-- Annoying enough to be distracting. Mild painkillers are effective. (Aspirin, Ibuprofen.)

4 --Can be ignored if you are really involved in your work, but still distracting.
Mild painkillers relieve pain for 3-4 hours.

5-- Can't be ignored for more than 30 minutes.
Mild painkillers reduce pain for 3-4 hours.

6-- Can't be ignored for any length of time, but you can still go to work and participate in social activities.
Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours.

7-- Makes it difficult to concentrate, interferes with sleep You can still function with effort.
Stronger painkillers are only partially effective.
Strongest painkillers relieve pain (Oxycontin, Morphine)

8-- Physical activity severely limited. You can read and converse with effort.
Nausea and dizziness set in as factors of pain.
Stronger painkillers are minimally effective.
Strongest painkillers reduce pain for 3-4 hours.

9-- Unable to speak. Crying out or moaning uncontrollably - near delirium.
Strongest painkillers are only partially effective.

10-- Unconscious. Pain makes you pass out. Strongest painkillers are only partially effective.