What your idea of pain
 

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.

Hi Matia
 

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.

Pain....
 

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.

P/N pain threshold
 

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.

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!

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

Thanks so much for the explanation.

Mel
 

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. :grouphug: ......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.

I have to add here, the changing pains. One time it will be one area, then next, it is somewhere else. Last week, I had this, what I can only refer to as cramping sensation in my right hip. It came and went, but was mostly happening at work. On and off, all week. Then on Friday, my day off, of course, it seemed to radiate down the outside of my leg and I had this terrible burning sensation just below my knee. I couldn't sit and read, play guitar, nothing--I could not concentrate on anything but the burning. If I walked a bit, it would let up, then it would come back, full force. Toward evening, I was reading a magazine and came to the computer to research an interesting looking website, leaned froward to turn on the lamp and these intense electrical shocks zapped the inside of my hip joint, same hip. They were so painful, I tried to get up and walk it off and I could not move. After they stopped, I'm not sure if they numbed the nerve, or snapped it to attention, or what, but the hip felt better. It's still tender, but not spasming anymore. Is ok though, now my shoulder is hurting!:( It just moved to a new location!

It's true Daniella. We have to learn our limits. Somethings we can let go, somethings we can learn a new way of doing, and some we can ask help with. I used to love to move the furniture all the time, I never move it anymore. Now though, I am listening to more and more music. I am growing flowers from seeds. And, even though I do have carpal tunnel and it does work against me somewhat, I am learning to play guitar. Neuropathy will not win.

Your post reminded me of a pain-scale I stumbled-over on the internet one day. You can see it at:
tipna.org/info/documents/ComparativePainScale.htm

The descriptors used in that pain scale appealed to me.
- Pain scoring 10/10 causes you to go unconcious.
- Pain of 1/10 equates to a mosqito bite.
- Somewhere in the middle the pain the causes you difficulty
with doing your job.

So far with PN I guess I am running around 3 to 4. I suppose I should count myself lucky.

Best wishes,
Steve

pain levels....
 

:eek: I guess i'm a freak,cause even tho i'm comatose I still feel this ruddy pain 24/7..~~ Liz.~~:confused:

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.