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Old 11-04-2006, 07:51 AM
davec davec is offline
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Join Date: Oct 2006
Location: dorset uk
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Default Anyone had this problem?

Hi All ,haven't posted for a while but continue to monitor message boards on both braintalks.Last time i sought advice my condition had been slowly developing over 3years or so.I now understand after all this time and after a considerable number of tests ,all i must say driven by me with help from yourselves,that i have 'probabable small fibre PN' but because all my tests(blood,MRI of whole spine,nerve conduction etc)are negative then its idiopathic--sound familiar?.
Anyway i have been taking Lyrica during the day and amitriptilyne at night plus all the vits recommended here over the last 2 years and am just working hard to get round the problems this PN causes,particularly at work where i am on my feet for most of the day.I am also excercising daily at a moderated level.
Unfortunately i am now experiencing very sore elbows and hyper sensitive hands(just leaning on the keyboard typing causes some discomfort)as well as the hot feet and often burning legs.Most recently i seem to have mild burning around my nose and some days on the lips.Perhaps the wierdest sensation now is that my nipples are really sore(as an ex runner i can compare it to 'runners nipple' which can be very painful)
My questions therefore are;
Has anyone else developed these same symptoms in the past over such a long period?--mine has taken 3 years to reach this point.
Does anyone use a drug or something less 'poisonous' that really helps when the PN decides to have a bad day--i don't know about you folks but there is often no pattern to this disease though stress and tiredness CERTAINLY don't help!(i dont have any help with drugs other than you guys can you believe!I am not being monitored or advised which has been a huge shock and source of dissappointment!
Has anyone been through the same developments as me in the past?i am desperate to have an idea when this is going to plateau or will it?(i recognise everyone of us is different)
Thanking everyone in anticipation i have had great advice in the past,best wishes-David
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Old 11-04-2006, 12:30 PM
nide44 nide44 is offline
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Location: Chesapeake Bay
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David,
All I can give you is my experience.
After 7 years, my PN continues to change.

It keeps giving me new symptoms (that I've read about in others, though) every few years.

After 2 yrs, my symptoms increased - but were successfully handled by Neurontin to lower pain levels to a 4-6 with spikes to 7. Manageable.

At 5 yrs the Neurontin (& Ultram) wasn't working well and I was back up to 6-8 with spikes to 9. A year and a half of trying different meds (there are about 75 to choose from) with no results, still in pain, freaked out from trying the drugs- and thier s/e - Lyrica (after a long wait) finally came out.
I was on Lyrica one month after it was approved.
Success...... somewhat.

Now at 7 years (& on Lyrica & Ultram) , my pain management is now at 2-4 with spikes to 5 or 6.
Different symptoms still occur and I have to mentally classify them as PN or NOT PN.
If I think its PN, the meds usually allow me to let them 'roll off my back' (can't just ignore them, totally) and I 'keep on truckin'.
If its not PN, then I make it an issue at my next doc appt-
or make an appt. asap to check it out.

PN is chronic, here to stay.
We fght with it every day.
But we can't fight it, trying to make it go away. We have to learn how to cope with it and do our damnedest to find what's right for each of us, individually.
What's 'good for the goose is good for the gander' doesn't apply.
PN is too varied, and so are we, who suffer with it.
__________________
Bob B

Last edited by nide44; 11-04-2006 at 12:39 PM.
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