[lesley21]

I found this in a newsletter for people with inflammatory neuropathies, it was written in 2002 so I am hoping the writer has different ideas now. I felt very angry when it read it. NOT PAIN??? The writer obviously does not have peripheral neuropathy


"When a patient complains of pain, I ask "What is the quality of the pain?" Many will complain of
burning sensations or pins and needles but such is not pain. It is uncomfortable but is not the pain
when you have a tooth abscess. "

Hugs to everyone and it is real pain!

[glenntaj]

That tooth abcess pain is nociceptive pain, but those who have experienced the burning, stinging neuropathic pain are unlikely to confuse it with anything else.

It is hard to describe it to people who haven't experienced it, though, due to its dysesthetic quality.

[Swmnupstrm]

The last neuro I went to (with the constant buzzing and intermittent burning and aching in my feet) asked me, "does it affect your quality of life?"

Nawwwwww, I just came to see you because I enjoy the 90 mile trip to Jacksonville!!!!!!!!!!!!

[NeuroNixed Craig]

I too suffer from PN with some days better than others. I'm on Topamax and Neurontin plus Ibuprofen. Honestly? They don't do much for me that I can really tell.

Even when trying to explain to nonmedical people the feeling of walking on hot sand, broken glass, pebbles in the the shoe, burning in the arms, legs, hands, and feet they just don't get it. Shaving is a whole other story with the sensitivity from the blade across my face and the feeling that it is red hot against my skin. Oh! Let's not forget to mention I also have spastic involuntary movements which provides an additional challenge to shaving causing nicks.

Now, when you describe these symptoms to a doctor, not to mention an almighty neuro, and they look at you like you're nuts and question your mental state, what the he** are they good for?

After over 10 years of dealing with these symptoms, regular doctors and stupid, uncaring, desensitized neuros, I have little respect for western medicine. And NO, more drugs are not the answer!

I've resigned myself to deal with it quietly, not complain, and go with the flow. Why not complain? Simple! 50% don't care and the other 50% are glad to hear it. Moral of this story? We have to take responsibility for ourselves, be the most pro-active healthcare advocate for ourselves, and do what makes us feel the best we can while we can. Most of all, continue to look for our own answers because we never know where they will come from. Case in point, Lorenzo's Oil.

OK! I'm done for now. Thank you for your patience and tolerance of my rant.

[EE03]

Originally Posted by NeuroNixed Craig

Case in point, Lorenzo's Oil.

OK! I'm done for now. Thank you for your patience and tolerance of my rant.

What is Lorenzo's Oil?

[NeuroNixed Craig]

Lorenzo's Oil is a true story of a child with an unidentifiable disease and no cure. The mother, specifically, and father refused to believe modern medicine and doctor's, did an enormous amount of personal internet research thus developing the cure, Lorenzo's Oil.

Their son's name is Lorenzo. There is much more to this great story so Google it for more information. I use it as an example modern medicine, much to their own disbelief, do not know everything they think they do.

[DanP]

Check out Lorenzo Oil here: http://en.wikipedia.org/wiki/Lorenzo's_Oil

[DanP]

Go to this site:http://www.drugs.com/npp/lorenzo-s-oil.html ... and scroll down to: Lorenzo Oil Uses & Pharmacology and it mentions PN.

I went to http://www.google.com/webhp?complete=1&hl=en and typed in Lorenzo Oil and Peripheral Neuropathy and found the above site along with several others. I didn't check out the 'others' but you might want to.

[dahlek]

I've tried to find out what 'standards' docs use to assess pain levels? And there are about FIVE different 'scales' used, usually on a 1-10 scale.
That said? YOU need to get a handle or better yet a copy of the SCALE they're using? Because the scale uses 'words' and I find that WORDS are far better descriptors of your pain. Besides, how any doc determines your pain level isn't gonna be the same way you feel yours! It's all subjective and often out of real-life context!
Could you PM me the article or the source? I'm sure I've read it, and '02 is LONG ago by research standards? I mite be able to find something more recent too. BUT... some docs havn't read any papers since they went into practice! Remember that, please that their training and such and at what times [or how often they attend conferences and the like?] can work for or against you in getting a diagnosis that IS CORRECT!
That IS the ONLY THING you should work for? Tho at times, the pain can be 'helped' thru meds and other therapies? It's gonna be there! But to a lesser degree. I happen to LIKE VERY MUCH 'Lesser Degrees!' I'll take them, I've no room to be too fussey these days. BUT? I DO NOT DO HAPPY FACES for pain levels! Never have, never will!
BTW? When my nerves DIED the first time? They hurt like beyond heck in the process, then NOTHING, and once trying to re-grow? They hurt like 'just' heck. Just 'heck is a lot easier to live with, trust me! Hugs Hope and good things soon! - j 's
PS? Now they just sort of occasionally zeep and zap, but usually 'thrumm'.

[lesley21]

Hi Dahlek, I am not sure if I am aloud to send it to you, it is a newsletter from a support group here in Australia, the only one here mind you that I know of. The support group is for people with Inflammatory Neuropathies. It was just that passage that got to me, the rest of the article was ok. The doctor was an orthopedic surgeon not a neuroligist.

I have done a lot of reading on the subject of Peripheral neuropathy and when you think Numb Toes was written in 1999 it is a very out dated coment. But in Australia no one has heard of Peripheral neuropathy anyway. Doctors have but nobody else have. My Physio looked at me as if I was loony when I said I had leg pain all the time.

Any way thats my venting.