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Old 09-22-2007, 12:18 AM   #1
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Join Date: Sep 2007
Location: Adelaide
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steve pn HB User
You dont have to be old to get PN

I was diagnosed with PN seven years ago. I have lost my job, my wife, my home and really my life. I haven't been able to talk to someone about this cruel disease. Some people don't care and don't want to either.
I am feeling like the world is not the place for me. I don't know why I contracted this, maybe those beers on Saturday afternoon did it to me, or was it the cholesterol drugs I was taking (statins). I am on lyrica 450mg 2x a day, it doesn't do a lot. I wonder if there is anyone else out there that suffers like me. My wife didn't want to hear me in pain, it upset her TV viewing.
Steve Adelaide Australia.

 
Old 09-22-2007, 03:53 AM   #2
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Join Date: Mar 2004
Posts: 537
datgrlstef HB User
Re: You dont have to be old to get PN

I'm sorry that you have lost so much, but (no offense meant here) you're probably better off without your wife.

I am in my early 30's, and started having nerve pain 9-10 yrs ago. Nobody could explain it.. over the last year or so (for whatever reason) things got a lot worse. So I went to my doctor. She told me I had Neuropathy, and put me on Neurontin. However, it didn't help. So she sent me to a Neurologist.. I was put on Topamax, then Elavil.. and then some muscle relaxer, for growing muscle pain. She did try to find out the reason behind my problem, but she was unable to come up with anything.. in fact, she said I had something called "Polymyalgia Rheumatica", but I was very cynical about that. Her last resort (even after 2 MRI's, and various other tests) was to send me to an allergist... after that, she was going to refer me to a rheumatologist.

Have you tried to find out what is causing your PN? This is just my opinion, but if they find out the root cause of it, maybe they can get you better medication, so that you'll be in less pain?

I am no longer on Topamax. It stopped working. And the Elavil just hurt my sides when I took it. I did find out I had a very low iron count, which (according to an ER doctor) would cause some of my symptoms. I also found out I had thyroid nodules, and had one removed- I believe some thyroid conditions might cause of my symptoms as well. However, after explaining all of my health issues to some people, they suggested being tested for Lyme Disease. I found myself a Lyme Literate MD, and was tested through Igenex. It turns out I do have Lyme, and I've been undergoing abx treatment since May. I still have all my PN symptoms, but I've had Lyme for some time I think, so it might be awhile before I see real change.

I really hope you start feeling better soon. Do you trust your doctor? Do you think s/he is doing all they can for you? If you're not on the right meds, you really should ask him/her to try something else. I was on 25mg a day of Topamax to start, and actually I felt SO much better- the pains in my arms went away. I tried to bump up to 50mg a day when I got used to the lower dose, and unfortunately my body couldn't handle it. But you never know- maybe something like that would click for you?

Good luck!

 
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Old 09-22-2007, 01:22 PM   #3
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Join Date: May 2007
Location: san rafael, ca.
Posts: 80
woondog HB User
Re: You dont have to be old to get PN

After 26 years of diabetic pn, I am finally out of pain. The magic bullet
was: dilaudid and Nortryptilene of which I take a low dose.
Neuronton did ease my pain but it did not make it go away. Then I
started to get "the shakes", told my doctor and she changed it to the above.
Vicodin did temporarily make the pain go away but,unlike what it did to
others, it made me sleepless. Hang in there. the woondog.

 
Old 09-25-2007, 04:30 PM   #4
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Join Date: Sep 2007
Location: Adelaide
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steve pn HB User
Re: You dont have to be old to get PN

My GP didnt know what PN was and a lot dont either. I find it really hard to cope each day. I try and take my mind off it by keeping myself busy. Having it for 7 years is really taking its toll. My mind body and soul are tired and hate the fact the sun comes up in the morning, because I know I have the next 16 hours of pain. I am a member of a pain clinic here in adelaide, but Im just like another number they give you your months supply of lyrica and send you on your way....no converstaion no how are you no you look good.....lol...just NEXT....

Last edited by steve pn; 09-25-2007 at 05:30 PM.

 
Old 10-02-2007, 12:19 PM   #5
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Join Date: May 2007
Location: san rafael, ca.
Posts: 80
woondog HB User
Re: You dont have to be old to get PN

Most pn is felt more at night while in bed as opposed to during the
day. Does your comment about your GP have a bearing on your
Nations's medical situation? I know how you feel painwise. but
as you probably know, not all drugs help everyone; why not get some
Vicodin for the pain? I stopped taking it because, as opposed to this
drug making me sleepy in the daytime as it happens to most users,it kept
me awake at night. I still took it because I had preferred a sleepless night
as opposed to a sleepless night with pain. Now I take nortryptilene
and dilaudid, and for the first time in 25 years, I live relatively pain free.
In the past two months I had two painful nights but that's it.
One hears about the addictability of Vicodin. After taking it for about
10 years, I stopped without any withdrawal symptoms without any
help or consel from my doctor. Best of luck the woondog

Last edited by woondog; 10-02-2007 at 12:20 PM.

 
Old 07-24-2008, 10:07 PM   #6
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Join Date: Jul 2008
Location: TEXAS
Posts: 6
MARY9633 HB User
Re: You dont have to be old to get PN

Quote:
Originally Posted by datgrlstef View Post
I'm sorry that you have lost so much, but (no offense meant here) you're probably better off without your wife.

I am in my early 30's, and started having nerve pain 9-10 yrs ago. Nobody could explain it.. over the last year or so (for whatever reason) things got a lot worse. So I went to my doctor. She told me I had Neuropathy, and put me on Neurontin. However, it didn't help. So she sent me to a Neurologist.. I was put on Topamax, then Elavil.. and then some muscle relaxer, for growing muscle pain. She did try to find out the reason behind my problem, but she was unable to come up with anything.. in fact, she said I had something called "Polymyalgia Rheumatica", but I was very cynical about that. Her last resort (even after 2 MRI's, and various other tests) was to send me to an allergist... after that, she was going to refer me to a rheumatologist.

Have you tried to find out what is causing your PN? This is just my opinion, but if they find out the root cause of it, maybe they can get you better medication, so that you'll be in less pain?

I am no longer on Topamax. It stopped working. And the Elavil just hurt my sides when I took it. I did find out I had a very low iron count, which (according to an ER doctor) would cause some of my symptoms. I also found out I had thyroid nodules, and had one removed- I believe some thyroid conditions might cause of my symptoms as well. However, after explaining all of my health issues to some people, they suggested being tested for Lyme Disease. I found myself a Lyme Literate MD, and was tested through Igenex. It turns out I do have Lyme, and I've been undergoing abx treatment since May. I still have all my PN symptoms, but I've had Lyme for some time I think, so it might be awhile before I see real change.

I really hope you start feeling better soon. Do you trust your doctor? Do you think s/he is doing all they can for you? If you're not on the right meds, you really should ask him/her to try something else. I was on 25mg a day of Topamax to start, and actually I felt SO much better- the pains in my arms went away. I tried to bump up to 50mg a day when I got used to the lower dose, and unfortunately my body couldn't handle it. But you never know- maybe something like that would click for you?

Good luck!
How do they test you for lyme Disease? What are the symptoms for it? I know or have heard that it comes from flees and ticks but I can't be sure of everything I hear now a days. I am constantly getting bit by flees and just want to know if you can tell me a little about the symptoms you were having and how they found out it was truly lyme diseease?

 
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