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Old 06-14-2011, 07:09 AM   #1
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Angry Is there a difference in pain levels

I am wandering what the difference is peripheral neuropathy verses small fiber neuropathy. From what I read on this site it appears to me that SFN is very painful, and I never heard of SFN at all. I'm sure any type is of neuropathy is very painful. I had an EMG performed by two different doctors within 3 months of each other and the first one told me I had severe peripheral neuropathy that had showed signs that this disease has progressed to point where the nerve endings that it damaged will not regenerate and the pain I had been having for the last several years ( that my doctors told me was in my head ) was due to this undiagnosed disease.
I went to my PCP to try to get some information how this could have been missed and had the EMG report to show him and I was told that it was unfortunate and he was sorry. He referred me to a neurologist within my insurance plan and that doctor performed a more extensive EMG and confirmed that I had peripheral neuropathy of the legs, feet and problems in my arms with carpletunnel in one arm. Also they
did several blood tests that came back negative. I was told they don't what caused my neuropahty and all that they can do is try to make me comfortable with meds.
I would like to know if this disease starts with SFN and progresses to a more severe stage of neuropathy or something else. We all seem to have different degrees of pain and the doctors throw all these different meds at us that seem to have some kind of side effects instead of prescribing pain meds that deal with pain. I also notice that they expect to take these other meds and deal with these bad side effects if not they will prescribe another kind of meds, but not pain meds. I feel like those of us with neuropathy are guinea pigs for the big drug companies that need to find out what kind of effect these new drugs have on people and we are the ones that get this nasty chance.
I'm sorry if you think I'm babbling on, but after 5 years of pain and side effects with no relief of severe pain I really need some answers about what is going on. I'm so tired of not being able to walk, climb stairs, get comfortable enough to sleep and my doctor saying we will just have to try another drug and getting no reason why or what can be done to stop the nerve damage that is going on in my body.

 
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Old 06-14-2011, 08:50 AM   #2
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Re: Is there a difference in pain levels

I was stupid and waited to see any doctor about the pain in my feet....when I did I started out seeing my PCP...which sent me to a foot doctor...which sent me to a Neurologist...he did a zap test on me..blood work...and prescribed something(this was in 07)...I wasn't happy w/him..so saw another which did another zap test and did a LOT of blood tests...after the results came back w/no answers to why I had PN they did an ankle nerve biospy and also a spinal tap...and again no answers as to why I had PN which was no in my feet and up my legs and starting to affect my hands...

I've now seen 4 Neurologists w/no real answers...I get "we can't treat you until we know the cause of your PN"....been on both Gab and Lyricia...and at the moment TRYING to get back on Lyricia...as I type my wife has a call into my PCP...

I too hate the "try this and see if it helps" but need to hope there is something out there that will help.

The only thing I have NOT tried for my pain is any antidepressants ie Cymbalta..but after talking w/a few here I MIGHT in the future....if I can figure out a way to get more relief and make me be able to get out and about more to enjoy life I'm all for it.

I try and take it one day at a time...and do NOT let my PN run my life..it is up to me on how my day goes NOT PN!!!

I wish you the best of luck!!
J

 
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Old 06-14-2011, 10:09 AM   #3
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Re: Is there a difference in pain levels

Diagnosed with P/N in 2008 in both legs & feet.
Was put on anit-depressant Pamelor and it has worked great for me.
Still get some of the sensations of the P/N but for the most part the pain is well under control.

 
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Old 06-14-2011, 10:54 AM   #4
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Re: Is there a difference in pain levels

Quote:
Originally Posted by ncobjim View Post
Diagnosed with P/N in 2008 in both legs & feet.
Was put on anit-depressant Pamelor and it has worked great for me.
Still get some of the sensations of the P/N but for the most part the pain is well under control.
woah!! I've never heard of that....

dumb question.....how is your balance?

My wife talked w/my PCP's office...I just need to see the PA for them to give me a script for Lyricia....I was on it a few years back and liked it(went off due to ins only letting people w/fibro have it)....and might see her to give it a shot again...the Gab does ok...my legs feel heavy and pain is there but not shooting like old days..ie before when I took lesser amounts of Gab

thanks for your post.
J

 
Old 06-15-2011, 05:31 PM   #5
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Re: Is there a difference in pain levels

Have no problems with balance. I do maybe 20 miles a week of brisk walking for exercise. The anti-depressent somehow effects the way the nerve pain that goes to the brain. Not sure if i have that right but i can feel the sensations in my feet that used to be very painful but without the pain. I also have back problems that would put me down for 2 days and then not be able to walk very good for a week or two. I can feel the original pain when the back goes but then i'm not down at all and can walk around ok and it clears up in a day or two. It has worked great for me.

 
Old 06-16-2011, 07:47 AM   #6
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Re: Is there a difference in pain levels

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Originally Posted by ncobjim View Post
Have no problems with balance. I do maybe 20 miles a week of brisk walking for exercise. The anti-depressent somehow effects the way the nerve pain that goes to the brain. Not sure if i have that right but i can feel the sensations in my feet that used to be very painful but without the pain. I also have back problems that would put me down for 2 days and then not be able to walk very good for a week or two. I can feel the original pain when the back goes but then i'm not down at all and can walk around ok and it clears up in a day or two. It has worked great for me.
WOW! That is really great...it sounds like you are on the right combo of things so that you can enjoy a fulfilling life. I'm VERY happy for you.

My balance is awful...I use a shower chair and at night we leave a few nightlights on in the house...w/o it I'm pretty much unable to get around/will fall big time
J

 
Old 06-16-2011, 10:00 AM   #7
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Re: Is there a difference in pain levels

lvp...my husband has severe PN from being Diabetic. Like you, they tried him on many different meds. For many years he took Amitriptyline which seemed to help quite a bit but then sort of lost it's helpfullness. They now have him on Tylenol w/Codeine which helps. He has had the PN for years. He basically has hardly any feeling in his feet and now working up into his hands.

He bought a machine called Re-builder..do a search on it and when his PN gets really bad he uses it. For awhile he was doing it every single night but now is down to 3 nights per week. I really feel for you as I know what your going through as I have told Rising Parrot. Yes it would be great if they had a certain pill that would relieve some of this but so far..no luck.

Those of us who have loved ones with this rotten problem or have it ourselves, know the frustration. Read the posts here and see what others have tried that helps. Some do very well on certain meds and others don't, so it truly is a hit and miss thing.

Wishing you all the best...JJ...
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Last edited by JJ; 06-17-2011 at 09:31 AM.

 
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Old 06-16-2011, 10:04 AM   #8
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Re: Is there a difference in pain levels

Quote:
Originally Posted by ncobjim View Post
Diagnosed with P/N in 2008 in both legs & feet.
Was put on anit-depressant Pamelor and it has worked great for me.
Still get some of the sensations of the P/N but for the most part the pain is well under control.
Never heard of that med. but definately going to do some research on it for hubby. Glad it is helping so much, your very lucky!!

All the best..JJ...
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Old 06-16-2011, 10:06 AM   #9
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Re: Is there a difference in pain levels

I hope that you are able to find the right meds that will help you out. I know the pain from this is just terrible. I believe my PN was caused by really bad blood clots i had in both legs following surgery in 2006. My neuro does not agree with that but says it could be possible. Never went for further testing because the odds were way high that nothing could be done to fix it even if we knew what caused it. If it gets worse the doc is right if it stays as is i'm right. Nothing has changed so far.

Good luck! Something has to be available that can help you out.

 
Old 06-16-2011, 10:52 AM   #10
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Re: Is there a difference in pain levels

Finding the right drug / combo of drugs is a hard one...at this point I take my 1200mg of Gab at 6:30a/11a/3p....BUT sadly is seems my body is wanting something around 7pish....wondering if I should try and take them between more hours....

BUT also as seeing my PCP on Saturday about maybe going back go Lyrica ....can't just give up w/some may other things out there that might help.
J

 
Old 06-16-2011, 12:39 PM   #11
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Re: Is there a difference in pain levels

Quote:
Originally Posted by RisingParrot View Post
Finding the right drug / combo of drugs is a hard one...at this point I take my 1200mg of Gab at 6:30a/11a/3p....BUT sadly is seems my body is wanting something around 7pish....wondering if I should try and take them between more hours....

BUT also as seeing my PCP on Saturday about maybe going back go Lyrica ....can't just give up w/some may other things out there that might help.
J
I have been on Gab for 20 years. Works on Restless leg and I use for Bipolar but they don't prescribe for that much now. I like the drug. I believe the drug does not work much better unless 6 hours apart. I take 4 x day and have to have at bedtime for PN. Does not help much but probally because have been using so long.
What is your total does? I have been at 4800 before, doctor care!!! Never go off suddenly! Very serious effects!
Also do you know about the B12 ? Search the threads if need info because need right kind and to take it properly!
Hope this is useful. Peace.

 
Old 06-16-2011, 02:33 PM   #12
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Re: Is there a difference in pain levels

Quote:
Originally Posted by Capewind View Post
I have been on Gab for 20 years. Works on Restless leg and I use for Bipolar but they don't prescribe for that much now. I like the drug. I believe the drug does not work much better unless 6 hours apart. I take 4 x day and have to have at bedtime for PN. Does not help much but probally because have been using so long.
What is your total does? I have been at 4800 before, doctor care!!! Never go off suddenly! Very serious effects!
Also do you know about the B12 ? Search the threads if need info because need right kind and to take it properly!
Hope this is useful. Peace.
Only reason I was put on it is due to my old Insurance company wouldn't pay for Lyrica unless you had Fibro...my new one doesn't have that policy...hence me seeing the PCP on Saturday...
My total dose is 3600mg a day...interesting thought on having more hours between dose...might try that over the weekend.
Thanks for the heads up about going off it...wouldn't want any bad side effects.

Thanks for the information.
J

 
Old 06-16-2011, 04:27 PM   #13
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Smile Re: Is there a difference in pain levels

Quote:
Originally Posted by lvp714 View Post
I am wandering what the difference is peripheral neuropathy verses small fiber neuropathy. From what I read on this site it appears to me that SFN is very painful, and I never heard of SFN at all. I'm sure any type is of neuropathy is very painful. I had an EMG performed by two different doctors within 3 months of each other and the first one told me I had severe peripheral neuropathy that had showed signs that this disease has progressed to point where the nerve endings that it damaged will not regenerate and the pain I had been having for the last several years ( that my doctors told me was in my head ) was due to this undiagnosed disease.
I went to my PCP to try to get some information how this could have been missed and had the EMG report to show him and I was told that it was unfortunate and he was sorry. He referred me to a neurologist within my insurance plan and that doctor performed a more extensive EMG and confirmed that I had peripheral neuropathy of the legs, feet and problems in my arms with carpletunnel in one arm. Also they
did several blood tests that came back negative. I was told they don't what caused my neuropahty and all that they can do is try to make me comfortable with meds.
I would like to know if this disease starts with SFN and progresses to a more severe stage of neuropathy or something else. We all seem to have different degrees of pain and the doctors throw all these different meds at us that seem to have some kind of side effects instead of prescribing pain meds that deal with pain. I also notice that they expect to take these other meds and deal with these bad side effects if not they will prescribe another kind of meds, but not pain meds. I feel like those of us with neuropathy are guinea pigs for the big drug companies that need to find out what kind of effect these new drugs have on people and we are the ones that get this nasty chance.
I'm sorry if you think I'm babbling on, but after 5 years of pain and side effects with no relief of severe pain I really need some answers about what is going on. I'm so tired of not being able to walk, climb stairs, get comfortable enough to sleep and my doctor saying we will just have to try another drug and getting no reason why or what can be done to stop the nerve damage that is going on in my body.

Hey, babble all you like; you've earned it and so have we all! I know just how you feel. I've seen 3 neurologist at major hospital in large city that claims expertise in PN and after 3 different dxs I'm now what is known as "Idiopathic," which means: what's up doc? They don't know. I've had 4 EMGs and do blood test every 6 months. Nevertheless, it's clear to me that I have a conditions somewhat close to CIDP (Chronic Infamatory Demyelinating Polyneuropathy). My conviction is based on many symptoms, but I'll only state a few. First of all weakness, loss of balance, pain and without treatment, inability to walk. Those 4 by themselves already take me halfway to CIDP. Add to that a new problem: it's affecting my heart by causing problematic PVCs. Thus it may be affecting the autonomic nervous system as well. My cardio has responded by putting me on beta blockers. My neurologist has responded by saying nothing! Apparently she doesn't want to get any deeper into not knowing. But to her credit she has decided to treat anyway because just treating the pain by itself is no answer. If the nerves are being damaged (which may not always be the case) pain or no pain the damage is going to go on.

My research reveals (because neuro says little) that she is treating the possibility of CIDP due to EMGs being ubnormal and some subtle signs of demyelination. Unlike many I started out with the inability to swallow. That was the first sign that sent up a flare! The other symptoms were too subtle for me to pick up on. It was getting worse very quickly. Something had to be done. One neurologist suggested Ivig. I turned that down because he had me on a 10hr drip. My present neuro went for Plasma Exchange. Both treatments are immunomodulatory and are usually only called for when the odds of becoming disabled are higher than the possibility of exposing patient to infections. (Evereyone that comes into my home and wants to shake my hand must wash his/hers first. I've had some words with docs who refused and walked out of their offices or refused to allow them to touch me in ER. Docs are worst offenders in this respect.)

The Demyelinating is caused by antibodies I'm producing that are attacking the nerve myelin thinking of it as a foreign body in the blood stream, thus causing the nerve damage, pain and weakness. The Plasma Exchange cleans 6 pints of blood every 3 weeks to a month for me. Result, I now can swallow much better and have more strength. There is some proof there that I do have CIDP and that symptomatic therapy would have been ineffective. (this is very important to think about.)

Folks we have to do all the research we can and partner with our docs. They don't have the time to read everything, and I believe that neurologist don't know much about PN. It is truly hard to find one that specializes in this neurological disorder. As for Primary docs, they are completely in the dark and should always send one to see neurologist. Mine didn't. I had to do that on my own. There is a lot of information out there, we need to find it, study it and if necessary pass it on to our neurologists. If it's constantly ignored, get another neurologist.

My very best to all,
Awlright.

 
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