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Old 11-22-2011, 07:07 AM   #1
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WHAT THE HECK "p n why do we have to chase "

Now,after over 1 year latter two E M Gs and several blood tests I have been diagnosed with sensori-motor peripheral neuropathy. I have been prescribed gabapentin, zonegran, cymbalta, and prednisone that didn't help or just caused bad side effects and "the pain remains the same" also I have gained 50 pounds since the start, August 2010. Due to my PCP and Neurologist, and "getting no satisfaction" I had been referred to a pain manangement clinic. The pain center confirmed that I have peripheral neuropathy and after talking to the doctors and thier in house Anesthesia and psychiatry professor I was told that I had legitimate pain issues and I was given a run around by my previous doctors and no help. Now after waiting 2 weeks, I go back to pain center yesterday after the last visit when I was told that they would come up with a plan to help me with my pain problems. The doctor tells me that they will prescribe me percocet for pain management,( 3- 5 mg a day ) but now I need too start over again and find a doctor that can help find the cause of P N pain, because they are a pain center and pain meds are a band aid and I need to find the reason to what is causing the pain.
The percocet help better than the other meds., but my feet still feel frozen at times especially at night and constant leg and knee pain, and having problems climbing just a couple of stairs. I'm trying to stay positive and move forward, my first neurologist told me that my P N is idiopathic and couldn't find a cause and all that can be done is to try to find a combo of meds to make me comfortable. Now I'm told I need to find a cause that is giving me the pain. I'm sure the weight gain doesn't help, but I would need more that 3 pain killers to help me to exercise and get around but I'm afraid to ask for more pain meds in fear of getting labeled a drug seeker.
I'm going to slow eating and change eating habits in hope of losing some weight along with walking for exercise as tolerated. As far as trying to find new doctors to find pain cause I just don't know.
I had come to terms that I have P N and just deal with it, but to start out again thinking that someone can find a cause of the p n pain and going through more testing and maybe getting hope for a cure sounds like I would be setting myself up for failure with false hope.
Is this our life sentence of P N chasing for a cause of P N pain and hoping that it can be stopped, with a happy ending getting all better without pain? I really would appreciate any feedback about this, as I'm tired of tying knots and hanging on when I reach the end of my rope!
THANK-YOU to all that listen. lvp714

 
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Old 11-22-2011, 09:13 AM   #2
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Re: WHAT THE HECK "p n why do we have to chase "

VERY sorry you have been going through all this....

Around 07 my Feet started to hurt...since then it has moved up to mid calf and started to affect my hands...

I've had a few Zap Tests(as I call them), Probably 10-15 tubes of blood for tests, a Spinal Tap and they removed part of my left ankle to do a biopsy..and sadly like you I too have idiopathic PN...I've seen 4 Neurologists in this time....and I'm TIRED of being told "we can't treat your PN until we know why you have it"........

I take the max dose of Neurontin which is 3600mg a day...I've tried Lyrica but didn't find that it helped me much...was also on Prednisone for my swelling of my feet..but didn't do much for me... Prednisone could for SURE be some of the cause of your weight gain.

It for sure does at times feel like we are chasing our tail...I haven't tried a pain clinic yet BUT I'm due to see either my 4th Neurologist or try for a 5th...and at that time I'm NEEDING something more for my pain AND I've got to get something to help me sleep...I can only sleep like 1 1/2-2hrs at a time and I'm spent.

Try and stay positive....and we can hope you find the answer and get back to your old self...know you are NOT alone!!!

Post up and let us know how you progress.
J

 
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lvp714 (11-22-2011)
Old 11-22-2011, 08:21 PM   #3
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Re: WHAT THE HECK "p n why do we have to chase "

Hi ivp and risingParrot

ivp, your story sound very similar to mine and risingParrot, my neuropathy has also started "to climb".

The frustration is unbelievable! I really am sorry that are suffering so much!

I tried all of the meds too, wasting thousands of dollars and felt like guinea pig. Thru 2 neurologists, 2 rheumatologists and several other assorted drs, I finally was told that pain management was my only option left.

We don't have pain management in BC, Canada, like in the US. My primary doctor Rx's all of my pain meds. That too has been a journey of pain and frustration. I started on a very small dose of morphine and went all of the way up to 120 mgs per day. It did nothing for the pain and caused me to be a miserable snappy woman, really different than my usual laid back self. But getting to that dosage took a very long time. You have started out on a small dose of the percosets, ivp, hopefully it will be raised as your body adjusts to the medication. Finally my dr switched me over to Dilaudid. I tried the long acting version but it was too expensive to continue on.

I also gained quite a lot of weight, due in part to the prednisone, but also because of some of the meds I tried like Lyrica and Cymbalta. It is quite frustrating not to be able to lose it again and I applaud you for committing to eating better and trying to exercise!

My doctor wanted me to give Neurontin another try, so I reluctantly agreed to give it another go. I tried it when I was first diagnosed with PN 6 years ago. After so many medication trials it is difficult to remember what the side effects for me were. I took one capsule and immediately got an upset tummy, heart palpitations and laid awake feeling just awful. It never caused one bit of drowsiness which I was hoping was a side effect as I am not sleeping!! So I am not going to take it anymore.

My PN is related to my rheumatoid arthritis, it is auto immune. But some people never do find a cause. I can understand how frustrated you much be to be back at square one!!
So far mine has resisted any medications, even the opioids don't give much relief.
All I can say is I really feel for you! Are you getting proper rest?? Or does pain wake you up at night? I know for me, that is a big one. If I can't sleep, then the pain seems so much worse and it is a cycle that goes on and on!
Please know that you are not alone. Many here have such good advice to give and have had similar experiences. Take very good care of yourself. I wish I could help more, but I have had very good support on these boards so come here often! It helps!
Best wishes to all.
Daisy

 
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lvp714 (11-23-2011)
Old 11-23-2011, 06:43 AM   #4
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Re: WHAT THE HECK "p n why do we have to chase "

Daisy...Thanks for your post...I too have a major issue w/sleep...I can only sleep for an hour or so before I wake and that goes on all night...rarely can I get a good nights sleep which sucks and I'm wanting to talk w/my doctor again about it...they suggested that I try a Neurontin before bed which I have but like you it does NOT help..I've taken it for a while and it has never made me sleepy like it does some.l

This board for sure helps me a lot...people are nice and can sadly relate w/a lot of issues I deal with.

Hope everyone has a pain free Wednesday and rest of the week.
J

 
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Old 11-23-2011, 04:09 PM   #5
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Re: WHAT THE HECK "p n why do we have to chase "

Rp you really should try what I've suggested. Its a fairly mild remedy for sleep issues and it has worked for me now 3 straight years and I haven't even had to change the dosage. I had terrible sleep issues before they prescribed the right combination of meds. and I was a basket case until then. In your case Rp you would take your evening dosage of neurontin(in my case lyrica) with 1-25mg tablet of Elavil and 2 benadryl and I promise you will sleep like a baby. The combo of those 3 meds does the trick without being real drowsy in the morning. Honestly if I hadn't started getting some sleep I don't think I would be here now. If I'm having a real bad pain day which most are these days I actually look forward to going to bed and taking a break from the constant pain unfortunately the pain will still be there to wake you but at least you will of had some sleep. Run it by your Dr. Rp, I'm sure they would let you give it a try. Also the benadryl is nothing more than Excedrin PM without the acetaminophen. Its just the drowsy medication in all the PM meds. Anyone that is not getting good sleep run it by your Dr's, I'm pretty sure you'll be glad you did. Hope you all have a great turkey day.

Last edited by captinsane1; 11-23-2011 at 04:11 PM.

 
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Old 12-01-2011, 08:42 AM   #6
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Re: WHAT THE HECK "p n why do we have to chase "

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Originally Posted by captinsane1 View Post
Rp you really should try what I've suggested. Its a fairly mild remedy for sleep issues and it has worked for me now 3 straight years and I haven't even had to change the dosage. I had terrible sleep issues before they prescribed the right combination of meds. and I was a basket case until then. In your case Rp you would take your evening dosage of neurontin(in my case lyrica) with 1-25mg tablet of Elavil and 2 benadryl and I promise you will sleep like a baby. The combo of those 3 meds does the trick without being real drowsy in the morning. Honestly if I hadn't started getting some sleep I don't think I would be here now. If I'm having a real bad pain day which most are these days I actually look forward to going to bed and taking a break from the constant pain unfortunately the pain will still be there to wake you but at least you will of had some sleep. Run it by your Dr. Rp, I'm sure they would let you give it a try. Also the benadryl is nothing more than Excedrin PM without the acetaminophen. Its just the drowsy medication in all the PM meds. Anyone that is not getting good sleep run it by your Dr's, I'm pretty sure you'll be glad you did. Hope you all have a great turkey day.
Hey captinsane1,

I just added your suggestion to my notes in iPhone about the 25mg of Elavil and Benedryl for sleep to talk w/my doctor about....seems my pain level has sadly increased...so will see what they think...and I NEED to take something w/o Aspirin due to me being on blood thinner.

Thanks for all the info...I do appreciate it.

My Turkey day was great...as was the weekend...hope your was too.
J

 
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Old 12-01-2011, 01:52 PM   #7
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Re: WHAT THE HECK "p n why do we have to chase "

Hey Rp my turkey day was also good,anytime I get to see my kids and family is a great day, glad to hear you had a good one as well. As far as my suggestion goes, I think it well help you greatly at night. You already take the nuerontin and adding elavil and benadryl is a pretty mild thing to try for sleep. I know I would try this anyday before I would try something like ambien. Good thing about it RP if it doesnt work the first night then forget it and go on to something else but I think you will be pleasantly surprised and both those meds are dirt cheap. Remember Rp I take my evening dose of lyrica(in your case neurontin)at the same time as the other 2 meds. It still takes me awhile to get to sleep but once I do its all good till morning. Goodluck Rp, I know what your going through and without good sleep its a living hell.

 
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Old 12-02-2011, 06:27 AM   #8
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Re: WHAT THE HECK "p n why do we have to chase "

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Originally Posted by captinsane1 View Post
Hey Rp my turkey day was also good,anytime I get to see my kids and family is a great day, glad to hear you had a good one as well. As far as my suggestion goes, I think it well help you greatly at night. You already take the nuerontin and adding elavil and benadryl is a pretty mild thing to try for sleep. I know I would try this anyday before I would try something like ambien. Good thing about it RP if it doesnt work the first night then forget it and go on to something else but I think you will be pleasantly surprised and both those meds are dirt cheap. Remember Rp I take my evening dose of lyrica(in your case neurontin)at the same time as the other 2 meds. It still takes me awhile to get to sleep but once I do its all good till morning. Goodluck Rp, I know what your going through and without good sleep its a living hell.
Great to hear.

I even mentioned to K last night about adding my "notes" w/your information.

I like that it is both cheap and like you said I don't need to add a major drug like ambien to my mix...

Between the pain and not getting good sleep it has been rough for me...and on top of that the past few weeks I'm had this little "cold" thing..not sure if I'm trying to get sick or just allergies messing w/me....boss says it is due to me wearing cargo shorts year round LOL

Nice talking w/you/seeing you around...thanks again.

Hope you have a great/pain free Friday and Weekend.
J

 
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Old 12-02-2011, 05:17 PM   #9
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Re: WHAT THE HECK "p n why do we have to chase "

Hi captainsane, rp ivp and all other sfn sufferers!!
I tried the Benedryl last night but I didn't have any luck with it by itself. So tonight I will add the Elavil and see. My Elavil Rx is for 10 mgs, so I hope that it helps. I would like to stop the Ambien as I am probably getting psychologically addicted. I seem to feel I will just not sleep if I don't take it. And then I lay awake all night just to prove it to myself lol!
But with Ambien I get a good 5 hour stretch before the pain wakes we. I know my dr doesn't feel that Ambien is a long term solution, so I am thankful you mentioned the Benedryl.
It is so strange to me that my body reacts so differently to meds. Things that are supposed to make me drowsy never do. Ativan has no effect on me at all, and my pain medication that has a warning that it will make me drowsy, keeps me awake if I take it after 2 in the afternoon. Darned annoying!
My SFN is at the worst it has been for sometime now.
But then again so is my arthritis, so it all goes hand in hand I guess.
Best wishes to all
Cheers
Daisy

 
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Old 12-02-2011, 06:00 PM   #10
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Re: WHAT THE HECK "p n why do we have to chase "

Hate to hear to youre having a hard time Daisy and you also Rp. I think if you both can improve your sleep pattern it will help with your over all quality of life, it sure improved mine and it may be that its just because I'm sleeping longer but I will take anything at this point and you all know what I mean. One thing Daisy, I dont know exactly what you take overall but just remember this, At bedtime I take my 200 mg of Lyrica, 25mg Elavil and 2 benadryl. Im convinced its a combination of the 3 meds together and the strength and amount of each that makes it work so well and has for years now. To prove this I tried eliminating 1 and just taking 2 and in each combo that I tried my quality of sleep was drastically reduced. If you dont take lyrica maybe you take neurontin like Rp which I think is close enough to Lyrica to get the same effect as i do. And just remember if you get the ok to try it and it doesn't work right away then you can scrap the idea and move on to something else. I got results the first night I tried it and remember that night like it was yesterday, as I had not had a good night sleep in several years, probably very similar to you and RP. Goodluck to you both, I know you could use it right about now.

 
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Old 12-05-2011, 06:52 AM   #11
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Re: WHAT THE HECK "p n why do we have to chase "

captinsane1, Thanks for the advice and kind words.
J

 
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