advertisement
Reply
 
Thread Tools Display Modes
Old 05-15-2013, 07:04 PM #1
Katie O Katie O is offline
Junior Member
 
Join Date: Sep 2012
Posts: 7
10 yr Member
Katie O Katie O is offline
Junior Member
 
Join Date: Sep 2012
Posts: 7
10 yr Member
Default I need some hope.

Hello, I am not sure where to start. I am in my third day of withdrawl from Lyrica. I couldn't think straight, have terrible shakes, I sweat and then am freezing, I have diarrhea that I can't seem to control, and terrible, terrible anxiety along with depression. I cry at everything. I found the support group and it has given me hope from your experiences. I have been on gabapentin for neuropathy for almost a year. The burning and pain just keeps getting worse. Gabapentin makes me so tired at first but I guess my body adjusts but then my feet get worse and my neurologist increases it again. So I heard from an aquaintance that Lyica is wonderful. LOL I was only on it for a short time when the anxiety and tremors started (I'm still on the gabapentin at the same time) This was over the weekend and my neurologist isn't in on Mondays,so I quit it cold turkey. By Monday I thought I was going to die. I called my family doctor who gave me a prescription for the anxiety. Today is Wednesday and my thinking is better and the anxiety is under control. So I know I just have to wait this out but I wonder for how long? I thought I had new hope for my neuropathy through Lyrica but now that is gone. I am so depressed. I am a 64 year old female and have so much I wanted to do in retirement but I feel as if I'll be in a wheelchair if the neuropathy progresses this rapidly with no hope. Thank you for listening. Katie O
Katie O is offline   Reply With QuoteReply With Quote

advertisement
Old 05-16-2013, 01:35 AM #2
Beachbum65 Beachbum65 is offline
Junior Member
 
Join Date: Mar 2013
Posts: 43
10 yr Member
Beachbum65 Beachbum65 is offline
Junior Member
 
Join Date: Mar 2013
Posts: 43
10 yr Member
Default Ok Katie there is hope

Quote:
Originally Posted by Katie O View Post
Hello, I am not sure where to start. I am in my third day of withdrawl from Lyrica. I couldn't think straight, have terrible shakes, I sweat and then am freezing, I have diarrhea that I can't seem to control, and terrible, terrible anxiety along with depression. I cry at everything. I found the support group and it has given me hope from your experiences. I have been on gabapentin for neuropathy for almost a year. The burning and pain just keeps getting worse. Gabapentin makes me so tired at first but I guess my body adjusts but then my feet get worse and my neurologist increases it again. So I heard from an aquaintance that Lyica is wonderful. LOL I was only on it for a short time when the anxiety and tremors started (I'm still on the gabapentin at the same time) This was over the weekend and my neurologist isn't in on Mondays,so I quit it cold turkey. By Monday I thought I was going to die. I called my family doctor who gave me a prescription for the anxiety. Today is Wednesday and my thinking is better and the anxiety is under control. So I know I just have to wait this out but I wonder for how long? I thought I had new hope for my neuropathy through Lyrica but now that is gone. I am so depressed. I am a 64 year old female and have so much I wanted to do in retirement but I feel as if I'll be in a wheelchair if the neuropathy progresses this rapidly with no hope. Thank you for listening. Katie O
The first thing you need to do is arm yourself with knowledge as you will find here as no other Dr. Office will tell you from my experience. Keep trying as you are your best advocate . Read a lot about your neuropathy there is a wealth of people and information here. I totally understand how you feel now, Lyrica never worked for me but everybody is different. Personally , I have sensory neuropathy for about 5 years now and I feel pain control and diet is the key for me. Low carb low fat gluten free is hard to do but I try. I never heard of neuropathy a few years ago and now it is my life , there are something's you can do to make your life better before resulting to the so called " Chair " . Get your blood drawn and get tested from A to Z. Try to find out if it is a vitamin or a mineral, heavy metals or toxins can play a major role in this. As for me nobody knows ,but my nerves are turning back on only after a few months of supplements and change of diet. It will take time and Never give up , God bless you ! Peace !
Beachbum65 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Katie O (05-17-2013), MelodyL (06-01-2013)
Old 05-16-2013, 07:24 AM #3
Katie O Katie O is offline
Junior Member
 
Join Date: Sep 2012
Posts: 7
10 yr Member
Katie O Katie O is offline
Junior Member
 
Join Date: Sep 2012
Posts: 7
10 yr Member
Default

Quote:
Originally Posted by Beachbum65 View Post
The first thing you need to do is arm yourself with knowledge as you will find here as no other Dr. Office will tell you from my experience. Keep trying as you are your best advocate . Read a lot about your neuropathy there is a wealth of people and information here. I totally understand how you feel now, Lyrica never worked for me but everybody is different. Personally , I have sensory neuropathy for about 5 years now and I feel pain control and diet is the key for me. Low carb low fat gluten free is hard to do but I try. I never heard of neuropathy a few years ago and now it is my life , there are something's you can do to make your life better before resulting to the so called " Chair " . Get your blood drawn and get tested from A to Z. Try to find out if it is a vitamin or a mineral, heavy metals or toxins can play a major role in this. As for me nobody knows ,but my nerves are turning back on only after a few months of supplements and change of diet. It will take time and Never give up , God bless you ! Peace !
Thank you so much. I will take your advice and it does give me hope. Katie O
Katie O is offline   Reply With QuoteReply With Quote
Old 05-16-2013, 12:33 PM #4
FiestLady24 FiestLady24 is offline
Junior Member
 
Join Date: May 2013
Location: ILL
Posts: 24
10 yr Member
FiestLady24 FiestLady24 is offline
Junior Member
 
Join Date: May 2013
Location: ILL
Posts: 24
10 yr Member
Default

Hi Katie, I feel for your pain. I am going through the same thing. Im very frustated with the Doctors too. I also go through spurts of crying spells and sadness. I get very down and discouraged when I see other women my age living an acvtive lifestyle because it just reminds me that my body has betrayed me. People say get pro-active. Its hard when your in pain all the time. It makes you very low energy. I try to put a smile on my face day for my family. But I have days inside that I just want to drop to my knees. I wish I had more people to talk to in the flesh. I love being around people. I want to see other people just like me, maybe it would be more hopeful. Hang in there Katie.
FiestLady24 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Katie O (05-17-2013)
Old 06-01-2013, 01:06 PM #5
Katie O Katie O is offline
Junior Member
 
Join Date: Sep 2012
Posts: 7
10 yr Member
Katie O Katie O is offline
Junior Member
 
Join Date: Sep 2012
Posts: 7
10 yr Member
Default I am so discouraged

I'm not sure if this will add onto my previous thread. I just can't seem to get the hang of using Neurotalk. I respond to someone and then can't find it the next day. Maybe its the 1200 mg of Neurotin that keeps my mind so clouded. I'm finally over the withdrawl from Lyrica. Thought I was dying because I quit it cold turkey. I started taking something called Fast Start nerve health support made by Plexus. It is so expensive but I am so desperate to get some relief from the burning, pain and stiffness in my feet and legs. At first I thought it was helping but now i'm not so sure but I'm afraid to stop it. I've been up the past few nights with so much pain. Everytime I call my doctor she just increases the Neurotin 300 more mg which seems to help for about 5 or 6 weeks and then it's like the Neuropathy is trying to get ahead of the medicine and the pain is back again. I know you can take 3000+mg of Neurotin but I feel like a zombie now and can't imagine 3000mg effects on me. Where is the quality of life when you have to deal with this everyday? When in the past and times were tough I always thought of what my dear mother told me "This, too, shall pass." But this is never going to pass it is only going to get worse because there is no cure. I feel so guilty complaining like this when I know there are so many people out there suffering much worse than I am. I have benn reading about B12 and am going to try that route. There has to be something beside the pain pills to deal with this. Thanks for listening, it just helps to vent sometimes. Blessings, Katie O
Katie O is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (06-01-2013)
Old 06-01-2013, 01:31 PM #6
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
Default Hi Katie

You will catch on quickly to Neuro Talk. Most responses go right into your e-mail and you just click on the highlighted NT address. That will bring you to the conversation where people respond to you.
Please do not give up. You need some more help with pain, and your depression will lesson. Pain removes quality of life. Please seek another pain specialist, who can give a bit more help with the PN. Have you tried compounded agents? Or lidoderm patches?. Both these things work a bit for me to make it at least a bit more tolerable. I also do use a narcotic called narco, when I really have to. I do feel your sorrow over what has happened to you. Know there is more help available with the right team of doctors. It may take some effort to find someone more familiar with PN.
I do take some suppliments which seem to help over the last year. My doctor is a physiatrist, who does specialize in pain management. I was told not all physiatrists specialize in this field. You may want to ask over the phone if you should see a doctor like this. A physiatrist treats the whole person, right down to the depression.... Don't give up. fight for your quality of life. I couldn't walk last year very well and had to use a wheelchair. this year I am in the garden, on my butt, but still being active. I am 62 this year. I wish you all the best, and hope you get some more help. ginnie
ginnie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
BonDon (06-17-2013), calyn (06-09-2013)
Old 06-01-2013, 07:03 PM #7
Aussie99's Avatar
Aussie99 Aussie99 is offline
Member
 
Join Date: Aug 2006
Location: Australia
Posts: 933
15 yr Member
Aussie99 Aussie99 is offline
Member
Aussie99's Avatar
 
Join Date: Aug 2006
Location: Australia
Posts: 933
15 yr Member
Default

Quote:
Originally Posted by Katie O View Post
Hello, I am not sure where to start. I am in my third day of withdrawl from Lyrica. I couldn't think straight, have terrible shakes, I sweat and then am freezing, I have diarrhea that I can't seem to control, and terrible, terrible anxiety along with depression. I cry at everything. I found the support group and it has given me hope from your experiences. I have been on gabapentin for neuropathy for almost a year. The burning and pain just keeps getting worse. Gabapentin makes me so tired at first but I guess my body adjusts but then my feet get worse and my neurologist increases it again. So I heard from an aquaintance that Lyica is wonderful. LOL I was only on it for a short time when the anxiety and tremors started (I'm still on the gabapentin at the same time) This was over the weekend and my neurologist isn't in on Mondays,so I quit it cold turkey. By Monday I thought I was going to die. I called my family doctor who gave me a prescription for the anxiety. Today is Wednesday and my thinking is better and the anxiety is under control. So I know I just have to wait this out but I wonder for how long? I thought I had new hope for my neuropathy through Lyrica but now that is gone. I am so depressed. I am a 64 year old female and have so much I wanted to do in retirement but I feel as if I'll be in a wheelchair if the neuropathy progresses this rapidly with no hope. Thank you for listening. Katie O

Hi Kate,
Going cold turkey on drugs like Lyrica is very hard on the body. Cutting down slowly would have been the preferred way to discontinue the drug. Be careful with The anxiety drugs as they too can be habit forming.

I just wanted to let you know that I too had progressive PN that was very bad and extremely painful, and I never needed a wheelchair 8 years on. The thousands of posts i have read in 8 years on the forum hardly anyone needed a wheelchair. .Please try to get that thought out of your head. You will get better and you will enjoy your retirement and do all the things you want as soon as you get your pain under control. This is the key for you (pain management).
Aussie99 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (06-02-2013)
Old 06-02-2013, 01:08 AM #8
SeattleDDC SeattleDDC is offline
New Member
 
Join Date: Jun 2013
Posts: 4
10 yr Member
SeattleDDC SeattleDDC is offline
New Member
 
Join Date: Jun 2013
Posts: 4
10 yr Member
Default

Not trying to hijack this thread, but I can't figure out how to start a new thread. But it seems like I'm in the same situation as the OP. 49 year old male diagnosed with Peripheral Neuropathy 1 1/2 years ago. Tons of tests with no cause found. I take Lyrica with no help. I took Gabapentin previously, but again, no help.
I went to a chiropractor last year when I was first diagnosed and he said he could cure it with lasers. That was pure snake oil. So bottom line, what do I do? I've been prescribed Cymbalta previously, but the insurance company doesn't want to give it to me. Should I be on opiates for pain? I'm afraid that will tear up my liver. Man, this is frustrating. Am I looking forward to the next 30-40 years of this? Basically, my life is work, then going home to ice my feet. I don't want to complain to my wife, because it won't do any good, and she wouldn't understand anyway. Any help is appreciated.
SeattleDDC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (06-02-2013)
Old 06-02-2013, 05:57 AM #9
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

To start a new thread, you go to the first page of any forum.
This PN forum the link is:
http://neurotalk.psychcentral.com/forum20.html

OR if you look up to the top left of this page, where it says,
Neurotalk support groups... click on the >Peripheral Neuropathy
underlined term and it will take you to the first page also.

Most underlined things here are clickable.
If you click on NeuroTalk Support Groups...it will take you to the main index page for all forums. You can choose one you want to see and click it.

Quote:
Originally Posted by SeattleDDC View Post
Not trying to hijack this thread, but I can't figure out how to start a new thread. But it seems like I'm in the same situation as the OP. 49 year old male diagnosed with Peripheral Neuropathy 1 1/2 years ago. Tons of tests with no cause found. I take Lyrica with no help. I took Gabapentin previously, but again, no help.
I went to a chiropractor last year when I was first diagnosed and he said he could cure it with lasers. That was pure snake oil. So bottom line, what do I do? I've been prescribed Cymbalta previously, but the insurance company doesn't want to give it to me. Should I be on opiates for pain? I'm afraid that will tear up my liver. Man, this is frustrating. Am I looking forward to the next 30-40 years of this? Basically, my life is work, then going home to ice my feet. I don't want to complain to my wife, because it won't do any good, and she wouldn't understand anyway. Any help is appreciated.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (06-02-2013)
Old 06-02-2013, 09:20 AM #10
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
Default Hi Seattle DDC

Don't worry about posting anywhere you want to. The link MrsD gave you will get you to a start thread. So sorry you are enduring this PN pain. I have a very mild opiate I take when really bad. You may want to consider lidoderm pain patches, or a compounded agent that reduces your pain. You are very right the key to a better life is in good pain management. ginnie
ginnie is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Hope to find hope here Delaine New Member Introductions 4 12-01-2012 08:10 PM
Hope freezerdoor Traumatic Brain Injury and Post Concussion Syndrome 12 01-07-2012 12:28 AM
i hope im doing this right thunderqueen Traumatic Brain Injury and Post Concussion Syndrome 2 08-26-2010 12:25 PM
Hope colombiangirl1 Creative Corner 0 04-14-2007 07:21 PM


All times are GMT -5. The time now is 02:57 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.