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Old 05-15-2013, 07:04 PM #1
Katie O Katie O is offline
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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
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Old 05-16-2013, 01:35 AM #2
Beachbum65 Beachbum65 is offline
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Default Ok Katie there is hope

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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 !
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Old 05-16-2013, 07:24 AM #3
Katie O Katie O is offline
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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
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Old 05-16-2013, 12:33 PM #4
FiestLady24 FiestLady24 is offline
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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.
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Old 06-02-2013, 05:54 PM #5
tashabree tashabree is offline
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Dear fiestlady, I totally understand I find myself crying all the time and I also try to put on a happy face for my family. I know it is so hard. Its frustrating knowing you have so many goals and things you want to do and can't do them. I look at my legs and feet and I feel like they aren't my own. I try and remind myself sometimes that it will be ok to have faith in God and know he will not put more on us than we can bear. So, if that is the case we must be pretty strong, right? It is so comforting to know that someone else feels the way I do, and understands. Im only 29 and had just got a job offer as a nurse at the local hospital and had to turn it down because of my neuropathy it really upset me that I had worked so hard for something and now everything has changed and my body has failed me. Now I find myself confused and wondering where do I go from here.
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Old 06-02-2013, 06:53 PM #6
ginnie ginnie is offline
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Default Hi tashabree

I do understand about getting sick young. I was 29 too, when I got an auto immune disease. I would have been a teacher. I am sorry that happened to you. I hope some window of opportunity happens for you, even if your body isn't behaving. Lets hope this PN gets some attention in the medical field, and can present some hope for all with PN, RSD, Fibro and the ones that are Neurological in nature. Seems like there are alot of us. Take care. ginnie
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Old 06-05-2013, 03:27 PM #7
Katie O Katie O is offline
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Originally Posted by FiestLady24 View Post
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.
Thank you for responding. It makes me feel as if I'm not alone and other people do understand. I am feeling somewhat better since the dr increased my Neurotin. The pain is more undercontrol but the medication just makes you (as one reader put it) "stupid." LOL And that really helped me explain how I feel on this drug. My head is in a fog and I do "stupid" things. But now I smile when I mess up and know I am not alone and just keep going. I hope you find relief for your pain. Blessings, Katie O
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Old 06-01-2013, 01:06 PM #8
Katie O Katie O is offline
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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
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Old 06-01-2013, 01:31 PM #9
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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
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Old 06-02-2013, 06:02 PM #10
tashabree tashabree is offline
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Default Hang in ther

Hi katie, Dont ever feel like your complaining or that your pain and what your going through isn't just as important as anyone elses. Everyone who is going through this understands and I promise you your not alone. I found that out today your story has helped me and I thank you for that. I also have been told this too shall pass but it doesn't feel like it and I know it wont I guess we just have to figure out how to live with it. I just don't know how to yet and like you said the medicine feels like it has stoped working and my doctor doesn't seem to want to give me pain management and I stay in tears I hurt so bad I don't know what to do either.
Quote:
Originally Posted by Katie O View Post
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
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