arctic,
i too have SFN and my pain is all over. my neuro is going to talk to me about gaberpentin and lyrica. how are the side effects that you experienced on each. was it hard to go off one to the other?
arctic,
i too have SFN and my pain is all over. my neuro is going to talk to me about gaberpentin and lyrica. how are the side effects that you experienced on each. was it hard to go off one to the other?
@albeit....Lyrica is well known to have some nasty and sometimes frightening side effects. Read up and weigh the cost of using this med. Many have found relief in it. Others have suffered mental fog, falls, lost time....a measure of time they cannot account for. Trouble finding correct words when speaking, rapid weight gain.
Some have few side effects and a fair amount of relief. Wanted to share my experience, not to frighten you, but so that if you run onto testimonials such as mine, you'll know it really does happen. I had a few episodes of feeling completely confused. One night I went out to get my dog. Later found myself in bed with tremendous pain in my face and one eye. I was confused and actually scared because I hadn't a clue what happened or how I got in my bed. I got up to see why my face hurt so much and one side was swollen, my eye was black and blue and there was abrasion evident. Husband asked what happened and I was drawing a complete blank. No memory that night. Still no memory. No clue. This has happened to others. Prior to Lyrica, I had never passed out, fainted, or lost time. Doctor took me off my relatively low dose. Some side effects doctors say can't be related, but reading up, I've found it very well could be. Too many people reporting many similar experiences for it NOT to have been Lyrica. Another side effect you'll find people talking about is teeth snapping off. Rotting from inside out. I've read many accounts of people with healthy teeth having lost several within 6-12 months of use.
For every bad review I read, I've read many good reviews. No one knows beforehand how their body will respond. Just a few things to consider. Oh, those that reported the terrible side effects admit that Lyrica was actually great for nerve pain. Me, not so much, but many do get significant relief. Blessings.
@albeit....Lyrica is well known to have some nasty and sometimes frightening side effects. Read up and weigh the cost of using this med. Many have found relief in it. Others have suffered mental fog, falls, lost time....a measure of time they cannot account for. Trouble finding correct words when speaking, rapid weight gain.
Some have few side effects and a fair amount of relief. Wanted to share my experience, not to frighten you, but so that if you run onto testimonials such as mine, you'll know it really does happen. I had a few episodes of feeling completely confused. One night I went out to get my dog. Later found myself in bed with tremendous pain in my face and one eye. I was confused and actually scared because I hadn't a clue what happened or how I got in my bed. I got up to see why my face hurt so much and one side was swollen, my eye was black and blue and there was abrasion evident. Husband asked what happened and I was drawing a complete blank. No memory that night. Still no memory. No clue. This has happened to others. Prior to Lyrica, I had never passed out, fainted, or lost time. Doctor took me off my relatively low dose. Some side effects doctors say can't be related, but reading up, I've found it very well could be. Too many people reporting many similar experiences for it NOT to have been Lyrica. Another side effect you'll find people talking about is teeth snapping off. Rotting from inside out. I've read many accounts of people with healthy teeth having lost several within 6-12 months of use.
For every bad review I read, I've read many good reviews. No one knows beforehand how their body will respond. Just a few things to consider. Oh, those that reported the terrible side effects admit that Lyrica was actually great for nerve pain. Me, not so much, but many do get significant relief. Blessings.
Just to give you another view, I was not getting great relief from gabapenten and switched to lyrica and have had no side-effects (except maybe weight gain) and have gotten great relief. I attend a monthly PN support group near Boston and have to say that Lyrica is loved by 1/2 the people and hated by the other half. I would take the above warnings seriously, but if you are having painful numbing/burning glass feelings in your feet and legs, it really can help.
I switched from max dose gabapenten to max dose lyrica in a day, just switched with no obvious side effects from either. Again, very different results with both. Your insurance will probably make you try gabapenten first as it is cheaper.
@albeit....Lyrica is well known to have some nasty and sometimes frightening side effects. Read up and weigh the cost of using this med. Many have found relief in it. Others have suffered mental fog, falls, lost time....a measure of time they cannot account for. Trouble finding correct words when speaking, rapid weight gain.
Some have few side effects and a fair amount of relief. Wanted to share my experience, not to frighten you, but so that if you run onto testimonials such as mine, you'll know it really does happen. I had a few episodes of feeling completely confused. One night I went out to get my dog. Later found myself in bed with tremendous pain in my face and one eye. I was confused and actually scared because I hadn't a clue what happened or how I got in my bed. I got up to see why my face hurt so much and one side was swollen, my eye was black and blue and there was abrasion evident. Husband asked what happened and I was drawing a complete blank. No memory that night. Still no memory. No clue. This has happened to others. Prior to Lyrica, I had never passed out, fainted, or lost time. Doctor took me off my relatively low dose. Some side effects doctors say can't be related, but reading up, I've found it very well could be. Too many people reporting many similar experiences for it NOT to have been Lyrica. Another side effect you'll find people talking about is teeth snapping off. Rotting from inside out. I've read many accounts of people with healthy teeth having lost several within 6-12 months of use.
For every bad review I read, I've read many good reviews. No one knows beforehand how their body will respond. Just a few things to consider. Oh, those that reported the terrible side effects admit that Lyrica was actually great for nerve pain. Me, not so much, but many do get significant relief. Blessings.
Jmj, thank you for your detailed reply. Im not opposed to taking meds, but always concerned about side effects and coming off them if need be. I’ve been on imipramine for many years along with some cymbalta . I have SFN diagnoses but also have a bunch of herniated discs. I have been told the discs are not causing this pain and SFN I am being told is the cause. I’ve had 4 major pains over my body that’s lasted over a year each prior. While my feet and hands are cold the major pains are actually in my arms and legs with a lot of buzzing/ internal tremors. Started to get some external tremors now and one of the drs wants me off the cymbalta to see if that’s causing the external tremors even though other doc says I’ve been on it so long that isn’t the cause. Sorry for rambling on. Either way the pain some days is so severe I will need to try something. Thank you again .
Just to give you another view, I was not getting great relief from gabapenten and switched to lyrica and have had no side-effects (except maybe weight gain) and have gotten great relief. I attend a monthly PN support group near Boston and have to say that Lyrica is loved by 1/2 the people and hated by the other half. I would take the above warnings seriously, but if you are having painful numbing/burning glass feelings in your feet and legs, it really can help.
Arctic, thank you . I just wrote a detailed response to jmj. I wanted to add that other than buzzing and feeling cold my feet aren’t the pain issue. I get burning on and off throughout my body. I also get this nasty gripping feeling that is part ache part burning that comes on and feel throughout body. I need to see if there is a nyc support group. Btw have you ever tried ivig?
Jmj, thank you for your detailed reply. Im not opposed to taking meds, but always concerned about side effects and coming off them if need be. I’ve been on imipramine for many years along with some cymbalta . I have SFN diagnoses but also have a bunch of herniated discs. I have been told the discs are not causing this pain and SFN I am being told is the cause. I’ve had 4 major pains over my body that’s lasted over a year each prior. While my feet and hands are cold the major pains are actually in my arms and legs with a lot of buzzing/ internal tremors. Started to get some external tremors now and one of the drs wants me off the cymbalta to see if that’s causing the external tremors even though other doc says I’ve been on it so long that isn’t the cause. Sorry for rambling on. Either way the pain some days is so severe I will need to try something. Thank you again .
@albeit.....Sorry if I sounded too negative about Lyrica. All any of us have are our own experiences, really. We can read until we are blind, but nothing written by another speaks for our own self. Each body is different.
So sorry to hear about the pain you are forced to endure. Pain is a funny thing. We all hate it, but we own it. It is very shared, yet very personal.
I was on cymbalta, lyrica, gabapentin, methotrexate, neurontin, prozac....all while searching for that magic remedy....to no avail. I've come to realize that for me there is no magic. I've had a large cerebellar stroke, resulting in many deficits plus constant migraines, trigeminal neuralgia, fibromyalgia (doesn't everyone?lol, very real, and becoming quite common ) thoracic outlet, aneurysm, blood clots, neuropathy in hands and feet, shoulder and back. Had about 18 surgeries, including aneurysm repair and both knees replaced. I am now 60 and the only surgery I will agree to is whatever is needed to save my life.
I am on pain meds, moderate dosage, with ten day breaks between scripts to reset my drug addled brain, lol. Having had injections, therapy of all types, used electric impulse gadget, vitamin therapies, diet makeovers, chiropractics....and the only thing that seems to allow me a bit of normalcy is narcotics, which is far from normal...go figure!. So, as with most who use them, I endure the pain shame game at the pharmacies, with each new doctor I am forced to see, and am very private about my use...except speaking in an anonymous venue, like this forum.
Chronic pain requires that we try and try again until we stumble upon something that works for us. So, as you can see, I'm not against drugs...just the ones that give me black eyes and confusion😭 I sure do hope my list of maladies hasn't bored you to tears. Just wanted you to know you're in...ummmm....good company? Yes! Good company. While you find your way to at least minimal comfort, this place is as good as any to blow off steam and bounce things off of.
JMJ,
i hear you. im sorry you have been through so much. you forget when your in it that there are other both as bad and worse off. im 56 but feel 80. my only hope is that this once again goes away on its own but its very hard right now.
Arctic, thank you . I just wrote a detailed response to jmj. I wanted to add that other than buzzing and feeling cold my feet aren’t the pain issue. I get burning on and off throughout my body. I also get this nasty gripping feeling that is part ache part burning that comes on and feel throughout body. I need to see if there is a nyc support group. Btw have you ever tried ivig?
I am on IVIG right now. Started at a dose of 150 g every 4 weeks. I started just as I was about to buy a wheelchair due to severe cramping in my legs. Extremely painful and I walk very slowly with stiff legs like a zombie. IVIG dramatically improved my symptoms - I could even do short walks with my dog in the woods! It stabilized at a 40-60% improvement of my symptoms. I would get improvement, but in the fourth week my symptoms would return. It turns out that the half life of IVIG is 21 days so this happens with some people. After much ado I got my doctor (who for a variety of reasons doesn't like IVIG and was disappointed when I self-paid for a trial out of my retirement it worked) to increase the frequency to every 3 weeks. Without telling me he reduced the dosing from 150 g to 70g. At this dose I didn't get the bounce and I have been walking like a zombie for the last two infusions. I have gotten him to increase it back to 100g every 3 weeks (133g every 4 weeks) so almost back to what it was so hoping for the next infusion (Monday-Wed) to bring on a miracle. My legs, feet and hands hurt yesterday more than they ever have.
My doctor is now talking about plasmapheresis which is his baby - the opposite of IVIG - take out my blood and remove my bad antibodies rather than adding extra antibodies.
Hoping to do a few more IVIG infusions at the original dose before giving up on IVIG. I know 2 people who use it to live an almost pre-neuropathy life.
Last comment: I usually don't have side-effect to meds but I itch intensely on my entire body below my neck and have developed serious eczema. Can't tell you the number of creams, lotions and pastes that I paster on my body, but so far being able to walk has made it worth it!
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arctic,
i too have SFN and my pain is all over. my neuro is going to talk to me about gaberpentin and lyrica. how are the side effects that you experienced on each. was it hard to go off one to the other?
-
Like -
Helpful -
Hug
1 Reaction@albeit....Lyrica is well known to have some nasty and sometimes frightening side effects. Read up and weigh the cost of using this med. Many have found relief in it. Others have suffered mental fog, falls, lost time....a measure of time they cannot account for. Trouble finding correct words when speaking, rapid weight gain.
Some have few side effects and a fair amount of relief. Wanted to share my experience, not to frighten you, but so that if you run onto testimonials such as mine, you'll know it really does happen. I had a few episodes of feeling completely confused. One night I went out to get my dog. Later found myself in bed with tremendous pain in my face and one eye. I was confused and actually scared because I hadn't a clue what happened or how I got in my bed. I got up to see why my face hurt so much and one side was swollen, my eye was black and blue and there was abrasion evident. Husband asked what happened and I was drawing a complete blank. No memory that night. Still no memory. No clue. This has happened to others. Prior to Lyrica, I had never passed out, fainted, or lost time. Doctor took me off my relatively low dose. Some side effects doctors say can't be related, but reading up, I've found it very well could be. Too many people reporting many similar experiences for it NOT to have been Lyrica. Another side effect you'll find people talking about is teeth snapping off. Rotting from inside out. I've read many accounts of people with healthy teeth having lost several within 6-12 months of use.
For every bad review I read, I've read many good reviews. No one knows beforehand how their body will respond. Just a few things to consider. Oh, those that reported the terrible side effects admit that Lyrica was actually great for nerve pain. Me, not so much, but many do get significant relief. Blessings.
-
Like -
Helpful -
Hug
1 ReactionJust to give you another view, I was not getting great relief from gabapenten and switched to lyrica and have had no side-effects (except maybe weight gain) and have gotten great relief. I attend a monthly PN support group near Boston and have to say that Lyrica is loved by 1/2 the people and hated by the other half. I would take the above warnings seriously, but if you are having painful numbing/burning glass feelings in your feet and legs, it really can help.
-
Like -
Helpful -
Hug
2 ReactionsI switched from max dose gabapenten to max dose lyrica in a day, just switched with no obvious side effects from either. Again, very different results with both. Your insurance will probably make you try gabapenten first as it is cheaper.
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3 ReactionsAgain, very different results with both from the different people in my support group.
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2 ReactionsJmj, thank you for your detailed reply. Im not opposed to taking meds, but always concerned about side effects and coming off them if need be. I’ve been on imipramine for many years along with some cymbalta . I have SFN diagnoses but also have a bunch of herniated discs. I have been told the discs are not causing this pain and SFN I am being told is the cause. I’ve had 4 major pains over my body that’s lasted over a year each prior. While my feet and hands are cold the major pains are actually in my arms and legs with a lot of buzzing/ internal tremors. Started to get some external tremors now and one of the drs wants me off the cymbalta to see if that’s causing the external tremors even though other doc says I’ve been on it so long that isn’t the cause. Sorry for rambling on. Either way the pain some days is so severe I will need to try something. Thank you again .
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Helpful -
Hug
2 ReactionsArctic, thank you . I just wrote a detailed response to jmj. I wanted to add that other than buzzing and feeling cold my feet aren’t the pain issue. I get burning on and off throughout my body. I also get this nasty gripping feeling that is part ache part burning that comes on and feel throughout body. I need to see if there is a nyc support group. Btw have you ever tried ivig?
-
Like -
Helpful -
Hug
1 Reaction@albeit.....Sorry if I sounded too negative about Lyrica. All any of us have are our own experiences, really. We can read until we are blind, but nothing written by another speaks for our own self. Each body is different.
So sorry to hear about the pain you are forced to endure. Pain is a funny thing. We all hate it, but we own it. It is very shared, yet very personal.
I was on cymbalta, lyrica, gabapentin, methotrexate, neurontin, prozac....all while searching for that magic remedy....to no avail. I've come to realize that for me there is no magic. I've had a large cerebellar stroke, resulting in many deficits plus constant migraines, trigeminal neuralgia, fibromyalgia (doesn't everyone?lol, very real, and becoming quite common ) thoracic outlet, aneurysm, blood clots, neuropathy in hands and feet, shoulder and back. Had about 18 surgeries, including aneurysm repair and both knees replaced. I am now 60 and the only surgery I will agree to is whatever is needed to save my life.
I am on pain meds, moderate dosage, with ten day breaks between scripts to reset my drug addled brain, lol. Having had injections, therapy of all types, used electric impulse gadget, vitamin therapies, diet makeovers, chiropractics....and the only thing that seems to allow me a bit of normalcy is narcotics, which is far from normal...go figure!. So, as with most who use them, I endure the pain shame game at the pharmacies, with each new doctor I am forced to see, and am very private about my use...except speaking in an anonymous venue, like this forum.
Chronic pain requires that we try and try again until we stumble upon something that works for us. So, as you can see, I'm not against drugs...just the ones that give me black eyes and confusion😭 I sure do hope my list of maladies hasn't bored you to tears. Just wanted you to know you're in...ummmm....good company? Yes! Good company. While you find your way to at least minimal comfort, this place is as good as any to blow off steam and bounce things off of.
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2 ReactionsJMJ,
i hear you. im sorry you have been through so much. you forget when your in it that there are other both as bad and worse off. im 56 but feel 80. my only hope is that this once again goes away on its own but its very hard right now.
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Helpful -
Hug
2 ReactionsI am on IVIG right now. Started at a dose of 150 g every 4 weeks. I started just as I was about to buy a wheelchair due to severe cramping in my legs. Extremely painful and I walk very slowly with stiff legs like a zombie. IVIG dramatically improved my symptoms - I could even do short walks with my dog in the woods! It stabilized at a 40-60% improvement of my symptoms. I would get improvement, but in the fourth week my symptoms would return. It turns out that the half life of IVIG is 21 days so this happens with some people. After much ado I got my doctor (who for a variety of reasons doesn't like IVIG and was disappointed when I self-paid for a trial out of my retirement it worked) to increase the frequency to every 3 weeks. Without telling me he reduced the dosing from 150 g to 70g. At this dose I didn't get the bounce and I have been walking like a zombie for the last two infusions. I have gotten him to increase it back to 100g every 3 weeks (133g every 4 weeks) so almost back to what it was so hoping for the next infusion (Monday-Wed) to bring on a miracle. My legs, feet and hands hurt yesterday more than they ever have.
My doctor is now talking about plasmapheresis which is his baby - the opposite of IVIG - take out my blood and remove my bad antibodies rather than adding extra antibodies.
Hoping to do a few more IVIG infusions at the original dose before giving up on IVIG. I know 2 people who use it to live an almost pre-neuropathy life.
Last comment: I usually don't have side-effect to meds but I itch intensely on my entire body below my neck and have developed serious eczema. Can't tell you the number of creams, lotions and pastes that I paster on my body, but so far being able to walk has made it worth it!
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Like -
Helpful -
Hug
2 Reactions