Aa
Forgive me for a minute - have jerky questions
Hi All,
Sometimes, I revert to my old ways, but decided to share this with all of you because I know you will give me a straightforward response and thoughts.
I have problems with nervy, spasmy, what feels like water moving around, pressure, positional induced feelings directly in my spine in my mid- and lower back area. The skin burns along with it, and it has not gone away since mid to end of Feb. While sitting, re-positioning helps, when walking it is not as bad, but it's always there. Standing still is really bad. I could go on and on w/symptoms, but hoping you get the gist from briefly describing.
My Doc has prescribed Lyrica. Says it's due to the damage in my spinal cord (there is a large lesion in there at the C5 level).
For those that know me, I'm stubborn, always reluctant to try new meds, hesitant to trust that I cannot change, or that this cannot be FIXED. To be honest, I feel there is something they are missing going on in there.
However, I'm faced not with getting through my days with this. My primary question is (oh, and it's a doosey). . Will the Lyrica hurt me if the Doc is wrong and it is something else? Will the Lyrica not work if it is something else, OH, and will the Lyrica only make it go away if the Doc is right?
Oh, and I'm scared of the side affects too. They say allergic reaction, edema, swelling, etc. I am going to challenge Rebif in the near future, and don't want to have too many reactions to each med to worry about....
Told you it was a doosey, I'm sorry. Whew.... good luck... I'm a nit aren't I?? LOL
Love ya's!
-SL
Sometimes, I revert to my old ways, but decided to share this with all of you because I know you will give me a straightforward response and thoughts.
I have problems with nervy, spasmy, what feels like water moving around, pressure, positional induced feelings directly in my spine in my mid- and lower back area. The skin burns along with it, and it has not gone away since mid to end of Feb. While sitting, re-positioning helps, when walking it is not as bad, but it's always there. Standing still is really bad. I could go on and on w/symptoms, but hoping you get the gist from briefly describing.
My Doc has prescribed Lyrica. Says it's due to the damage in my spinal cord (there is a large lesion in there at the C5 level).
For those that know me, I'm stubborn, always reluctant to try new meds, hesitant to trust that I cannot change, or that this cannot be FIXED. To be honest, I feel there is something they are missing going on in there.
However, I'm faced not with getting through my days with this. My primary question is (oh, and it's a doosey). . Will the Lyrica hurt me if the Doc is wrong and it is something else? Will the Lyrica not work if it is something else, OH, and will the Lyrica only make it go away if the Doc is right?
Oh, and I'm scared of the side affects too. They say allergic reaction, edema, swelling, etc. I am going to challenge Rebif in the near future, and don't want to have too many reactions to each med to worry about....
Told you it was a doosey, I'm sorry. Whew.... good luck... I'm a nit aren't I?? LOL
Love ya's!
-SL
Hi there,
Your advice here means so much to me - ALL of it. Just a little more background as to why I desperately need your thoughts.
I think these decisions through this way because they are not discussed with me by my Docs. I asked the Doc straight up, what will this do to me in the long run and he said "nothing." I'm grateful that he prescribed it, but am extremely hesitant to start it due to the problems I had with the allergic reaction and with being on more than 1 med for a similar amount of time.
During that reaction, I had no guidance (even after countless phone calls, ER visit, and Dr. visit), was floundering for months not knowing what to do and no-one saying it could be my meds - which was a NO-Brainer. All they did was shoot me up with solu-medrol and jack me up w/prednisone. I stopped them all on my own, and it finally stopped.
This I had to do on my own basically, and of course with all of your sound help and guidance along the way.
Db - I was on Rebif the other two were temazapam and xanax (same med family).
So currently, I'm only on Baclofen and a naproxen here and there.
If I start the Lyrica now, and then start the Rebif soon after, and I react, I will not know AGAIN, what I am allergic to. But, I so want the skin and back feelings to stop.
What I did not mention on this thread, but Quix brings up (and contributes to my indecision) are my recent films and a discrepency in the reports. The doctor that read them (not a radiologist) identified the same demylenating plaque as was identified last year, but a little bigger and called it a syrinx. A second set of images and another report later (same doc) identified it as a demylenating plaque on those additional sequences. He did not state in the report that he compared the images from the prior study (different sequenced).
In the end, the reports basically read as 2 distinct studies independant of one another.
So what does this do to Ol' doubting sllowe you ask? It makes her fearful of exactly "what" is being treated.
I do believe however, it is a plaque, one that takes up basically that area across (C5) and down my spinal cord 12mm from there. It is likely like the doc says causing the problems in my T-spine. BUT, this gal needs Da' Fact Jack in writing...LOL!
I'm sorry for the length of this. Really I am, but just want you to know where I'm coming from and why I need all of you. Oh, on a good note, I spoke w/the head Tech at the MR facility, and I'm working on an over-read. Maybe this will bring some much needed clarity where the reports are concerned.
Thank you all again for listening, hope I did not make your eyes blurry...
xoxo
SL
Your advice here means so much to me - ALL of it. Just a little more background as to why I desperately need your thoughts.
I think these decisions through this way because they are not discussed with me by my Docs. I asked the Doc straight up, what will this do to me in the long run and he said "nothing." I'm grateful that he prescribed it, but am extremely hesitant to start it due to the problems I had with the allergic reaction and with being on more than 1 med for a similar amount of time.
During that reaction, I had no guidance (even after countless phone calls, ER visit, and Dr. visit), was floundering for months not knowing what to do and no-one saying it could be my meds - which was a NO-Brainer. All they did was shoot me up with solu-medrol and jack me up w/prednisone. I stopped them all on my own, and it finally stopped.
This I had to do on my own basically, and of course with all of your sound help and guidance along the way.
Db - I was on Rebif the other two were temazapam and xanax (same med family).
So currently, I'm only on Baclofen and a naproxen here and there.
If I start the Lyrica now, and then start the Rebif soon after, and I react, I will not know AGAIN, what I am allergic to. But, I so want the skin and back feelings to stop.
What I did not mention on this thread, but Quix brings up (and contributes to my indecision) are my recent films and a discrepency in the reports. The doctor that read them (not a radiologist) identified the same demylenating plaque as was identified last year, but a little bigger and called it a syrinx. A second set of images and another report later (same doc) identified it as a demylenating plaque on those additional sequences. He did not state in the report that he compared the images from the prior study (different sequenced).
In the end, the reports basically read as 2 distinct studies independant of one another.
So what does this do to Ol' doubting sllowe you ask? It makes her fearful of exactly "what" is being treated.
I do believe however, it is a plaque, one that takes up basically that area across (C5) and down my spinal cord 12mm from there. It is likely like the doc says causing the problems in my T-spine. BUT, this gal needs Da' Fact Jack in writing...LOL!
I'm sorry for the length of this. Really I am, but just want you to know where I'm coming from and why I need all of you. Oh, on a good note, I spoke w/the head Tech at the MR facility, and I'm working on an over-read. Maybe this will bring some much needed clarity where the reports are concerned.
Thank you all again for listening, hope I did not make your eyes blurry...
xoxo
SL
Forgive my poor memory, sllowe, but what's up with Rebif? Have you been off of it for a while? Was it the hives? My own saga with Rebif ended today. It never bothered me, that I was aware of that is. Too bad my liver didn't feel the same way.
db
db
Carol (GHW) thinks Lyrica is the life-saver of all medications. She cannot sing its praises loud enough.
Lyrica will NOT hurt you if you don't have nerve pain. Lyrica will NOT cure nerve pain.
Lyrica cannot tell what the nerve pain is and if it is going to work will relieve nerve pain from any cause.
You should not simultaneously start Lyrica and rechallenge with the Rebif.
You silly rabbit! If the problem is bad enough to complain to your doctor about, and he wants to use a reasonable med, why not try it? There is not a lot they could be missing. It seems that it only remains for you to have the newest MRI images re-looked at with regard to the comments about the earlier one and the possible syrinx. I don't see how a syrinx can be mixed up with a lesion. A syrinx is fluid-filled by definition and a lesion is solid and hyperintense, but now that they have redone them (without commenting on the one thing that made them repeat the imaging) then you should get that answered.
You know I luv ya! Quix
Lyrica will NOT hurt you if you don't have nerve pain. Lyrica will NOT cure nerve pain.
Lyrica cannot tell what the nerve pain is and if it is going to work will relieve nerve pain from any cause.
You should not simultaneously start Lyrica and rechallenge with the Rebif.
You silly rabbit! If the problem is bad enough to complain to your doctor about, and he wants to use a reasonable med, why not try it? There is not a lot they could be missing. It seems that it only remains for you to have the newest MRI images re-looked at with regard to the comments about the earlier one and the possible syrinx. I don't see how a syrinx can be mixed up with a lesion. A syrinx is fluid-filled by definition and a lesion is solid and hyperintense, but now that they have redone them (without commenting on the one thing that made them repeat the imaging) then you should get that answered.
You know I luv ya! Quix
I gave Lyrica a try the first time and had a severe reaction to it but apparently it was an incredibly high dose to start with...75mg tid...I took 5 doses and couldn't talk, had double vision and I couldn't stand up.
The second time I tried it starting with 75mg/daily, increasing by 75mg/day every 3 days and I was up to 300mg/day and it did nothing to help my pain.
I have heard people say that it is a wonder drug and they swear by it yet others like Heather have horrible side effects and are not happy with it at all. I guess it depends on the pain, the person and the doctor prescribing it. I wish you luck with this honey and please let us know how you make out ok?
Lots of Hugs,
Rena
The second time I tried it starting with 75mg/daily, increasing by 75mg/day every 3 days and I was up to 300mg/day and it did nothing to help my pain.
I have heard people say that it is a wonder drug and they swear by it yet others like Heather have horrible side effects and are not happy with it at all. I guess it depends on the pain, the person and the doctor prescribing it. I wish you luck with this honey and please let us know how you make out ok?
Lots of Hugs,
Rena
I wish I could offer any sage advice like the others, but I cannot. I can just offer my thoughts and prayers that the answer will come to you.
I take Baclofen for spasticity as well. It does not take nearly all of them away, but I was far worse without it.
God bless and hope all works out for the best
Penn
I take Baclofen for spasticity as well. It does not take nearly all of them away, but I was far worse without it.
God bless and hope all works out for the best
Penn
Hey, Nit!
No, of course you're not a nit! I would have questions, too, especially after ALL you went through on your last med. OY!
I agree with Elaine that your doc is probably right about what it is. Whether the Lyrica will help you...who knows? I think ess just had some initial relief with it that sort of petered out after a bit, but said it was better than NOT using it.
Others have not had a great effect with it, like Heather said. I hope you at least try it for a while. I really don't think it will hurt, although I certainly understand your reluctance.
Feel better, and let us know what you decide!
Mama Z*
No, of course you're not a nit! I would have questions, too, especially after ALL you went through on your last med. OY!
I agree with Elaine that your doc is probably right about what it is. Whether the Lyrica will help you...who knows? I think ess just had some initial relief with it that sort of petered out after a bit, but said it was better than NOT using it.
Others have not had a great effect with it, like Heather said. I hope you at least try it for a while. I really don't think it will hurt, although I certainly understand your reluctance.
Feel better, and let us know what you decide!
Mama Z*
Hi SL,
Craig has alot of what you have going on in his spine. They have never found a lesion though. But he does have chronic pain and spasms in the T12 area and the pain goes to his feet along with spasms in the feet and spasticity in the calves.
To answer your question about what if something else is going on in the spine......the doctors kept thinking that with Craig. In 2007, he had SEVEN spine MRI's (I say that in disgust since the docs would not admit he had a neurologic problem), and believe me, there is nothing mechanically wrong with the spine. No spine narrowing etc.
I know it is a haunting question for you since Craig is still in disbelief at times too. But I would put my money on your neuro being right. The Neurontin seems to be helping dull the pain a little bit.
Good Luck SL,
Elaine
Craig has alot of what you have going on in his spine. They have never found a lesion though. But he does have chronic pain and spasms in the T12 area and the pain goes to his feet along with spasms in the feet and spasticity in the calves.
To answer your question about what if something else is going on in the spine......the doctors kept thinking that with Craig. In 2007, he had SEVEN spine MRI's (I say that in disgust since the docs would not admit he had a neurologic problem), and believe me, there is nothing mechanically wrong with the spine. No spine narrowing etc.
I know it is a haunting question for you since Craig is still in disbelief at times too. But I would put my money on your neuro being right. The Neurontin seems to be helping dull the pain a little bit.
Good Luck SL,
Elaine
SL - I have a similar situation!
My primary is treating my Fibromyalgia that I was re-diagnosed with after 12 years by Mayo in Feb. 08.
I am currently taking Provigil 200 mg for fatigue; 20 mg Amitryptiline at bedtime for more REM sleep and nerve pain . . .
. . . and after two weeks of "working the system" I was finally approved by my insurance that they would cover Lyrica which my Dr wants me to add to my line-up.
Oh, and I also take 40 mg of Simvastatin for high cholesterol.
I still have lots of parethesis; numbness that migrates but is mostly right sided; and pain in my feet, which was quite bad for about 1 month but now it seems to go away within minutes of being up and about - and pain down my legs which I really only feel if pressure is applied.
OK, I forgot that I still have shooting pains in one of my toes when I try to wear a heel of any kind . . . he thinks that this will go away saying that nerves have a tremendous capacity for re-generating.
I'm like you - I can deal w/ where I am at today and really didn't want to add Lyrica - but, that being said I am going to pick up the prescription today and give it a try (it's a lot easier to do when insurance picks up the tab). . . I feel "pretty good" these days and wonder if the Lyrica might help me feel "GREAT!"
I did have a normal Neuro exam but the fact that my only MRI was of my Brain done on a .25 Tesla without contrast is always in the back of my mind . . . what if it's not just the FM causing all these syptoms?
Anyway, I'm playing the "wait and see" game and am trying to be proactive in the meantime to improve the quality of my life, which to me means being able to get out and enjoy my doing things with my family and friends.
So far, this summer is SO much better than last summer . . . so I'm off in a little while to pick up that Lyrica!
I'll report back to you how things go - side effects, benefits etc. . .
Best wishes,
Julia
My primary is treating my Fibromyalgia that I was re-diagnosed with after 12 years by Mayo in Feb. 08.
I am currently taking Provigil 200 mg for fatigue; 20 mg Amitryptiline at bedtime for more REM sleep and nerve pain . . .
. . . and after two weeks of "working the system" I was finally approved by my insurance that they would cover Lyrica which my Dr wants me to add to my line-up.
Oh, and I also take 40 mg of Simvastatin for high cholesterol.
I still have lots of parethesis; numbness that migrates but is mostly right sided; and pain in my feet, which was quite bad for about 1 month but now it seems to go away within minutes of being up and about - and pain down my legs which I really only feel if pressure is applied.
OK, I forgot that I still have shooting pains in one of my toes when I try to wear a heel of any kind . . . he thinks that this will go away saying that nerves have a tremendous capacity for re-generating.
I'm like you - I can deal w/ where I am at today and really didn't want to add Lyrica - but, that being said I am going to pick up the prescription today and give it a try (it's a lot easier to do when insurance picks up the tab). . . I feel "pretty good" these days and wonder if the Lyrica might help me feel "GREAT!"
I did have a normal Neuro exam but the fact that my only MRI was of my Brain done on a .25 Tesla without contrast is always in the back of my mind . . . what if it's not just the FM causing all these syptoms?
Anyway, I'm playing the "wait and see" game and am trying to be proactive in the meantime to improve the quality of my life, which to me means being able to get out and enjoy my doing things with my family and friends.
So far, this summer is SO much better than last summer . . . so I'm off in a little while to pick up that Lyrica!
I'll report back to you how things go - side effects, benefits etc. . .
Best wishes,
Julia
I have to be honest with you. Not many people on this Forum have been helped by Lyrica. I was on it and noticed no improvement at all. In fact when I got to a dose of 300mg. a day, it made me sick as you know what.... Just wasn't for me. Hopefully it will work well for you.
I am also on Baclofen and it does help reduce the spasms. Problem with me, when I get to around 50 mgs. a day, I find that my legs are weak. I actually need some of that spasicity to walk. But it is helping, so I can take less pain medication.
Let us know how your Lyrica works for you. I want to hear a success story.
Big Hugs,
Heather
I am also on Baclofen and it does help reduce the spasms. Problem with me, when I get to around 50 mgs. a day, I find that my legs are weak. I actually need some of that spasicity to walk. But it is helping, so I can take less pain medication.
Let us know how your Lyrica works for you. I want to hear a success story.
Big Hugs,
Heather
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