syrinx t8-10 new med lyrica

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syrinx t8-10 new med lyrica

Postby lulu211 » Wed Jan 21, 2009 8:19 pm

Hi everyone hope you all are having a good day. I have 11 herinated dics,fibromyalgia,syringomyelia.scolosis. doctor wants me to take lyrica anyone have problems after starting this med. worrys me doctors want to change the way nerves work when syrinx is inside nervous system. thanks everyone please i need some feed back. lulu :)
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Re: syrinx t8-10 new med lyrica

Postby Amy Joe » Wed Jan 21, 2009 8:27 pm

Lulu, I am not taking this med. Just wanted to welcome you! Sorry for your list of conditions. You will get a reply from others that are taking it.

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Re: syrinx t8-10 new med lyrica

Postby tennesseewalker » Wed Jan 21, 2009 8:36 pm

Hi Lulu,

I did not have any adverse reactions to Lyrica (except to my pocketbook).

It didn't help me either. So after 2 months I dropped it in favor of older, tried-and-true meds that offer generic.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: syrinx t8-10 new med lyrica

Postby lulu211 » Wed Jan 21, 2009 9:23 pm

thanks to all for such a quick response. my email is lulu_211@yahoo.com if anyone wants to converse. I am a nurse for the past 21 years. this disease really makes it hard to keep a job. just moved to sc. looking for doctors. i thought it was hard in nj. but was able to get some compassionate doctors in nj. cost of living to high there. was unable to buy a house. i have been dealing with this surpise since 2001 when i was hit by elevator door at my job. workmens comp would not claim any resposibility for syrinx they did not know enough about it tryed to say it was probably from birth or another time in my life. go figure. sorry to hear about your conditions. hang in there. god will see us thru. lulu :lol:
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Re: syrinx t8-10 new med lyrica

Postby lulu211 » Wed Jan 21, 2009 9:53 pm

lulu211 wrote:thanks to all for such a quick response. my email is lulu_211@yahoo.com if anyone wants to converse. I am a nurse for the past 21 years. this disease really makes it hard to keep a job. just moved to sc. looking for doctors. i thought it was hard in nj. but was able to get some compassionate doctors in nj. cost of living to high there. was unable to buy a house. i have been dealing with this surpise since 2001 when i was hit by elevator door at my job. workmens comp would not claim any resposibility for syrinx they did not know enough about it tryed to say it was probably from birth or another time in my life. go figure. sorry to hear about your conditions. hang in there. god will see us thru. lulu :lol:
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Re: syrinx t8-10 new med lyrica

Postby birdlover3 » Thu Jan 22, 2009 1:52 am

Boy you have a lot going on. I didn’t have any problems with Lyrica as long as I was on a lower dosage, but after they increased my dosage, my leg started swelling. I stopped my Lyrica and started on neurontin. From what I’ve read, most people don’t have a problem with Lyrica & hopefully you won’t. I hope & pray Lyrica helps you.

It’s a shame workman’s comp wasn’t help responsible. It’s known that trauma can precipitate the symptoms of a syrinx and Chiari.

And yes, God sees us through each day.
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Re: syrinx t8-10 new med lyrica

Postby lulu211 » Thu Dec 29, 2011 8:37 am

hi/hope you all had a great christmas/I am hoping that ssd will realize that sm is a real disabiling disease.people look at you if you can walk(thank God) and look okay on the outside and will say you look fine.If people only knew what everyone goes thru with these terrible diseases.I also find that people just do not understand anything about the disease.If you told them you had ms they know that.I am Praying for all of us with these diseases they can find a cure and have more knowledge. Happy New Year o You All.
:roll:
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Re: syrinx t8-10 new med lyrica

Postby karenb » Thu Dec 29, 2011 11:24 pm

Hi Lulu,

Welcome to the club nobody wants to be a part of (yeah... I say that to everyone... I'm getting to that point in life where my standard greeting is substantually less polite - but we're still just getting to know each other!).

I have SM T6-T9, and have learned to loathe this disease. I currently take Gabapentin (aka Neurontin) for nerve pain - wasn't too keen on some of Lyrica's side effects, although I did try it for three-plus years. Gabby is definitely much easier on the pocketbook. (In my case, it means I pay full freight for Gabby, while I pay the flat co-pay for Lyrica - of course, the flat co-pay (for Lyrica) is quite a bit more than the "full freight" (for Gabby).

In terms of pain & disability, this whole thing stinks... I've been on full SSD for SM since March 2009 (I stopped working & submitted the paperwork in September 2008). Frankly, I think Social Security recognizes SM more than the medical community. I actually had one MD tell me that she'd never heard of it, and she'd try to took it up (if, of course, I scheduled another appt in four months - I ran to another practice that actually cared about its patients). The most insulting comment from a physician was that it was "all in my head" and I needed to "just get a job" (imagine the condescending tone in those remarks, and you have an inkling of how i felt - forget the fact that I drove 500 miles one-way to hear this pronouncement).

Sorry for the mood... I had Physical Therapy today, and feel pretty sore now. I reall hope to get to know you better in the future.

Karen

P.S. You will catch me on better days - I promise. You should have heard me the day I found out that I could wear stiettos in a wheelchair!
Last edited by karenb on Sun Jan 08, 2012 3:41 pm, edited 1 time in total.
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Re: syrinx t8-10 new med lyrica

Postby pseudotumor » Fri Dec 30, 2011 12:13 am

Hi Lulu,
I've taken gabapentin for a long time which helps somewhat but not well enough. Started lyrica 2 weeks ago and i'm still getting used to it. It makes me super drowsy and out of it. Take the 'do not drive until you know how this effects you' warning seriously...
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