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rohrer01
06-20-2012, 04:42 PM
I just wanted to know if any of you have been put on Lyrica for pain. It's my next step, if I agree to it, in my pain management. I'm leary of it because of all of the other meds I'm on. Does it make you feel woozy or "high". I don't like those feelings and am afraid that it will just make me tired all of the time. Any experiences with the drug would be greatly appreciated, especially since it seems to have the potential for a ton of adverse side effects. I have to weigh my options. Thanks in advance!

mabeckoff
06-20-2012, 05:03 PM
I have been on Lyrica since 2008 . Dr Bederman raised me to the highest dose sometime last year. It does work well for me. I did gain some weight on it but that is the only side effect that I have. For a couple of days, several months ago, I had forgotten to take it and was wondering why my pain was worse and then I realized that I had not taken the Lyrica

rohrer01
06-20-2012, 05:57 PM
Thank you, Melissa.
I'm just concered about any new medication. My mom mentioned DMSO for me. I'm looking in to it, but the FDA hasn't approved it for human use except as a mode to get other medications through the skin and nails and for a rare bladder disease. There are people that swear by it for pain. I looked it up and it sounds safer than Lyrica, so I don't know. They sell it in health food stores and Tack & Feed stores for livestock. It's used frequently in veterinary medicine. I just wish I didn't have to be on all this stuff! I don't feel "clean". By that, I mean my body always feels polluted or slightly toxic from the drugs. AND when they wear off, I especially notice it. It makes me feel controlled. I'm at a place where I'm angry about it again and can't seem to accept the fact that there is something wrong that I will need medicine for the rest of my life. I still feel that there's some way that I can beat this pain without drugs. So adding yet another drug to my list is quite frustrating. Thanks again and thanks for listening to my rant.

LindaRacine
06-20-2012, 05:57 PM
There have been quite a few other threads on Lyrica. This is the most recent:

http://www.scoliosis.org/forum/showthread.php?12042-Pregabalin-Lyrica-nervous&highlight=lyrica

mabeckoff
06-20-2012, 06:05 PM
Thank you, Melissa.
I'm just concered about any new medication. My mom mentioned DMSO for me. I'm looking in to it, but the FDA hasn't approved it for human use except as a mode to get other medications through the skin and nails and for a rare bladder disease. There are people that swear by it for pain. I looked it up and it sounds safer than Lyrica, so I don't know. They sell it in health food stores and Tack & Feed stores for livestock. It's used frequently in veterinary medicine. I just wish I didn't have to be on all this stuff! I don't feel "clean". By that, I mean my body always feels polluted or slightly toxic from the drugs. AND when they wear off, I especially notice it. It makes me feel controlled. I'm at a place where I'm angry about it again and can't seem to accept the fact that there is something wrong that I will need medicine for the rest of my life. I still feel that there's some way that I can beat this pain without drugs. So adding yet another drug to my list is quite frustrating. Thanks again and thanks for listening to my rant.

No problem listening to you rant. That is what we are here for

loves to skate
06-20-2012, 08:27 PM
rohrer01,
Rant all you want. We understand. I have not been on Lyrica, but I do quite well on neurontin (gabapentin) At first it made me a little sleepy but after a couple of weeks the sleepiness went away. I would think that Lyrica would do the same thing. I know what you mean by having to take medicines. I worry about what they do to a person over time, but I guess we have very little choices in our situations. Explain to me again why the Doctors won't operate on you since you are in so much pain?
Take care, Sally

rohrer01
06-21-2012, 05:05 AM
Thanks, ladies.
No surgery for me because the surgeon feels it would make the pain worse due to the location of my curve AND the fact that I am so thin. He said the muscles would be constantly irritated by the hardware. He wants me to be at a constant 8 on the pain scale or over 60* as of last time I talked with him. He felt that some of my pain isn't scoliosis related, although I know it originates around the curves.

My muscles are just knotted all of the time and I do have some mild arthritis in my neck. Supposedly nothing more than would be expected for my age. BUT, the dystonia is believed by my current docs to be a result of the scoliosis. So would surgery fix the dystonia? I honestly don't think so. I believe that my muscles have been trained to be rigid for so long that changing things around may very well increase my pain.

I read a dianosis of "myalgia" on my chart but not "fibromyalgia". The only difference in the literal meaning of those two words, as far as I can recall from taking medical terminology. would be "myalgia" = muscle pain, and "fibromyalgia" = muscle fiber pain. They believe my muscle pain is cause by the dystonia which is caused by the scoliosis.

So if I just talked myself into a circle of nonsense, then you can understand exactly how I feel... Nothing seems to work. I'm functional but uncomfortable most of the time. I just do what I have to do. The pain keeps me from getting a good nights rest most nights, but part of that is lumbar pain unrelated to the scoliosis. My neck pain really kicks up as the day progresses. The docs are all frustrated, and I'm frustrated. My expectations are probably too high. I don't want to live with pain of any degree and I don't want to be on meds. I can't have it both ways. AND as it seems I can't even have it one way, as I still have pain even on the meds, it's just more tolerable. ...another rant.

rohrer01
06-21-2012, 05:16 AM
There have been quite a few other threads on Lyrica. This is the most recent:

http://www.scoliosis.org/forum/showthread.php?12042-Pregabalin-Lyrica-nervous&highlight=lyrica

Thanks for this, Linda. It seems I'm not the only one feeling this way. I've tried gabapentin (Neurontin) with no help, but it was very low dose. I've read the side effects of the Lyrica and how it works. It is another antiseizure drug, but it also works on your seratonin receptors like an antidepressant. I'm not supposed to take antidepressants per the cardiologist, but my GP firmly assured me that this was NOT an antidepressant. I had REALLY bad reactions to several antidepressants and am afraid of repeating some of those reactions... I hate these kinds of decisions. =(

Jenna.KB
06-21-2012, 05:43 AM
Thanks, ladies.
No surgery for me because the surgeon feels it would make the pain worse due to the location of my curve AND the fact that I am so thin. He said the muscles would be constantly irritated by the hardware. He wants me to be at a constant 8 on the pain scale or over 60* as of last time I talked with him. He felt that some of my pain isn't scoliosis related, although I know it originates around the curves.

My muscles are just knotted all of the time and I do have some mild arthritis in my neck. Supposedly nothing more than would be expected for my age. BUT, the dystonia is believed by my current docs to be a result of the scoliosis. So would surgery fix the dystonia? I honestly don't think so. I believe that my muscles have been trained to be rigid for so long that changing things around may very well increase my pain.

I read a dianosis of "myalgia" on my chart but not "fibromyalgia". The only difference in the literal meaning of those two words, as far as I can recall from taking medical terminology. would be "myalgia" = muscle pain, and "fibromyalgia" = muscle fiber pain. They believe my muscle pain is cause by the dystonia which is caused by the scoliosis.

So if I just talked myself into a circle of nonsense, then you can understand exactly how I feel... Nothing seems to work. I'm functional but uncomfortable most of the time. I just do what I have to do. The pain keeps me from getting a good nights rest most nights, but part of that is lumbar pain unrelated to the scoliosis. My neck pain really kicks up as the day progresses. The docs are all frustrated, and I'm frustrated. My expectations are probably too high. I don't want to live with pain of any degree and I don't want to be on meds. I can't have it both ways. AND as it seems I can't even have it one way, as I still have pain even on the meds, it's just more tolerable. ...another rant.

Hi rohrer,

I'm not sure about the exact positioning e.g. T1 to L6 but my curve sounds like yours. Mine looks like an S but the other way around, the biggest curve at the top. I can understand your surgeon saying he doesn't know if he can improve your pain but not saying he knows surgery will worsen your pain due to where your curves are.
Once my curves started moving again I already decided I wanted a full fixation, it cant curve anymore if its fused from top to bottom :-) I too don't want to be on pain meds for the rest of my life, I'm in so much pain and the scoliosis is having an effect on all aspects of my life so I want to take the risk that the operation will improve my pain immensely. So many people here have achieved that so hopefully I will too.
When was the last time you had xrays to check the curve sizes? I keep finding when the pain is getting unbearable its because the curves are progressing.
I'm not sure if you've already mentioned it but I find a good massage every week if I can afford it really helps to relax the muscles for a while. Although my pain problem at the minute is severe stiffness when I wake up and the constant pain in my rib cage.

Hope the new meds help x

Doreen1
06-21-2012, 07:09 AM
Hi Ro

Have u consulted with a different surgeon? Didn't u mention the current surgeon wasn't very thorough? If u are frustrated with him now why consider him for your surgery?

Warmly
Doreen

loves to skate
06-21-2012, 11:28 AM
Thanks for this, Linda. It seems I'm not the only one feeling this way. I've tried gabapentin (Neurontin) with no help, but it was very low dose. I've read the side effects of the Lyrica and how it works. It is another antiseizure drug, but it also works on your seratonin receptors like an antidepressant. I'm not supposed to take antidepressants per the cardiologist, but my GP firmly assured me that this was NOT an antidepressant. I had REALLY bad reactions to several antidepressants and am afraid of repeating some of those reactions... I hate these kinds of decisions. =(

If you only tried a low dose of gabapentin, why didn't your Doctor gradually increase your dosage? I take 1200 mg of gabapentin and am told that is a low dose. Sometimes I will take an extra dose when I have extra pain. I know it works because if i forget a dose, my pain increases and improves within an hour when I take that missed dose.
Sally

rohrer01
06-21-2012, 12:02 PM
Hi rohrer,

I'm not sure about the exact positioning e.g. T1 to L6 but my curve sounds like yours. Mine looks like an S but the other way around, the biggest curve at the top. I can understand your surgeon saying he doesn't know if he can improve your pain but not saying he knows surgery will worsen your pain due to where your curves are.
Once my curves started moving again I already decided I wanted a full fixation, it cant curve anymore if its fused from top to bottom :-) I too don't want to be on pain meds for the rest of my life, I'm in so much pain and the scoliosis is having an effect on all aspects of my life so I want to take the risk that the operation will improve my pain immensely. So many people here have achieved that so hopefully I will too.
When was the last time you had xrays to check the curve sizes? I keep finding when the pain is getting unbearable its because the curves are progressing.
I'm not sure if you've already mentioned it but I find a good massage every week if I can afford it really helps to relax the muscles for a while. Although my pain problem at the minute is severe stiffness when I wake up and the constant pain in my rib cage.

Hope the new meds help x

Thanks for the support, Jenna. Really with your situation, your curve is life threateningly large. Mine is not. That's the big difference. As I explained to you once before about our wonderful medical care here in the U.S., I would go to get another opinion, but it wouldn't do me any good. My insurance carrier doesn't have a scoliosis surgeon for adults and the one they are "letting" me see is out of network. They will not pay for a second opinion, yet alone if that doctor wanted me to have the surgery. So I would end up paying out of pocket for the second opinion that wouldn't do me any good anyway. I did get a second opinion from Dr. Hey in NC, who basically told me that I needed the surgery. He didn't charge me as I sent him my x-rays and he looked at them and called me. I was going to go out there to see him when he abruptly cancelled my appointment, saying there were plenty of good doctors where I live. I think it was more the insurance issue since he knew he couldn't operate because my insurance wouldn't pay. I won't even get into the reason his office staff told me he cancelled my appointment because it's too ridiculous, in my eyes anyway. Totally unprofessional in my opinion. But at least he gave me a second opinion. I wanted to go with two out of three. But it's futile since I can't afford this surgery.

As far as massage goes, I would love to do that. Again, I can't afford it. It costs way too much money. I had deep tissue massage through the physical therapy department, which my insurance payed for, but it put me in so much pain that every symptom I had was 10 times worse. It hurt like the dickens! I can't see continuing to put myself through that torture. My doctor told me NOT to go back and actually advised against it before I ever tried it. I would try just about anything. I have had accupuncture, which is not covered either, and it has worked on the lower muscle spasms in my lumbar. I can't afford to keep going back and so far that has helped with those muscle groups. A full 1/3 to 1/2 of my husband's income goes to pay for my insurance and medications and medical bills. We are broke because of this and can't afford many alternative treatments. =( Massage is good advice, though. Thanks.

rohrer01
06-21-2012, 12:17 PM
If you only tried a low dose of gabapentin, why didn't your Doctor gradually increase your dosage? I take 1200 mg of gabapentin and am told that is a low dose. Sometimes I will take an extra dose when I have extra pain. I know it works because if i forget a dose, my pain increases and improves within an hour when I take that missed dose.
Sally
Sally,
We were trying to conceive a baby at the time and I needed to go off the gabapentin. We still aren't using birth control and have poured thousands of dollars into fixing my female problems (before this pain got out of control) so that I could conceive. We are still hopeful and that is another reason I don't want to add another medication. I've already talked to my OB/GYN about the ones I'm on and she's "okay" with them, although I know I'd have to either cut way back on some or quit them all together "if" I got pregnant. I know this ties my doctor's hands as far as medication goes. That's why I'm getting injections and trying every other form of pain control that I can afford. I have gotten this under control in the past, but it takes time and my clock is ticking. I'm also doubting that at my age I would have a baby, anyway. So that's why I do consent to some meds. I just don't want to be taking SOOO much. I know Lyrica is a category C, so is Klonopin. Percocet is a category B in early pregnancy and I think a category D in late pregnancy due to its addictive effect on the baby in the last trimester. I HAVE to take my heart medication but am on a very low dose. I'm not sure what class the baclofen is in. I think it is also a category C. We talked about how baby might be affected on these meds and I was reassured. I just don't want to add one more thing. I'm also getting less hopeful that I'll be able to get the pain under control this time without the use of medication. It's depressing. I could "try" living in pain, but it wears on me so badly that I have a hard time doing anything. Right now I'm functional. If you met me, you'd never guess I was in pain unless you looked for subtle signs.

Jenna.KB
06-22-2012, 06:00 AM
Thanks for the support, Jenna. Really with your situation, your curve is life threateningly large. Mine is not. That's the big difference. As I explained to you once before about our wonderful medical care here in the U.S., I would go to get another opinion, but it wouldn't do me any good. My insurance carrier doesn't have a scoliosis surgeon for adults and the one they are "letting" me see is out of network. They will not pay for a second opinion, yet alone if that doctor wanted me to have the surgery. So I would end up paying out of pocket for the second opinion that wouldn't do me any good anyway. I did get a second opinion from Dr. Hey in NC, who basically told me that I needed the surgery. He didn't charge me as I sent him my x-rays and he looked at them and called me. I was going to go out there to see him when he abruptly cancelled my appointment, saying there were plenty of good doctors where I live. I think it was more the insurance issue since he knew he couldn't operate because my insurance wouldn't pay. I won't even get into the reason his office staff told me he cancelled my appointment because it's too ridiculous, in my eyes anyway. Totally unprofessional in my opinion. But at least he gave me a second opinion. I wanted to go with two out of three. But it's futile since I can't afford this surgery.

As far as massage goes, I would love to do that. Again, I can't afford it. It costs way too much money. I had deep tissue massage through the physical therapy department, which my insurance payed for, but it put me in so much pain that every symptom I had was 10 times worse. It hurt like the dickens! I can't see continuing to put myself through that torture. My doctor told me NOT to go back and actually advised against it before I ever tried it. I would try just about anything. I have had accupuncture, which is not covered either, and it has worked on the lower muscle spasms in my lumbar. I can't afford to keep going back and so far that has helped with those muscle groups. A full 1/3 to 1/2 of my husband's income goes to pay for my insurance and medications and medical bills. We are broke because of this and can't afford many alternative treatments. =( Massage is good advice, though. Thanks.

Hi rohrer

I was wondering whether there are any exemptions in your insurance policy e.g. if your curves get worse you get cover. Can you seek free legal advice where you live with regards to the wording of the policy and whether they should in fact cover you?
Can you amend the policy? if its so expensive and doesn't cover you for most things would it be better to just pay for any meds you get and change your insurance to a different provider?
Don't know if these are options for you or you might have already looking into everything, just throwing them out there.

I would definately say get your husband/partner to give you gentle back massages I find that helps and its free you just need to shout them a nice smile :-) I also use hot water bottles to try and relax the muscles so maybe you could try that if you haven't already. We talk about that much here I forget.

Wish I could make everything better for you and everyone else. Sending you lots of hugs xx

rohrer01
06-22-2012, 05:16 PM
Jenna,
You're too sweet! If I drop my insurance policy, then I will be paying MORE out of pocket than $1000+/month that I am paying. Just for a regular general practice doctor it's about $200. My meds would cost me probably at least $800/month if not more. So we are saving money by having the insurance. It does cover everything, but I have to go the their doctors unless I have a referral that gets approved by the insurance company. They made me jump through hoops to go to my regular scoli doc, who had been my doc before this insurance. I wanted to keep seeing him since I liked him. My last visit where he was so inconsistent may have been a bad day. Docs are people, too. I just don't want to go back right now. If I wanted to, my insurance would approve it, but for him ONLY. I could probably appeal the second opinion rule, since they don't have a provider that specializes in scoli. I'm just tired of fighting with them.

As far as hubby giving the back rubs. He's a mechanic and does NOT have a gentle touch...LOL... I think his hands are so calloused that he can't feel anything. He has been able to help me through a few severe muscle spasms, though. I taught him how to do pressure point therapy, which does help sometimes. I would never let him touch my neck, though. I love him dearly, but he doesn't give good massages. He knows it, too. =)

Gentle hugs back at ya...(((hugs)))

Oh, and the trigger point injections are really expensive. The Botox is thousands of dollars each time I go. The insurance company is NOT making any money on me. If it were, I wouldn't have it.

Jenna.KB
06-24-2012, 04:02 PM
Hiya,

Clearly I don't really know much about these insurance policies, I'm glad they will approve the surgeon you've seen though just in case you do want/needs surgery at some time.

Ye I think I would avoid your husbands massages too, I'm lucky my partner is a lawyer so he has soft hands. He's always obliging but sometimes it doesn't help or I want him to keep massaging me all night but it kills his hands :-)

I so hope you manage to get some relief from scoliosis and can keep smiling xx

rohrer01
06-25-2012, 11:39 AM
Hiya,

Clearly I don't really know much about these insurance policies, I'm glad they will approve the surgeon you've seen though just in case you do want/needs surgery at some time.

Ye I think I would avoid your husbands massages too, I'm lucky my partner is a lawyer so he has soft hands. He's always obliging but sometimes it doesn't help or I want him to keep massaging me all night but it kills his hands :-)

I so hope you manage to get some relief from scoliosis and can keep smiling xx

Thank you, Jenna. I think I'm just a big whiner sometimes! LOL