Hi Folks
I am considering re-starting Lyrica. I hadn't gone up on it very much at all..when I tried in Feb, due to a bladder flare, But the flare may have been unrelated
I know we are all different, but does anyone know what dose of Lyrica in general might be optimal for at least some pain relief?
From my research it seems to work best in conjunction with other meds? One person (Bathsheba?) had written awhile back about using it successfully with Tramadol.
Hope she is doing well.
There are some meds that I cannot take (mostly the anti-cholinergics) due to my bladder
But wondering what I can do to get going with the Lryica,as for some reason I am becoming worse ...more bedridden and the throbbing continues..as I lie down.
I think I may have done too much standing (to do chores etc on Monday)
I started some baclofen rectal supps...I have been getting some urinary hesitancy, but suspect its from the mix of my other meds (methadone which I hope to drop off as soon and Diluadid supps.) So Im a bit scared that more of that will happen when I start Lyrica .. (my CNS is so fired up, I believe, so hence more side effects)
Any info on Lyrica and pain relief ...thx so much folks.. need relief!
Kathy
Lyrica
Re: Lyrica
Hi Kathy
I've been on Lyrica/pregabalin twice now.
First time was just before I had the big surgery where they took out lots of mesh. We took it up really slowly that time, 25mg a week and it took ages to feel like anything was happening at all. I had no real problems with side effects, just felt slightly spaced sometimes. I started getting pain relief at 150mg a day. At 200mg pain relief was pretty good. And then I had the surgery, and we tapered it down. If I hadn't had the surgery, I'd have taken it up to 250 or even 300 quite happily. Stepping the dose up slowly meant minimal problems with side effects.
Subsequent surgeries since then have meant that pain levels have gone back up again, unfortunately.
This time round, we've been taking it up much faster, I've only had 75mg capsules to play with. Also, I've been taking it in combination with topiramate, on the advice of my pain consultant. However I have been stepping them up on separate weeks, so I can tell which med is doing what with regard to side effects. I haven't stepped both up at the same time. Anyway! This time, I know more about the side effects. After each dose increase, pregabalin/Lyrica makes me feel spaced out, and stupid. By which I mean that I find mental arithmetic difficult, and assimilating information for problem solving is difficult, and this worries me. However it does wear off. A couple of weeks after a dose increase - maybe three - things are back to normal.
Right now I'm taking 175mg, together with 100mg topiramate, and my pain levels are nearly down to zero. I might take the pregabalin up to 200mg, just to take those last little twinges out.....
I'm still maintaining all the lifestyle changes, avoiding sitting. I can't see that changing. My activity levels are increasing day by day, it is wonderful and I still can hardly believe it.
I am having some problems with constipation, not sure which med is causing this, but one of them certainly is. Currently taking two sachets of Movicol/Miralax daily. Wish this wasn't necessary but it is, maybe with time it will change.
Have no idea if any of these ramblings are useful to you Kathy, but I hope so. And I do hope that your situation improves, it must be so difficult for you at the moment. I wish you well.
I've been on Lyrica/pregabalin twice now.
First time was just before I had the big surgery where they took out lots of mesh. We took it up really slowly that time, 25mg a week and it took ages to feel like anything was happening at all. I had no real problems with side effects, just felt slightly spaced sometimes. I started getting pain relief at 150mg a day. At 200mg pain relief was pretty good. And then I had the surgery, and we tapered it down. If I hadn't had the surgery, I'd have taken it up to 250 or even 300 quite happily. Stepping the dose up slowly meant minimal problems with side effects.
Subsequent surgeries since then have meant that pain levels have gone back up again, unfortunately.
This time round, we've been taking it up much faster, I've only had 75mg capsules to play with. Also, I've been taking it in combination with topiramate, on the advice of my pain consultant. However I have been stepping them up on separate weeks, so I can tell which med is doing what with regard to side effects. I haven't stepped both up at the same time. Anyway! This time, I know more about the side effects. After each dose increase, pregabalin/Lyrica makes me feel spaced out, and stupid. By which I mean that I find mental arithmetic difficult, and assimilating information for problem solving is difficult, and this worries me. However it does wear off. A couple of weeks after a dose increase - maybe three - things are back to normal.
Right now I'm taking 175mg, together with 100mg topiramate, and my pain levels are nearly down to zero. I might take the pregabalin up to 200mg, just to take those last little twinges out.....
I'm still maintaining all the lifestyle changes, avoiding sitting. I can't see that changing. My activity levels are increasing day by day, it is wonderful and I still can hardly believe it.
I am having some problems with constipation, not sure which med is causing this, but one of them certainly is. Currently taking two sachets of Movicol/Miralax daily. Wish this wasn't necessary but it is, maybe with time it will change.
Have no idea if any of these ramblings are useful to you Kathy, but I hope so. And I do hope that your situation improves, it must be so difficult for you at the moment. I wish you well.
Re: Lyrica
Hi Calluna
Thx so much for writing to me. I can't tell you how encouraging and helpul it is to read your kind and informative posts. You are so intelligent and I appreciate your sharing your knowledge with me. I am so happy the Lyrica and Toprimate area giving you the wonderful pain level and activity levels you mention. Tho we are all different, its nice to hear good things about Lyrica.. I am interviewing new pain mgm docs currently and as a drug that was recommended for me before, I may be starting Lyrica again today .. or soon.
Hopefully we ca bring it up fast, I am quite a low level on the methadone, so I don't have too much further to go on the titration down..Who knows it may have been helping a bit as was never bedridden with pain when I was at higher levels, but I also couldn't sit at all or stand for long, so obviously it wasn't too effective etc.
I am wondering about hyperanalgesia from the Methadone ( a few docs have mentioned this) or from my dilaudid rectal supps..
Thanks also for all your advice on constipation..I seem to be "going" a bit regularyly more lately. I think that' s cause I upped the dose of Miralax and have tried to lower the Dulcolox a bit. I haven't really given the Linzess a try yet, but will let you know if I do.
BTW the gastro doc says Miralax at high levels is very safe (for instance a double dose or more! with each meal) or each med dose, however you need to take it.
I ve heard nothing but good about Miralax (Movical) so maybe you can increase it to help with your constipation. I hope that problem is resolved for you!
Thx again for your kind support Calluna!
Best regards
Kathy
Thx so much for writing to me. I can't tell you how encouraging and helpul it is to read your kind and informative posts. You are so intelligent and I appreciate your sharing your knowledge with me. I am so happy the Lyrica and Toprimate area giving you the wonderful pain level and activity levels you mention. Tho we are all different, its nice to hear good things about Lyrica.. I am interviewing new pain mgm docs currently and as a drug that was recommended for me before, I may be starting Lyrica again today .. or soon.
Hopefully we ca bring it up fast, I am quite a low level on the methadone, so I don't have too much further to go on the titration down..Who knows it may have been helping a bit as was never bedridden with pain when I was at higher levels, but I also couldn't sit at all or stand for long, so obviously it wasn't too effective etc.
I am wondering about hyperanalgesia from the Methadone ( a few docs have mentioned this) or from my dilaudid rectal supps..
Thanks also for all your advice on constipation..I seem to be "going" a bit regularyly more lately. I think that' s cause I upped the dose of Miralax and have tried to lower the Dulcolox a bit. I haven't really given the Linzess a try yet, but will let you know if I do.
BTW the gastro doc says Miralax at high levels is very safe (for instance a double dose or more! with each meal) or each med dose, however you need to take it.
I ve heard nothing but good about Miralax (Movical) so maybe you can increase it to help with your constipation. I hope that problem is resolved for you!
Thx again for your kind support Calluna!
Best regards
Kathy
Re: Lyrica
Oh Kathy, you do say nice things! We are indeed all different.
I do hope that you find a new pain doctor soon, who you will be able to work with to manage this horrible condition. Nobody should have to be in this alone. And I do hope that you find Lyrica to be useful for you. You may find that you feel a bit spaced out though, at first!
Today, I have swept the ground floor of the house. This has been a big deal. I can remember when I used to do this every morning, just routinely, in less than five minutes. Today, I did it by stages, with rests in between, and it took me all day. But I did it all, by myself, and I literally can't remember when I last did that. That's what I mean by getting my activity levels back. And we went for a lovely walk this afternoon, with the dog. Again, lots of stops. And I was glad to get back to the car, because I was tired, but I had no pain.
I intend to keep going. At the moment my main problem is just that I get tired, I'm not used to being able to do things. I need to get stronger again.
I can't imagine how it is for you at the moment, but I do hope that it gets better. I really do.
I do hope that you find a new pain doctor soon, who you will be able to work with to manage this horrible condition. Nobody should have to be in this alone. And I do hope that you find Lyrica to be useful for you. You may find that you feel a bit spaced out though, at first!
Today, I have swept the ground floor of the house. This has been a big deal. I can remember when I used to do this every morning, just routinely, in less than five minutes. Today, I did it by stages, with rests in between, and it took me all day. But I did it all, by myself, and I literally can't remember when I last did that. That's what I mean by getting my activity levels back. And we went for a lovely walk this afternoon, with the dog. Again, lots of stops. And I was glad to get back to the car, because I was tired, but I had no pain.
I intend to keep going. At the moment my main problem is just that I get tired, I'm not used to being able to do things. I need to get stronger again.
I can't imagine how it is for you at the moment, but I do hope that it gets better. I really do.
Re: Lyrica
Hey Kathy,
I'm sorry you are having a rough time right now. I have been on 300 mg of Lyrica and 90 mg of Cymbalta since last spring (had to go up slowly so I'm not sure of the exact date). I feel like these meds saved my life. I think I may have told you that before, but I always like to share because it helped me so much.
I went from not being about to sit for my graduation last spring to being able to sit for 8 hours for three days in a row this February for the bar. I'm not sure if it is the Lyrica or the Cymbalta that helps the most, or the combo.
The only side effect I know is from the Lyrica (because I could tell when it was raised) is drowsiness and sometimes memory difficulties. But I think it is so worth it. I'm a little concerned what will happen when I want to have kids, but what a problem to have after thinking I would never be able to have sex.
Anyway, I take 150mg twice a day. I truly hope that you get some pain relief and find a good pain doctor. My psychiatrist prescribes it because she specializes in psychopharmacology and is familiar with chronic pain. If you want her info I can give it to you, although you might be looking for someone who can do more than drugs. Please keep us posted.
Hugs, Jackie
I'm sorry you are having a rough time right now. I have been on 300 mg of Lyrica and 90 mg of Cymbalta since last spring (had to go up slowly so I'm not sure of the exact date). I feel like these meds saved my life. I think I may have told you that before, but I always like to share because it helped me so much.
I went from not being about to sit for my graduation last spring to being able to sit for 8 hours for three days in a row this February for the bar. I'm not sure if it is the Lyrica or the Cymbalta that helps the most, or the combo. The only side effect I know is from the Lyrica (because I could tell when it was raised) is drowsiness and sometimes memory difficulties. But I think it is so worth it. I'm a little concerned what will happen when I want to have kids, but what a problem to have after thinking I would never be able to have sex.
Anyway, I take 150mg twice a day. I truly hope that you get some pain relief and find a good pain doctor. My psychiatrist prescribes it because she specializes in psychopharmacology and is familiar with chronic pain. If you want her info I can give it to you, although you might be looking for someone who can do more than drugs. Please keep us posted. Hugs, Jackie
Started with vulva itching 2/11. Diagnosed as vulvodynia and then PN in 01/12. Progressed to sitting pain and constant burning. Received 4 nerve blocks with only temporary relief, did year of pelvic PT before being diagnosed with bilateral FAI and hip labral tears 7/12. Did orthopedic PT 1.5 years. 3/13 Arthroscopic hip surgery at HSS with Dr. Kelly. Take cymbalta and lyrica daily. About 97% better than worst point thanks to combo of surgery and meds. Yay!
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helpmeplease2013
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Re: Lyrica
Hi there,
New-ish on this site -trying to research things on my own. I struggle from constant PGAD -for years. I haven't tried any meds yet -but have just been prescribed Lyrica. Would appreciate any further info -especially regarding PGAD. Interesting that hip pain was mentioned -I've only just read that their is a connection with hip/SI joint. I have also had major hip pain with no chiro/physio that can heal it for years. Is there a connection?? I really wish I could find a Doctor that could help.
Thanks for your help.
Jenny
New-ish on this site -trying to research things on my own. I struggle from constant PGAD -for years. I haven't tried any meds yet -but have just been prescribed Lyrica. Would appreciate any further info -especially regarding PGAD. Interesting that hip pain was mentioned -I've only just read that their is a connection with hip/SI joint. I have also had major hip pain with no chiro/physio that can heal it for years. Is there a connection?? I really wish I could find a Doctor that could help.
Thanks for your help.
Jenny
Re: Lyrica
Hi Jenny -
I am so sorry to hear that you are having problems with PGAD. This is something that I used to have, as well, so I know how miserable it can be. Just crazy-making, I hated it worse than the pain. In my case, it went away after the big mesh removal surgery that I had in 2011. I do know how lucky I was, in this respect. Before the surgery I did get some relief from the symptoms with tramadol, and also, of course, ice, Emla cream, and lidocaine. I think I tried just about everything, I'm sure you know how that goes. It makes one desperate...anything to make it stop... ice was best, I think.
With regard to hip pain - I know there are several people on these boards who've found that their PN problems have been caused by a hip disorder - I think it was a labral tear? But I don't really know anything about this, myself.
Could I suggest that you post in the Welcome Center? - click the button that says New Topic, and introduce yourself a little bit. You'll find that more people will see your post, and come forward with responses then.
I am so sorry to hear that you are having problems with PGAD. This is something that I used to have, as well, so I know how miserable it can be. Just crazy-making, I hated it worse than the pain. In my case, it went away after the big mesh removal surgery that I had in 2011. I do know how lucky I was, in this respect. Before the surgery I did get some relief from the symptoms with tramadol, and also, of course, ice, Emla cream, and lidocaine. I think I tried just about everything, I'm sure you know how that goes. It makes one desperate...anything to make it stop... ice was best, I think.
With regard to hip pain - I know there are several people on these boards who've found that their PN problems have been caused by a hip disorder - I think it was a labral tear? But I don't really know anything about this, myself.
Could I suggest that you post in the Welcome Center? - click the button that says New Topic, and introduce yourself a little bit. You'll find that more people will see your post, and come forward with responses then.
Re: Lyrica
Hi Jax,
I just wanted to say thank also for your info about Lyrica ..so glad it helped you to sit. That is a lifesaver and can understand how that would give you your life back.
So happy for you. I do think its a combo that helps best and will have to see what I can take.
To sit just long enough for meals with family or at a social event, or to drive to the market and errands, and to stand for normal amounts without this incredible throbbing are my first goals.
Im hoping to up the Lryrica safely but quickly; waiting to hear from my pelvic gyn as to how to dose it this time. ( I have the 25mg pills) ..Meanwhile hoping to find new pain mgmnt doc soon (to manage things and help me switch off the meds that seem to be doing nothing or hurting...etc.
Thx for mentioning your psycho-pharmacologist as a possible resource. I really appreciate it and will let you know if I need her info.
Hugs to you!
Kathy
I just wanted to say thank also for your info about Lyrica ..so glad it helped you to sit. That is a lifesaver and can understand how that would give you your life back.
So happy for you. I do think its a combo that helps best and will have to see what I can take.
To sit just long enough for meals with family or at a social event, or to drive to the market and errands, and to stand for normal amounts without this incredible throbbing are my first goals.
Im hoping to up the Lryrica safely but quickly; waiting to hear from my pelvic gyn as to how to dose it this time. ( I have the 25mg pills) ..Meanwhile hoping to find new pain mgmnt doc soon (to manage things and help me switch off the meds that seem to be doing nothing or hurting...etc.
Thx for mentioning your psycho-pharmacologist as a possible resource. I really appreciate it and will let you know if I need her info.
Hugs to you!
Kathy
Re: Lyrica
Hi Folks
While I am the hunt for a new pain mgmt doc my pain worsens. I have Lyrica that my pelvic gyn rx'd back in Jan. Its is low 25mg. I did start it back then but after about 2 wks or so had a bladder flare so stopped it ..later realized the flare prbly was not from Lyrica .
So now I need to re-start something asap and think Lyrica could help. Im crying in pain and hubby is begging me to try it.
I emailed the doc who gave it to me..she is a gyn and is suddenly quite reluctant about rxing any meds lately (her issue?) and she recommended seeing another pain guy before starting.
I have some prospects I will see in the next week or two who are closer to my home,, but meanwhile want to start it...the pain is too much!
We can't understand why my pelvic doc who rx'd in the first place now wont' dose it now.
I am on the same meds as I was then,
Hubby insists its safe if I start low 25mg as both my doc above and another respeocted pain doc at HSS had said it would be a good med for me..The latter doc at HSS also knew the other meds I was on (methadone and my supps)etc
I want to start on it asap as I have no idea if the docs I see next week will work out... IF they don't there is another NYC doc, but he is $$$ and a long commute etc (last resort)
So ... any opinions is it safe to start on my own as hubby says... he is mad at me for not taking his advice, when he sees me suffering
Thx so much..I promise ...you won't hear from me as often once I find a responsive and good pain doc!
Kathy
While I am the hunt for a new pain mgmt doc my pain worsens. I have Lyrica that my pelvic gyn rx'd back in Jan. Its is low 25mg. I did start it back then but after about 2 wks or so had a bladder flare so stopped it ..later realized the flare prbly was not from Lyrica .
So now I need to re-start something asap and think Lyrica could help. Im crying in pain and hubby is begging me to try it.
I emailed the doc who gave it to me..she is a gyn and is suddenly quite reluctant about rxing any meds lately (her issue?) and she recommended seeing another pain guy before starting.
I have some prospects I will see in the next week or two who are closer to my home,, but meanwhile want to start it...the pain is too much!
We can't understand why my pelvic doc who rx'd in the first place now wont' dose it now.
I am on the same meds as I was then,
Hubby insists its safe if I start low 25mg as both my doc above and another respeocted pain doc at HSS had said it would be a good med for me..The latter doc at HSS also knew the other meds I was on (methadone and my supps)etc
I want to start on it asap as I have no idea if the docs I see next week will work out... IF they don't there is another NYC doc, but he is $$$ and a long commute etc (last resort)
So ... any opinions is it safe to start on my own as hubby says... he is mad at me for not taking his advice, when he sees me suffering
Thx so much..I promise ...you won't hear from me as often once I find a responsive and good pain doc!
Kathy
Re: Lyrica
Kathy, I would think that the doctor who saw you back in January is probably a bit reluctant to prescribe you anything now, quite simply because it is a while since she's seen you. And your condition has changed - well, actually you are worse - and I'm sure that is why she is recommending you see another pain doctor.
With regard to Lyrica/pregabalin. Yes 25mg is a low dose. In fact, a very low dose. I can show you the Pregabalin Dosing Schedule from the Pain Clinic that I used to attend - here - scroll down a bit and you'll find it. This would be doses prescribed by GPs, not necessarily by consultants at all.
The first time I took Lyrica/pregabalin I started at 25mg a day and stepped it up by 25mg each week. Took absolutely ages to feel any effect at all. I was getting some pain relief at 150 mg a day, better at 200mg, and good pain relief at 250mg. This time I started at 75mg a day and the whole thing is rather different as I am taking it in combination with another med. To put it into perspective, I have permission to go up to 300mg, lots of people go higher than that to get good pain relief - I've heard of people needing 600mg.
If you want reassurance, could I suggest - can you call your GP and talk on the phone? just tell them that you are starting this med? 25mg is a very low dose indeed, as you can see from that Dosing Schedule, but perhaps this might help you to feel a bit better about it.
Personally? - I'd probably just go for it. Better late than never.
With regard to Lyrica/pregabalin. Yes 25mg is a low dose. In fact, a very low dose. I can show you the Pregabalin Dosing Schedule from the Pain Clinic that I used to attend - here - scroll down a bit and you'll find it. This would be doses prescribed by GPs, not necessarily by consultants at all.
The first time I took Lyrica/pregabalin I started at 25mg a day and stepped it up by 25mg each week. Took absolutely ages to feel any effect at all. I was getting some pain relief at 150 mg a day, better at 200mg, and good pain relief at 250mg. This time I started at 75mg a day and the whole thing is rather different as I am taking it in combination with another med. To put it into perspective, I have permission to go up to 300mg, lots of people go higher than that to get good pain relief - I've heard of people needing 600mg.
If you want reassurance, could I suggest - can you call your GP and talk on the phone? just tell them that you are starting this med? 25mg is a very low dose indeed, as you can see from that Dosing Schedule, but perhaps this might help you to feel a bit better about it.
Personally? - I'd probably just go for it. Better late than never.