has anyone had good pain relief from lyirca

[ben3g]

Hi everyone im new to this site and was wondering if anyone has had good pain relief from the drug lyrica ? and also if there were bad side effects to this med .
ive had this pudendal pain for almost 3years now since i was 21 but aswell as perineal i also have sciatic pain in both legs and pain in my left testy which drives me mental lol anyway been prescribed this lyrica and am abit wary of the side effects the leaflet says it causes , tried amitriptyline but stopped because the side effects were so bad and am taking tramadol at the moment , the side effects im mainly concerned about are muscle pain and decreased sexual function , i mean sex with this is painful i no but if this takes the pain away then sweet but if it also stops me from being able to have sex then thats no good either , im hopeing this is only a tempory thing anyway taking this drug as i am wating to see a dr bararnowski in london pain clinic hopefully to try nerve blocks and this pulsed radio-frequency that ive read so much about , it would be good to here from someone who has this condition aswell like i dont no anyone who has it or i can relate to on these things took years for even my own family to believe there was something wrong with me and there really not interested in it at all so id well appreciate a response from another sufferer whos tried these things . cheers ben !

[Kate]

Hi Ben
Im on Lyrica at the moment. I started with 1x 75mg then slowly slowly went up to what Im taking now which is 2x 150mg. You can go higher then that too. I have had no major side effects. Just have to take something to stop constipation which is normal with most medications. I felt a little dizzy when I upped the dose but that only lasted a day or so. Im not sure if its giving me much releif from the pain though, but Im not going to stop it in case it is doing something Im not aware of. Everyone is different with the medications though. I had a horrible reaction to tramadol. I was buzzing & couldnt sleep for days. I think you just have to try it & moniter youself carefulling. If you dont like it then slowly stop taking it, making sure you comunicate with your doctor about your reactions to the medications. There is also a letter already written for us that we can take into our doctors that explain PN. I found it helpful with my doctor as he knew nothing about it.
Hope all goes well for you ben
Cheers Kate

[donstore]

Lyrica has helped me a lot. Side effects are minor, mostly after first increasing dosage.

[ben3g]

thanks for your comments , im starting at a really low dose to begin with so gonna see how i get on with the lyrica . the tramadol dont really agree with me either kate everytime i take about an hour after i cannot move n feel asif i gonna fall asleep plus makes me feel sick only taking it for when pain is quite severe-ish .
you mention a letter to take to doctors where is this - isit from this site ? did either of you ever find out how you got this in the first place ? because mine seems to be unknown - i used bike ride n weight train alot but my docs dnt fink anything of it but does say that is a cause on some of the sites . cheers take care !

[DoubleEdgedSword]

I just started Lyrica about a week ago. I'm on 2x75mg and I too was concerned about the side effects, especially the mental alertness issues and the depression issues, since I've had a bear of a year with health issues and my recent home invasion.

First couple of days gave me a persistent headache, increased sleepiness (I'm currently averaging 4 hr/night of broken sleep due to anxiety issues with a pain cycle and bad dreams from the 'incident'), and a fair bit of confusion. I wasn't able to follow my thought processes through to carry on a conversation well.. My train of thought was easily derailed!

It did help a lot with the pain, and I don't yet notice an increase in depression. It certainly hasn't helped with the depression at all (I thought removal of pain may increase my happiness but it hasn't), but I have a lot on my plate to deal with and I know it's not an anti-depressant, which I'd prefer not to take.

I go to the doctor later today to discuss with him how I'm coping with Lyrica. I'll let him know how things are going and let him decide if I should stop or if he thinks it's right for me.

Good luck with your treatment and I hope it'll end up helping you, since you've had adverse reactions to other meds.

[calluna]

Hi Ben3g - I had good pain relief with Lyrica - much better than with anything else. Right now I am not needing it, because I've had surgery.

I was told to take the dose up very slowly, weekly increments of 25mg, and to wait until the side effects had disappeared before I took it up another step. At first each step up made me feel very strange - weirdly spaced out and lightheaded, and I had a lot of trouble staying awake. But these effects got less as the dose got higher. At the beginning the time interval sometimes needed to be more than a week, but it all got much easier as the dose got higher and the pain went away. So for me the key was to take it slowly. I got some relief at 150mg, but taking it up to 200mg produced a big improvement - although it still wasn't completely gone. If I hadn't had the surgery, I'd happily have taken it up to 250 or 300mg.

I did not notice any muscle pain nor any change in sexual function at all.

If you are going to see Dr Baranowski then you can rest assured you will be in good hands, he is one of the very few doctors here in the UK with a particular interest in PN. I doubt that you will need to give him the letter - but anyway, you will find it here in the Announcements & Community section.

Regarding the cause - there are plenty of people who have got PN from bike riding, also from weightlifting. If you used to do both of these - well, that could be it.

Please remember to avoid sitting as much as you can - difficult, I know - and maybe think about getting one of the cushions that you'll find mentioned on the boards here. And I do hope that things improve soon! - do you have to wait long to see Dr B?



DES - if you have only been on Lyrica for a week, and your starting dose was 150mg, then I'm not surprised that you are still having side effects. You may well find that these go quite soon - so please don't give up on this too quickly.

I would urge you to get some specific help for the depression - you've been through so much recently and I think you should take all the help you can get. I too was averse to taking anti-depressants, but I did have to acknowledge that I wasn't coping so well (other things going on besides PN) - so please if your doctor suggests them, do consider this. Also - escitalopram and citalopram (antidepressants) - are used to good effect with PGAD. Just a thought...

And I do hope things improve for you soon.

[ben3g]

DES- id prefer not to take anti-depressant aswell they dont help ive tried that - i also have some anxiety issues about my health for the last 3years ive had other probs like stomach ulcers , urinary infections ( got a prostate one at the moment wich aint nice wich was caused by an epididymitis i had weeks ago ) had probs with bowels aswell wich have all made me depressed but angry n anxious more than anyfing , have trouble sleeping too i wake up alot every few hours n constantly feel asif i gonna just snap n get annoyed bout going back n forward to the docs even tho i have good docs , feel for you about the home invasion you spoke of that must of been terrible to deal with that whilest dealing with this pain and probs aswell , i also believe that if my pain wasnt there i wouldnt be depressed and anxious all the time but i most probably will ( hope not ) but il have to see good luck with your treatment too i hope things get better for you and thanks for your comment .

Calluna - i got a letter from doctor Bs clinic at the beginning of nov saying the waiting list is several months - i actually applied to be on embarassing bodies and they found him for me , i already knew he could help me but my old gp refused to refer me but dr B accepted me as NHS pateint but not to go on the show so my new gp just referred me ( thank god ) but was prepared to go on tv for this i cannot stand it lol yeah i think n have always thought the bike riding n weights caused this but i was in a car crash as a child n had a pelvic injury but was fine until i was around 21 . where did you have the surgery done n ive red that it can take absolutley ages to heals from that have you tried nerve blocks ? i read not alot of people get alot of relief from them but im gonna ask doctor baranowski if we can try that have you seen him before then ? oh and i got one of those doughnut shaped cushion things does help but press on my sciatic nerves abit . thanks for your comment how are you doing now after the surgery and when did you have it ? take care

[calluna]

Hello Ben - no I haven't seen Dr Baranowski, I have been to see Dr Greenslade - who is based at Frenchay Hospital, this is close to Bristol. I am in the West Country and it is only about 40 minutes in the car to Frenchay so a lot more sensible for me rather than going all the way up to London.

I have not had any nerve blocks. The reason for this is that they were not needed for a diagnosis, and Dr Greenslade felt that I would not be likely to get any long term help from them. And the reason for that is because my PN had a very specific cause. It was caused by a previous pelvic surgery which used a lot of mesh, and there is no way that a nerve block would help that. Dr G compared it to someone who has had a telegraph pole fall on them. Yes, good idea to give pain relief - no use at all trying to get things to heal as they are - what's needed is to take the telegraph pole away!

Anyway the repair surgery which I had at Frenchay in September this year included the removal of mesh (I don't know how much is left now) plus removal of scar tissue, plus a rectopexy. It was done laparoscopically, by Mr Dixon. So far I'm doing pretty well. I have pain at about the same level I had before the surgery, when I was taking Lyrica - except that now I am not taking any meds. I am still sticking rigidly to all the lifestyle changes that this condition requires of us, and have only had one major flare in recent weeks, which I managed with tramadol.

I too have gone through the NHS all the way, my GP was happy to refer me to Dr Greenslade. One thing that you might find useful - if you are getting quite a lot of prescriptions then it can get expensive - it is a good idea to get a prescription prepayment card which works by monthly direct debit, I've saved a fair bit by doing this.

I don't get on so well with doughnut cushions, I do have one and I use it occasionally but I find it not so good for my lower back. I prefer the Togu Airgo one, I've actually got a couple of these and they really help, for me.

I think you are very brave for even contemplating that television programme! I have never watched it, the trailers have been more than enough. But how excellent that they found Dr B for you. I found this forum first - and it was here that I found out about Dr G. Initially I had been told to wait and see if things settled down as the nerve healed - after more than 18 months of waiting I got fed up and asked my GP for a referral to Dr G. I had to wait 10 weeks to see him, which wasn't bad at all, really. Overall it was just about 8 months from when my GP referred me, to when I had the surgery. Again, pretty good.

Have you started taking lyrica/pregabalin yet? Is your GP happy to prescribe it? I had this from my GP (eventually) and as I said, it really helped, better than anything else. Before that we also went through all the usual things for neuropathic pain, it took ages to work through the list - I wish I had had the chance to start with lyrica!

[ben3g]

hi calluna - my gp had no problem prescribing me the lyrica , tramadol or amitriptyline i been offered gabapentin aswell it seems most of the docs ive seen or see about this only offer me drugs ( which i hate taking ) so im hoping that dr baranowski might have something else to offer me but i havent started with the lyrcia yet im going to and i have them infront of me just i have an acute prostatitis infection at the moment and taking doxycycline antibiotic at the moment , might sound funny but i want to make sure this infection clears up first in case the lyrica kinda blocks the pain from that away i dont think it will coz it for nerve pain but i want this infection to go before i take it - alot of people have replied to my question which im greatful for so i will defo try it because it sounds like its helping alot of people .

yeah alot of people say i was brave or mad for going to that show for help but im more desperate than anything to get this sorted and get some quality of life back like this has taken virtually everything away from me as in friends , social life , relationships , work and im only 24 ( had this since 21 ) i really want my life back or to be better than this and the producers of the show felt sorry for me and im greatful they helped me even though i not on the show .

ive heard or read about dr greenslade but bristols well far for me i live in essex so london is the better option it wouldnt take long on the train to get there - ah right i see what you mean then so surgery was the cause in your case , was it an entrapment or purely damage then to your pudendal ( not sure what mesh is tbh lol ) because my doc thinks mine is a type of neuralgia spreading from one nerve to another because i have sciatic pain aswell on both sides and he reckons muscle irritation might be causing the sciatic nerve tto play up - i dont no just glad he agreed with me on this condition coz ive had so many docs say never heard of that before and its all in your head it might be anxiety LOL one actually told me it could be MS took years to any kind of answer when i first saw a pudendal nerve website 2years ago and new thats what it was . tramadol helps when i flare upaswell just it knocks me out an hour later . take care

[calluna]

Sounds like you've got an excellent GP there!

It is a good idea to get some pain relief going as soon as possible, if pain goes on for a long time then the pain gate at the spine can get 'stuck' and that's not good. You don't want to leave the pain running unchecked until you see Dr B - and I am sure that he will have some other helpful ideas. He's very knowledgable.

You don't need to worry about whether the lyrica will block the pain from the infection - it definitely won't. Lyrica/pregabalin only works for neuropathic pain, and the pain from the infection will be nociceptive pain. No need at all to have two sorts of pain going at the same time - do what your doctor says and start the stuff!

You ask if in my case the nerve was entrapped - yup, it was 'completely embedded in scar tissue' - and it still is, unfortunately. My surgeon took away a lot of the scarring but felt it was not safe to go any further, and wasn't able to actually free the nerve. Mesh - well that's basically a sort of plastic or nylon based fabric, like netting. Surgeons use it to hold various bits of our insides in place when they are trying to fall out - like a hernia repair, for instance. In my case it seems that the mesh was bothering the nerve in some way.

Glad the tramadol helps - I managed with just this stuff for quite a while, after a bit it doesn't knock you out in the same way. But lets hope that the lyrica gets on top of it before you reach that point, anyway!