been prescribed pregabalin....

Well its only taken me over 2 years to find a doctor willing to try this!!

Pregabalin (Lyrica) is an anticonvulsant med that is also used to treat chronic neuropathic pain:

"LYRICA® (pregabalin) capsules CV is believed to work within your body to calm the damaged or over-excited nerves that cause pain. Although the exact mechanism of action is unknown, results from studies suggest that LYRICA is believed to work by reducing the number of "extra" electrical signals that are sent out from damaged or over-excited nerves"

Im a bit scared of the side effects but my GP said to start slowly..so am gonna be on 100mg and work up to 300mg (100mg x 3 a day) over a few weeks. I will keep a pain diary over the next few months too.

Im more scared of the risk of suicidal thoughts! but as im aware of this if I do notice serious depressive symptoms I will come off it. The drowsiness im not to worried about I just dont sleep so could do with being drowsy! Now the weight gain I might get might pee me off but If it helps with pain I'll suffer that and just eat better (I eat crap anyway lol)

At least this is something I can try whilst I reduce the citalopram..am doing well with this with no side effects:) am only on 10mg and feel fine..if the Lyrica dont work then at least I can be free to try amitriptaline..

Just took my first pill...am so nervous!! Wish me luck!

Good luck Sebby, I wish you all the best!!!

I'm starting my pregabalin today! I was prescribed it ages ago but haven't got round to taking any for various reasons. I'm worried about the side effects too, especially as I'm still on Ami as well. Good luck to us both Sebby!

Actually Sebby on the subject of different types of painkillers I'd be interested to know how many women with pelvic floor problems or musculoskeletal issues contributing or causing the vulvodynia get relief from painkillers. For years while I've been going to physio with my painful joints and muscles I've been told painkillers probably won't help and nothing I've been given has done any good. As for the Ami I'm on it doesn't work either, I keep seeing posts online from women who have excellent results with a tiny dose and yet 50mg a day makes next to no difference to my pain. I'm wondering if it can't be controlled with painkillers if it's of musculoskeletal origin? I'd be interested to know if any of the ladies with a tight pelvic floor have actually had any positive results from any type of painkillers?

thats uncanny Sarah cos tweety has also just started on pregabalin yesterday!

I was wondering if they would be effective if its a pelvic floor issue? Maybe it depends on the type of painkiller?

Maybe even if its a pelvic floor issue the nerves may still be over firing? we'll have to wait and see.

Ive tried anti inflamatorys but they dont work cos I dont think its an inflamation issue?

The co-codermols 15mg were a little effective just cos they sedated me so I wasnt as bothered lol

I'm not sure they can help mechanical problems because the irritating factor is ever present, I've had no luck with anything for my joints and I've tried most things. The physios keep telling me I can't expect more than about 25% relief from painkillers because my joints and muscles are getting more irritated as the day goes on. I have the same thing with vulvodynia, it gets worse as the day goes on so I'm really dubious about whether the pregabalin is going to be helpful. I don't know what I'll do if it isn't.

How did everyone get on with their first tablet? I've had a banging headache all day but don't know if that's a coincidence, but I've been really dizzy and woozy and fallen asleep twice which I'm sure isn't a coincidence as I don't start the day with a bottle of vodka!! I'm hoping these side effects will go off, even Ami didn't make me feel this bad.

Thats what I felt this morning! I took my first tablet last night 100mg. I woke up and felt dizzy and sereal, like I had been out last night and was still a bit drunk! Im felt ok by the afternoon tho but on the way home from work I could have falling asleep on the bus!

How much are you starting on? My doctor said to take a couple of weeks to build up to 300mg per day. Dont start on the high dose cos you will feel like your in la la land!

Im going to take 100mg for a week then if I feel ok with side effects try 200mg for another week then again if i feel ok up to the 300mg

But think about it this way..if a painkiller gave you 25% pain relief and the physio eventually gave you 50% pain relief thats 75%! even if in total it was 50% thats half the pain gone and could even get better as ongoing physio sorts out the muscles...

I like your positive attitude but sadly physio can't make my joints better, it can only stop them getting worse so I can't walk anymore so the 25% would be it for me. I'd take 25% over nothing though.

I'm only on the 50mg pregabalin at the moment, the idea was to build up slowly like you then decrease the Ami so I'm not a zombie with a mouth like a sandpit! I can't believe how dizzy it made me, I still feel a bit that way now and my head is still thumping. Hangover without any fun! I thought I might be ok, I seem to be able to tolerate Ami quite well so I thought this would be a breeze! My doctor told me to take 1 tablet for 3 days then 2 for 3 days then 3 and so on but I think I'll do what you're doing and stay at each dose for a week.

Im sorry to hear that the physio wont make your joints better

My mum has arthritis and suspected fibromyalga. She has pretty much all the symptoms but the dr doesnt yet want to make an offical diagnosis as she had tested positive for vitamin D deficiency and that is known to casue widespread bone pain. DR is waiting for the Vit D levels to go to normal. Have you had vitamin D tested?..its really worth it as if you are defficient that can cause additional pain.

Mum was on co-codermol but it caused too many side effects. She also had withdrawal when coming off them which was horrible. She switched to Tramacet which is Tramadol and paracetamole but is less Tramadol than in normal Tramadol only tablets so she gets less side effects. She is finding the Tramacet much more effective.

It does of course depend on the person and what tablets most suit them.

I believe the pelvic floor work will make the Vulvodynia better. If they can stop it going into spasm and being so tight then the irritating chemicals this releases 'Substance P' and 'Lactic acid' is reduced. Also more blood with the essential nutriants, oxygen and auto-immune chemicals will help to heal the tissue..

This is the theory im working on at the moment but I wont know until a good few months if it works! It seems to make sense though!

I have bunched up pelvic floor muscles because they perceive pain from a misfiring nerve system I thought?

Interesting what you said about vit D Sebby. I am constantly low because of CD and have bone pain in my hands and feet. So I get medication and then before long I have bone pain again. Lately the GP's nurse and another GP I saw when mine was away said that the tablets are not for Vit D deficiency they are for inflammation. So I don't bloody know. When I was diagnosed with CD I was chronically low in Vit D, B12, folate and calcium. The gastro prescribed tablets for the vit D and injections for the B12.

The new drug sounds a lot like Gabapentin. I didn't get any suicidal thoughts, I don't think I had any thoughts at all.

I do take vitamin D as I have sun allergy so have to wear sun block all through the sunny times of year, thankfully for me we don't get that many here in the UK! When everyone else is moaning about it being a crap summer I'm usually pleased! I think your Mum should see a Rheumatologist Sebby, I had to fight for 6 years to be sent to one and as soon as I got there he knew precisely what was going on. An official diagnosis is important in case supports etc are needed later on, if you watch Corrie the actress who plays Izzy has the same thing as me.

It's chicken and egg Mouse, nerves can cause muscles spasms and muscle spasms can irritate nerves so it's anybody's guess which came first. I too have diffuse pain on the outside as well as inside but when it first started it was more localised to the inner areas which is why I was given the q tip test.

Mum saw a Rheumatologist but he was rude and uninterested. That s the state of our local hospital drs! She now just see's the GP and she was the one who dianosed the vit D deficiency and has her pain under more control. We are lucky to have her She was also the only dr to let me try the pregabalin.

Mouse - get tested again for vit D and if you do have low levels take some and see if it helps the bone pain once the levles are normal

Mum got the Arthritis uk mag and they are currently doing research into Vit D and its important role in the condition. It could even be a big breakthrough!

Well im not getting any suicidal thoughts yet lol and finding im ok on 100mg so next week will up the dose if all is still ok

I get tested every few months for Vit D, it's always low but now they are telling me the tablets I take are not for that??? FFS!

What plonkers! ask for some vit D tablets and see if this helps with your bone pain x

That's a shame about the Rheumatologist, I was nervous when I went to see one that he wouldn't spot my hypermobility but I needn't have worried because my elbows and knees bend the wrong way quite easily and I can touch the floor with flat hands and straight legs no problem so it was very obvious and I scored high on the beighton score that they use for HMS. He then pressed a load of areas for pain and I had pain in them all and asked me about my sleep patterns and what happens when my hands and feet get cold (they go white and get very painful) and read through my medical history and announced Fibro as well. The only thing he did which I didn't like was call me in and then he practically ran to his room out of sight before I knew where I was going which left me muttering in the corridor "this is rheumatology not the bloody olympics" so a nurse showed me where to go!

I've had lots of appointments with orthopedics and neurology that didn't go as well though and ortho insisted I had a disc out and put me through yet another claustrophobic MRI (no disc out as I told him I wouldn't have) and the neurologist was a weird guy who held my hand alot of the appointment which I didn't like! It's really hit and miss isn't it.

How are you getting on with the Lyrica Sebby? I don't know if it's coincidence or not but I've had a really, really low pain day today, throughout the entire year I've had vulvodynia I've never got on top of the pain no matter what I've done but today I can't feel it much so I'm thinking it must be the Lyrica. I've gone up to 100mg a day today and I'm so spaced out it's taken me ages just to type this! However as Lyrica is meant for Fibromyalgia it ought to be very suitable for me. How about you? Still woozy like me with a sand dry mouth??

Im on the last few days of my period..so cue flare up! Glad to hear you had a better day with your pain!

Im still taking the 100mg at night but am a little woozy in the morning but it wears off pretty quick and have no other side effects!

To be honest Im such a hyper person I prob need horse traquillizer to get me proper sedated!

Its been 5 days now on 100mg and the sixth 100mg tonight so if I feel ok in the morning I will try another pill.

Cant cut them in half tho cos they are capsules

knowing my luck I'll take another pill tomorrow morning and by 11am will have my head on the desk at work snoozing lol

Good effect it seems to have is that im sleeping through the night without constantly waking up like I do

No noticable pain relief yet but it is period time so I'll see how I am in a weeks time

Good luck and hopefully your side effects will wear off soon!

I'm still only on 100mg a day and if I actually remember to take them on time it is helping I think. If I'm late with a tablet however the pain returns with avengence. Lyrica is also helping my widespread pain, again though only if I take them on time. How about you Sebby? How are you doing?

Glad to see it is helping.

I've been on the 200mg for a couple of days now. Just come off period and hence have had flare up so not noticed pain reduction yet.

Although I do notice it gets crappy in the afternoon (which is when I would have to take another pill if I was on 300mg)

I take 100mg morning and night. It helps me sleep no end and dont feel so drunk now lol the first day on 200mg I was away with the fairys!

I do hope this works or at least something works!

I think end of next week if im ok with side effects I'll try 100mg in the afternoon and see if it takes off that afternoon flare up

Hope it continues to help you! and gets even better!

Hi Ladies

Can I just say what a relief it is to have found this website.

I got diagnosed with Vulvodynia last year and the only symptoms I had was pain during sex.

I then got a very bad UTI which resulted in me being hospitalized and my Vulvodinia was horrendous.

I got the UTI's sorted out and was prescribed Pregabalin ( I was previously taking Gabapentim)

I gradually got up to the highest dose of 300mg twice a day (the highest dose)

I have had a bad flare up since NYE and get pain almost every day some days a lot worse than others and I am bed ridden and have to take time of work.

I am also seeing a specialist and have steroid injections but they didn't work. I am supposed to be going back to have a different kind in March but have just seen another specialist who inst convinced they work, but Ive not really got anything else to try.

I feel I am always tired due to Pregabalin and have put on weight which I hate.

I know that my triggers are stress and over tiredness but its really hard to avoid that. My job is a fundraisier. Im even thinking of changing my job to something less stressful as I don't know how much more I can take. It has come to effect every aspect of my life and I am finding it difficult to deal with sometimes, especially as Ive not yet spoken to anyone with this condition, so its a big relief to meet some people on here!!

I dont want to put anyone of Pregabalin, what works for some people doesn't always work for others.

Many thanks

xx

After what seemed like a promising start on the Lyrica I can honestly say it isn't working. I'm on the 150mg daily dose now plus 50mg of Ami with that and it's not making hardly any difference at all. I'm fairly sure the vulvar specialist will up the dose when I see her on the 14th of this month but that's exactly what happened with the Ami, it appeared to help for a very short time but once the wooziness decreased and I wasn't so out of it I couldn't feel anything at all the pain was very much still there. Upping the dose of Ami didn't help either. I can't help but remember what the physio said, she said if it's caused by musculoskeletal problems medication probably won't help much. I'm fairly sure mine doesn't come under neuropathic pain now with the lack of help I'm getting from meds aimed at that. That makes me think about the foreword is Heal Pelvic Pain by Amy Stein where Andrew Goldstein (vulvar specialist) said he was prescribing meds to women based on it being neuropathic and they often didn't work then he discovered the use of physio and found that more effective for most women. Makes me wonder what the point of taking all these meds is, as far as I'm concerned I'm just getting fat and have the dryest mouth I've ever had for no reason.

Hi Sarah, I'm with you on the drug regime. If you dont' know what fucken day it is what's the point?

Something is working for me at the moment. I don't know whether it's the physio or the diet - probably both! I don't think we can discount the fuel we give our bodies and how we treat them. Stress pops out in the most unsual places and then the body fights to protect the afflicted area.

The fight going on on my other group is over a Dr Goldstein but I believe there are a couple of them.

I dont mind not knowing what day it is lol but I do have an addictive personality. I cant deny im less anxious on lyrica but I dont think its helping the pain yet. Dr said give it two months but its all so confusing cos I wont know if its the biofeedback or the meds working! Grrrrr

Hey Sarah001,

Sebby already knows this, but i'm on Lyrica and have been for several months. I didn't read all of your posts, but one thing i know is 150 mgs is not a high dose. I was told i could technically go up to 450 mgs. I was on 150 mgs, then i went up to 300 mgs. i thought i was gaining weight, so i cut back to 150 mgs. the weight gain could have been my food and drink intake. at any rate, this med. helped me more than the others. keep in mind i am still on Gabepentin. the two together have worked well for me. but, i still have pain, damnit!

as for the pain meds. i take Vicodin..it takes the edge off of the pain when the pain is not horrible. don't know if it helps reduce pain in other areas of the body.

sorry, i don't visit this site much anymore. Sarah001...hope you're doing alright. We e-mailed each other several months ago. i spend most of my time on our facebook page.

ttyl

I know my 150mg is a low dose but I'm still struggling with dizziness even at that dosage and as I live out in the sticks and 7 miles from the nearest shop I kind of need to be able to drive! I wouldn't mind the "out of it" feeling if I didn't have to drive but can't be let loose in my car when I'm dizzy! I'm also struggling with co-ordination and finding I'm bumping into things alot which isn't great when you have a condition that makes you bruise like a ripe peach at the drop of a hat! I already get asked everytime I have to strip off for a doctor what all my bruises are from. I may have to change to something else I think.

As for not knowing if the meds or biofeedback are helping I wouldn't mind not knowing if something helped! It would be easy enough to find out too by dropping the meds temporarily and seeing what happens.