Has anyone stopped taking Lyrica (Pregabalin)

I have been taking this since December. Just low dose 50mg capsules once, sometimes twice per day. Although they did help me to sleep, they didn't seem to do a lot for the pain, and I definitely didn't like the side effects. Especially the weight gain

I asked my doctor if I could try something else - he said no.

I had a Vitamin D test and was found to be deficient, and am currently taking pure Viamin D capsules

On a routine visit on Thursday I was asked if the pain was any better, since completeing the first ten days of the Vit D? I replied no.

I mentioned again the side effects of Lyrica and asked again if I could change them. Doc asked if I wanted to stop taking them? I said yes, so he told me to stop them. I asked about lowering the frequency first, or just stop? He replied just stop. I asked if he could suggest something else instead but he said no, he wanted to see how I go first - go back in 2 weeks

So the last capsule I took was Wednesday night. By Thursday my legs were aching a little, by yesterday they were aching a lot, and today it is unbearable. It's mostly my thighs and the pain is deep, like a gnawing, nagging toothache. I wondered if anyone else had this? I didn't have this pain before taking Lyrica, so have wondered if the pain is just a coincidence, a withdrawal symptom, or if this is what my Fibro will be like without the Lyrica?

I'm in agony right now, and don't know what to do with myself to ease the pain, but if it is just a withdrawal symptom, at least I can wait for it to pass. Right now I am really tempted to just go take a Lyrica, but really do want to give them up due to the side effects, though the side effects are not as bad as how I feel right now.

Does anyone have experience of this?

Thanks

Em

19 Replies

oldestnewest
  • hi,

    i've been taking pregabalin for a year n half now ,im lucky as my doctor is brill and has been studying fibromyalgia fro 20 years ,,he put me on this and explained that i shpuld start on the 50 dose and build it up to 600 ,if there was no difference then iy was the wrong medication, when i started it took a good few mionths to start working ,but i knw now that if i dont my fibro is severe like the pains you described,it takes a while with the pregabalin ,but it steadies itself out eventualy ,,,,

    i know that it has help to improve some symptoms ,,,im also on

    duloxetin , vit d , and dihydrocodiene, also penecilin ..for my lack of spleen ,,,

    but there is not really alot of meds tp help fibro just to ease some of the syptoms,

  • Hi reuberta, i saw you have lost your spleen, i did back in 79, they put me on penicillin and then took me off it then on then off, been off it for years now, take pregabalin and tramadol twice a day plus other tablets i once went away for 3 days and forgot all my tablets, it was a nightmare, i do know if i forget any of my tablets, good luck to all with fibro cause sometimes i feel like s**t gentle hugs,

  • hi ,

    i lost ,y spleen back in 87 in a car accident ,i was not told about penecillin till about 96 ,i then started taking thnem ,,but noow adays i just take them if i feel a cold or any bug coming on i then do a proper week or two of them ,which is where they think i got the fibro ,mind i only got diagnosed a year ago ,i was told all sorts before ,iit was a non descript virus n culd stay for life or it might not !!!!!

    i also hadv hip surgery 2 yrs ago i had a labral tear ,,then i started physio wich of course made me have mpore exctreme pain ,so im now left with a weqak hip too ,the pregabalin doesnt stop the pain it just eases it sometime ,but reallyn there int no relief fromm this illness , i have 4 children too ,luckily i have a brilliant partner who never complains

    some mornig my feet sieze up so much ,and if i roll on my back i cant move because it creats so much pain ,i put my arms round his neck and he basically takes me to the bathroom ,as the tendons in my legs release with an almighty crack .that the one thing he doest like to hear

    im actually st on bed now in pain as taking the small one to minor injuries has started off my back .,its has severe pain ,,,n i hope my doctor hurries up

    i hope you all have some relief and sending positive vibes n hugs to all of you that are sufferimg

  • I know there is a lot of stuff available, to try. I just seem to have bad reactions to most of it :( My previous doctor was prepared to let me try stuff, but the one I have now is too cautious, I think he is concerned at the expense.

    I've never had pain like this in my legs before, and I'm just hoping it is a withdrawal symptom, because I just can't stand this. I am taking codeine to take the edge off the pain, and am literally counting down the hours until the next dose. I'm glad you have found something that works for you, and have such a great doctor. I really don't want to go back on the Lyrica, but anything has to be better than the way I feel right now.

    Thanks for replying

    Em x

  • Hi Em,

    Answering you some hours later.

    If your pain hasn't eased by now, you should maybe speak to your GP. Severe leg pain can be serious, and it may not be caused by drug withdrawal. There's always a possibility of venous thrombosis, especially if you're unable to exercise much, so try your GP, or even A&E if you can't get GP on a Sunday.

    You should be able to get some alternative medication for your pain in any case. Hope you improve soon!

    Moffy x

  • Thanks Moffy

    My GP's an idiot. I'm finding codeine gives some relief, though it wears off after three hours. As my pain has always been a more or less constant thing I have often wondered how I'd know if I was having a flare up

    I think I just found out. :(

    The pain is still present (thighs only now) and not as intense as yesterday, feels like my legs have got toothache.

    Unless it gets any worse I was thinking of riding the storm over the next few days before phoning surgery. If it is a withdrawal then methinks I don't want anything else for the pain. I am now only just realising how many side effects from Lyrica I was living with, and blaming the fibro.

    I know medications are different for everyone, but this is one I most certainly never want to take again

    I don't exercise much, but I do try to keep moving throughout the day

    Thanks again

    Em

  • I have been on Lyrica for a couple of months and have worse pain since taking it the pain you discribe in your legs is exactly what I have been experiencing since about 2 weeks after taking it.

    I decided last night to reduce the dose to 2 x 2 per day instead of three and so on to see if better off without, after the worst weekend so far. I slept from 10pm Friday to 11.15 am Sat and then 12.30 to 7pm then 11pm to 11am today. The sleeping has also got worse since taking the pills and this is not a refreshing sleep

    I cannot keep this up as I do not have a life and I feel worse on Lyrica. I also have Very low Vit D, underactive Thuroid and Diabete to name but a few.

  • I always stuck to a very low dosage as I couldn't tolerate more than 50mg at a time. Even that would at times make me so dopey.

    Whilst taking them I didn't have the pain in my legs, though the pain in my hips seemed worse. I also slept much better. Still waking many times a night but actually able to drop off to sleep, which for me was something of a novelty.

    I have gained weight,constantly bloated, visual disturbances, no short term memory, no concentration span, always hungry, even within an hour of a meal, constant severe headaches, raised blood sugar levels, and my eczema kept flaring up. Although many of these things could be put down to Fibro, I also realised they could in fact be side effects of the Lyrica, so wanted to stop them.

    Because of the low dosage, my doc probably didn't expect side effects - neither did I because for the last fortnight, I have only been taking 1 x 50mg capsules per day.

    It's only been three days, in myself i feel better, can see better, am not bloated nor constantly ravenous and the headache has finally gone. However I am still doped up on codeine due to the agonising pain in my thigh muscles. Hope it wears off soon

    Em x

  • I'm on Co-Dydramol for the extra pain as paracetamol is useless. I am on Lyrica, one at 7am and one at 7pm. Fed up with bloating etc but discovered it was the Amitriptyline as I increased it by 5mg owing to not having the right dose tablets to hand and my feet swelled up. Reduced it by 5mg less than I am meant to be on so now taking 20mg and my feet are still swollen but not as bad.

    What I mean is, you have to be sure what is causing what. Try heat or cold on your thighs to relieve the pain - a hot water bottle or wheat bag would help do this. BUT - Check out deep vein thrombosis as that is life threatening and not something to be left for days. Go on NHS Direct as soon as you have read this - be safe. Please.

    Hope you feel better soon.

    Soft hugs

  • Thanks so much for your concern. I did check out DVT. I haven't any swelling, discolouration, or tenderness, just the deep gnawing nagging pain in both thighs. There is no lumpiness and no hot spots, if anything the skin feels quite cool to touch.

    I never had pain like this prior to taking Lyrica, but it seems rather a coincidence that as soon as I stop taking them this pain occurs.

    The pain isn't as severe today, still there, just not as bad. Codeine is keeping it in check. Paracetamol does nothing for me and I'm unable to tolerate NSAID's. I am prescribed 60mg doses of Codeine so use that. Heat doesn't help the pain, and cold makes it much worse.

    I had to give up Amitriptyline due to severely dry mouth (couldn't speak) and really bad night sweats. I don't miss them. I already feel better in many ways for not taking Lyrica so won't be going back to them. I have looked up withdrawal of Lyrica on various medical websites and though vomiting, diarrhoea, and severe headaches are the main withdrawal symptoms, muscle pain is mentioned. So, I am thinking that either this is a withdrawal symptom or stopping the Lyrica has caused me to go into a flare.

    Thanks again for your advice. The best thing about this site is that people here do understand and genuinely care about each other's welfare.

    Em x

  • hi... I am new to this site,, I am 37yrs old I was in a car accident 13 years ago and found out 14 months ago that I have a herniated T7/8/9 disks that caused a small crack in my spine..the upper part of my body is hard to move doing certain things the doctors say that they can not operate cause it will be to risky,,they would have to remove my rib cage and deflate my lung and go in from the front without touching my spinal cord I guess this would be to risky.... I have been off from work for the last 8 months,,,I started off at small doses of lyrica but was increased within a month cause I was not able to walk to breath from the pain...when I stopped taking lyrica my dose was 150gm in the morning and 300mg at night and I just stopped taking them about 2 weeks ago, I stop cause I gained 80 pounds my vision got worse and my pain was still there ...the first 6 days off of them was hell the pain in my spine and my legs I thought I was going to die but it did pass I am still in a lot of pain at times but I am on elavil now just started them so now I am waiting to see if it helps.. I know they are well out of my body by now but weird things are happening to me now after stopping,,my vision has still not improved and for some unknown reason I can not hold my urine i seen my MD yesterday but we went over a lot of stuff with me health and I forgot to ask im about this,........... is there anyone else having the same issues coming off of them?

  • Goin through same pain worsen after cold turkey really sucks

  • Oh my goodness stopping lyrical is a no no the withdrawal is horrible even cutting back I called it the demon drug I had sores on my face from it they got nasty I was digging at them could not stop myself I had the worst time getting off that drug it was like it didn't want to let me go you should probably either get a different dr or gradually reduce them yourself is a lot of pain involved I felt like I was dying sorry to hear your dr is treating you like that mine had me gradually get off it good luck to you

  • I see this post was 3years ago I was wondering how you doing now hope your well

  • Hi Seren,

    I think it was two years ago. I recall it as being around Easter time 2013. I am doing better now, thanks for asking. The pain did seem to be a withdrawal from the Lyrica, I won't ever take it again. The doctor was an idiot as well for just telling me to stop it without cutting down. I am glad to be off it as the side effects for just weren't worth it.

    I developed ME as well a couple of years ago, a couple of months after this post following the traumatic death of my mother. I now have a different doctor. The old one and I weren't on the same page regarding Fibro, so he certainly wasn't the right person to treat it.

    I am now taking Duloxetine which reduces the awful leg pain - which oddly enough only developed after stopping Pregabalin. Side effects at first weren't good, I couldn't sleep and it made me sick, but I persevered and it settled down.. Although we all have Fibro, we are all different, so it is just trial and error I guess in finding what works, though of course you can only do this with a doctor who will help.

    Hope you are doing OK?

    Regards

    Em x

  • I had a bad day yesterday very tearful I have to realise this isn't going away which is hard to take in sorry about you mum hope you doing ok x

  • Sorry to hear your day was bad yesterday. I know where you are coming from. I could not accept the Fibro diagnosis, and spent over a year waiting to get better. I even thought (hoped) they had the diagnosis wrong, and I didn't really have Fibro. I was sent to pain clinic and to a psychologist, but I was just going through the motions. My idea of pacing was to do as much as I could when I felt well enough, and not quite as much when I felt unwell, or tired. I was so houseproud, that I just had to keep doing things. It took more than two years to accept my condition and its limitations, to get my head around pacing, and put it into practice. Finally I have worked out that sometimes I need to put myself first. I do push boundaries when I want to do something, but I know beforehand the price I will pay so only do it when it is something I really want to do and have a few clear days afterwards to recover.

    I still miss the person I used to be, but now accept this is the way it has to be now., like it or not.

    Thanks for your condolences. It's 2 years now since I lost mum. The way she died was very traumatic, which triggered off the ME. It still haunts me, but that's just another thing I cannot change.

    Life sure can be tough, but hopefully I'm tougher. I am no good at giving in and accepting defeat, so I need to learn how to deal with things differently and stop treating every set back as a challenge. I find this and the Facebook Fibro group very helpful & supportive.

    I know it's easier said than done, but try not to let it get you down, because if you do, it has won. Make sure you control the Fibro and not the other way around, and remember that the only thing tears change is your face- they give you wrinkles :)

    Hope you have a good weekend

    Em

  • Wow I have a slipped disc and Crohn's disease and hydrodentitis supportiva and fistula disease. Well the slipped disc i had for years but only at night (can't turn in bed) and every morning my daughter have to get me out of bed and I have to have a burning hot bath for about half and hour then I'm right as rain. Well I had a mild flare up of the crohns due to selling my pets puppys I was heart broken and were my back was still bad it started bothering me in the day also. Well I got what felt like a crohns flare up in my ribs I was already on steroids because crohns was niggling and when I went doctors thinking it was trapped wind but I can't take anything so needed medical advice they told me I had inflammation in my ribs due to standing different and walking different and I hold my breath a lot with the pain in my back and also it's pinching a nerve that runs down my right leg to my toes which is like having a permenant dead leg and at night I can't sleep due to fear of not being able to get out of bed. And the pain. And not getting comfy because if the leg. The doctor put me I lyrica because I am not aloud to take anti inflammatories due to having crohns. Well I now wear glasses around he clock due to what I call brain and eyes fogging. It's like I'm always in a cloud. I was on 3 tablets aday but having 3 small girls I can't get anything done and the final straw was when my 4 year old begged me not to sleep again. I took myself down to 2 a day because having 3 school runs (nursery in the middle of the day) and 2 diff schools I didn't have the 2 hours after taking every lyrica to just sleep. I hen tried to come of it on my own because I don't like how I can't think or see or drive or pay attention to my kids, I was having to write letters to pick my kids up from school so I could take my meds. Well best way to describe it is I feel like I've been hit by a car. The first time I tried to stop it the pain in my ribs came bk so I carried on with it then the second time I tried to come of it my whole body aches to the point in laying on the floor begging my husband to help me. I did not have pain like this before a so feel awful at the thought that I can now be left with fibromyalgia and it's just a waitin game. I can't sit stand or walk for lay for long periods of time and I am suffering with what feels like carpool tunnel syndrome It's all so unbareable. I am now on day 5 of the third attempt to stop it. I have been on it only 4 months but been begging the doctors to take me of it. In the end the doctor said stop it and get thro it or keep taking it and get on with it :( I have put on 2 stone in 4 months I am bloated and can't stay awake (my husband and kids said its very scarey Coz my eyes roll around in my head and I just fall asleep) then when I'm awake I'm slow as a snail and the eatting is a joke. Also I started wetting myself. I do have 3 small girls but I'm 33 years old and this has never happened to me before. One thing I don't suffer with is the head aches. But all my mussles and my joints hurt so bad that sometimes I can't bring myself to move for fear of pain even tho I know staying in the same position will also do damage. Something else I'm struggling with is I am testing positive to strep b! My periods are not right as in a few days here and there to 2 week gaps so I was due a smear test and asked them to test everything else to make sure nothing to do with hormones was the one coursing it. When the test came back first time positive the doctor put me on antibiotics. Jen after another month-2 months i wasent feeling any diff. I had the eats done again and low and behold there It is. Strep b positive again, this time doctors have just left me and said they can't do anything about it and it won't hurt me :( also I should mention that for my crohns j am on a immune suppressant used for organ transplants and used in leukaemia to stop my immune system atacking my digestive system and I've been on these for about 8 years on and of inbetween having my kids, I also have blood tests every month to make sure my kidneys and liver are still working properly and to check my blood count. I am also on long term antibiotics for the skin disease 'tetraysal' I was on clyndamycin and rifampicin for 2 years but they changed them all over. And anti depressants for anxiety. I know none of the other pills I'm on are doing this because I've been on them for years and his is stupidly bad. I do not know why I feel so awful but feel worse because I'm reading that this could be me for the rest of my life. I just wana cry. I'm also on dyhydrocodeine at night for the slipped disc as its he only thing hat works. Paracetamol is not worth it , codeine closes the bowel so I can't go loo which results in crohns flare ups and I can't have nurofen or anything that thins the blood. I'm screwed. And when I hurt myself now it kills like I am going to pass out.

    I don't know what to do with myself or why I now have strep b or even were hat has come from. I am completely in limbo. All I know for sure is lyrica is never touching my lips again :(. Oh and to add to all this I am hypermobile so that's why after years of on of back aches and having the kids in the end I have a slipped disc.

    When I go doctors it's like they don't care and lyrica (and steroids is there answer to everything) skin is dry around my knees and elbows and my skin disease has flared up really bad.

    I can't stay like this forever it's not fair :(

  • Hi, I have been on Gabepentin for my terrible back pain but had to come off after a few weeks as I was having terrible thought. Back was no better so went see doc again after having a pelvic ex-ray but the results aren't in yet. I told him I couldn't stand the pain much longer & was limping very badly, also affecting my bladder & bowed.

    He put me on pregabalian only a couple of days ago, started with a very low dose 25mgs twice a day. Cannot take them, only been two lots of pills & I feel awful, backs not too bad but I feel sick my legs have swollen up,lips throat & tongue, terrible heartburn even after taking my Lanszaprozole twice a day, not eating. I have a very bad reaction to a lot of tablets. On 50mg of Tramadol at night, he gave me an extra dose of 25mg but the body & brain said NO! So now I have to tell him I can't take these pills either & at wits end with my back + hips & both kinds of Arthritus , Fibromyalgia & no muscle left in my arms. Next week have to go for a PIP assessment & dreading it too.

You may also like...