Pregabalin/Lyrica.: Hi, does anyone... - Fibromyalgia Acti...

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Pregabalin/Lyrica.

Claire133 profile image
42 Replies

Hi, does anyone take this drug? What do you think of it? Have you had any problems with it? Has anyone tried to come off it, and had problems?

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Claire133 profile image
Claire133
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42 Replies
Betty67 profile image
Betty67

Oh dear, did not get on well with these but I do not remember why. I think they helped with pain but increased brain fog.

Claire133 profile image
Claire133 in reply to Betty67

Thank Betty for the reply ☺

Regnofibro1 profile image
Regnofibro1

I take it but never tried to come off it. I too have gained weight but I just can't handle walking on pins and needles so...

mikeymoo profile image
mikeymoo

Hi there, I was taking Lyrica for over 2 years then I stopped as I had put on a lot of weight with it (common side effect). My pain clinic advised me to wean off Lyrica and start Duloxetine. After four months I've been back to the pain clinic and the consultant put me back on Lyrica. I voiced my concerns over weight gain and she said I have to balance that with the pain. So far so good, I am building up dosage to 300mg twice a day. It is very effective for pain but it does make me rather more foggy, especially combined with tramadol. Hugs:-)x

milo4 profile image
milo4 in reply to mikeymoo

Hi that's funny i am on both Lyrica and tramadol, and I have been foggy. The weight gain does bother me.

Trace xxx

Redroisin profile image
Redroisin

I started taking it but it made my arms and legs jerk like I was about to have a fit so came off it. Now I only take it when the pain is really bad and take a paracetamol with 2 tramadol twice a day

Claire133 profile image
Claire133 in reply to Redroisin

Thanks for letting me know that, I keep hearing similar jerky reactions. Maybe I'll give the Tramadol another try, I used it a couple if years ago when I may as well have been eating smarties bcoz it did nothing at all. It might be worth me doing one more try. Thanks ☺

Redroisin profile image
Redroisin in reply to Claire133

Try it with the paracetamol and see if that makes a difference.

Claire133 profile image
Claire133 in reply to Redroisin

Ok brill, I'll give it a go ☺

Maladjusted profile image
Maladjusted

I took it for 18 months, but didn't get on with it for a number of reasons. My doc told me to "stop it if you don't like it" He offered me nothing else, and gave no advice about cutting down before stopping. Consequently the withdrawal symptoms were extremely painful to the extent the pain made me cry.

I know it does suit a lot of people, and can be very helpful for neurological pain, I can only report my own experience, and personally would never take it again.

Em xx

Claire133 profile image
Claire133 in reply to Maladjusted

Thank you so much for the reply, I am asking because I gave researched it and read about these withdrawal side effects.

Poor you, that is disgusting that they never gave you any other advise or alternative medication because you must if been suffering in the first place, so now your back to square1. I'll defo think twice myself.

Thanks, Claire x

Maladjusted profile image
Maladjusted in reply to Claire133

I'm not too bad Claire. I did gain weight as others have done and found the withdrawal symptoms were really bad. I switched doctors after that as clearly the first one had no comprehension of the condition. When I later had a flare up the new doctor discussed various options with me, and then prescribed Duloxetine (Cymbalta) which I am still taking. I wish you luck in finding the right treatment for your symptoms Em xx

Claire133 profile image
Claire133 in reply to Maladjusted

Very glad to hear you found a better doctor in the end, some of them just haven't got a clue with this condition. Hope you carry on improving on the Duloxetine x

Maladjusted profile image
Maladjusted in reply to Claire133

It's not so much 'improving' as making it bearable. At least my new doc appears to have a brain :)

scottydog123 profile image
scottydog123

Hi Claire

I found Lyrica good for the jolting shoulder pain I suffer. Downside is I put on 3 stone in 6 months! GP disagreed that it was the medication so I am reducing by 50mg every 2 weeks. I have an appointment, with a different Dr, this week to discuss changing it. I was pre diabetic when previously heavy so am concerned about that. Last blood test was ok and so was cholesterol which was a relief I really hate being so big as I am only 5 ft 2!

My shoulder pain has returned and have been using Actipatch this week which has helped the pain.

Hope that helps

Scotty

Claire133 profile image
Claire133 in reply to scottydog123

Hi Scotty, thanks for your reply. Sad to hear it added weight, to your already painful symptoms. Hopefully the GP will give you an alternative medication.

I'm not looking forward to take it (if I do decide to), I've already put on 5 stone from Amitriptyline, if I put on weight from Lyrica, I won't be able to move.

Thanks for sharing your experience x

I came off it very slowly over weeks and weeks going down the doseage. I think it just gave me a hefty appetite and I got hot sweats as I remember and generally felt like I was in a fog.

Hope that helps

Claire133 profile image
Claire133 in reply to

Hi Sandy, that does help thank you. I'm just trying to weigh up the pros and cons. If I put any more weight on I'll go crazy. Have put 5 stone on with Amitriptyline and its doing my joint no favours at all 😢

alexander120 profile image
alexander120

I too have put on loads of weight without eating anything more, really don't over eat and don't snack much too. I have been on amitryptline since November last year and gabapebtin for about 5 months. Starting to wonder if they do help or not. It's frustrating. Just had bloods done and came back borderline diabetes, high Crp (which is inflammation) and high liver function test. Really need to loose some weight, I am thinking about stopping all the meds as I don't think they help enough.

Claire133 profile image
Claire133 in reply to alexander120

Hi Alexander, I think the weight gain is the Amitriptyline, I've gone looking on the internet to see if there's other people on the drug that have weight gain and there are hundreds. I've put 5 stone on and dont snack or eat much either. I only eat 2 meals a day and always fresh healthy food, I don't eat any sugar at all unless its present in a piece of fruit basically. I don't even drink cows milk, I drink soya and have done for 15 years. Its a nightmare. I can't even lose 1lb. The amitriptyline does nothing for my pain but I've stayed on it bcoz it keeps me asleep at night and before I had a severe sleep problem. I've just bought 2 boxes of Konjac noodles, 50 days worth in sheer desperation to get the weight off. The noodles r very expensive but I want to see just how bad my problem is. If I don't loose weight on them, I give up. The noodles r virtually calorie free, 20 calories per pack, 0 sugar, 0 carb, 0 fat, basically they r fibre and water. I'm going to eat them and take EmergenC vitamin & mineral supplement, fingers crossed it works (I'm not going to hold me breath though lol)

Hope you reach a good decision with your meds, defo worth mulling it over bcoz I found the weight gain caused me more joint pain 😢

alexander120 profile image
alexander120 in reply to Claire133

Yes I too have looked at weight gain and amitryptline it's not good. My GP says I need to loose weight, it's all gone on my tummy it always looks bloated. I do need to do something. They do help me sleep at night, or at least I thought they did until I bought a Fitbit watch. I bought it to try and help me get motivated as it counts steps. Didn't realise it also tracks how you sleep, I thought I was sleeping ok but I only average 3 hours solid sleep per night. I think I will start slowly coming off them, don't think gabapebtin is any better for weight gain. Really sick and tired of it all!

Claire133 profile image
Claire133 in reply to alexander120

Me too, all round tummy, I've got a bigger tummy than my sister and she's having a baby in November, its really horrible, I look like a different person from a few years ago, I wish I could go back in time.

That's interesting you hit that watch otherwise you'd never of know you weren't getting proper sleep. We only go into a deep sleep after the first 3 hours so if you were being deprived, you're mood, weight and cognitive thinking can all be affected!

Good luck with getting off the Amitriptyline, hope it goes well x

alexander120 profile image
alexander120 in reply to Claire133

And good luck

With the diet x

buddymac48 profile image
buddymac48 in reply to Claire133

hi I also am on Amitriptyline, joint pain has on real affect put like yourself take them to help me sleep, advised to lose weight iam being very careful what I eat put cant lose any weight. I also use Konjac and coconut milk, do you mind me asking what dosage you are on mine is 25mg .buddymac

Claire133 profile image
Claire133 in reply to buddymac48

Hiya, yes I'm on 50mgs per night. I was on 10 but it did nothing, then up to 25, then up to 50 which is now perfect for sleep n helps IBS too.

Oh the Konjac noodle is fab. I got a box from Holland & Barrett buy one get one half price which was a bonus.

Does the Amitriptyline help with pain for you, because it doesn't help my joint pain at all?

Claire ☺

buddymac48 profile image
buddymac48 in reply to Claire133

I also have, Holland &Barrett slim rice also from theKonjec plant ,i also use Lecithin Granules and Whey Protein powder in a smoothie at lunchtime helps to keep me full.

Amitriptyline also doesn't seem to help my joint pain lots of pain at the moment in my legs at times takes my breath away. Also started on 10mg now 25mg sleeping better but by no means perfect.buddymac

Claire133 profile image
Claire133 in reply to buddymac48

Lecithin & whey protein is a great idea, ill have a go of that and see what happens.

Oh I sympathise with the leg pain, that's what's really traumatizing me at the moment, it starting in the feet and ankles but now its spread up the legs and especially backs of thighs.

Maybe worth a try to have a glass of slim line tonic water every evening as the quinnine seems to help with muscle pain & cramps ☺

buddymac48 profile image
buddymac48 in reply to Claire133

Thanks I like tonic water will give it a try .

rosewine profile image
rosewine

I have been on Pregablin (lyrica) for 6 years now together with two other pain killers and it has been a virtual life saver. I had 24/7 burning, shooting pains around my back and rib area and was at my wits end. Unfortunately I can't take a high dose I want to drive as it does leave me very fuzzy after a certain dose so if I have to increase it means a stay at home day but that is the trade off. I did try reducing but the zaps came back.

I never liked sugary things before but I started go have an urge to eat chocolate that I have never been keen on. My weight is the same as before but I have to eat very healthily in order to maintain it which can be difficult if you suffer with IBS like I do.

I did try coming off it but the pain returned. I believe you should be taken off it gradually if you did decide to stop. I think the decision is "how much pain are you in " if it is really bad it is certainly worth a try.

Good luck what ever you decide.x

Claire133 profile image
Claire133 in reply to rosewine

Hi there, thanks for you're reply.

It sounds like its working well for you. Maybe if I decide to take it. I have to get the balance right I need to drive; I'm single mum with 3 boys and 1 is autistic son I have loads of appointments. I'm in severe pain and can hardly walk now so I've got to do something pretty pronto as I'm going down hill fast.

Thanks again for your help x

Shelby77 profile image
Shelby77

I have been on lyrica for the past 2 years. and probably the rest of my life.

I dont mind the medication, it works, and helps... the only problems ive had is water retention. my fingers swell big time.. well not anymore but they use too in the begining, but it that happens, i wouldnt take as many at one time. that helped.. and weight gain.. i put on 80 lbs.. it makes you crave food like your pregnant .. be very careful of that.. you wont be able to eat alot of junk food.. But not everyone has gained weight..

I tried comong off once.. without tappering off, and every nerve in my body were over active.. sweating palms, cold sweats, your skin feels weird. like if anything rubs on your skin.. i went a week. and i couldn't handle it no more, and went back on.. gotta tapper off, or the withdrawls will kick your ass..

again it's a good medication for what it's suppose to do.. but sometimes i wish i never started..phyzer is a giant company.. they probably do that on purpose, to keep people buying it. as its alot of money... BUT there is a cheaper brand now.. thats the one i get

Yea I'm taking Lycra Iv found it ok , it's a brain drug makes you feel a bit drowsy I'm on150 mg twice day Iv found it very helpful

TheAuthor profile image
TheAuthor

I am taking this medication but i have not noticed either good effects or side effects so far and I have been taking this for about 6 months. I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

in reply to TheAuthor

I Find it works for me Ken Thank you god bless.

Pat9 profile image
Pat9

I have a love hate relationship with it.. my doctor said the slight weight gain had to be balanced with the pain I get so it is put on weight and not have pain or not put on weight and be in agony .. :( I am on 125 a day and have decided to go with that as I could not cope with the nerve pain and the burning.. good luck with this xx

in reply to Pat9

That's the trouble with lycra You put on weight You have to go on a protein diet to counter act the dam pills x

Claire133 profile image
Claire133 in reply to

Thank you for the reply, that's a good idea with the protein diet, ill have to get a good food plan I think, before I start taking this Lyrica x

Blakie23 profile image
Blakie23

Hello.I started taking pregabelin at the beginning of the year and gained loads of weight and I didn't know it was because of taking them.I had worse sleep taking them so my doctor has put me back on gabapentin. Sleeping abit better and pain seems better.try them.I am on 1800mg a dayday 2x 300mg 3xdaily but was on 2400mg before.now I know why I have put in so much weight.I am also on morphine 12hour slow release 80mg daily but sometimes have to take more.also 8xparacetamol daily,mirtazipine 45mg daily at night and IBS medication.hope this helps.x

Claire133 profile image
Claire133 in reply to Blakie23

That does help, thank you Blakie x

Blakie23 profile image
Blakie23 in reply to Claire133

That's OK Claire133

Mscmsc profile image
Mscmsc

i've been on lyrica for 7 years now, for 5 years at a dose of 75mg twice daily, had no side affects at all, but as my pain increased, my pain specialist decided rather than increasing any of me other pain meds ( which were on a take as needed basis), that it would be best to increase the lyrica to 100mg, then 150mg, till after 3 months to 200mg twice daily, after a month at this dose my pain levels had not decreased at all. but about an hour befor my dose was due i started to get uncontrollable shaking and a craving feeling for my meds. it was the worst feeling of panic possible, especially if i was out and had no access to them, my pain specialists answer was take more and increased dose to 200mg 3 times daily, within the month my body was then craving my dose befor it was due again, and still my pain levels were the same.

My GP decided it best to reduce the doses down , by 25mg per dose, till my body accepted that level and to work from there, the withdrawal symtons are something i wouldn't wish on my worst enemy, uncontrollable shaking,sweats,goosebumps inability to sleep or eat. it has been like a living nightmare, 2 years on i am still trying to get off it, i'm now down to 275mg in the course of the day , and can't get below this level !!!!!!!!!!

my advice is yes to some degree this drug does help, but please take the lowest dose that works for you, i wish i had stayed at the 75mg doses, because since going above that there has been no additional benefit to my condition at all , and the panic anxiety i feel when my dose is near due isn't something anyone should have to live with.

I wish the best for you and hope you can learn my experience and not have to experience that side of this drug.

Claire133 profile image
Claire133 in reply to Mscmsc

Hi M, thanks for sharing your experience with me. I'm so sorry to hear the suffering you've gone through and I hope you manage to eventually ween off the drug.

It certainly sounds like going over 75mg upset the the balance and had pretty horrendous drug symptoms.

I was looking to find out whether, what is read on American sites was true. I'm in England but when I first went researching to find people blogging, I ended up on a different website so thought I'd compare with us here.

I certainly have to think a lot about getting the balance right for decreasing pain but not giving myself anymore problems.

Very grateful for your info and I wish you lots of best wishes, Claire x

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