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The UKFibromyalgia Forums • View topic - Lyrica



Lyrica

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

Moderators: perseus, *Lisa*, FluppyPuffy

Lyrica

Postby rach34 » Tue Sep 11, 2012 7:29 pm

Hello this is my first post. I have been having probelms for quite a while and have just been diagnosed with fibromyalgia by my Rheumalogist. I am still having a bit of trouble accepting the diagnosis, as he was very blunt and told me that I was not going to get any better and my old life was over. I have two small children and hearing this was hard. He has started me on Lyrica and Amitptylline but having read the possible side effects if Lyrica I am not sure I want to take this long term. Do others on here take it without any problems. My main problems are pain and exhaustion. I did some house work on Friday an the next day I was in so much pain I was nearly crying, and even now, 4 days later I am so tired, even hanging my washing out leaves me exhausted and my arms aching like I have the flu. Is this what I can expect from now on. I am sorry if I seem low but Im afraid and really could do with talking to some one experiencing the same thing, so I dont feel quite so alone. Thanks. Rachel
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Re: Lyrica

Postby FluppyPuffy » Tue Sep 11, 2012 8:22 pm

:wave: :wave: and :welcome: to the forum Rachel.

I've moved you into this part with you asking about a med, it's a more suitable board and will hopefully mean you get some helpful replies.

Lyrica (also known as Pregabalin) is a med that is used quite regularly in the treatment of FM as it has been found to help reduce the intensity of some symptoms.

Altho a multitude of side effects are listed with meds, it doesn't mean that you will experience them, or if you do, they do tend to be fairly short lived in most cases. In the long term, when considering potential benefits of a med, side effects are taken into consideration, and usually the benefits that could be brought greatly outweigh potential side effects.

As for what you can expect from FM, that's not easy to answer due to the vague and unpredictable nature of FM. Things could stay as they are, they could get worse, or if you're really, really lucky it may go dormant at some point, altho this happening is rather rare unfortunately :( :( Even if things stay the same, or get worse, it is still possible to have a life. It takes a bit of trial and error, but it is possible for you to find the right mix of meds, treatments and ways of doing things and live with FM, incl still doing fun stuffs with your kiddiwinks :bear-dancing: :bear-dancing: :bear-dancing:

There's lots of info across the forum, so having a look round to see what there is might be an idea. As well as things about meds, there are all sorts of suggestions that have a made a difference to people. With you being recently dx'd, there may be questions whizzing around your head, the answers to some you may find on here :clap: :clap: :clap:

Just ask if there's anything else you're wondering about, it doesn't usually take long for someone to :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: along with a reply :wave: :wave: :wave: :wave:


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Re: Lyrica

Postby deanna dimech » Tue Sep 11, 2012 8:24 pm

I'm sorry to hear you are having a hard time getting your head round having fibro,It is hard to get your head around it but in time that will get better,you need to start to slow down and pace your self thats the only way forward with fibro, You may need to change your meds many times befor you find what helps you.but you need to start looking at one thing at a time, then you can start looking ahead again, good luck, and if it helps we are here if you need an understanding ear :roll:
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Re: Lyrica

Postby Niblet » Tue Sep 11, 2012 8:40 pm

Hi Rachel, Sorry to hear about your diagnosis. I was diagnosed about 2 years ago and have tried various medication including duloxetine and amitriptyline neither of which suited me because I couldn't stand the side effects. I have now been on Lyrica for about 6 months - I take 150mg in the am and 300mg at night. This pretty much gets me through the day as long as I don't do too much. I don't suffer any side effects from them either. I tried without it and my pain increased considerably back to how it was before I started them. I then take either co-codamol or tramadol depending on the level of pain. I also take zolpidem if I can't sleep. I manage to work 30 hours a week but it is a struggle sometimes. You just have to take the positives from life and know your limitations and learn to pace yourself and not overdo it. It involves some life changes but you haven't much choice really.
Hope this helps xx
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Re: Lyrica

Postby shikara13 » Tue Sep 11, 2012 9:19 pm

Hiya Rachel, :welcome:

Sad to hear abt your diagnosis but dont despair :-) before i tell you what i went through i will only say that different ppl deal with fibro differently. So try things out until you find the right combination for you.

i pretty much had a similar experience 8yrs ago except i didnt have lyrica. I was given amitripthaline and a number of over pain killers. When i questioned what they were giving and how the side effects of the medication they were giving me other problems as side effects such as being asleep for literally 48 + in one go, stomach aches and aggravated my irritated Bowel syndrome. They finally came clean with me saying that they didnt actually know what would work on me and that so they were trialling different medications on me until they found a suitable one.So they were basically using me as a guinea pig. :yikes: i didnt like that at all .

My main problem like you is exhaustion & deep muscles pains which makes it hard to walk and pretty much everything else. Unfortunately i cant say it will get better. I have heard of ppl who got better. :lol: there are good days and bad days. when i am stressed i find things get a lot worse for me. and from the sounds of it.. finding out you had fibro, stressed you out and has made things worse in the last week. :dunno:

The exhaustion i feel is the most irritable part of fibro ( :pull-hair: i find anyway) bcoz i keep thinking that i havent done anything so y do i feel so dead. Surviving and learning to live again in the last 8yrs has been through learning to accept how i feel, and managing it. I had a wake up call :face-slap: - first i quit almost all the medications with the help of the doctors 6 yrs ago (they were doing more harm than good for me anyway) and then asked the Gp & consultant to give more holistic approaches such as hydrotherapy,acupressure & massage (although these do not heal fibro but at least they dont damage my body further like the meds do). I learnt about herbal medications etc .. i also had to learn pain management etc - pace myself... i had to learn there is no need to rush in life. the calmer i am the easier life is. I had to literally re-learn how to live. And i made my family (including young children) & friends learn it with me so they understand how i feel, and why i cant do what i use to do. :teddy-bear:

So things i cant do for my housework and have not been able to replace with a machine i ask my partner to do - example - being a eco-freak i use to grate,slice & dice my own veg - now wiz fibro i use a food processor, i cudnt hang the washing i got myself a dryer or get my partner to do it etc.. i hope you get my drift.

I have become almost OCD at organisation... you might ask why... simply because it gives me the opportunity to have almost the same quality of life i use to without letting my fibro getting in the way. But to get myself organised has taken 4yrs now and i am still working at it - so dont expect it to happen overnight.i have rubbish memory so i write everything down. :clap:

I use to be an athlete and now i walk with a stick. i had flying career in media but had to change my line of work.But i have been able to keep myself in full time employment but its not always easy. I have spent many a days and nights crying but i still find the best way to deal with fibro is with a smile and my partner & friends. :fingerscrossed:

So best of luck in however you deal with fibro.. just dont give up. if you have a happy and positive mind nothing can defeat you.
:goodluck2:
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Re: Lyrica

Postby rach34 » Tue Sep 11, 2012 9:33 pm

Thankyou all so much for replying and taking the time to help me. Im just in shock at the moment and finding everything difficult. My partner is a farmer who works from dusk till dawn so its hard for me to ask him for any help as it seems ridiculous when he at work all day, and I tell him im too tired to make tea, or Im in too much pain to be able to help him any more. My children are young but I am trying to explain to them that mummy needs a little help, and they help put their own clothes away and help me load dishwasher etc. I guess if people could see my illness they could understand more too, but when you look healthy (if a little zombie like) they think im just being lazy. Moaning over. At least now ive joined this forum I have somewhere to go to when I need to let off steam, or just need someone to talk to. Thanks again for replying. Rachel
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Re: Lyrica

Postby FluppyPuffy » Tue Sep 11, 2012 10:28 pm



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Re: Lyrica

Postby mumstheword1954 » Tue Sep 11, 2012 10:39 pm

HI Rach.

I tried Pregabalin about 6 months ago and it just didn't agree with me at all. It made me feel extremley out of it, I tried all ways to get my body tolerate it but it was no use and my Dr agreed that it wasn't any use to me. On living with FMS, basically you just do your best when you can manage. Take each day as it comes, you may find your okay for an hour or so and go and do too much and you pay for it. I've had FMS since 1997 and still find it difficult to explain to anyone how it effects me as I look "normal" I'm lucky that my kids are grown up, but I do wish I was able to play with my grandchildren like their other Nans do. Just do like youv'e done have a moan on here because this is one of the few places everyone know immeadiately what your on about.

Chris X
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Re: Lyrica

Postby Graciebaby » Wed Sep 12, 2012 2:21 am

Hi,
I was also very reluctant to take Lyrica. I found the main side effects initially were a dry mouth and feeling a bit like I was on a merry go round. This did settle down after a week or two though. I have been taking it for several months now and am fine with it (just a bit heavier weight wise!)
My advice would be to try it, but increase the dose very, very slowly. I'm still only on a low dose compared to many sufferers on here.
I can't say for sure quite how much improvement I've experienced yet, as I started taking it whilst swapping from Citalopram and starting to take Duloxetine, which has certainly helped with my mood.
I've decided to stick with the Lyrica for another few months and see how it goes.

I am quite sensitive to medication so for me to be able to tolerate Lyrica and have side effects which were tolerable, if a little annoying, might be encouraging for you. I realise we are all different and tolerate meds differently, but it's worth giving it a try.

I'm sorry you have been given this diagnosis, it's quite a bit to adjust to at first isn't it. Do you have a good, supportive GP?

Take care.

G. x
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Re: Lyrica

Postby Iceskatemum » Thu Sep 13, 2012 7:56 pm

Hi I was given Lyrica ( aka Pregabalin) a few months ago . Initially I had migraine like headaches, sickness, awful weightgain as it made me feel nibbly coupled with tiredness. After about 10 days of this GP then advised starting again from scratch ane ranking up more slowly . I am still only on 150mg perday which is nothing compared to some on here but I can cope with it and it has relieved most of the awful firelike pain in my arms and legs.

Take care and good luck
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Re: Lyrica

Postby lala1626 » Fri Sep 14, 2012 1:55 pm

Hi, pregabalin didn't agree with at all. At first it made mehave a really drymouth and just feeloutof it most of the time (which I'm not entirely sure was a bad thing, :crazy: :crazy: )
When the spacedoutness wore off I started to put onweight I'm only 4ft11 so I'm teeny so weight for me is difficult, I have a part of myspine which is curved nearthebottom so as my bumgot bigger it put loads of pressureon itwhich added hugely to my pain so swapped to gabapentin and I havnt lost all of the weight but I'm not gaining it either so can't complain at that.......no wait ican and iwill Fibro SUCKS!!!!!!!!!!!
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Re: Lyrica

Postby sweetleaf2 » Fri Sep 14, 2012 2:24 pm

HI, I remember how I felt when I was first diagnosed, first comment was "Ive never heard of it" and the next was, "how do you cure it?" I was mortified when the doc said I had it for life, and I cried on the way home. Then I got on my computer and did some research, found this site, and Ive never looked back. One of the things I found most helpful was the spoon theory, both for explaining to others and for planning my activities
http://www.butyoudontlooksick.com/artic ... on-theory/
Your rheumy was a bit harsh, wasnt he? your old life is not over, its just taken a fork in the road, there will be times when you dont feel so bad, and you could imagine you dont have fibro, but you must learn how many "spoons" you have to "spend!"
If you do too much you know there will be a price to pay, in pain and exhaustion, but some things are worth it, for me the joys of playing with my grandchildren, others have their own pleasures which they find are worth the pain/exhaustion debt we build up for later.
Accept your limitations, (easier said than done, I know), celebrate your acheivements, and dont focus on what you cant do. Thats what Im trying to do, some days its easier than others. The meds are completely patient specific, what works on one wont work for another, work with your doc to find what works for you. I myself am not having too many of the side effects from Lyrica, and have been slowly increasing the dosage, not quite there yet in terms of pain management, but I have had some positive results, in conjunction with Tramadol. I hope you find your perfect combination, and feel better soon.
Gentle Hugs,
Jan
I`m not over the hill I`m still climbing it, thats why I`m so tired all the time
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