Advertisement
If you have a new account but are having problems posting or verifying your account, please email us on hello@boards.ie for help. Thanks :)
Hello all! Please ensure that you are posting a new thread or question in the appropriate forum. The Feedback forum is overwhelmed with questions that are having to be moved elsewhere. If you need help to verify your account contact hello@boards.ie

Fibromyalgia - Does Lyrica really work

Options
  • 03-11-2008 4:51pm
    #1
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭


    Hi All, was diagnoised with Fibromyalgia some months ago after months and month of constant aches and pains. I am currently on Amptriptline together with difene daily to try eliviate the pain but find that it is not helping much and I am currently out of sick leave from my job as I cannot work through the pain.

    I have had an horiffic week where I feel like one big bruise (mainly effecting from my waist up, specifically my hands and arms/ shoulder region), everywhere is sore to touch. This has been ongoing for over a year now and in that time i have maybe got 2 one week periods where i have had some relief, however this is my second flare up in the last 3 weeks.

    My doctor has suggested Lyrica, the reviews on the net seem to be fairly negative and I am worried about the side effects mentioned. Just wondering if anyone has used Lyrica and if they found it of any use. I would welcome any replies or alternative any other diet, exercise changes etc. that you have found benefited you and your fibromyalgia symptoms, thank you in advance.


Comments

  • Options
    #2
    star-pants
    Closed Accounts Posts: 13,429 ✭✭✭✭star-pants


    Hi there,
    I was diagnosed with Fibromyalgia last Christmas after about 13 years of unexplained pains and aches. I was on amytriptaline which I found helped the pain (but not the insomnia or headaches) but I developed a reaction so I got changed to Prozac, which again helps with the pain.
    Difene destroyed my stomach about 2 years ago so I won't touch it. My stomach is now very tender and sensitive due to that and other things.

    My mother has rheumatoid arthritis for the past 25+ years, and she has some fibromyalgia also. She was put on lyrica less than a year ago and she finds it has helped, at first it did make her feel a bit dizzy/stupid but the benefits outweighed it once her system got used to it. There are side effects to a lot of things, and it's usually trial and error with the likes of arthritis and fibro.

    I found glucosamine/chondroitin suppliments help sometimes - as would codliver oil.
    Exercises I can't do much of because it hurts, but gentle stretches and swimming are meant to be very good. Getting a good nights sleep is one of the main ones, don't have caffine before bed (if it affects you), make sure you're relaxed and comfortable. A bad nights sleep can make the next day worse.


  • Options
    #3
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    amiotriptyline makes me v sleepy, I was on Lyrica but had to come off it (liver problems) but it should be ok without being combined with interferon as I had


  • Options
    #4
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi All, thank you for your replies. Things have not improved much this week so I might give the Lyrica a go. This is the first time I've experienced the facial pain that comes with Fibromyalgia and it was very frightening. I hope I can stick out the Lyrica with the hope it will help, this has come on so fast and I have not had any let up on it so I am looking for a miracle at this stage, thanks again.


  • Options
    #5
    Sikamick
    Registered Users Posts: 804 ✭✭✭Sikamick


    I have it for thirteen years and it just getting worse. I have seen all the specialist and I am still attending about four of them.

    I tried all the medicines, alternative medicines and have never got any long term relief with any of them.

    I have been told there is a training Hospital in London that is doing research, has anyone heard about this.

    Any help would be gratefully received.

    Sikamick


  • Options
    #6
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi Op

    I just read your post and I just wanted to drop you a very short note about my experience with Lyrica.

    A couple of years ago, I started having some unexplained fits and a doctor prescriped me with Lyrica for epilepsy. My family doctor later said this was absolutely obsurd as the doctor in question didnt do any proper tests (it was a doctor on duty).

    Anyway, it was a few months before I had got in contact with my family GP and I was on the lyrica for a couple of months. During this time I had the most nightmare side effects ever imaginable and I would strongly advise you to chat seriously with your doctor before you start taking them.

    My side effects included feeling extremely depressed, dizzy, anxious and then I found them very hard to come off.

    Anyway, all medications are different and it may be good for you and I wish you all the best with it but I wouldnt like to have you start without being aware of other ppls experiences. Good luck x


  • Advertisement
  • Options
    #7
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    I have had fibromyalgia for years and have had some relief with Effexor, wellbutrin and trazodone. Just recently a neurologist suggested that I try Lyrica. Wow! I am feeling so much better. I used to always have head or facial pain everyday but now I have none. My energy level has gone way up and i can do ever so much more than before. Some days I feel like a normal person. I also felt very jittery and like my nervous system was working in high gear and that is also gone. I think this drug is definitely worth a try.


  • Options
    #8
    P.A.C
    Registered Users Posts: 81 ✭✭P.A.C


    Hi, iv been on a mix of lyrica, zydol and arcoxia. I only take them at night becuse they make me so drousy. In wrecked as it is without the meds. Iv been on these for about 6 years. I didnt think at first that they made a difference but if i missed a dose id be in bits. I saw someone mentioned bout liver. How would i know if these were afecting my liver. I suffer realy bad with my stomach. Iv done a pain managment course, didnt realy help. Pain just seems never ending. And i have all the other related illnesses that go with this.


  • Options
    #9
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi All, sorry I've just checked back in on my original post, thanks for alll the advice etc.

    Went on the Lyrica and has the most dreadful side effects, started with the most horiffic and vivid nightmares and eventually made me so sick that I couldn't move from the bed, the pain went 100 fold. The doctors reckoned I was just unlucky and that I had suffered from a bad reaction from them so I am off them for good. Still waiting on my pain management appointment so sorry to see that P.A.C. hasn't found it of any use as it is my lasting hope.

    P.A.C. if you are worried about your liver then you GP can do fairly straight forward blood tests to check it for you, I do know alot of the fibromyalgia medication has some fairly bad side effects if taken for a prolonged period of time.

    Here's to a Happy New and Pain Free Year !!!


  • Options
    #10
    Splendour
    Registered Users Posts: 1,580 ✭✭✭Splendour


    Hi guys,

    sorry to butt in here but am curious. Between you all has any Doc ever suggested you have your cortisol levels checked?


  • Options
    #11
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Splendour wrote: »
    Hi guys,

    sorry to butt in here but am curious. Between you all has any Doc ever suggested you have your cortisol levels checked?

    Hi Splendour, didn't remember it specifically but have checked the copy of my blood results and they came back as normal. Makes for interesting reading though now that i've googled it.


  • Advertisement
  • Options
    #12
    imokyrok
    Registered Users Posts: 521 ✭✭✭imokyrok


    I was checking out the fibromyalgia posts and saw you mention you were waiting for the pain managment course. I did the one in the Mater (10 weekly sessions) a couple of years ago and it was a turning point for me. I'm still not able to work but at that time I had deteriorated to a really bad state - walking frame, severe pain, multiple medications and thanks to that course I very gradually developed better coping strategies. Now my mobility is normal, I take half an hour walk each day, I've been able to cut out some of the worst medications and have improved my quality of life considerably. I still fear that the improvement won't last but I'm keeping my fingers crossed.

    However like everyone with FMS I continue to search for the Holy Grail of treatments as I do long for a normal painfree life not to mention employability! I've been trying Lrica for the last five months. I tried it years ago and found it of no benefit and it gave me nightmares but decided to give it another go. I'm not finding it an easy medication to get used to. I had read it was sedating but it's had the opposite effect on me and makes me jittery even on a low dose. However it does seem to have decreased the pain I wake up with in the morning (always the worst time for me) so I'm trying to persevere.

    At this time of year my thoughts always turn to trying new treatments/ approachs and this year I'm giving consideration to having my almagam fillings removed. It's been on my mind to try for some years but it will be expensive and I'll probably have to travel North to find a dentist who can remove them safely. Then detoxing may be difficult as I haven't come accross anyone in Ireland so far who knows about that. Has anyone else had this done and if so have they noticed any improvement at all in symptoms?


  • Options
    #13
    Fizzle087
    Closed Accounts Posts: 1 ✭Fizzle087


    Oh you poor things, theres nothing worse than flare ups! get the hot water bottles out ! I'm nearly 15years with fibro and nobody understands even after explaining all the whole thing, plenty of tears believe me - so I dont tell anyone anymore.

    Did all the hospitals/tests/pills/treatments, then all the alternative ones and I found the only thing that works is avoid any processed food and stress like the plague! - I cook all my own food from scratch and think after about a year of this I've cleared all the toxins including all the dreaded medicines they feel the need to pump us with. Going part-time reduced the stress, but if my face starts feeling numb or any tingling in the elbows thats it I have to sneek off for a bit of quite time, usually a nap with the electric blanket. It works!
    It's pretty under control, had burgerking then popcorn and coke at cinema on Saturday! nasty flare up and still sore it's now wednesday but I dont do it often and I'll be grand next week........
    This might work for you guys, it's not a quick fix and I know it's frustrating xxx

    Did think of removing my fillings might get rid of a few more toxins, let me know how you get on.


  • Options
    #14
    Splendour
    Registered Users Posts: 1,580 ✭✭✭Splendour


    NeedaLife wrote: »
    Hi Splendour, didn't remember it specifically but have checked the copy of my blood results and they came back as normal. Makes for interesting reading though now that i've googled it.

    Forget blood results-cortisol is best checked by saliva testing. Unorthodox in most Doc's eyes, but it absolutely helped me on my path to recovery...


  • Options
    #15
    imokyrok
    Registered Users Posts: 521 ✭✭✭imokyrok


    Splendour wrote: »
    Forget blood results-cortisol is best checked by saliva testing. Unorthodox in most Doc's eyes, but it absolutely helped me on my path to recovery...

    Can you say a bit more about this? maybe link to some information or something?


  • Options
    #16
    Splendour
    Registered Users Posts: 1,580 ✭✭✭Splendour


    imokyrok wrote: »
    Can you say a bit more about this? maybe link to some information or something?

    Quick link-will follow up...

    www.hormonesalivatest.org/adrenals.html


  • Options
    #17
    kangaroo
    Registered Users Posts: 651 ✭✭✭kangaroo


    Sikamick wrote: »
    Chronic Fatigue Syndrome/ME/Fibromyalgia: I have it for thirteen years and it just getting worse. I have seen all the specialist and I am still attending about four of them.

    I tried all the medicines, alternative medicines and have never got any long term relief with any of them.

    I have been told there is a training Hospital in London that is doing research, has anyone heard about this.

    Any help would be gratefully received.

    Sikamick
    One active researcher in the ME/CFS field is Dr Jonathan Kerr and given there are not that many researchers in the ME/CFS and Fibromyalgia areas, it could be him.

    He is largely funded by the CFS Research Foundation http://www.cfsrf.com but for a couple of studies is also receiving funding from ME Research UK http://www.meresearch.org.uk and for one study, the Irish ME Trust http://www.imet.ie is supporting him. The Irish ME/CFS Association http://www.irishmecfs.org which I'm involved with (as a volunteer) have donated E70,000 to each of ME Research UK and the CFS Research Foundation. Any of these groups could give you further information about the research and would have info on their website.

    Dr Kerr just won a $1.6m dollar grant with Dr. Mikovits: http://www.prohealth.com/library/showarticle.cfm?libid=14948

    Dr. Mikovits hit the headlines recently with the finding of XMRV at high rates in CFS patients. Dr Kerr is now testing some of his patients.

    I also heard that they have tested 20 people with Fibromyalgia and 12 have come up positive but I am not sure to which XMRV test this was (there are different ones incl. antibody tests) - this latter finding hasn't been published yet - Dr Daniel Peterson presented it at the CFSAC meeting in the US last week. One can watch this video at: http://www.hhs.gov/advcomcfs/index.html
    Day 1.
    Dr Coffin also talks about the excitement in the virus research community about XMRV.


  • Options
    #18
    imokyrok
    Registered Users Posts: 521 ✭✭✭imokyrok


    kangaroo wrote: »
    One active researcher in the ME/CFS field is Dr Jonathan Kerr and given there are not that many researchers in the ME/CFS and Fibromyalgia areas, it could be him.

    He is largely funded by the CFS Research Foundation http://www.cfsrf.com but for a couple of studies is also receiving funding from ME Research UK http://www.meresearch.org.uk and for one study, the Irish ME Trust http://www.imet.ie is supporting him. The Irish ME/CFS Association http://www.irishmecfs.org which I'm involved with (as a volunteer) have donated E70,000 to each of ME Research UK and the CFS Research Foundation. Any of these groups could give you further information about the research and would have info on their website.

    Dr Kerr just won a $1.6m dollar grant with Dr. Mikovits: http://www.prohealth.com/library/showarticle.cfm?libid=14948

    Dr. Mikovits hit the headlines recently with the finding of XMRV at high rates in CFS patients. Dr Kerr is now testing some of his patients.

    I also heard that they have tested 20 people with Fibromyalgia and 12 have come up positive but I am not sure to which XMRV test this was (there are different ones incl. antibody tests) - this latter finding hasn't been published yet - Dr Daniel Peterson presented it at the CFSAC meeting in the US last week. One can watch this video at: http://www.hhs.gov/advcomcfs/index.html
    Day 1.
    Dr Coffin also talks about the excitement in the virus research community about XMRV.

    http://www.dailystrength.org/c/Fibromyalgia/forum/8307232-xmrv-questionair
    http://www.wpinstitute.org/xmrv/index.html

    Does anyone know if any hospital in Ireland has the capability to test for XMRV yet? Since it has been linked to prostate cancer previous to discovering its link to Fibromyalgia and CFS I wondered if oncology departments can test for it. If as it appears the retrovirus is transmitted through fluids my biggest concern is for my 3 children who were breastfed.


  • Options
    #19
    kangaroo
    Registered Users Posts: 651 ✭✭✭kangaroo


    imokyrok wrote: »
    http://www.dailystrength.org/c/Fibromyalgia/forum/8307232-xmrv-questionair
    http://www.wpinstitute.org/xmrv/index.html

    Does anyone know if any hospital in Ireland has the capability to test for XMRV yet? Since it has been linked to prostate cancer previous to discovering its link to Fibromyalgia and CFS I wondered if oncology departments can test for it. If as it appears the retrovirus is transmitted through fluids my biggest concern is for my 3 children who were breastfed.
    There is certainly one hospital that has the capability of doing it for research as there was a study done in Ireland looking at the issue in prostate cancer patients.

    However I don't think it is commercially available yet anywhere in Europe.

    There is talk that Red labs in Belgium may offer the test after a while. The test is now available commercially in the US and Canada but as far as I know they are not taking samples from outside there.


  • Options
    #20
    Bidd
    Registered Users Posts: 45 ✭Bidd


    imokyrok wrote: »
    http://www.dailystrength.org/c/Fibromyalgia/forum/8307232-xmrv-questionair
    http://www.wpinstitute.org/xmrv/index.html

    Does anyone know if any hospital in Ireland has the capability to test for XMRV yet? Since it has been linked to prostate cancer previous to discovering its link to Fibromyalgia and CFS I wondered if oncology departments can test for it. If as it appears the retrovirus is transmitted through fluids my biggest concern is for my 3 children who were breastfed.




    Link to info re Lab that is doing the XMRV test in the US.

    http://www.prohealth.com/library/sho...fm?libid=14999

    I am concerned also as my three children were breastfed.

    B


Advertisement