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Fibromyalgia

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Comments

  • Registered Users Posts: 3 Fbro


    Hi, I have suffered with Fibro for three years now and I'm currently on 600mg of Neurontin. But they are losing their effect and I have gained a considerable amount of weight with them which in turn is causing a lot more health problems for me.

    I've an appointment with my doctor next week to start weaning myself off them and I'm looking for alternative medicines. I have read that Topamax is good for Fibro and migraines which I suffer terrible from also. Does anyone take Topamax? Have you found any bad side effects? And do you gain huge amounts of weight on it? Any help would be appreciated. Thanks.


  • Registered Users, Registered Users 2 Posts: 1,937 ✭✭✭Tropheus


    Fbro wrote: »
    Hi, I have suffered with Fibro for three years now and I'm currently on 600mg of Neurontin. But they are losing their effect and I have gained a considerable amount of weight with them which in turn is causing a lot more health problems for me.

    I've an appointment with my doctor next week to start weaning myself off them and I'm looking for alternative medicines. I have read that Topamax is good for Fibro and migraines which I suffer terrible from also. Does anyone take Topamax? Have you found any bad side effects? And do you gain huge amounts of weight on it? Any help would be appreciated. Thanks.

    Can't comment on Topamax, but was on Lyrica which is the newer version of Neurontin. I have yet to meet anyone who hasn't gained weight on either. Your doctor may suggest you switch to Lyrica, but I would avoid it as you will have the same problems you're having on Neurontin.


  • Registered Users Posts: 3 Fbro


    Tropheus wrote: »
    Can't comment on Topamax, but was on Lyrica which is the newer version of Neurontin. I have yet to meet anyone who hasn't gained weight on either. Your doctor may suggest you switch to Lyrica, but I would avoid it as you will have the same problems you're having on Neurontin.



    Thanks Tropheus. Yes I've read that alright. Hopefully I will find something that suits. :(


  • Closed Accounts Posts: 7 DigitalGhost


    Fbro wrote: »
    Thanks Tropheus. Yes I've read that alright. Hopefully I will find something that suits. :(

    Did you try the Topamax? How have you got on with it? I was prescribed it recently, but after reading the side effects (i.e. 1 in 20 people have seizures, etc.) So, of course, I completely freaked myself out and I haven't taken them yet. I'm seeing a Rheumatologist next week to get a definitive re: whether I'm dealing with Fibro or ME, so I was going to hold off and ask her opinion before starting on them. But after another sleepless night with pain, I'm wondering if I should just bite the bullet!


  • Registered Users Posts: 86 ✭✭roxana


    I got Amitriptyline today, does anyone knows if this one can help? Doc gave it to me instead of seroquel.
    If you could tell me how much bio visits costs I will be grateful, thanks :)


  • Registered Users, Registered Users 2 Posts: 32,634 ✭✭✭✭Graces7


    Yes her thyroid function has been checked, its ok.
    Currently neurotin is not helping, dose gradually being increased.
    Surmontil is supposed to help her want to exercise, but its too painful. She is going to try pilates/yoga if we can get an appropriate class.
    We would love to go for a family meal but the noise of cutlery, crockery, coffee machines, people talking etc gives her a severe headache as does bright light.
    2 weeks ago during a warm spell I got her to sit outside in garden to have lunch, 10 mins in brightness led to 3 hrs lying down in dark room.
    Friends visiting helps to keep her spirits up but it does set her back.

    My heart goes out to her and you. While exercise is too hard, she needs to keep her body systems mobile and functional else she will add to the symptoms. I learned that the hard way believe me. At my worst I made myself get up every two hours and walk around. Where I lived then that meant bathroom, kitchen check the hens for eggs and that everyone was where they should be.. It was enough to keep lung function and BP healthy. Now I walk around the outside of the house here three times every once in a while. The dog thinks I am crazy! I would think a class would be too taxing. But let her keep mobile and yes it will take will power but that is good too...Agree re meals out and visits. Do friends understand her needs for dim lights etc? I live a very secluded life but enjoy the outings I can do. Still wary of meds and still relying on Tylex as the Raynauds is utterly painful at night.


  • Registered Users, Registered Users 2 Posts: 32,634 ✭✭✭✭Graces7


    Did you try the Topamax? How have you got on with it? I was prescribed it recently, but after reading the side effects (i.e. 1 in 20 people have seizures, etc.) So, of course, I completely freaked myself out and I haven't taken them yet. I'm seeing a Rheumatologist next week to get a definitive re: whether I'm dealing with Fibro or ME, so I was going to hold off and ask her opinion before starting on them. But after another sleepless night with pain, I'm wondering if I should just bite the bullet!

    Have you tried simple painkillers? I use Tylex; know the side effects and at my age not worried re addiction and they sort the night pain for me.


  • Registered Users, Registered Users 2 Posts: 32,634 ✭✭✭✭Graces7


    I keep forgetting this. There is one book that helped me and many. By Dr Anne McIntyre who lived with M.E for years herself<Oh jut read that in fact she has rha! Even a dr got it wrong See this page http://www.meactionuk.org.uk/macintyre.html


  • Registered Users, Registered Users 2 Posts: 5,615 ✭✭✭caviardreams


    Hi guys

    Has anyone tried Lidocaine patches for pain? I can't get used to them at all and find them very uncomfortable and get a numb feeling round the area at times. Have only been using them for a day or two so far so maybe I will get used to it hopefully, but any tips would be great!


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  • Registered Users Posts: 394 ✭✭livemusic4life


    Yes I believe amitriptyline was being offered. What is a safe/low dose, any side effects? will it be a long term thing, remember my daughter is only 14

    *modsnip*. That stuff gives you terrible brain fog and brain fog is bad enough with fibro. I take 10mg every night. It helps with neuropathy, sleep, and disrupts the pain signals. She is very young for fibro. But i would be pushing for a rheumatology appointment before i put her on anything like that. I know how the cycle of meds go and her brain and body are still developing. I'd be nervous until i knew it was safe for her age.


  • Registered Users, Registered Users 2 Posts: 12,921 ✭✭✭✭hdowney


    I'm on amitryptaline to help me sleep. It doesn't do a darn thing!


  • Registered Users Posts: 394 ✭✭livemusic4life


    hdowney wrote: »
    I'm on amitryptaline to help me sleep. It doesn't do a darn thing!

    It doesn't work for everyone, just like most meds. It's a game of trying to find the right combination


  • Registered Users Posts: 2,126 ✭✭✭misstearheus


    Has anyone gone to a Physio for Fibro? I know some Physios do a lot of work for the Lymphatic System so I'm quietly hoping that this would assist towards being some help for Fibro too. Don't have money to waste so no funds available here for crappy service or crappy Physios! Anyone go to a Physio in Galway with Fibro and how did you get on?! Please pm me! :)

    It might be different for others, but the way I'm affected personally myself is that the affected areas feel like bruising, and so they have to be pushed in hard to produce the soreness! All-over pain is ever-present too, but byandlarge, the areas have to be pushed in / pressed-on. So, I'm wondering would I be making an error in going to a Physio with this?!? A Physio rubs over the outer layer of skin..... I don't know would they go deep enough in to bring me pain-relief for the way my Fibro is occurring.... :/ Hhmmmm.....


  • Registered Users Posts: 394 ✭✭livemusic4life


    Has anyone gone to a Physio for Fibro? I know some Physios do a lot of work for the Lymphatic System so I'm quietly hoping that this would assist towards being some help for Fibro too. Don't have money to waste so no funds available here for crappy service or crappy Physios! Anyone go to a Physio in Galway with Fibro and how did you get on?! Please pm me! :)

    It might be different for others, but the way I'm affected personally myself is that the affected areas feel like bruising, and so they have to be pushed in hard to produce the soreness! All-over pain is ever-present too, but byandlarge, the areas have to be pushed in / pressed-on. So, I'm wondering would I be making an error in going to a Physio with this?!? A Physio rubs over the outer layer of skin..... I don't know would they go deep enough in to bring me pain-relief for the way my Fibro is occurring.... :/ Hhmmmm.....

    In my experience, physios don't do alot for fibre. I have severe problems with the SI joints at the back of my hips and my physio had me rotate my leg out for half an hour, despite me telling her that outward rotation really aggravated my symptoms. I ended up in so much pain that I screamed the whole physio place down and couldn't walk at all.. *modsnip*


  • Registered Users Posts: 2,126 ✭✭✭misstearheus


    Yeah that's what I want to hear, about people's experiences of it with a Session. They are expensive like, and I don't have money to waste. Yeah that's kind-of along the lines of what I'm thinking myself, by default before I go anyplace at all! Like I can't help thinking, if working with someone with Fibro, that they would un-naturally be working the opposite way to what they're used to!! And that could be a hindrance more than a help! Like my general pain is ever-present all over me. And is always sore when pressed in real hard at all the points and sources that induces the pain. Soooo, rather than a quick rub gleaning over my skin, every part of me would need to be pressed in really really REALLY hard I reckon, if there was any chance of bringing about some sort of relief. Soooo I dunno about Physio-therapy being beneficial..... But there's a multitude of other things, needling, cupping..... Loads of thing that might help some way... I just don't have the funds to try them all out! :/


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  • Registered Users, Registered Users 2 Posts: 103 ✭✭fighterman


    Have all of you people experimented with a wheat free diet? Fibromyalgia is an autoimmune disease and the source of inflammation is often gluten/wheat . Many, many stories of resolution from fibromyalgia by going wheat free. What's to lose by trying?

    http://www.wheatbellyblog.com/2015/08/barbaras-wheat-belly-makeover/


  • Registered Users, Registered Users 2 Posts: 103 ✭✭fighterman




  • Registered Users, Registered Users 2 Posts: 1,937 ✭✭✭Tropheus


    fighterman wrote: »
    Have all of you people experimented with a wheat free diet? Fibromyalgia is an autoimmune disease and the source of inflammation is often gluten/wheat . Many, many stories of resolution from fibromyalgia by going wheat free. What's to lose by trying?

    http://www.wheatbellyblog.com/2015/08/barbaras-wheat-belly-makeover/

    I've been gluten free for the past 12 years and definitely find it helps my symptoms. It certainly hasn't cured me.


  • Registered Users Posts: 2 NBates


    I live in Cork and diagnosed over a year ago. I too saw various specialists and went on Meds initially. They come with terrible side effects ( depression&anxiety being my worst) The dangers of these drugs longterm really scared the crapout out of me too..... more than the Fibro itself! So I wouldnt recommend meds on any child! Please read read read so you know yourself! I have been seeing a Therapist recently who specializes in Trauma. I realize i need to commit to something regular that will help me through this. She gave me details of a lady by the name of Ray ( She used to have Fibro herself) who offers a Fibromyalgia wellness plan in the city. Met her briefly....about 20mins to get an idea of the work etc ( free of charge) I was BALLING 5mins in. I suppose tears are healing. I left feeling hopeful. Ill def post an update.


  • Registered Users Posts: 124 ✭✭cannex


    NBates wrote: »
    I live in Cork and diagnosed over a year ago. I too saw various specialists and went on Meds initially. They come with terrible side effects ( depression&anxiety being my worst) The dangers of these drugs longterm really scared the crapout out of me too..... more than the Fibro itself! So I wouldnt recommend meds on any child! Please read read read so you know yourself! I have been seeing a Therapist recently who specializes in Trauma. I realize i need to commit to something regular that will help me through this. She gave me details of a lady by the name of Ray ( She used to have Fibro herself) who offers a Fibromyalgia wellness plan in the city. Met her briefly....about 20mins to get an idea of the work etc ( free of charge) I was BALLING 5mins in. I suppose tears are healing. I left feeling hopeful. Ill def post an update.

    Think I have fibro - constant pain since I was a child....migraines, sprained wrists, cricks in my neck etc.
    Biggest issues are with excrutiating pain in my neck, shoulder blades, tension headaches, restless legs, random shooting pains all over my body.
    Kept looking for a reason like nerve damage.
    Seized up in pain since I woke up yesterday. Been through an MRI which found very minor issues, physiotherapist told me I had central sensitization and sent e on my way, on solpadol and valium to relax my muscles when pain gets really bad. Ran out of valium so I'm still awake at 4.15am. I refuse to take any anti-depressants, I refuse to take lyrica etc. In actual fact I do not want to be relying on a cocktail of tablets for the rest of my life.
    I would much prefer to take above meds as and when nescessary and think why replace pain with other horrible side effects - nope!

    I live in Cork too so I'm very curious how you got on with Ray. Starting to feel like I'm going down the alternative route but I dont have the money for it. The HSE is a joke.
    I was on a waiting list to see the pain clinic in the mercy, I was told by the secretary to forget about getting an appointment as I could easily be waiting 2 years and told me to go private.
    I went to my gp and told her....went there again with awful stiffness and pain in my arms and hands. She mentioned more blood tests and a possible referral to rheumatology.

    I guess lots of people feel like a hypochondriac who bothers the dr?
    Thats how I feel, not to mention feeling like I'm drug seeking, especially since I refuse to take any of those head messing meds.

    sorry long post, just so sick of being in pain and realising there may be no option except painkillers.
    Hate asking for my prescription of paractamol/codeine and valium to be refilled, but it works for me!


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  • Registered Users, Registered Users 2 Posts: 32,634 ✭✭✭✭Graces7


    WOndering if anyone has heard of the latest symptoms i have fallen prey to with the M.E. Serious narrowing of the oesophagus so that swallowing solid food is hazardous? I was shocked to be told that this too,along with the daily headaches and acid are auto-immune problems as I had never heard that and assumed it was old age ... Worrying. I checked the long list some kind person has posted on line and sure enough there it is.

    Fluffy Unicorn; how is your daughter now ? Hoping you have better news?


  • Registered Users Posts: 4 Tania Stewart


    Hello there - I'm new on the forum. I'm not really sure how to even use the site, I just saw this old thread.

    I'm wondering - is there anyone who would know of a good, thorough, empathetic and open-minded rheumatologist and/or " " gastroenterologist (or overall magic doctor :)!!)who could possibly help me with my 12 year old child? For the last few years - he's had practically constant physical wellness problems, to varying degrees - nausea, aches and pains, severe headache, tiredness. I'm stating the things in order of how problematic they are. He feels unwell a LOT and goes through phases of missing a lot of school. He has friends, likes sports, and WANTS to be feel up to going to school everyday. I'm only saying this because it's been suggested or sometimes assumed, sooo many times, by friends, family, the school, AND medical professionals, even some alternative types of treatment specialists - that he's either anxious and that also manifests itself physically, that he's imagining it somehow, or that he's exaggerating or even making it up either to get attention or to stay home from school, or because he's covering up some serious thing that is bothering him that he's too scared to tell me. Nobody ever gives much reason for thinking these things. Suggesting and reminding one of the psychological possibilities is actually a good thing, I know, but even when I explain how close my son and I are (it's just the two of us in our immediate family/household) and much we talk about everything, and how well I know him - a lot of times people STILL choose to dismiss that, as if they would of course know better than me!!! So far - I've at least come to the conclusion that he has hyper-sensitivity - he has an ADHD diagnosis, and it can co-incide with that, but whatever it does or doesn't have to do with - from everything I've read and heard, and experience with him everyday - most, if not all, of the signs seem to be there, signs of hypersensitivity. And I THINK that with a hypersensitive "base" if you will, a person is more prone to "unwellness" in every sense of the word. Also - I have an aunt with very bad fibromyalgia and a number of comorbid illnesses. Anyway - if anyone thinks they might be able to point me in the right direction, then please try :). Thanks in advance, I guess!


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