Long diagnosis of fibromyalgia

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I have just turned 28 and recently been diagnosed with fibromyalgia, it’s quite hard for me to take it in as I have had these symptoms for at least 2 years and have progressively got worse I’m at my worst right now. I have 2 young children and work as a support worker. I’m currently having more bad days than good. My feet feel like I’m walking on a bed of boiling nails, my whole body is shaking, every inch of me is hurting. I’ve been given amitriptyline 50mg , tramadol and advised to take paracetamol too I find it hard to function after taking these especially because it doesn’t help much with the pain. I see my GP again next week just wanted to find out what other people take and if they help

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  • Posted

    I was diagnosed about your age, a tad younger. Its completely rough. I however went from a workhorse to disabled in a months time. No meds have worked for me, some have helped with pain but make me a zombie. Its probably not what you want to hear but I had to go on disability and in the states here it took years to achieve. I wish you the best but you may have to at least look at a change of career sad
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    • Posted

      This is what I’ve been told as now my employer has said I can not do the usual moving and handling that’s needed as I may not be at my peak strength which puts the individual at risk and also myself. So far the medication isn’t helping me and it has been going on for 2 years 
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  • Posted

    Hi Sarah-Jane,

    I'm sorry to her that you are in so much pain and believe me I do understand as a sufferer myself.

    Can I ask who diagnosed you, was it your GP or have you been referred to a Rheumatologist.

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    • Posted

      I got a diagnosis from both GP and Rheumatologist, but now I’ve had the diagnosis it’s kind of like I’m alone given a load of drugs and left to get on with it, my GP tries her best in the limited time of a appointment 
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    • Posted

      Its rough after you get the diagnosis as the drugs either work or they dont. Again Im not sure how it works in the UK(Im guessing you are there with the GP comments, sorry if I am wrong) but here we have pain specialists. That might be a way to go as they can offer a wider array of medicines(at least in the US) to help you. I saw one for a while, tried a bunch more meds including Nabilone(synthetic canibinoid commonly used for anti nausea but also sometimes works for Fibro) and that didnt work either, I do miss the mild high though wink I really hope things go better for you and they figure something out. *hugs*
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    • Posted

      I was hoping you would say your GP and then I was going to say ask for a referral to a Rheumatologist.  Presumably the Rheumy did loads of tests, bloods, scan, x-rays etc to rule out anything sinister before diagnosing the Fibro.  As well as Fibro I do have RA and Osteo arthritis and I've had quite a lot of steroid injections in various points, back, hips, knees, shoulders etc.  They helped a bit, but don't last very long.  I've tried all kinds of meds, unfortunately I seem to be allergic to most of them and tramadol caused me to see huge spiders and things crawling up the walls   eek   I do however have open access to phone the Rheumatology team, when things are really bad.  

      There are a lot of people on here who suffer with this terrible illness so hopefully you will hear from some of them with more helpful advice.  Hang on in there x

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    • Posted

      Yes here in the uk we also have pain specialists but the waiting list is 6 months so it will be a while until I see one now, yes I’m quite high off all the drugs which isn’t any good for me not only does it not take the pain away, I have 2 children one aged 2 and one 8 so I need to be able to function to a certain degree and there’s no way I can take them at work as I need to be on top form especially when administering medication myself, but I think because I’m not consistent with my painkillers that might be why I have so much pain as there’s no storage already in my body. So now I’m at my worst it’s taking a while for them to work, and I’m due on in work tomorrow until Sunday night what a killer 
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    • Posted

      I’ve been referred to all the right people but long waiting lists to be seen, I’ve had blood tests, X-rays etc that’s why it seems to of took so long to get my diagnosis. I find it hard because in my job I see bad cases of this pass me by, mainly I work with learning disabilities though so not often x
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    • Posted

      You dont have to take pain killers daily for it to work. Thats not good for you and many can cause stomach issues or worse if you do that. When I first got sick I have a 1 and 4 yr old, I was in bed most of the time and could barely walk. Im now 42 and I had another child 4 years ago so I know how rough it is with the kids. 

      I just looked up your meds, Ive never taken tramadol but it doesnt look like a good one at all, Im shocked they have you on 50mg amitriptylin! I find it hard to function after taking more than 10 to sleep well sad and tylenol has never worked for me, ibuprofin works the best but again can cause stomach issues which I had so I had to stop taking as much. None of the meds you are on are for fibro. Have you doctors tried those? They didnt work for me but Ive heard good things about them for others. Im talking Pregabalin (Lyrica), Duloxetine (Cymbalta) or Milnacipran (Savella). 

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  • Posted

    I Sarah hope ur OK it's not nice feeling and can be very hard pain killers won't help as it's not a physical pain like something broken or muscle damage it's actually a nerve pain so if I was u I would stop the pain killers amitriptyline helps with the sleep at nite the thing I found best was gabapentin which helps with nerve pain I have started feeling better with this med rest helps alot but I am a single dad so don't get much lol hope this helps

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    • Posted

      That’s the same for me I don’t get rest , the only time I am away from my kids is when I’m at work which is far from relaxing. I hope my GP gives me different medication and it works because I’m not sure how much longer I can cope with it I struggle to move
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    • Posted

      You need to try and relax when u can knowing what u have will help changing ur process of thought also help being positive has a massive help thinking down and negative effects will only make it worse and trust me I know how hard it is to think positively cause it seems there is no light does your partner help with things
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  • Posted

    I have a parenting page called p.g.f.a parenting group for all its on Facebook there are couple and single parents on there we have meet ups and help each other you and your partner are welcome to join
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