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  1. #1
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    Default Fibromyalgia and other chronic illness sufferers

    Hi
    I thought I'd start a support thread for those of us with Fibromyalgia (FM) or other chronic illnesses (CIs)
    It would be nice to have another place to chat or vent about living with FM or other CIs.

    If you don't mind sharing a bit about you, please do so.

    A bit about me.... I was diagnosed in Feb 2012 but I have had symptoms since my teens. I'm now 32yrs old. The last few weeks I've been having really bad symptoms. I thought it was a bad flare up but with how long it's gone one and come on suddenly, I went to my GP on Monday and she got me to get fasting blood test done which I did Tuesday. She was getting everything checked again. The guy took 9 vials!! I hate blood tests but the aches I had that morning totally made it all worst
    So now the wait to see what results are.

  2. #2
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    Hi Purplebutterfly

    I don't have fibromyalgia but I do have Crohn's disease. I put up a couple of posts when I first joined but no-one responded so good to know other people are out there with CI's.

    I was diagnosed in Oct last year but like you, I have had symptoms for most of my life (actually, we now think my first really bad flare was when I was 12 but I have evidence of it occurring earlier than this). It just went undiagnosed for so long, contributing to this was the absence of inflammatory markers in blood tests which I now know occurs in about 10% of patients.

    Finally got a diagnosis and honestly I was quite shocked, I had been told for so long that my symptoms were nothing of concern by dr after dr after dr, to hear the specialist say I had Crohn's really surprised/upset me.

    I seem to be doing ok, but I have had a hard start to my pregnancy and I am concerned about a Crohn's flare due to stress (have had a few mild symptoms) so seeing my specialist in a couple of weeks for a check up. Also due to morning sickness there are some "no-no" foods that help ease the nausea but are not good for Crohn's so this has been quite difficult for me to manage. Throwing up my medication/forgetting to take it due to bad nausea is also not helping

    Fingers crossed they get to the bottom of your symptoms quickly and control it ASAP for you.
    Last edited by Pearlygirl; 27-02-2014 at 22:04.

  3. #3
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    You beat me to it I was just heading over here to the health section to start a similar thread

    I have been in pain and fatigued and run down since DS1 was born nearly 7 years ago. I went to countless Drs looking for a answer they did general blood test and script for painkillers and would fob me off as someone just after drugs. That is until last year I was having a bad flare up and went to a new Dr at my local surgery and he looked into my files and took A LOT of blood and diagnosed me with Fibromyalgia. He put me straight on endep and Panadol osteo and voltaren 50 and has given me repeated scripts for panadine forte and Nurofen plus for when I have bad flare ups. I have also done endormologie therapy for the pain which helps a lot. I have found flying causes me a great deal of pain for some reason. I also have a very poor immune system and catch every little bug out there which leaves me very tired and in more pain then I ever thought possible.

    Other then the pain the worst thing about fibro I feel is the lack of support because you don't look sick so people just assume you are being a whinge or lazy. DH was never fully supportive until I sent him to my endormologie lady to get a treatment for his back and she told him that a lot of people struggle to just get up to pee, so that upset me that it took hearing it from someone else to believe how bad it is. My sister fobs me off and if I ask for even a little help from her told no because I don't look or sound sick. My Mum is good but a tough it out kind of person where you need to force yourself through the pain and won't listen to how bad it is but she will help when she can. I hate asking for help and try to do everything myself so I don't have to but there are days when crying is all I can do so sometimes asking is the only option, I just wish people were more understanding.

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    Subbing for later, but I'm so glad you have started this thread Op. I have Fibro as a secondary symptom to Ehler Danlos Syndrome, and it's slowly killing me. I'm glad to meet fellow sufferers....not glad that you have it though

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    Having another bad day today, I think maybe it is because I flew to Brisbane last Thursday and then home Monday plus had busy full days in between and my body is struggling. My body is also fighting a infection from having a wisdom tooth pulled out so I am in more pain then ever

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    Hi girls

    Great idea to start this thread. I have chronic fatigue syndrome. Was diagnosed in December 2011 but had been struggling since 2007. I have IBS and chronic wheat intolerance (all diagnosed in 2011 along with having my gall bladder out).

    2012 was absolutely horrible. I dragged myself through each day and was a wreck. I'm on 20mg of Lexapro daily which has really evened out my anxiety which has helped. I also eat a predominantly raw diet that is high in protein. If I fall off the wagon with food I fall off the wagon full stop. Too many processed foods = extreme lethargy.

    My immune system is pathetic. I have seen a slight improvement in the past year and am hoping it will continue. I catch everything and then can never get rid of it.

    I have to say my family and friends have been amazing and continue to be. Sometimes I just can't do things due to a CFS flare up and everyone is cool with it. My husband is awesome about it in every way.

    So that's me! Hugs to you all. Functioning with chronic illness is tough. Xx

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    Great idea im sure we all need some support and a place to vent!
    I have had under-active thyroid since 14yr old. I had glandular fever which kicked off chronic fatigue.
    I have two children to a previous relationship and am pregnant to my DP, its going to be hard this time as it all flared up worse this last 2 years then ever and i have been on strong painkillers when it gets to bad. Now being pregnant (surprise) i cant take any but lucky so far it hasn't been to bad.
    My mother has Fibro she thinks i have it or am on my way to it sadly... I dont want to know all im focusing on is keeping healthy and positive
    I have found and so has my mother who has been battling with fibro for a looong time, a healthy clean diet, and milk keifer had been a little miracle to us if you haven't tried it i advise you to look into it. It has been amazing help given me that bit more energy to be there for my children
    This early stage of pregnancy hasnt helped but once that settles i hope to be even more on the mend! Keifer is my best friend
    https://www.facebook.com/CulturedFoodLife is a great start listen to her video on web site and if you get her book the bio part is amazing
    i say try anything that could help but do your research Hugs x

  8. #8
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    Hi ladies
    Nice to meet you and thank you for sharing a bit about yourselves.
    Gentle hugs to those that need them.

    I have heard that a lot of CIs go into remission or the symptoms are very low during pregnancy.

    I haven't heard back about bloods so I will call Monday to find out what's going on.
    Yesterday and today I've have low pain but fatigued. Seems I can't get a break from any symptoms now *sigh*

    It's really hard having a CI and we are the only ones that feel it, that no one can see what it looks like.
    My immediate family used to think I was lazy, weak and being overweight was what was making me tired. In the last 1.5 years they've really come to understand so much more. That I'm not doing things or can't do things because I don't want to, it's because my body can't do all the things i want it to all the time.
    However some others haven't been that understanding so I don't bother with them anymore. I put my energy into people that support and understand as best they can now.

  9. #9
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    So glad you started this thread, I started a similar one a few years ago, but it died. I don't have Fibro, although I do have 4 other autoimmune diseases. I was diagnosed with connective tissue disease from all the issues I had breastfeeding in my late 20s (severe vasospasm etc) since then I have been diagnosed with psoarsis, coeliac and a stupidly rare disease called eosinophilic oesophagitis which has a fairly bad outcome usually - but is basically where my immune system attacks my oesophagus.

    I too started showing autoimmune symptoms as a child, but of course back in the 80s nobody knew about these kinds of things.

    I'm booked for a scope in 3 weeks am so not looking forward to it as last time, because my oesophagus is damaged, it tore a bit and after I woke up I was in terrible pain and couldn't swallow for 5 days. Ew.

    I am supposed to have started methotrexate last year, but it freaks me out so much I keep putting it off

    Worst part about it is is the fatigue, I can deal with the arthritis and walking like and old woman, but the fatigue is such a downer. I went into remission with pregnancy as well.

  10. #10
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    I hear you loodle, my immune system is shocking. I am antibiotics every second week it seems.

    Quote Originally Posted by loodle View Post
    You beat me to it I was just heading over here to the health section to start a similar thread

    I have been in pain and fatigued and run down since DS1 was born nearly 7 years ago. I went to countless Drs looking for a answer they did general blood test and script for painkillers and would fob me off as someone just after drugs. That is until last year I was having a bad flare up and went to a new Dr at my local surgery and he looked into my files and took A LOT of blood and diagnosed me with Fibromyalgia. He put me straight on endep and Panadol osteo and voltaren 50 and has given me repeated scripts for panadine forte and Nurofen plus for when I have bad flare ups. I have also done endormologie therapy for the pain which helps a lot. I have found flying causes me a great deal of pain for some reason. I also have a very poor immune system and catch every little bug out there which leaves me very tired and in more pain then I ever thought possible.

    Other then the pain the worst thing about fibro I feel is the lack of support because you don't look sick so people just assume you are being a whinge or lazy. DH was never fully supportive until I sent him to my endormologie lady to get a treatment for his back and she told him that a lot of people struggle to just get up to pee, so that upset me that it took hearing it from someone else to believe how bad it is. My sister fobs me off and if I ask for even a little help from her told no because I don't look or sound sick. My Mum is good but a tough it out kind of person where you need to force yourself through the pain and won't listen to how bad it is but she will help when she can. I hate asking for help and try to do everything myself so I don't have to but there are days when crying is all I can do so sometimes asking is the only option, I just wish people were more understanding.


 

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