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ME and Fibromyalgia Awareness Day 2016! Watch

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    (Original post by furryface12)
    Thanks! Yeah there are so many different elements to it. For me ME was followed by NMH, it's also made worse a lot of other health stuff going on before then. It's interesting how it's triggered in different people too- mine was post viral which I think is pretty common, it wasat a very stressful time too and I kept going through it which typical for me just made it all worse But you're right, supporting each other and trying to raise awareness to others is about the best thing we can do for now, then hopefully one day science will catch up with us!

    How old are you, just out of curiosity? My dad got Fibro when he was about 35ish? I was wondering if there was any kind of age correlation with when the symptoms show as my Dad used to run a Fibro awareness group that met every 2 weeks and (I was in charge of registering people) I never registered anyone younger than about 35. It was a really good group to start off with but one of the women who attended decided she was going to take over.


    People stopped coming after she had taken over and changed the group to the way she wanted it to be which was a shame as my dad had put a lot of effort into setting it up so he could find others with the same illnesses that could share their experiences and how they got around it day to day. I think more groups like that would be good, we still get phone calls about 7-8 years on from closing the group asking for support.
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    (Original post by melinae)
    How old are you, just out of curiosity? My dad got Fibro when he was about 35ish? I was wondering if there was any kind of age correlation with when the symptoms show as my Dad used to run a Fibro awareness group that met every 2 weeks and (I was in charge of registering people) I never registered anyone younger than about 35. It was a really good group to start off with but one of the women who attended decided she was going to take over.


    People stopped coming after she had taken over and changed the group to the way she wanted it to be which was a shame as my dad had put a lot of effort into setting it up so he could find others with the same illnesses that could share their experiences and how they got around it day to day. I think more groups like that would be good, we still get phone calls about 7-8 years on from closing the group asking for support.
    I was 17 when it started, I'm now 20. From memory fibro starts normally from 30-50ish (which fits with what you said) but not always, Mini is younger than that for example! ME can be any age, I think it's technically most common 20-40ish but a fair number of children and teenagers have it too and older people so really any age.

    Your dad sounds amazing! It's a shame it had to stop in the end. I'm part of a couple of online support groups but in general they tend to upset me more than anything else seeing how ill people are and how long they have been for. People from TSR who have it and in the MHSS (mental health support society) thread have been amazing though so I guess they can work both ways
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    (Original post by melinae)
    How old are you, just out of curiosity? My dad got Fibro when he was about 35ish? I was wondering if there was any kind of age correlation with when the symptoms show as my Dad used to run a Fibro awareness group that met every 2 weeks and (I was in charge of registering people) I never registered anyone younger than about 35. It was a really good group to start off with but one of the women who attended decided she was going to take over.


    People stopped coming after she had taken over and changed the group to the way she wanted it to be which was a shame as my dad had put a lot of effort into setting it up so he could find others with the same illnesses that could share their experiences and how they got around it day to day. I think more groups like that would be good, we still get phone calls about 7-8 years on from closing the group asking for support.
    I'm 23, 24 next month. Pain started at about 16/17 when my knees started hurting in college. Got worse at 20 when I fell and injured my back which recovered very quickly and then got drastically worse very quickly and never got better again. They think the combination of the injury and the fact that it happened as I was writing my dissertation and all of the stress involved with that kick started the worst of the fibro.

    My mum also has fibro and her diagnosis for that came much later in her 30s, like your dad, but she'd been suffering with rheumatoid arthritis since her teens, so there should have been a missed overlap in that for a long while.

    Most of the people at physio at the specialist hospital I go to are older than me in their 30s and 40s or much older, or have sports injuries etc. In addition, most of the people in fibromyalgia support groups on Facebook are all 30s or older, but interestingly the ones on Twitter tend to be younger - although this could just be a generational thing in response to social media rather than a reflection of anything.

    I also think once you get beyond the age where they expect osteoarthritis to be completely taking over (late 60s, 70s etc.) then fibro wouldn't be diagnosed there when it really should be. The mother of the woman in the office next door to mine is having trouble like this and I'm telling her about the specialist hospital I go to, because if anyone can find out what is wrong with her then it is them.
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    (Original post by melinae)
    How old are you, just out of curiosity? My dad got Fibro when he was about 35ish? I was wondering if there was any kind of age correlation with when the symptoms show as my Dad used to run a Fibro awareness group that met every 2 weeks and (I was in charge of registering people) I never registered anyone younger than about 35. It was a really good group to start off with but one of the women who attended decided she was going to take over.
    My username gives my age away lol. I got diagnosed in my mid 20s and now I have my latest diagnoses in my late 20s. From all the things..my POTS and Fibro flares are the worst of all my conditions as they're unpredictable. EDS I can manage with pacing n self care with massage and rest.



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    Thought I'd give this a bump as it's (somehow...) the awareness day for 2017 today! There are loads of things going on with the main thread for this year being here, but feel free to keep commenting on this as well if anyone's interested!
 
 
 
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