Viewing 18 posts - 1 through 18 (of 18 total)
  • Anyone with fibromyalgia experience?
  • cjr61
    Member

    Diagnosed with fibromyalgia on Thursday so trying to take stock and formulate some sort of plan. All a bit sh1t really.

    Anyone with experience or advice?

    Thanks
    Chris

    Premier Icon theotherjonv
    Subscriber

    My mum has it, but she’s old and less mobile anyway so I think has been very badly hit by it.

    However, Lady Gaga also has it and IIRC made a very good documentary a couple of years’ back which included her experiences with it, which might be a good watch.

    stevextc
    Member

    If you want cheering up and inspiration go and check out Anna Glowinski.
    She made a video after she recovered but short story is she went from a wheelchair to back riding.
    She will say it better than I can.

    cjr61
    Member

    Thanks. Found the article by Anna G – really interesting.

    stevextc
    Member

    Thanks. Found the article by Anna G – really interesting.

    Hopefully also gave you a lot of positive thoughts.

    submarined
    Member

    Really sorry to hear this dude.
    However, a friend has it, spent a fair chunk of her life on various drugs, painkillers, very little mobility etc. She is on no way a hippy alternative therapy person (keep reading!), but her husband found a report with a research trial involving the effect of oxalates on Fibromyalgia patients. She’s tried every other exclusion diet so wearily gave it a go. Much to her scepticism, is had a marked effect. She’s gone from barely able to climb stairs, to happily going for several more walks with no pain. I’ll try and find out more details but it’s definitely something to look at. Iirc they’re found in bars fruit and veg (tomatoes are really high in them I think?)

    Premier Icon cinnamon_girl
    Subscriber

    Someone posted a link recently and think it covered oxalates, will try and find it.

    Premier Icon cinnamon_girl
    Subscriber

    Here you go, check out posts and link by @paton

    Chronic Fatigue / M. E. / related conditions recovery

    cjr61
    Member

    Thanks for the advice and reading. Time for some research I think.

    damascus
    Member

    Can you get a 2nd opinion? My very Ltd experience is when they are not quite sure what’s wrong they tell you that you have fibromyalgia. It’s the same a irritable bowl syndrome. They give you a tablet but don’t find the cause.

    The number of people who have it has risen massively recently. Yet, 10 or 20 years ago I’d never heard of it.

    Have you explored other alternatives? Diet, allergic or intolerant to foods? Lacking in iron, vitamin D etc? Did your blood tests show anything?

    I can’t help but feel it gets rid of you, the Dr’s have diagnosed you and given you a prescription. What makes them positive it’s fibromyalgia?

    My advice is don’t just accept the diagnosis!

    Premier Icon tjagain
    Subscriber

    As far as I am aware is a diagnosis of exclusion. Basically if there is nothing to explain the symptoms that the diagnosis you get.

    A lot of skepticism in the medical community around it as a diagnosis

    Beware woo woo medicine offering “cures” or “treatments”

    cjr61
    Member

    Thanks all. Bloods tests all normal apart from one liver marker being slightly elevated. Experienced consultant rheumatologist diagnosed me so I’m confident (as much as I know or understand) in the diagnosis.

    andylc
    Member

    There will always be controversy around whilst it remains a syndrome, the diagnosis of which is based on a set of symptoms, with no diagnostic test and no real understanding of what pathology is causing it. Even the name is misleading since it indicates fibrosis, which is a process by which connective tissue replaces normal tissue due to chronic inflammation or tissue damage – this doesn’t actually occur so the name itself is incorrect.
    I’d definitely question the diagnosis and make sure proper investigation in has been performed as opposed to a doctor just saying it to get you out the door.

    damascus
    Member

    What are your symptoms?

    Premier Icon crazy-legs
    Subscriber

    I saw the title and popped on here to mention Anna Glowinski but I see I’ve been beaten to it.

    Have a look at some of the riding she’s doing now though, to get back to the level she’s at is incredible. Her brother posts on here sometimes, maybe he can give some insight if he sees this thread…

    Anna is my sister and as mentioned above went from being wheelchair bound to shredding again. She tried lots of things and credits her recovery to Gill Gough, Joey’s mum: http://www.gillgoughtherapy.co.uk/i_index.html

    Fibromyalgia does seem to be a bit of a blanket diagnosis and there are many possible causes and “cures” but I know Anna would really recommend speaking to Gill. Good luck

    Magnesium defficiency is widespread and lack of it can cause muscle pain. Pairs well with vit D.
    +1 for looking in to oxyalates. Cirtain friendly bacteria break it down in the gut. I wonder if anyone is now producing oxylobacter supplement since I last looked. Then there is VSL#3 which is supposed to work.
    Gillgough looks worth some research

Viewing 18 posts - 1 through 18 (of 18 total)

You must be logged in to reply to this topic.