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Hi, my name is piggywig7!

piggywig7piggywig7 Member Posts: 1 Listener
Hi. Came across this site looking for aids for fibromyalgia. There is so much fantastic, helpful information I have registered. I’ve had it for about 2 years and looking for ways to help myself with the pain and mental health issues. Thanks in advance xx

Replies

  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi and welcome to the community Feel free to join in or ask any questions 
  • chiariedschiarieds Community Co-Production Group Posts: 9,181 Disability Gamechanger
    edited July 18
    Hi @piggywig7 - welcome to the community, & thank you for joining. We have many members with fibromyalgia, & the pain (in part) that I have with the hypermobile type of Ehlers-Danlos Syndrome is most likened to fibro from what medical studies have found, so perhaps I also understand a little of what you're going through.
    Scope has put together some links which relate to stress, isolation, etc. in particular with relevance to coping during the pandemic. However, they're useful resources for any time. I hope you'll take a look at the following link: https://forum.scope.org.uk/discussion/75929/coping-with-stress-low-mood-and-isolation-a-support-thread/p1
    I mainly use exercise, including diaphragmatic/abdominal breathing, distraction (a good book/film/music/gardening), & also CBD to cope with chronic daily pain. You just have to find what works for you, as we're all different.
    Perhaps the only thing missing from the link above is 'what you eat.' Altho we don't know as much yet about exactly how our gut works, a good diet has been found to help in so many disorders both physical & mental; again, we're all different, but slowly increasing the amount of fibre you eat may be helpful (as well as vegetables & fruit), & try to eliminate any processed food & sweet, fizzy drinks.
    Hope some of this helps, & hope you very much enjoy being a member of this forum. :)
  • Beesmummy798Beesmummy798 Member Posts: 71 Courageous
    piggywig7 said:
    Hi. Came across this site looking for aids for fibromyalgia. There is so much fantastic, helpful information I have registered. I’ve had it for about 2 years and looking for ways to help myself with the pain and mental health issues. Thanks in advance xx
    Hi there, I have fibromyalgia also. Its such a hard
    'invisible illness' to treat. I still haven't got a treatment plan or correct medication to keep it under control. Maybe we can share some tips, my pain is mostly in my hands, but have pain all over. Take care x
  • Beesmummy798Beesmummy798 Member Posts: 71 Courageous
    chiarieds said:

    I mainly use exercise, including diaphragmatic/abdominal breathing, distraction (a good book/film/music/gardening), & also CBD to cope with chronic daily pain :)
    @chiarieds I do all these except for CBD. I just can't seem to find one that suits. I vape so could maybe vape the cbd? I did buy a cbd oil before, you had to put the drops on your tongue , it was £50 for a small bottle, I dropped it, it smashed after using it once so never got another 😔
  • chiariedschiarieds Community Co-Production Group Posts: 9,181 Disability Gamechanger
    Hi @Beesmummy798 - I can recommend one from an ethical company with lab certification as to the quality, & amount of CBD, etc. It's also reasonably priced; mine is £22 for a 30ml bottle (£8.50 for a 10ml bottle), & currently they've reduced the P & P to £2.99 (free if you spend over £40). Please let me know if you'd like to know more......I've been using it for almost 3 years from this company. You can't vape CBD oil (definitely dangerous), but there are CBD E-liquids (one from this company, but I know of another reputable company whom I've bought different E-liquids from). I researched a lot before trying CBD (& later vapes), so please let me know if you'd like to know more, & also how to most effectively use CBD.
  • Beesmummy798Beesmummy798 Member Posts: 71 Courageous
    @chiarieds I'm definately interested. I've been thinking about it for a while, just don't know what one to get or much about them. I've been reading cbd is good for chronic pain and mental health also. If you could help out I'd be grateful. Thankyou x
  • chiariedschiarieds Community Co-Production Group Posts: 9,181 Disability Gamechanger
    edited July 19
    Note from moderator, every person's experience will be different when considering treatments like CBD, and it's important to always consult your GP before you consider taking such supplements.

    HI @Beesmummy798 - Yes, CBD is paricularly helpful with pain & anxiety. The CBD I use is this: https://www.simply-cbd.co.uk/products/green-cbd-oil?variant=37927970963639  it contains CBDa which is particularly helpful for pain.

    (Removed by moderator, medical advice is not allowed on the community)

    The very important bit.....what so many don't realise is that CBD is broken down by a group of liver enzymes (cytachrome P450) which also break down/metabolise over 90% of prescribed meds. For safety's sake, it's considered best to leave a 4 hour gap between such meds & taking CBD. Yes, CBD is sold as a food supplement, but, if it's being broken down by these liver enzymes, it might stop your meds being broken down effectively, so this gap is needed. The same with some over the counter meds, particularly containing codeine. So, it's very wise to discuss this with your pharmacist/GP. (Removed by moderator, medical advice)

    I hope this doesn't sound like a minefield; I just hope you can try taking CBD effectively, & safely.
    If you can't (due to your meds) take CBD, vaping is definitely an option, & can be used any time as not taken orally. Again, let me know if that's an alternative/additional option....way shorter epistle. :)
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