Hiya!

mickey_witch
mickey_witch Online Community Member Posts: 1 Listener
in Start here and say hello!
Hi all, I'm Mickey and have.a bit of a mixed disability bag  I have hEDS, peripheral neuropathy, arthritis, SLE and a right side diaphragmatic palsy with shrinking lung syndrome and asthma. 
Quite a bag but until recently largely coped with my day to day needs with some help and the main cleaning done weekly. But have.been on disability since 2000. I was much earlier, 1980s but had remission until that time and stopped my clam. This time, there's no possible relapse. 

I have a few pen friends, mainly America and Canada with couple in the UK.  I love to paint, mainly watercolours, but sometimes acrylic or oils. I love to read and visit the beach that I'm lucky enough to live a few minutes from.  I also play DnD each week. Oh, my.favourite drink, a nice wee dram of single malt Scotch, lol
My family means a lot to me. I have 3 sons, and thus 3 daughters. I now have 6 grandchildren, 2 boys and 4 girls. 
My biggest problems are unstable joints and for some time know, pain thats whipping my butt. I can't take opoids  because of reduced lung function, so if any of you have a magic spell or two, this witch would.love it! Pain is a.great antidote for sleep, and if you haven't guess, I can be a tad bit sarky.at.times.

Comments

  • chiarieds
    chiarieds Online Community Member Posts: 16,682 Championing
    Hi @mickey_witch - & welcome to the community. It's nice to 'meet' you, as I also have hEDS with neurological problems & generalised osteoarthrosis; also great that you're another bookworm. :)
    My tentative 'magic spell' is to ask if you've thought about discussing CBD with your GP/specialist?
    I've been taking CBD oil for almost 4 years. This of course is just my personal experience, but I find it reduces my pain (tho not unfortunately my neuropathic pain). Much to my surprise, after taking it for a few months, I began to realise that I was experiencing far fewer joint subluxations. As a long retired physio I also do gentle exercise daily, which also helps.
    To date there's not much published research on CBD, tho it's said it does have the potential to alleviate pain.
    I use this, which contains CBDa which helps with pain: https://www.simply-cbd.co.uk/products/green-cbd-oil?variant=37927970963639   The only caveat is that CBD is broken down by the same liver enzymes that break down over 95% of prescribed meds, so you should discuss this with your pharmacist/GP prior to taking this. If you do take such meds, then for safety, a 4 hour gap is recommended between taking these & CBD.
    It can take between 2-8 weeks to find any benefit, so patience is needed. There are also CBD transdermal patcheswhich can however be used safely as these are absorbed by the skin rather than the gut: https://www.simply-cbd.co.uk/collections/cbd-patches  Still wise to discuss these with your GP/pharmacist.
    I try to stay up to date with info on CBD & on Friday am attending an online meeting on 'Understanding drug interactions and safety for CBD-dominant Therapy.' I know a fair amount about this, but am hoping I might learn even more!
    Another useful resource in managing chronic pain can be found here: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain
    Hope some of this helps.



  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello there @mickey_witch and welcome, it's great to see you join the forum, and for you to share a bit about yourself. 

    Here on the forum, we cannot offer medical advice, as none of us are experts, so it's always advisable to discuss anything related to medication and treatment with your GP, or other specialists involved in your care. 

    It sounds like you have a lovely big family, and plenty of interesting hobbies too. What/who is your most interesting D&D character? If you can't pick one, what's going on in your current campaign? :) 
  • Community_Scope
    Community_Scope Posts: 1,593 Empowering
    Note from the Community Team:

    If you are considering taking any supplements, it's important to seek advice from a medical professional who has knowledge of your health and any other medications you might be taking.

    While we do allow the discussion of CBD oil and other supplements, Scope does not advocate the use of any alternative therapies. Scope reserves the right to edit or remove any discussion or comment on this topic at any time.

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