Frankensteining my fibro: Update 9/20/2015

11880659_917087261697742_7604253638804521189_nWhile I’m awaiting my next visit with my cardiologist to get the results of my stress test and echocardiogram, I need to post an updated supplement post. (Oh, heh, yeah, funny story. I’m showing signs now that might be POTS – postural orthostatic tachycardia syndrome – stuff that I’ve felt all my life and even thought was “just fibro.” Including instances of getting light-headed and syncope/near-syncope. And I’ve had chronically low blood pressure all my life.)

Since my last long post about the supplements I’m taking to help with my fibromyalgia and chronic fatigue syndrome, I’ve changed a couple of things. So here goes, remember that your mileage may vary, I’m not a doctor, consult with your health care provider, don’t run with scissors, and never, EVER fuck the unicorn after midnight in his free-candy van.

Ever.

Glitter. (Just sayin’.)

Anyhoo.

Here’s what I’m currently taking.

If you’re keeping score, you’ll remember that I quit Cymbalta cold-turkey after it stopped working, and Lyrica stopped working for me after sixty days.

My three prescriptions right now are:

  • 10 mg cyclobenzaprine (generic for Flexeril), I take at bedtime (helps with sleep). I can take up to two a day if I want. (Sometimes in bad flares, when I get the really bad myofascial knots on my shoulders, I take a second one during the day.)
  • .5 mg alprazolam (generic for Xanax) which I now take one nightly with the Flexeril and together, they’ve helped me get a good night’s sleep most nights. (And I can take up to three a day if I want.)
  • Naproxin (basically 2.5 Aleve) which I take as needed, up to two a day.

Supplements:

Sooo…that’s me. Hope it’s of help to anyone needing to try something.

6 thoughts on “Frankensteining my fibro: Update 9/20/2015

  1. Tymber while I can begin to understand most of what you write re the fribo things, one of my daughters has they think it. So I pass all you write on to her.
    Hope this is ok?
    Hope you continue to be able to live a great life with this
    Deb

  2. Thanks for your update, Tymber. I noticed you take the Glucosomine, chrondroitin & MSM – when we were in the USA this last time, I needed to top up on Vit D (in the US you can buy 2000 & 5000 mcg capsules or sublinguals – in Oz we are limited to 1000 mcg caps so I always stock up while there) Anyway while I was there the homeopath also recommended NOW hyaluronic acid – a joint lubricant, I take 2 caps/day and he showed me a cream by NOW Solutions with glucosamine, MSM & arnica – I almost didn’t buy it but at the last moment I thought wont hurt to give it a try – I AM SO GLAD I DID! for me this is a wonder cream, I, or hubby ;-), can rub in into my back or over the problem joint (hips, knees, shoulders, spine, fingers) and honestly I have some relief within about 10 minutes and it lasts for about 2 hours. I have had to stop with prescribed osteo pain relief due to bad liver function bloods, so this discovery has been very important to me. I will say capsules with Glucosamine, chrondroitin and MSM do nothing for me, while being a wonder product for hubby, so I was surprised that the cream worked – don’t know if it is the arnica that makes the difference or the different means of delivery, but it does work so I don’t care 🙂 . The only thing now is that I have to get it sent to me as it is not available here. I also take a mega dose of magnesium in the evening for sleep, Curcumin 4800+ for pain – takes about 6 weeks to get blood levels up and then morning and evening dose. I have replaced sugar with Xylitol and gone gluten free and also take a herbal blood sugar balance product and liver tonic for the liver disease and my blood results are improving so that is good. I also take CQ-10 as it is meant to work well with the B12. Again this is what I have worked out so far which helps me…. it may not for others 🙂

    • @Vanessa – I wonder why they don’t sell it there in that strength? I do have something called Topricin that I use topically that helps a little, and it has arnica in it, too. I believe. But I’ll look into that NOW brand one, too.

      • I don’t know why we are limited but we do have a govnmt which thinks we cannot think or critically assess information so they have to regulate everything for our ‘protection’ (very wry grin). we like to think that we are advanced down here but I find on numerous medical issues not so much – I know a lot of our medical deptmts regularly ‘consult’ with US or European counterparts – so it is a good thing they are all there 🙂

  3. Hello, found your site looking for BDSM and chronic illness. Im curious if you have ever heard of Ehlers-Danlos Syndrome Hypermobility type. Its very commonly missdiagnosed as fibro and also goes hand and hand with POTS. If you have hyper mobility in your joints (people have called you double jointed maybe?)..Please look into it and talk to you doctors.
    I have this connective tissue disease, autonomic dysfunction, a auto immune disorder of the spine and joints called Ankylosing Spondylitis and most recently dx with asthma (common in EDS patients). Ill have a look at some of your books. I like to read as much as I like to write.

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