While 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:
- B-12 sublingual in the morning. (Jarrow Formulas Methyl B-12, 5,000 micrograms). Energy.
L-5-HTP 100mg at night. (Richard’s WellCare Formulas, European L-5-HTP 100 mg). Take at bedtime with the Flexeril, really helps with sleep. (Note: If you are taking any kind of prescription medication that plays with serotonin levels, you MUST talk with your doctor. Too much can cause serotonin syndrome.)I don’t take this anymore because the nightly combo of the Flexeril and Xanax helps me sleep.- Malic Acid with Magnesium. (KAL Malic Acid with Magnesium, 4 daily) This was recommended to me through someone in a fibro group I’m in. They are 4 horse pills, and it takes a few weeks to build up in the system sometimes and start working, so if you try it, don’t give up after a couple of days. Some people report symptom improvement with a smaller dose, but play with it and see what works for you. 4 is the “daily serving” and seems to be what works for me. (If you have issues with kidney stones, you will want to be especially careful and talk to your physician about this.) I order it from LuckyVitamin.com (NAYY).
- Lecithin, 1,200 mg. (NOW Lecithin 1,200 mg). I have noticed less brain fog since taking this.
Super Omega-3 Fish, Flax & Borage Oils. (Finest Nutrition Super Omega-3 Fish, Flax & Borage Oils.)I’ve switched to hemp oil capsules for now to see how they work. Only been a month, so too soon to tell.- Glucosamine/Chondroitin/MSM (1,500mg Glucosamine, 200mg Chondroitin, 100mg MSM). I am still trying different brands of this, and sometimes the dosage varies a little depending on the manufacturer. Joint support.
- Green Coffee Bean Extract GCA (Jarrow Formulas Green Coffee Bean Extract, 400 mg). Energy. I take this early in the day, usually with my other supplements, unless I forget to take them until after lunch, then I don’t take it because it screws with my sleep.)
- One-A-Day Women’s, Active Metabolism (multivitamin).
- Been taking this a couple of months now: Jarrow Formulas – Astaxanthin – 4 miligrams, 60 Softgels (I first posted about it here.)
- (New) Manitoba Harvest – Hemp Oil Essential Fatty Acid Supplement 1000 mg. – 60 Capsules I’m taking this in place of the Super Omega 3 capsules I was taking.
- (New) NOW Foods – Curcumin 665 mg. – 60 Vegetarian Capsules
- (New) Source Naturals – Wellness Formula – 240 Capsules I don’t know why this stuff works, but it does. I take one a day for maintenance, but when I feel like I’m getting sick, I up the dose and it helps knock it out. Doesn’t knock out flares, unfortunately. LOL
- FibroFree Complex: http://www.nativeremedies.com/products/fibrofreecomplex-muscle-pain-and-fatigue.html
- Fatigue Fighter: http://www.nativeremedies.com/products/fatigue-fighter-support-healthy-energy-levels.html
- PureCalm: http://www.nativeremedies.com/products/purecalm-natural-anxiety-remedy-calms-stress.html
Sooo…that’s me. Hope it’s of help to anyone needing to try something.
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
@Deb – Thank you, and absolutely, feel free to share the info. I hope it helps someone else. 🙂
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 🙂
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.