More "frankensteining" my fibromyalgia.

Sunday, October 20, 2013
I realized today that while I thought I'd put up a follow-up post about my current supplement regimen to help control my fibromyalgia symptoms, I hadn't.


First, if you haven't read any of my previous posts about fibromyalgia, including me quitting Cymbalta cold-turkey last fall, you can find them all here.

Let me start by saying I am NOT a doctor. I am NOT saying that just because this is something working for me that you should immediately try it without researching it or talking to your physician. But because the state of health care in our supposedly advanced country is crap, and I know I, for one, cannot find insurance that will touch me (yes, I am TOTALLY in favor of Obamacare) I offer my experience up as reference if anyone else needs to look in similar directions.

For starters, I'm still not regretting quitting the Cymbalta. It had stopped working for me, and since getting off it, I've lost 20 pounds that I gained while on it.

My three prescriptions right now are:

  • 10 mg cyclobenzaprine (generic for Flexeril), I take at bedtime (helps with sleep)
  • .5 mg alprazolam (generic for Xanax) which was actually prescribed for flying anxiety, but I accidentally discovered it helps me if I'm in a bad flare. I don't know why, but it does. I only take it as needed, which means maybe once every couple of months.
  • 10mg/325mg Oxycodone/apap which is my "safety net" drug. Meaning when on a scale of 1-10 my pain levels hit a 37, I break down and take one. Fortunately, I have not had to take one since I screwed up my knee in January. I DESPISE taking them, because there's a 50/50 chance they'll make me puke, and I hate the way they make me feel. Meaning a prescription for 60 of them has lasted me longer than the expiration date on the bottle. LOL
My daily routine with supplements is as follows:
  • 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.)
  • 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.)
  • 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).

I was also taking a D supplement but have discontinued it for now because I didn't notice much difference with it. Also, as I said in an earlier post, I'm not taking a multi-B supplement because of my multi-vitamin and the B-12. So far, that seems to be working for me.

I also take C and Echinacea as needed. I use herbal teas like chamomile at night.

Something else that has helped me is fire cupping (which is actually an ancient Eastern medical practice, not just a kinky one LOL). It's like getting a really great hot rock massage in reverse, and I've used it before to break up really bad fibro knots I get in my shoulders. Of course, I've found a good slow impact play session releases boatloads of endorphins into my system and helps with pain relief in that way, too.

Another thing I've started looking into is myofascial trigger points and pain, because many fibro sufferers actually have active and severe pain trigger points. Several great books and tools from Amazon on that.

I also use aromatherapy in the form of essential oils. Have a lot of great results with rosemary, peppermint, and lemongrass. Some people also like lavender, but I'm not really a fan of that one as much for some reason. *shrug*

Found this graphic on Facebook.

Exercise: When I can get to the gym and spend time in the pool doing slow laps and water walking, that helps as well. As does time in their hot tub and the dry sauna. And even just slow stretching really helps out with me.

As for diet, cutting out a lot of processed foods seems to have helped as well. (Hubby is becoming an AMAZING cook and really does a great job with that.)

Again, RESEARCH. Because fibromyalgia is a syndrome of symptoms with multiple possible causes, there IS NO one right answer for everyone. What works for some might not work for others (or might even be harmful). Talk with your physician and do your research on supplements/herbals before trying any. Also, make SURE to talk with your pharmacist with a list of EVERYTHING you're taking (herbal, supplements, and prescriptions) in your hand so they can check for drug interactions.

I hope this list helps you on your quest for symptom management.

Namaste, peeps.

4 reader comments:

  1. Unknown said...:

    My Fibro is really tightly controlled. So almost anything can knock me down. I have tried some of things you have listed, but not at one time. I also have Psoriatic arthritis and Osteoarthritis. I have had arthritis for 37 years and Fibro for 20 years. (My ex thought I was lazy. God love him, because I don't). My husband takes extremely great care of me. He reads up on all my illnesses and supports me. I'm in to homeopathic medicine, so the less I take of heavy meds I take the better. Thank you for sharing what you take and etc.

  1. Vanessa said...:

    Thankyou for sharing the details of your journey, Tymber. It has been quite a journey for me. I kept silent about this for years as a lot of people, including some doctors, still think it has a purely a psychological basis. Now that I have been talking about it a lot of people are prepared to say "me too and this is what I do". Our medical system here deals with this badly as well and I seem to react very badly to what I will call traditional medicine's drugs so I have turned to vitamin supplements. I also have osteoarthritis and liver disease. To that end I have chosen to eliminate sugar as much as possible from my diet, removed processed food as much as possible ie canned tomatoes, fruit, sauces etc and go for natural and fresh as much as I can. I eat a lot of green foods for my liver and go for my 120 grams of protein and then a plate load of salad which is 'free', sometimes just a little balsamic dressing. Those changes have seen me loose 10kg/approx. 25pounds I think. I time my supplements carefully taking magnesium supplement with pain medicine at night to help with sleep. I also take the same chondroitin, glucosamine & MSN, calcium, vit D as my levels were almost non-existent. I tried to take 1000mg fish oil and 500mg of Red crill oil but I ended up with severe abdominal pains so I stopped. We are unable to buy the sublingual B12 here so I am hoping to give that a try when we are in the USA next year. I am a bit nervous to bring all my supplements through customs so I will buy them once we arrive.
    In the past my husband would give me wonderful firm massages to my shoulders to also get rid of the fibro bunches there but I discovered by accident that actually the lightest touch has the best impact and so now when I am ready for sleep for husband will just very lightly run his finger tips over my back and honestly... the combination of everything has me asleep very quickly. such a great discovery and he feels good as he can actually do something which helps. He has had to also deal with my insomnia now for 35+ years.
    I cannot imagine how it would feel to have a partner not supportive in coping with how all this impacts fully on a person... I am just so thankful for the man I have. [smile]
    I might need to give lecithin a try as at time the 'brain fog' annoys me and is frustrating for everyone around me.
    At the moment things have come to a bit of a halt as I came down with shingles about a week ago and will not finish the antiviral meds for a couple more days. The pain of them being in the skin is awful, I am hating it when the pain meds allow the breakthrough pain and the 8 hours are not up yet! They are on my right side up my neck into my hair and across my right shoulder... so no massages at the moment [sad face] I am so looking forward to the moment I realise the pain is reducing and I am recovering!

  1. Thanks Tymber. I just started following you and I find it interesting that there are so many of us out there. I was diagnosed with Fibro about 6 years ago. I am always interested to hear what other people are doing to manage their symptoms. I was on Cymbalta until last year when my new rheumatologist sent me for blood work due to RA. So now I can't take any NSAIDs because my kidneys are being affected. (I think that was the one anyway.) I have had a tough couple of years--moving from near my family to an area where I know nobody and stay at home with my two adult children who have autism. So, thanks for the info--I need to research more supplements.

  1. Unknown said...:

    I ditched Cymbalta as well. It didn't seem to mix well with my BP meds or my Metformin. My diabetes doc prescribed Lyrica for diabetic neuropathy (my feet would feel like they were in fire), and it has actually helped a bit with the fibro. It also mixes well with my Lamictal, Trazadone, and Welbutrin. I ran out of it for a few days, and the withdrawal was agony. I will never let that happen again.

    I've been having terrible pain days within the past few weeks. I know I'm supposed to exercise, but it's so friggin' painful. I take a lot of hot baths, and my wonderful hubby will give me massages. I hadn't thought about aromatherapy, and I'll be trying the peppermint and the lavender.

    Thanks for posting.