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.

*head/desk*

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.
More "frankensteining" my fibromyalgia.
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5 thoughts on “More "frankensteining" my fibromyalgia.

  • October 20, 2013 at 7:35 pm
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    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.

    • March 17, 2014 at 8:50 am
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      Claudette,

      I too have Fibro, along with Psoriatic Arthritis and Osteoarthritis. I have had all of them since proablly my teens but was only officially diagnosed late last year. On top of it all I also have Polycystic Ovary Syndrome (PCOS), which I have had since puberty but was not diagnosed untill 2003, IBS, GURD, migraines, chronic asthmatic bronchitis, meniere’s disease, degenerative disk disease & facet disease, both of which have most likely been caused by the Psoriatic Arthritis, anxiety disorder, borderline highblood preasure, tachycardia, most likely caused by one of the many meds I have been on for my various conditions but there is really no telling which one and a yet undiagnosed GI issue that we are still working on trying to figure out.

      Oh, and due to the PCOS, I have severe fertility issues. To date I have only conceived once, resulting in my soon to be 6 year-old. He is my little miracle. We have been trying for a second since he was born, with the limmited medical help available to us, with no luck.

      I just turned 42 a couple of months back and it has taken the majority of the past 10+ years to diagnose the majority of my issues. Before the ability to access the wealth of medical information that came to be available through the internet, I spent years talking to various Dr’s about my symptoms and they would just look at me and tell me if I “just ate healther, exercized more and I droped back down to my prescribed BMI index weight that ALL my issues would go away and I would be pain free. They just never could believe that I was not just fat & lazy and that there was actually something wrong with me, but how many years dk you have to eat boneless, skinless chicken breast, other lean meats and fresh fruits and vegetables daily, in moderate portions for you to be considered eating healthy? Up untill I hit puberty, I was the shortest, skinniest, active child you could ever imagine. I was so skinny that my Grandfather worried about me all the time and when I went to visit him and my grandmother, he would try to put weight on me by feeding me peanutbutter as often as he could, but alas, i was so active and had such a high metabolism that I stayed a “skinny mini.” Then puberty struckand apparently along with it the PCOS.

      Up until I injured myself at the age of 26,while working as a Nursing Tech, I had always worked active full time positions and triex to stay active as possible when not at work and yet I continued to put on weight and my issues k ept getting worse. When I gained access to the internet while recuperating from my secondankle surgery due to my injury at work, i listed all the symptoms that I tbought were relevant and had not been explained by any of my other diagnosed conditions and it spit back out PCOS. I had juststarted seeing the new Dr in the practice, who was around my age and told him to test me for it. He agreed to order all the tests needed and low & behold, I did have PCOS. At the time the prevailing thought process was that obesity caused PCOS & not the other way around. I could not convince a one Endocrinologist nor OB/GYN that for me it all started when I hit puberty, ths rapid weight gain, the irregular peorids with excruciating pain and the migraines. The didn’t even figure out thatI had migraines untill i was about 18 and they never thought to conect it to my other symptoms.

      Fastforward 15 years and I get into 2 rearend collisions at low speeds and my back starts to really start hurting me to the point I could barely walk, sit, stand or even laydown f o r any length of time. I had lost about 25 to 30 lbs in the year prior after getting the PCOS diagnosed and me on medication to treat the condition. Well from the time of the second accident, I have been in and out of PT, been on just about every nerve pain and muscle relaxer out there and have had numerous different types of injections in my back to try to relieve the constant pain as well as just about every oral nerve pain medication,as well as muscle relaxers and basicly none of them have worked in the end. The shots in my back are supposed to last 3 to 6 months. The most I ever got was 3 days. Now, as for pain relievers, I am allergic to all opied based narcotics plus I have a natural high tolerance to a n y type of pain killers, opied based or synthetic, so for the most part, the do little for me and the more I take, the greater my allergy grows. I am currently on NUCYNTA& have been for about 3 years and I am already having to double my dose for any relief and in the last 6-9 months, I have had to start taking alergy medicine with each dose to counter act my growing allergic reaction to the medication. Also, the Nucynta does not touch the pain from the Psoriatic Arthritis and due to my stomach issues, I can not tolerate taking any NSAIDS and to make matters worse, I am VERY allergic to the class of drugs that they have found works best on slowing down the progression of the Psoriatic Arthritis, which are Sulfa based drugs. And just to top off that trifecta of suck, I am NOT a candidate to take ant of the new “Biologic” class of meds that they have found that work on pain, mobility and bone damage from the progression of the Psoriatic Arthritis due to my other auto-immune conditions, specifically my Chronic Asthmatic Bronchitis. So, in other words, the meds like Humera could kill me and I have no options at the moment for controling the pain I am in, nor can I take any medications known to slow down the cripling disease.

      All the autoimmune diseases that I suffer from are genetic and have been passed down from my mothers side of the family and so far I am the only oneof my siblings and neices & nephew to suffer from the Psoriatic Arthritis. We ALL suffer from the IBS to some degree but the only other person from that side of the family has developed any of the more serious autoimmune diseases. My youngest neice was diagnosed with Celiac Disease when she was 8 and then Fibromyalgia & PCOS at 16. She is 18 now and will graduate this May from HS and will be going away to college in the fall.

      I hope that no one else in family develops all the same medical issues that apparently my Mother and I shared. I also hope that they come up with some new, effective drugs and more helpfhul forms of treatment. It terrifies me that with all my issues and espicially the arthritis since it will end up making me wheelchair &/or bed bound before my son is old enough not to need me as much physically as he does now. It already saddens me how little I have been to do with him physically, compared with what all I was able to do with all the childern who’s nanny I was. Daddy is the one who is able to get out there and play with him in the snow, building snow forts and having snowball fights, and making snow angels or when the weather is warm, taking him hiking,or biking or just walking to the park with him so he can play. I feel like a bad and broken mother somedays….

      So, this question is for everyone out there, any good advice for a woman & a mother who is fighting more than autoimmune diseases, as well as other issues?

      Thanks in advance to any of you whomake it allthe way through my post and that have any advice for me

      As Always,
      Cat >^,,^<

  • October 21, 2013 at 3:18 am
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    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!

  • October 21, 2013 at 3:58 am
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    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.

  • October 24, 2013 at 11:41 pm
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    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.

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