55 Pills for My Fibromyalgia? A Day?

September 19, 2011

Assorted PillsIf you read my last post, 30 Things About My Invisible Illness You May Not Know, you might have seen under item #10: “Each day I take 55 pills & vitamins plus sublingual sprays.”

When doing the “30 things” form, for Invisible Illness Awareness Week, we’re asked not to comment on this particular item, just put in the number – which is kind of interesting and leads to questions. Such as, “What the heck are all those 55 pills?!” and “Are those 55 different things?”

I thought I’d collect this snapshot of what I’m doing today. Please note that this is what I am doing because of things that my doctors have told me to do. If anything I talk about sounds interesting to you, I highly recommend talking to your doctor about it. You are a unique individual with unique needs that need to be taken into consideration. Okay?

Here goes…

I used to take 12 different medications. I’ve been able to come off of nine of those, but I’m still on three:

Mr. Bear in Lavender

  • Topamax (for migraines) (2 pills)
  • Cymbalta (for fibro) (1 pill)
  • Birth control pills (see #14 on this list) (1 pill)

I did start taking my tramadol (for fibro pain) again at night after I lost Mr. Bear, my 15-yr old cat (right), at the beginning of July to cancer. He was my baby. I’ll be coming back off that soon. (1 pill)

I take Armour thyroid (natural glandular) for my Hashimoto’s and low thyroid. (1 pill)

I also use several Shaklee products from Missy Baxter. She one of the People I Love:

  • NutriFeron – Okay, this is seriously awesome stuff. It’s patented, designed by the guy who discovered our body’s natural interferon. It builds your immune system. Research has shown that interferon helps with chronic fatigue syndrome. I take it because it keeps me from getting sick as much. It used to be that if I’d get sick I’d be down for a month or two. Now, I don’t get sick much and if I do, I’m better in a week or two. I pretty much make all my clients get on this. =) (2 pills)
  • B-Complex – WAY better than the other B-Complex I was using. Cut the hair fallout I was having in the shower down to about half! (2 pills)
  • Vitamin D – There’s loads of good research linking fibromyalgia and vitamin D. Plus mine is low and I live in Oregon. I take 5,000 IU per day. (5 pills)
  • Magnesium – Again, good research showing magnesium helps with muscle pain. It is also a good thing to take for IBS-C. (C for constipation. Ahem.) (1 pill)
  • Omega 3s help with IBS, adrenals, heart health, etc. (4 pills)

I take several other supplements my doctor has prescribed. I’d get Shaklee’s if I could, but either A) they don’t have them or B) they’re not gluten-free:

  • Iron – I tend to have low iron, which causes fatigue. (1 pill)
  • Selenium – needed for my Hashimoto’s (2 pills)
  • MyoCalm PM – to help with sleep (3 pills)

These three come from the same company as the nutritional program my doctor introduced me to and that I recommend to my clients:

  • Melatonin at night helps me sleep. I’ve tried other melatonin, but this one ROCKS. It’s dual-layered, so it helps you get to sleep, then really stay asleep. (1 pill) (Update: This is no longer being manufactured. Boohoo!)
  • A digestive enzyme and probiotic supplement to help my IBS and IBS and IBS. =) (2 packets/4 pills)

I use both the Orchard and Garden Blends from Juice Plus for their proven ability to boost the immune system. When I need it, I’ll do a double dose for double the immune boosting power. (4 pills, on a normal day; 8 pills, if I double it)

My acupuncturist has me taking two herbal blends from Evergreen Herbs:

  • Run Chung Wan – for IBS (8 pills)
  • Corydalin™ – for headaches (8 pills)

Last fall, my husband and I both had our neurotransmitters tested through NeuroScience, Inc. In doing that we found a bunch of really interesting things. For instance, I discovered that even though I was taking (at the time) a couple of things that were blocking my serotonin uptake, I still had dirt low levels of serotonin! Thanks to the results of this test, I take:

  • 5-HTP sublingual spray – to boost my serotonin levels, helping depression, sleep, IBS, fibro pain, etc., etc., etc. (4 sprays)
  • Kavinace – increases GABA, which studies have shown to help fibro; helps with anxiousness & sleep. (1 pill)
  • DL-Phenylalanine – to boost several neurotransmitters which help with brain fog, depression, fatigue, motivation, cravings, and loads of other goodies. (currently 1 pill)

Tami's cortisol chartsI’ve also had my cortisol tested twice, you can see the charts here and in this post, revealing that my body is kinda backwards. It’s much better than it was, but I still produce too much cortisol (think adrenaline!) at night. This means that even though my eyes may be closed and I might appear to be sleeping, my body is still trying to go-go-go!

We also discovered that I have almost NO cortisol in the morning when it’s supposed to be highest. My doctor said, “I wonder how you even get out of the bed in the morning!” I said, “I don’t!”

For that reason I take:

  • Seriphos – shuts down cortisol production so that I can actually sleep! Wahoo! (currently, 1 pill)
  • Cytozyme-AD – an adrenal glandular to give me adrenal support in the morning. Energy. Wahoo!  (1 pill)

And that makes 55 pills + 4 sublingual sprays. Whew!

If you have any questions about my meal of pills, I’d love to hear from you. I’d also love to know, is there anything that you have found to be particularly helpful?

 


Photo of Mr. Bear taken by Terri McKee of Terri McKee Photography. All rights reserved. Used by permission.
 
Bonnie Deming March 10, 2012 at 9:22 am

Tammy, I just know this is something I want to pursue in purchasing. My absorbtion is horrible I know. Of course I am here in AZ. and won’t be back home until May.. Any info you can send me is great. Actually, I continue to feel lousy every morning I get up. I am hoping to get on Webinar this Monday evening to listen to ?(brainfog on that cold med ingredient guarifsen..Thank you, Bonnie Deming

Tami March 11, 2012 at 4:22 pm

Hi Bonnie!

I’ll email you some info directly. =)

The webinar tomorrow (March 12th, 6:30 PM Pacific) is about using guaifenesin to treat fibromyalgia. It’s really interesting stuff! Be sure to register here to get the info on how to listen in.

JoAnne Rognlien July 30, 2012 at 6:23 pm

Hi Tami,

Just wanted to let you know that I enjoyed your July monthly meeting. I actually listened to it again today. I am so impressed with your ease & ability to seem Fogless, (is there such a word)? when you are giving a presentation. Need to contact them( Funk & Wagnell)
but I am afraid you won’t get the joke you are too young :)! The new men & women in our group have no idea how fortunate they are to have you & Tamara & that very strong wonderful glue you provide to keep us together!

Just know I appreciate you very much & don’t often take the time to let people know how I feel . Something I should put on my weekly planner.

Hugs,

Jo Rognlien

Tami July 30, 2012 at 7:32 pm

Thanks so much, JoAnne! I really appreciate you being there and I’m glad that you got so much out of it! (And I did get the joke! :))

Rich Carson October 24, 2012 at 1:18 am

Tami,
This is extremely impressive, and it shows that you have done your research. I look forward to learning about Nutriferon. Do you think it has worked for you? ProHealth will soon offer Kavinace, Seriphos, and a few others you mentioned.
Also–your Facebook page is beautiful. Your story is inspirational. A big pat on the back. Good job!
Rich

Tami October 24, 2012 at 9:58 pm

Thanks, Rich, I appreciate it!

Let me tell you a quick story about NutriFeron:
Like many of us with compromised immune systems, I used to get sick several times a year – and when I did, it would last for two months minimum. I started taking NutriFeron in November 2010 after a particularly bad cold. Other than one sinus infection, I haven’t gotten sick in the last TWO YEARS. Seriously. No, I haven’t lived in a bubble either! My husband, who is a “normal person” has actually gotten sick more often than I have (he isn’t taking it). I did just catch my first cold a couple of weeks ago, and I’m already completely over it.

So yes, I think it’s worked marvelously! I encourage you to check it out.

My friend Missy Baxter has a chemistry degree and can give you a lot of the science behind it. She also wrote a great guest post for me on How to Choose a Good Quality Vitamin Supplement. You can contact her through her website.

Very exciting that you guys offer Kavinace now. The place I was getting mine switched brands & I’m not too excited about the replacement…

Amy October 25, 2012 at 7:05 am

I had just started to sleep better on my new wool underquilt and enhancer when, for some reason, I went right back to my old pattern. I have no idea why. It’s like my body can’t just let me sleep! I started taking 5-htp to help me sleep, 300 milligrams before bed, and that also worked great for about two nights, and then it stopped working. I started taking progesterone because many, many, many of the symptoms for progesterone deficiency are the same as fibromyalgia. In fact, it is a precursor to cortisol! So if your body is producing tons of cortisol like mine, you are probably deficient in progesterone, which is why I tend to think there are so many more women than men with fibro (just an aside, my sister has fibro. Her estrogen is low and testosterone high. Her husband has been having a lot of pain we thought was linked to the diabetes, but his testosterone is low and estrogen is high. Now that they are getting that under control, his pain is going away!). And it makes sense, with my history. I had endometriosis many years ago. Doctors wanted to do a histerectomy, but my mother bought me natural progesterone cream. Rubbed it on my belly, and within a few days, the debilitating pain I’d had almost daily for years in my abdomen was gone! Forever. That was about twelve years ago.

So I thought, maybe this progesterone is working. Yesterday, two days into the treatment, I felt great. No foggy brain, clearheaded as can be. My pain had lessened considerably. I had energy! Even though I hadn’t slept well at all the night before. It was a good thing, because I had a full schedule, from 7 a.m. all the way to 8:30 p.m. I had to work, go to physical therapy for my ankle, check on my mother’s dogs and cat, and then rush home to cook dinner (hubby did it for me so I could try to nap, but for some reason, I felt the bed shaking, just the bed. The floor wasn’t moving at all. No sleep. :( Then we went to church so I could teach my Bible study and DH could do Caravan with the kids. I had to move tables around, so maybe that is why I feel like my pain is increasing again and I feel less clearheaded (just overdid it), but somehow, I seriously think my body is just fighting everything I try to do for it. I just don’t get it. Has anyone experienced anything like this?

Tami October 28, 2012 at 3:56 pm

Amy – Yes! Your body’s hormones are all related. Everything is related! My doctor, a naturopath, says that you cannot treat the adrenals (your cortisol) without treating your thyroid, and vice versa. So make sure that you have a good doctor checking out your thyroid.

I was on DHEA for a while because my progesterone was low. DHEA being the master hormone. My DHEA came up, but my progesterone didn’t. For whatever reason, my body wasn’t doing the conversion between DHEA and progesterone. It was most likely because of my Hashimoto’s thyroiditis, which was undiagnosed at the time. Like you, I used a progesterone cream for a while, I also used a sublingual lozenge.

The thing is that there are so many factors. There’s never just one “magic bullet”. You also need to make sure that you’re working with a doctor who really understands bio-identical hormones. I have a client who had a doctor who never did any testing on her hormones and who put her on an extremely high dose of progesterone. This actually caused my client to have extra fatigue and brain fog! You should be treating the progesterone like a medication and have a doctor’s guidance on how much to take and when. You may or may not need the amount you’re taking… or you might need a different amount.

The same is also true for the 5-HTP. You need someone who can give you good guidance for that, as it can interact with some medications in potentially life-threatening ways.

The other thing to remember is that natural remedies are different than taking a medication. Sometimes they need time to work. Things like balancing out your hormones or balancing out neurotransmitters (which is what the 5-HTP does) take some time. It isn’t something that happens as quickly as taking a sleeping pill or pain pill. However, it IS actually treating the underlying problem, instead of just giving you a quick-fix, so once you see improvement it can be longer lasting.

And yes, you might have just overdone things too. ;-)

BTW – have you ever had a sleep study done? This might be a great addition to your investigation into why you’re not sleeping that well.

Amy October 28, 2012 at 7:28 pm

Thanks for your response. I have had my thyroid check. It was bigger than normal, but I was not hypothyroid. I did have a sleep study. I’m on a c-pap. It doesn’t really help. I did realize that after starting with two pumps of progesterone for the first couple of days, we went to one pump. We upped it again, and I’m back to feeling much better. I’m also taking Fibro Response, a supplement with magnesium and malic acid. I’m still having pain, just much less, and I’m clearer headed and sleeping better. Woot!

Tami October 28, 2012 at 8:51 pm

Amy, that’s awesome! Keep it up!

I’m on a CPAP too. It’s taken me a few months to find improvement… so don’t give up and keep working with your sleep doctor!

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