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Nausea - fibro or medication?

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Fibromyalgia
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Posted 9/2/2013 5:12 PM (GMT 0)
Ugh. I'm starting to lose patience with my treatment. My RA warned me it was going to be hard but I wish there was a forum specifically for those going to my Fibro Learning Center in Sacto, CA.

I am on a multitude of supplements and medications:

Pain: oxymorphone, Butrans patches, Advil here and there, occasional muscle relaxer, nitroglycerin/pitocin self injections to increase blood flow & help with pain.

Anti-Viral/Fungal, etc: Valtrex, soon to pick up Nystatin, VSL #3 (very expen$ive probiotic), milk thistle for liver support (though my function tests were fine), activated folate (Folapro)

Supplements: fish oil, multi, Vit D, Vit E, Vit K2, Vit C, CoQ10, occasional magnesium for cramps caused by pitocin shots near my period

Now, since I started taking all of this (multiple times of day both with and without food) I have been nauseous......every day. So I have been expirementing to see what is causing the nausea and as soon as I think I have it figured out (I thought magnesium, then oxy, then probiotics), it changes. I have no idea what is making me nauseous but I am so sick of being sick!! (AA anyone?)

I'm tempted to stop them all, save the pain pills and see if it helps but I did take a half day off the other day and it still didn't work. And it's not something I am eating (well that's not true - I have been developing some severe food allergies as of late), but ARGH!! If I stop then I am delaying the progress that all of this is for. And I had been warned - I just figured I would feel like I had the flu. And I know it sounds crazy but I think I would prefer that over constant nausea. It eventually stressed me out and I start having stress related tender point pain and its become this viscous cycle.

Anyone else on a crazy regimen that is making them absolutely hate their RA, even though you know it's for your best interest?

*barf*
Posted 9/2/2013 6:10 PM (GMT 0)
Have you called and talked to the RA about all this?

I really don't believe in one-size-fits-all approaches. Is that what this is, or did they tailor it specifically to you and your needs?

Debbie
Posted 9/2/2013 6:27 PM (GMT 0)
Both. They are a duo, one does patient care and one does research. The researching one has found (along with his colleagues in research schools) that there are too many parallels in blood work to ignore treating certain angle of fibro the same way. For instance, all of us would take the same supplements but not all of us will take antifungals or antivirals depending on our labs.

Another example of current nausea: I took one oxymorphone with coffee this morning and wasn't nauseous until two hours later. Ate something and nausea ceased for 45 minutes. I have not taken anything else medication wise today and my nausea is back. I can not take anything else for the rest of the day (food/drink only) and will likely still have nausea.

No I haven't called yet about it. He's so used to PTs complaining about their symptoms during treatment but knowing the outcome that he's a wee bit...unempathetic. Ill call tomorrow but I will likely get a call back saying to move around when I am taking something or that the meds are working and that is why I feel this way. Ill report back what he says.
Posted 9/2/2013 6:33 PM (GMT 0)
Have you typed these in at drug.com interaction checker?
It helped me find out some interactions that I didn't know about with several of my drugs.
Posted 9/2/2013 6:37 PM (GMT 0)
That's a great idea Joy, thank you.
Posted 9/3/2013 12:22 AM (GMT 0)
AnnaB-I think I may be receiving treatment at the same place as you. I am also on lots of supplements, a few prescriptions, but nothing really for pain.

I have been seeing them since March of this year & if it helps at all, something is really working. While I don't feel back to my normal yet, I feel so much better now. In my opinion, I get better practical info & treatment from Michael, the PA.

There have been several times when he has told me that I would feel worse before feeling better, & that has been correct. In particular, when I have struggled with nausea, the nystatin & mega doses of charcoal really helped. The charcoal dosage protocol is a little tricky, but if you're interested, let me know & I'll try to explain it.

I know it's hard, but it has helped me, if that gives you any encouragement. Believe me, there have been many times when I have been counting out all my pills for the day or having to take my pill case everywhere I go just to get everything in, that I have wanted to toss it all. But I just have to remind myself that I can see improvement.

Good luck.
Posted 9/3/2013 2:44 AM (GMT 0)
Yay! We are going to the same place! I tried to describe Michael and I had a hard time. I was like 'if Bill Clinton [referring to that charm he shows *when* he wants to turn it on] was a doctor/general in the military'. Haha I can tell he 100% believes in the treatment and for his leadership I appreciate it. Because honestly if he wasn't so earnest/grrrr about it, I would have totally said 'eff this'.

I actually haven't started the Nyastatin yet. I am thinking its the increased D and associated die off and the VSL. I didn't take anything today apart from Advil and a handful of pain meds and found that it still was around. It's almost like the stomach ache I get when my blood sugar is super low. I have been eating grapes (which I never ever eat because they make my blood crash on a normal day) but I have had only positive reaction from them. I'm wondering if, then, I am merely feeding the bad bacteria with the grapes and that's why I was feeling better? Oops.

So tell me about this charcoal? And did I totally screw myself over by skipping a day? Also - did you get heart burn?
Posted 9/3/2013 3:48 AM (GMT 0)
Let's see if I can articulate a couple of thoughts....

I did try to increase my Vit D too quickly & felt awful, but not really nauseous. However, I would think it might affect people differently.
So I increased it super-slowly & did much better. I have had that reaction to several things Michael has advised me to take & when that happens, I back way off the dosages & go very slowly.

Also, I tend to get nauseated when I am too tired. That's how I know the difference between regular tired & fibro tired, if that makes any sense.

On a crazy busy day, I skip a lot of the meds & supplements. I don't do it often, but some days I just can't keep up with it all if I'm going to be terribly off my schedule.

Charcoal tablets are like a wonder drug for me. I save them for when I am feeling bad, though, cause the dosage is a pain. I take 20 tablets at once. Someone mentioned to me that she took them all quickly & it bothered her stomach. I take one, wait a minute, take another, etc. Here's the hard part: the tablets have to be taken 1 1/2 hours after eating, taking meds, supplements, etc & 1 1/2 hours prior to eating, taking meds, supplements. The theory is that the charcoal absorbs the toxins, but if not taken at the right time, it will absorb the good stuff you need, too. So if I eat at 8:00 am, I take the charcoal at 9:30 am. It usually takes me about 20-30 min to get all the charcoal down, cause I have a sensitive gag reflex. Then I can eat again at 11:30 am. Hope this make sense.

Michael told me I couldn't overdose on charcoal. During one of my absolute worst flares, I took 20 tablets at night, took 20 more the next morning, & started feeling better by that night. By the next day, I felt good.

Sorry this is so long. But I know what it's like to be confused and uncertain if anything is really working.
Posted 9/3/2013 4:38 AM (GMT 0)
That's very helpful! It didn't even occur to me to lower supplements on busy days because I thought they would *help* but its a great reminder that they are working on my body not necessarily with my body. Ill check out the charcoal tomorrow. Thanks so much for your input! :)
Posted 9/5/2013 7:30 PM (GMT 0)
After reading all the post here. I think I will stick to my easy treatments. It sounds like no fun being sick to your stomach. Then take 20 charcoal tabs to relieve it. Your both more braver then me. Lol
Posted 9/5/2013 7:55 PM (GMT 0)
I am finding a slight connection. Now when I am tired I am incredibly nauseous. Threw up today at work and it made me feel better. I had taken 2 (!!!) sips of coffee and instantly went 'uh oh'.

Post Edited (AnnaBananna) : 9/5/2013 2:01:13 PM (GMT-6)

Posted 9/9/2013 10:14 PM (GMT 0)
I think it's all about finding a balance that your body can handle. We committed to give this treatment plan 12-18 months. Michael told me that the hope is that after this treatment plan, I will have to take only a few things for the rest of my life. I should have mentioned that I haven't had to take charcoal for several months.

And...this weekend we met friends in San Francisco & walked all over. I even was able to walk 4 blocks straight up -very slowly.
Today my legs & arms are aching some, but not enough that I've taken anything. Definitely not a fullblown flare.
Posted 9/9/2013 11:03 PM (GMT 0)
Well that does give me a huge amount of hope, you have no idea! <3

I just started my nystatin today. Go me! I have also determined that I can no longer drink wine or beer. And I hate the hangover of spirits so it looks like I will no longer be drinking. So sad. It was one of the few things that made me feel better after having a FT flare during a job. :(
Posted 9/10/2013 12:13 AM (GMT 0)
Also I haven't been too nauseous lately since I cut back on the VSL.
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