The fibro has been slowly ramping up over the last several days. I had been taking 600mg of guaifenesin twice a day. I take it at 8:30 in the morning and evening. I got to a point where I felt like it was wearing off before the next dose. I had the thought of adding a middle dose or increasing the dose to 900mg. Shit hit the fan last night, so I panicked and took 900mg. I’ll stick with that dose for a bit. So far this morning it seems that it has paid off. It was a gamble, and it’s working for now. I suspect that I will end up in the same situation within another couple days though. I’m building a house of cards and I don’t think there is any way it won’t come crashing down soon.

This medication is supposed to pull bad stuff (phosphates) from the cells and excrete it through the kidneys. The advice from the support group was that the lower dose was pulling it from the cells, but not excreting it, so increasing the dose could push me past that line and allow the kidneys to filter it out. The flaw with that though is that if I take more, then more will be pulled from the cells. It will charge up the kidneys for a couple days and clear what’s left in the blood, but then as more is pulled from the cells, it will eventually start overwhelming the kidneys again. I tried 300 twice a day before and things went bad. Then 600 and things went bad. Now 900. I think this will only buy me a couple days before things go tits over asshole again. I think I will push it to 1200 as my last stop. That’s where I was when I first started the protocol. I didn’t know what I was doing then, so I went higher than I should. I actually took even more than that. When I took too much, the symptoms became overwhelming.

Now that I’m going through this again, I feel like I’m following the same steps as before. This medication isn’t supposed to have an analgesic effect, but that’s what it seems like it’s doing, although my spine pain actually feels worse. It’s supposed to purge the built up crap from the cells. As that happens, symptoms can get worse until the kidneys catch up. It’s meant to reverse the disease, not treat the symptoms. Seems simple, but it doesn’t seem like it’s working that way for me. It’s acting almost like a pain medication. It helps the fibro for a handful of days, then it stops working, then I need more to achieve the same result. This medication doesn’t affect opioid receptors, but it’s acting similarly. There aren’t any withdrawal effects or physical dependency. Unfortunately there just isn’t any real science around this protocol. It’s all based on anecdotal evidence. Of course I’m not responding like a normal patient. I never do. It’s one of my curses. No doctor other than the one who created the protocol prescribes this medication for fibromyalgia. You have to read the book and follow the protocol laid out there. Almost flying blind with an internet miracle cure. Lovely stuff. I have to do it because I’m out of options.

Maybe I’ll get lucky and find the goldilocks dose. If I can get by with only mild flare ups, then I can stick with it. I thought I felt the flare turning around yesterday in the early evening, but then it tipped and started getting extreme. If the flare went away and I was left with a mild flare, then I would have stuck with that dose. I’ll stick with this for a little while longer, but I feel like I’m only setting myself up for failure. Not because I’m doing it wrong, but because that’s the only way this medication is going to work for me. I don’t think there is a positive outcome for me. And when I run out of wiggle room, the flare up that is waiting for me is going to be absolutely brutal. This drug doesn’t stop flare ups, it just delays them, and it piles them up and lets them accumulate. One person in the forum said to increase temporarily in order to get past the clearing cycle, then go back down. Another said to just go up. My thought before was to spend like 3 days on, then 3 off. Another version of this would be to take 600 normally, then jump to 900 as needed to get through the rough spots, then go back down to 600. That way there is always medication in my system doing its thing. So since I got past the rough part, maybe I should drop back down to 600 tonight. (??)

The only thing that has been truly helpful for the fibromyalgia has been pain relief. This protocol is supposed to make symptoms worse, and it is making the spine pain worse. I need spine pain relief before anything will work for me. I think spine pain relief alone would probably fix the fibro. I’ll probably have to end up tabling this protocol until I can get my spine pain treated properly. Once I get to lower pain levels, then I can monkey around with this protocol again. Until then, I’m ready for it to fail. Again. If this all sounds extremely desperate and insane, believe me, I’m aware. This is my life now. I jump from miracle cure to snake oil cure and back again. I can’t get doctors to help me. I have no choice but to try to treat myself. I prefer not to become an alcoholic or something trying to dull the pain of the symptoms. This is the only “treatment” that promises to reverse the disease. I’ve said it before: If someone handed me a pile of dog shit and told me if I eat it, it would help my pain, I would eat the dog shit without hesitation. Such is the life of an extreme chronic pain and fibromyalgia patient.

By Del

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