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I got accepted in a fibromyalgia treatment study - Pahavit's Universe — LiveJournal

pahavit
Date: 2-28-2008 5:42 PM
Subject: I got accepted in a fibromyalgia treatment study
Security: Public
Tags:fibromyalgia, ldn, pain, stanford, study
I got accepted in a fibromyalgia treatment study

Low Dose Naltrexone for the Treatment of Fibromyalgia

Researchers think that the glial cells in the central nervous system somehow become overactivated in fibromyalgia, sending inappropriate pain signals to the brain. They think that very low doses of naltrexone will quiet down the overexcited glial cells and reset the pain-sensing mechanisms throughout the body without interfering with the levels of endorphins acting on the brain.

I applied to be in the treatment study a couple of weeks ago, and found out that I was accepted. I had my first appointment yesterday.

The study lasts for 4 months, but I will not be taking the drug the whole time. The first two weeks are devoted to getting a baseline sense of where I am with pain and fatigue. I was given a little Palm Pilot specially programmed to do nothing but track my symptoms every day for two weeks. Then I go back and start on the placebo. They will switch me over to the real drug without telling me, so as not to influence my expectations unduly.

I do not have to stop taking my current supplements, herbs and meds, which is another nice thing. By getting a 2-week baseline reading, they can tell if the naltrexone is making any difference without me having to quit.

They also tested my trigger points very scientifically, which impressed me. They had a device that measured in kilograms per square centimeter how much pressure was being applied to my trigger points. This is far superior to a doc poking you with their finger, because no human can exert exactly a precise amount of pressure on someone's trigger point, and there is so much room for error. So this device measured exactly how much pressure it took to reach my pain threshold.

They also had a device that applied heat and cold to my palm, to measure when those stimuli became painful as well. This sounds a lot worse than it was, because I said "ow" at the very first slightest little twinge of pain, so it really wasn't bad at all. Five minutes later I had forgotten all about it.

There is a possibility for more blood tests to be done, looking for possible subsets of fibromyalgia. They are trying to narrow down why the meds might work for some fibromyalgia patients and not for others, as a guide for clinicians in not wasting their time prescribing it for the wrong sub-group of fibro patients. I think I will probably go ahead and have that testing done.

I hope this will help, because my pain has been getting worse and it is wearing me down emotionally. I recently read this article about how chronic pain can harm the brain, which bummed me out.

I usually do my best to ignore my pain and keep going the best I can in spite of it, but I think that strategy is wearing thin. It doesn't work all that well anymore. Its usefulness as a coping strategy is failing.

Every day I wake up and ask the universe to take away my pain. Every day I struggle to understand why I am going through such a miserable experience. Every day I grow more tired of being ''heroic.''

I've spent the past decade being ''heroic'' in the face of unrelenting pain and exhaustion. I think I've paid my dues. I think I've learned some good lessons from the experience.

But I also think it's time I moved on to new lessons --- ones that don't involve daily pain.

So, with any luck, this low-dose naltrexone will make a difference. But even if it doesn't, I will at least have a chance to help in the research of fibromyalgia.



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