I SERIOUSLY wish they would have a breakthrough with this disease. I’m smack dab in the middle of one of the worst flares I’ve had in years. I’ve been in bed for the better part of the past three days, sleeping. Every time I get up, I’m so off balance that I have to use my cane just to keep from falling. It’s gotten to the point that I’m afraid to get up. I’m weak as a kitten, can barely pick up my coffee cup and even the weight of the blankets is too much. I’m too exhausted to even cry.
WILL SOMEONE PLEASE FIND A CURE?? I can’t live like this anymore!
I'm Taking a Nap 
Hope you feel better very soon 🙂
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I suffer from nasty fibromyalgia, too, and I’ve found two things that might be of interest to you–one a treatment, and the other a possible cure (I’m going to bring the latter up with my doctor when I have the energy).
The treatment, as I outline on my blog is Scopolamine. It’s an off-label use of a drug designed to treat nausea. It works by increasing glutamate levels in the brain, and has relieved a large chunk of my symptoms–especially depression, but also pain, GERD, etc.–in under three days. It’s not perfect (and only comes in one dosing), but it’s good, and with some wrangling, Medi-Cal and similar will cover it. Here’s my blog article on it:
The possible cure: treating high blood calcium. Yes, this sounds far-fetched, but check out this symptoms list:
http://www.parathyroid.com/parathyroid-symptoms.htm
High blood calcium has a number of causes, with the most common being parathyroid dysfunction. Essentially, your body should NEVER have high blood calcium, because hormonal feedback loops are supposed to regulate it tightly. Even if you consume a ton of vitamin D (in dairy, supplements, etc), your parathyroid (well, all 4 or them) is more than equipped to handle it, if it’s working right. That being said, I suspect that simply having very low vitamin K2 (specifically, MK4; see Wikipedia) could contribute to an already bad problem, so if you want to test out a “quick” (and relatively cheap) fix, you might try getting a K2 supplement in the form of menaquinone-4/menatetrenone. I just ordered some from drugstore.com, and I’m awaiting the package to test this theory. Just an idea. (This is “at your own risk,” of course.) If this helps, it’ll be a good indication of where my symptoms derive from.
Please note that my blood test came back with high calcium and low Vitamin D–despite taking supplements–which is a hallmark of one kind of parathyroid problem. Low vitamin D in blood work nearly always plays a roll in diagnosis, but it can be because it’s being absorbed too fast, resulting in bones loosing Ca into the blood, or it can be a result of poor intestinal/dietary absorption, resulting on the parathyroid hormone instructing the bones to loose Ca into the blood; it’s complicated.
Since fibromyalgia seems to have all the hallmarks of a “garbage can diagnosis”–that is, the set of symptoms is so disparate that doctors don’t know what to do with it, so they call it “muscle pain” (in Latin, of course)–it’s likely that it’s actually a number of different causes that mimic the same symptoms–much like “female hysteria” was until about the 1950s (dating back centuries).
http://en.wikipedia.org/wiki/Female_hysteria
This means that my fibromyalgia, yours, my neighbors…and so on may all be caused by different things–but it’s likely that there are commonalities in some of these cases. I hope this information helps relieve some of your pain.
Thanks for following my blog! 🙂
–Dane
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It’s funny that you mentioned this. Monday I go to see the doctor that originally diagnosed me 8 years ago. This will be my first time in 5 years seeing her and I’m wondering if this is something we can test my blood for at that meeting. One way to find out. The worst she can say is no, right?
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In the very least, she should approve a blood panel; there’s good reason to do that for anyone suffering from mental health problems–since thyroid, parathyroid, and other hormones can be the cause. (I’m quite dismayed that this isn’t common practice for psychiatrists or even phsyicians.) Having a full set blood tests might be one of those things to insist on, since you can’t rule out most problems/causes without one. Good luck! I hope your doctor’s more reasonable than 5 out of the last 6 I saw! :-p
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Got my blood results back today, so far I’m extremely low on vit D and calcium so she’s put me on supplements. Everything else “looks good” Whatever that means. I want to know NUMBERS ugh
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You’re well within your rights to demand to see your records. I’m pretty sure they legally MUST give them to you upon request (perhaps with a fee applied for copying).
Low calcium, combined with low vitamin D is a sign of one type of parathyroid-related disorder. It can be caused by a variety of things; hopefully those supplements will help alleviate your symptoms. See below:
http://en.wikipedia.org/wiki/Hypocalcaemia
There’s also a lot of information on this stuff at the previous page I linked:
parathyroid.com
Since low calcium/low vitamin D can be caused by a certain kind of tumor, make sure your doctor looks into it, in the event that these supplements don’t work.
I hope you get better soon.
–Dane
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I too suffer from the big F. I have been living with it since 1987. Of course at that time it was all in my head. Good Luck and I hope you are feeling better.
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What, they didn’t call it “female hysteria” back then? How downright modern of them to consider it “all in your head”…sorry you had to put up with that. :-p One of these days, I’m sure the medical professionals will figure it out–hopefully soon.
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Amazing, eh? I was not diagnosed until 2005. That was a long time to live with pain all in my head. Crazy doctors.
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