May is CFS/FM Awareness Month!
Showing posts with label FM Drugs. Show all posts
Showing posts with label FM Drugs. Show all posts
Monday, May 2, 2011
Friday, September 11, 2009
Fun with weird symptoms...
Well, I guess they would actually fit into the broad spectrum of Dysautonomia. I haven't checked my blood pressure today, mostly because I didn't want to see how fast my heartrate was, but I'd be willing to bet it's pretty darn low, and dropping steadily the more I stay upright.
I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.
But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.
This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.
I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.
This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.
It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.
I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...
Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!
I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.
But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.
This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.
I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.
This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.
It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.
I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...
Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!
Tuesday, December 9, 2008
Milnacipran Shows Success in Treating FM?
Milnacipran is the name of a new drug being tested for Fibromyalgia. It is actually an anti-depressant, of the SSNRI (Selective Seretonin Norepinephrine Reuptake Inhibitor) type that has been available in Austria for a decade.
According to the study at the link below, it has shown success in treating symptoms of FM, as well as Lupus.
After reading the study however, it occurs to me that this is just another Cymbalta. This may sound a little jaded, but it seems to me, that the drug companies are just looking for medications to throw at FM,so that they can make money off the millions of people who suffer from it. This isn't a cure...it may help some,especially those suffering with depression as well as FM, but not all, just as Cymbalta did. (Note that Cymbalta was recently NOT approved for treating FM in Europe.) All it does is tinker with a couple of neurotransmitters, and although these have been found to be off in FM, they are not the cause, just two more of the myriad of symptoms.
Sure, it might help people with FM, improving quality of life by improving mood and outlook, and having a slight effect on pain, but we have plenty of drugs like that already; we don't call THOSE "FM Drugs"... It just makes me wonder if this title should be given to any drug that doesn't help everyone, or nearly everyone who suffers from this disease. (Insulin wouldn't be considered a diabetes drug if it only helped some people who had diabetes, right?) To be precise, it does say "for the Management of Fibromyalgia" but no doubt it will be touted as a drug for treating FM. I can see the commercials now...
If it helps some people, that's great, but I kind of wish they would focus more on finding the cause, or at the very least a surefire diagnostic test.
Just my two cents.
Here's a link to the study: Positive-Results-of-Phase-III-Study-of-Milnacipran-for-the-Management-of-Fibromyalgia-3573-1/
*Correction: I actually got the Lupus link from this site, under Experimental Uses:http://en.wikipedia.org/wiki/Milnacipran
According to the study at the link below, it has shown success in treating symptoms of FM, as well as Lupus.
After reading the study however, it occurs to me that this is just another Cymbalta. This may sound a little jaded, but it seems to me, that the drug companies are just looking for medications to throw at FM,so that they can make money off the millions of people who suffer from it. This isn't a cure...it may help some,especially those suffering with depression as well as FM, but not all, just as Cymbalta did. (Note that Cymbalta was recently NOT approved for treating FM in Europe.) All it does is tinker with a couple of neurotransmitters, and although these have been found to be off in FM, they are not the cause, just two more of the myriad of symptoms.
Sure, it might help people with FM, improving quality of life by improving mood and outlook, and having a slight effect on pain, but we have plenty of drugs like that already; we don't call THOSE "FM Drugs"... It just makes me wonder if this title should be given to any drug that doesn't help everyone, or nearly everyone who suffers from this disease. (Insulin wouldn't be considered a diabetes drug if it only helped some people who had diabetes, right?) To be precise, it does say "for the Management of Fibromyalgia" but no doubt it will be touted as a drug for treating FM. I can see the commercials now...
If it helps some people, that's great, but I kind of wish they would focus more on finding the cause, or at the very least a surefire diagnostic test.
Just my two cents.
Here's a link to the study: Positive-Results-of-Phase-III-Study-of-Milnacipran-for-the-Management-of-Fibromyalgia-3573-1/
*Correction: I actually got the Lupus link from this site, under Experimental Uses:http://en.wikipedia.org/wiki/Milnacipran
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