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Welcome. This community has been created for people that are suffering
and surviving fibromyalgia. All are welcome. That means patients,
spouse/significant others, medical professionals, and people wanting to learn
more. This is for sharing our daily struggles and pain and good days.
Live Journal
Fibromyalgia Community
ants in my pants!
so the Savella is working great! I was able to get out of bed this morning (our "bed" is a mattress on the floor) without any help or soreness. Im a little more tired, generally. Not CFS tired, just regular tired. Which is a weird feeling to be "normal" tired! I think that might have to do with changing seratonin levels. but... NOW WHAT?! I am SO FUCKING BORED!!! I'm freakishly pale so cant go outside during full-sun hours (10am - 4pm). Im broke, so cant do anything that involves money. I've read 10 books in 2 months. My crappy, guilty pleasure, court shows are all in repeats, plus we only get 8 channels and I refuse to watch soap operas. Its awesome & fantastic that I am feeling good! But, until I get a job, I am bored out of my gourd!
I have no friends that have fibromyalgia and I'm sure as all of you know it's so easy to feel alone in this. I just need some outside support I think from people who know what I am going through.
Eating disorders and fibromyalgia.
So I struggled with anorexia really bad when I was like 16/17 in 2002. The following year, my doctor said I was "recovered" but I still have anorexic thoughts. Thus, it's hard for me to want to continuously take medication that is used to treat fibro b/c a lot of them have side effects of weight gain. I actually had started to lose a few pounds when I first became ill. Then I blew up once I started to take Elavil/amitriptyline. I've been taking it off and on since 2008. I always stop when I feel like I've gotten too big. I hate how it makes me constantly hungry. I feel like I'm eating for two or three. And it doesn't help THAT much with the pain so I feel it's not worth it to get fat over minimal effects.
Are there any meds out there that DON'T cause weight gain? I hate to admit it but I'd rather be in pain than to let myself get huge. Granted, I've never been more than a few pounds overweight (if that) in my life but I still worry. And I can't really exercise to lose the weight b/c I'm in pain. And the meds I was on made me so lethargic that I wouldn't even want to work out. I've been taking iron and magnesium pills on the regular for the past week or so but I think they are making me nauseous. Ugh.
I was on Tramadol for awhile and that helped with the pain well enough and was a good appetite suppressant but it had too many side effects that I didn't like. Oh well.
to live is to suffer
This may seem like an off topic question, but i promise it's not.
I'm taking a religious studies class at my college and we just completed the sections on Hinduism and Buddhism. I wrote a 6 page paper on the phrase to live is to suffer. I had to relate it to Buddhism, Hinduism and my own life. Reflecting on the paper, I never brought up my Fibro, which I often refer to as a disability. This paper showed me that I do not consider what I deal with in terms of fibro to be my greatest suffering in life.
I was wondering if anyone with Fibro practiced Hinduism or Buddhism and had a view on how their Fibro plays into the suffering thing.
Kind of a cool moment of perspective for me as my fibro makes it very difficult to get much of anything done.
better living through modern chemistry
So, Im on day 12 of Savella titration. OMG!!!! Last night I walked "downtown" with my husband. No cane! Keeping stride with my husband! There AND BACK! I woke a little tired today, but it feels like "regular tired". My pain has gone from a 7 to a 3. I love modern chemistry! So far, the only side effects Im finding is nausea when I dont take it with some food. I can handle that!
On another note: when they say "do not drink while on Savella", listen to them! I decided to go light and have a Bud Lime draft. I drank maybe a 3rd of it and had to stop! My vision started narrowing, I was dizzy, and just didnt feel "right". That sucks!!! Not that Im an alcoholic, but I do like to have a vodka/tonic or glass of wine on occasion. Now I cant have ANY alcohol! Hubby loves karaoke, so much so that our wedding DJ was a karaoke DJ, too. It sucks to go to a bar with him for karaoke and know that I cant have ONE beer or vodka/tonic. It makes for a long night at karaoke without the alcohol to muffle all those terrible singers!
Supplements - Anyone Tried?
I ran across a product called Nerve Shield at the nutrition store this week and it looked interesting enough to pick it up. The lady who runs the store is very knowledgeable and also suffers from CFS so she's been very helpful in the past. I asked about this product and she couldn't really tell me much as it's new and she hadn't gotten any feedback. So I thought I'd see if anyone here had tried it. I'm giving it a try and I will update later if I feel like I've had any improvement from it.
Nerve Shield from Redd Remedies
Another one that I'm trying is called Protandim which is an anti-oxidant from what I've read. My brother brought me a bottle in hopes it would help me. I've been taking it for almost 2 weeks and can't really say I've seen any effects from it, but I'll finish the bottle and see what happens.
So far the only supplement I've really seen any great improvement from is Magnesium. I take it at night and also take an Epsom salt bath every night and I can definitely tell a difference from having been doing this for a month or so. As of today I'm actually upping my Magnesium by adding more in the morning (this ups it to the recommended dosage on the bottle). Since it can upset your stomach if you aren't used to it (and it did initially when I took it at night) I started with just the one pill daily.
Whenever I run into a brick wall of I Can't Do That, I try to find a way to do it. Especially when it is something I love to do. My current challenge is how to get to, get around and enjoy a geek convention. I was barely able to get to one day of Emerald City Comic Con, and absolutely none of Sakura Con this year. I keep looking at all the media about Comic Con and thinking I can't go. At least, I can't go and do what I want to do - run around like a crazy person all day, hang out all night, and subsist on caffeine for four days.
My question is this: Are any of you geeks, are any of you geeks who frequent cons, and if so how do you manage it?
If you could also recommend online communities (on LJ or off) that focus on women geeks, disabled geeks or disabled women geeks that would be really helpful as well.
Doctor rant time
This may be silly, but I figure that if anybody can understand why I'm upset it may be you guys.
Today I called my doctor's office to set up an appointment (for insurance's sake) to get my birth control refilled.
I was informed that effective today, my doctor no longer works there. She will be in tomorrow to finish some paperwork, but she will not be seeing patients. I asked if they could tell me where she was moving to and I was told that they cannot, because they do not know.
I received no notification whether through mail, phone or otherwise. I don't know whether to be angry, confused, or frustrated. I would assume that were a doctor to move elsewhere, they would like their clientele to know.
I am desperately trying to find out where she is moving to, but nobody will help me. This leads me to believe that she is not leaving of her own choice but that is merely wild speculation because of all of the doctors in this crappy town, she is the ONLY one I haven't heard anything bad about. What ever.
What I'm really upset about is I liked her. She listened to me and she was sympathetic to my problems. It is hard enough for me to find a doctor that I like, let alone a doctor that will take me seriously regarding my pain. Not only that, but I need to find a new gyno too. Like, tomorrow. Ugh.
My boyfriend HATES doctors. Yet my frustration and worry in finding a new doctor that will not just roll their eyes and throw pills at me seems to be lost on him. I figured of all people, he would understand but "a doctor is a doctor is a doctor," according to him. Maybe I'm just being completely irrational, I don't know.
I have 2 months of refills on my medications before I need to find another doctor. I guess it's time to start slogging through lists of doctors to find someone who sucks less than the others. :(
I'm sorry for the rant, but I'm a talker. Talking helps me sort out my feelings, and when everybody I know just doesn't understand...
Savella question
Okay I have a question for those of you on Savella. Have you noticed a change in your attention span or memory? I have a friend who said both were affected when she was on Savella, and when I asked my doctor about it he said that he hasn't had anyone complain about those side effects, but that he wouldn't be surprised.
I ask because within the past couple of months my memory and attention span have just completely crashed. I forget things constantly, and I can't even stay focused on things I want to do, let alone things I need to do like y'know... work.
Also, we finally have a Savella tag! Thank you ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) heido!
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