
Reply: Good morning Fibro Community
Oh, my day is going to be miserable, but after yesterday, I don't even care. I cleaned all...
Posted by Kinkatia
Oh, my day is going to be miserable, but after yesterday, I don't even care. I cleaned all the things (well, nearly all the things) and spent a few hours at a carnival with my boyfriend, who I don't see often (he lives far away). I spent all week saving up the energy for that, and was blessed to be nearly pain-free. I think the price I'm paying for taking full advantage of how well I was feeling (and then some) is well worth it. Sometimes you've just gotta be stupid and do more than you should, just because it'll be the most fun you've had in a long time. 
And now I get to spend the day cuddling and taking care of my new goldfish, Yakko, Wakko and Dot.View Thread
Posted byKinkatia

And now I get to spend the day cuddling and taking care of my new goldfish, Yakko, Wakko and Dot.View Thread
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Reply: paranoid over losing words
According to an article I read (and then lost somewhere in the internet - I really must...
Posted by Kinkatia
According to an article I read (and then lost somewhere in the internet - I really must make notes of these things) it's not so much gray matter loss as shrinkage. Kinda like a sponge gets smaller when it dries out? It's all still there, just. . . smaller. I don't really know what that means, but it's reassuring to know that I'm not actually losing any gray matter.
And I lose words all the time. It's frustrating because words have always been my thing. I used to be a walking dictionary, and now I have trouble putting together sentences. But it's just the fog, and I've noticed I lose fewer words when I'm less foggy.View Thread
Posted byKinkatia
And I lose words all the time. It's frustrating because words have always been my thing. I used to be a walking dictionary, and now I have trouble putting together sentences. But it's just the fog, and I've noticed I lose fewer words when I'm less foggy.View Thread
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Reply: Is fibromyalgia an auto- immune disease?
I've always been told that it's not auto-immune. Even the rheumatologist who diagnosed me...
Posted by Kinkatia
I've always been told that it's not auto-immune. Even the rheumatologist who diagnosed me said as much. A lot of the symptoms are like those of auto-immune diseases like lupus, but that doesn't necessarily put fibromyalgia in the same category. I mean, the flu also shares a lot of the same symptoms.View Thread
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Reply: Anyone have EYE PROBLEMS?
I don't think fibro can make any of those worse, but I'm no expert, so I may be wrong. I...
Posted by Kinkatia
I don't think fibro can make any of those worse, but I'm no expert, so I may be wrong.
I do know, however, that both I and my mother have this annoying problem where our eyesight changes slightly when we're in a flare, and our eyes are really sensitive, so a prescription that's off just a smidge causes awful headaches.
As for night vision, my mother's has always been terrible, and mine is fantastic, so our combined experiences don't really point towards fibro having anything to do with it.
Hope you destress and are able to get to sleep soon!View Thread
Posted byKinkatia
I do know, however, that both I and my mother have this annoying problem where our eyesight changes slightly when we're in a flare, and our eyes are really sensitive, so a prescription that's off just a smidge causes awful headaches.

As for night vision, my mother's has always been terrible, and mine is fantastic, so our combined experiences don't really point towards fibro having anything to do with it.
Hope you destress and are able to get to sleep soon!View Thread
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Reply: The best of friends
Yeah, it takes time. It's been a little over a year since my diagnosis, and I realized...
Posted by Kinkatia
Yeah, it takes time. It's been a little over a year since my diagnosis, and I realized that all the lifestyle changes I was making to manage my symptoms were going to effect the way I spend time with my friends, so I thought it was about time I let them all know. It also saved me the trouble of having to explain myself over and over again, which I will admit was the more encouraging factor.
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The best of friends
So I got up the courage this week to write up a letter to my inner circle of friends, and...
Posted by Kinkatia
So I got up the courage this week to write up a letter to my inner circle of friends, and then maintained enough courage to send it to them. It was pretty much a letter discussing my diagnosis, explaining a bit about fibromyalgia and how it affects my day to day life, assuring them that I'm always going to be there for them, even when I'm not feeling well, and asking for their support.
And I have to say, I have the best of friends. The responses ranged from telling me that I am made of win, apologizing for not keeping in touch and offering to keep me in their prayers, to thanking me for helping them to understand fibromyalgia a little bit more and telling me that they admire me and cherish our friendship.
They've been nothing but supportive and wonderful and made me cry happy tears. I really am blessed to have a group of friends so wonderful as this. It makes me think that maybe things are gonna be a lot less frustrating than I'd anticipated.
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Posted byKinkatia
And I have to say, I have the best of friends. The responses ranged from telling me that I am made of win, apologizing for not keeping in touch and offering to keep me in their prayers, to thanking me for helping them to understand fibromyalgia a little bit more and telling me that they admire me and cherish our friendship.
They've been nothing but supportive and wonderful and made me cry happy tears. I really am blessed to have a group of friends so wonderful as this. It makes me think that maybe things are gonna be a lot less frustrating than I'd anticipated.
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Reply: What's on Your Bucket List for 2011?
I wish my goals for the rest of the year included something fun. I'm just aiming to...
Posted by Kinkatia
I wish my goals for the rest of the year included something fun. I'm just aiming to finally get my driver's license, get some measure of stamina and physical fitness back, and survive an 18 credit courseload in the fall on top of working on my senior thesis.
Well, maybe one fun one. Potentially. I would like to take up busking when I head back to Chicago for school. I think it'd be fun.
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Posted byKinkatia
Well, maybe one fun one. Potentially. I would like to take up busking when I head back to Chicago for school. I think it'd be fun.
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Reply: personal weakness
I was actually relieved to get my diagnosis, since the other most likely thing was lupus. ...
Posted by Kinkatia
I was actually relieved to get my diagnosis, since the other most likely thing was lupus.
As much as I'd like to have something that was more well-known and better understood, I wouldn't trade the fibro for anything (other than not having it, but hey, wouldn't we all?). If I'm going to have something chronic and difficult to deal with, I'd rather it be something non-degenerative, which will force me to take care of myself and make me appreciate the little things in life more.
And that's what having fibromyalgia has done for me. Yes, I occasionally deal with bouts of depression because of it. But I get through them and rise above it and thrive, not because I'm not suffering, but because I can. Despite everything, I can. And that's important to me. I'm learning to manage my symptoms, and the better I get at it, the more I can do.I have a million silly little things I want to do, and there's still the chance to go out there and do them. That is important to me.
Fibromyalgia may be awful at best, but it hasn't taken away my freedom, and I can keep it from getting in the way of simply being me.View Thread
Posted byKinkatia
As much as I'd like to have something that was more well-known and better understood, I wouldn't trade the fibro for anything (other than not having it, but hey, wouldn't we all?). If I'm going to have something chronic and difficult to deal with, I'd rather it be something non-degenerative, which will force me to take care of myself and make me appreciate the little things in life more.
And that's what having fibromyalgia has done for me. Yes, I occasionally deal with bouts of depression because of it. But I get through them and rise above it and thrive, not because I'm not suffering, but because I can. Despite everything, I can. And that's important to me. I'm learning to manage my symptoms, and the better I get at it, the more I can do.I have a million silly little things I want to do, and there's still the chance to go out there and do them. That is important to me.
Fibromyalgia may be awful at best, but it hasn't taken away my freedom, and I can keep it from getting in the way of simply being me.View Thread
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Reply: Just found out I have Fibromyalgia
Congratulations! Your future is going to be an adventure! It's not one that you...
Posted by Kinkatia
Congratulations! Your future is going to be an adventure! It's not one that you volunteered for, but that doesn't make it any less exciting.
That's how I look at it, anyway. It makes life seem a lot cheerier.
I suggest having a look around here, trying to find a primary care doctor who will work with you to find the right solutions to manage your symptoms, and going to the library and reading all the books they have on fibromyalgia. And that's just the start.
The thing about fibromyalgia is that it effects everyone differently. So you get to be your own doctor. Learn to listen to your body, figure out what makes your symptoms worse, what helps, and be prepared to make big lifestyle changes. Talk to people to get ideas for what you can try. Some people might suggest medications that they find help them, whereas someone like me will point you in the direction of dietary changes and herbal remedies.
But don't worry. Like I said, it's an adventure, but it's not one you're having alone. We're all in it with you, after all, even if our maps are different than yours.
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Posted byKinkatia
That's how I look at it, anyway. It makes life seem a lot cheerier.
I suggest having a look around here, trying to find a primary care doctor who will work with you to find the right solutions to manage your symptoms, and going to the library and reading all the books they have on fibromyalgia. And that's just the start.
The thing about fibromyalgia is that it effects everyone differently. So you get to be your own doctor. Learn to listen to your body, figure out what makes your symptoms worse, what helps, and be prepared to make big lifestyle changes. Talk to people to get ideas for what you can try. Some people might suggest medications that they find help them, whereas someone like me will point you in the direction of dietary changes and herbal remedies.
But don't worry. Like I said, it's an adventure, but it's not one you're having alone. We're all in it with you, after all, even if our maps are different than yours.
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Reply: Terrified!!!
I had some severe memory problems that lasted most of the last semester and greatly...
Posted by Kinkatia
I had some severe memory problems that lasted most of the last semester and greatly impacted my studies. I'm pretty sure I was at the point where I was experiencing legitimate cognitive dysfunction. It started out with forgetting I had someplace to be and then running late. I am never late, I loathe being late, and it was distressing. Then I got more and more forgetful as the weeks passed. Sometimes I'd forget what I was saying mid-sentence. I started having trouble remembering how to spell things, where I put my shoes (while I was living in a tiny dorm room, at that), and forgetting what someone had said to me minutes after they said it. For two weeks right in the middle of it, it was so bad that I can't remember anything I did. Those two weeks happened, but they are gone. Poof. Not there. It was really, really scary, especially since Alzheimer's does run in my family, and even though I'm still young, I do have this huge fear of losing my mind that way.
But it got better. I tackled it head-on, found out what was causing the memory problems. For me, it was caffeine. I think. It could have just been chocolate in general, since that was where I got all my caffeine, but within days of cutting it completely from my diet, I found my memory getting better. I was also sleeping better, which sped along the process, I'm sure.
Since then, I've been keeping a daily health and self-care journal, and noting my forgetfulness. It definitely comes and goes, some days worse than others. Thankfully nothing so bad as this past semester.
It's definitely scary, and I think it would be a good idea to talk to your husband about it. I've found talking to someone always helps me deal with the scary stuff. Especially when I'm having memory problems that are getting in the way of trying to find a solution. I talked to my mom (a fellow fibromite) about it when my memory got bad, and she knew exactly what I was going through because it had happened to her once before, and knowing that really helped me be less scared.
I do hope your memory improves soon! Until then, sticky notes. Sticky notes everywhere. ((gentle hugs))View Thread
Posted byKinkatia
But it got better. I tackled it head-on, found out what was causing the memory problems. For me, it was caffeine. I think. It could have just been chocolate in general, since that was where I got all my caffeine, but within days of cutting it completely from my diet, I found my memory getting better. I was also sleeping better, which sped along the process, I'm sure.
Since then, I've been keeping a daily health and self-care journal, and noting my forgetfulness. It definitely comes and goes, some days worse than others. Thankfully nothing so bad as this past semester.
It's definitely scary, and I think it would be a good idea to talk to your husband about it. I've found talking to someone always helps me deal with the scary stuff. Especially when I'm having memory problems that are getting in the way of trying to find a solution. I talked to my mom (a fellow fibromite) about it when my memory got bad, and she knew exactly what I was going through because it had happened to her once before, and knowing that really helped me be less scared.
I do hope your memory improves soon! Until then, sticky notes. Sticky notes everywhere. ((gentle hugs))View Thread
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