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Back again...

May 02, 2011 - 2 comments

Back again. I'm not sure for how long this time. Hopefully for a while. The fatigue has been... crushing, to say the least. And an odd issue began to happen, making things worse. My joints started all hurting like hell. From neck to toes, every joint was stiff and very sore. Funny thing is... this ONLY got worse with sunlight. My joints could outright stop hurting and then if I was out in the sun for a few minutes, that night, I'd barely be able to move. This would last days and then start to calm... until the next sun exposure. The doctors aren't exactly sure what's going on here. I don't know either. I got asked for another ANA test. Who knows if that'll bring answers. I NEED answers. I don't care what the answer is... so long as it's an answer!

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by anxious1470, May 02, 2011
my sis has the same issue and the doc's ran tests for MS, devics disease, etc. She had MRI's of the brain and there was one lesion indicating (according to doc), MS. She has done her own research and chose not to take the MS drugs because the doc's cannot confirm. The sunlight kills her as you mentioned. Some days she says to me "I have the spider web on my face" and that is exactly how it feels to her, a spider web that she cannot get off her face. That would drive me nuts. She continues to eat healthy and walk two miles per day in the early morning on her break at work.
I don't have an answer, neither does she except that she has accepted that if this is the beginning of MS then she is going to fight it as long as she can. The fatigue during her episodes nearly brings her down but she never misses work. She feels that if she gives in, that it will consume her. She will simply crash when she gets home and sleep until the next morning. I hate it for her and you. This is all I know. (oh and she also had the spinal tap to look for MS and that turned out negative for lesions)

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by bluewind95, May 03, 2011
Wow. I feel for your sister. Really, I do. And at the same time, she's amazing, holding to her job like that. I'm having bad issues with work at the moment because of the horrible fatigue, and while I have not missed work outright because of it (I have for other reasons, though), I've missed deadlines and other such things, and I am pretty sure they want me to leave work of my own accord. ... Which I'll actually have to, soon enough.

I'm still trying to find a diagnosis... I just want to know what's wrong so I can make an informed decision about what to do. I can't battle an invisible enemy, after all.

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