micheller Posted November 3, 2011 Report Share Posted November 3, 2011 How do you know when you are having a flare up? I've seen it mentioned a lot but I'm not sure how to tell. I mainly have the same symptoms daily, worse if I'm more active. I know when my reflux flares up. But I'm curious about this. Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 3, 2011 Report Share Posted November 3, 2011 Personally, when I'm not in a flare, (I always have some low-grade symptoms and migraines) I can work part time, do volunteer activities, exercise moderately and do basic household chores. When I'm in a flare, I can barely stagger thru my house. I have a huge swing from "not flare" to "flare" with my symptoms. That said, even on my best days, I have had to modify how I do things and how much I can do compared to how I was before this struck. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted November 3, 2011 Report Share Posted November 3, 2011 I have low grade fevers when I am in a flare, a lot more dizziness, and can basically do nothing. If I am not flared up, I just have more of my typical symptoms and am able to do a lot more. Quote Link to comment Share on other sites More sharing options...
lissy Posted November 3, 2011 Report Share Posted November 3, 2011 When I am in a relapse/flare I am very much able to tell! I start having mysterious problems and they can lasts for days then they will disappear and something else will appear and its ongoing for months at a time usually 3-5 months for me.Then it seems like I am recovering for months almost 75% better and stay at that intill another relapse.The longest "remission time I have had was about 5 months. The longest relapse was about a year 1/2 that was in the beginning. I believe I have suffered with this since I was a teen or even before but it wasn't severe until having children. I have documentation of POTS type vitals from year 2000 so maybe mine is autoimmune...? Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 5, 2011 Report Share Posted November 5, 2011 I too can tell when I'm having a flare up. I typically end up sleeping (like not able to get out of bed at all) for easily 16 or more hours. I get a lot more lightheaded (walking is difficult and showering is nearly impossible), I get very emotional and anxious, I tend to be more antisocial because I feel so awful (I almost get a little mean to others), my double vision worsens (to the point where my glasses don't help) and I get too nauseous to even eat. On good days I may be nauseated, a little lightheaded, and need my glasses, but my mood is always stable and I'm able to use my recumbent bicycle and work part time. Also, I tend to sleep about 8 to 10 hours. It basically is some of my normal symptoms magnified by like a thousand with added mood swings. Quote Link to comment Share on other sites More sharing options...
micheller Posted November 5, 2011 Author Report Share Posted November 5, 2011 I don't get more than 5 hours of sleep. My nausea is so bad I end up staying awake until I literally crash because laying down/reclining makes it worse. I'm sure lack of sleep doesn't help my symptoms. I think I'm going to keep a journal about my symptoms, the severity, and how much activity I did to see if there's a trend somewhere. Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 5, 2011 Report Share Posted November 5, 2011 I use medhelp.com to track my symptoms. They have a disautonomia tracker as well as a sleep tracker. It's not a perfect tracker, some of my medications are missing on the treatment section, but overall it's a good tool they even have stockings and diet change options. This is the dysautonomia link, you can get to the others from this page as well, they have quite a few other trackers. http://www.medhelp.org/user_trackers/gallery/dysautonomia Quote Link to comment Share on other sites More sharing options...
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