gertie Posted December 15, 2013 Report Share Posted December 15, 2013 When I read the post on here I can only sit & cry. The desperation & symptoms everyone feels is so familiar to me. I have had this so many years & I keep thinking it will just go away but of course it hasn't. I have no dr that under- stands. My DH asked me to explain to him how I felt & the only word I could think of was "discombobulated" which is probably not a word. I could not begin to explain to someone that hasn't experienced this. The holidays are upon us & here I sit doing nothing. Unable to function because I feel dizzy & off balance like I might pass out at any time, just lifeless. Migraine yesterday & felt like I was about to have a partial seizure. Are these Dysaut. symptoms or am I just making every symptom I have part of this illness? Thanks for all your support. Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 15, 2013 Report Share Posted December 15, 2013 Alicia, I could not know what was part of your illness or not.I do hate that you are feeling this way and I can relate. It sounds like you need to do as I do. Get in front of a good subspecialist and get the complete work up.I admit that I have gotten down lately. It all was getting in my head, and I seamed on a downward spiral. I haven't gotten any better, but I feel better.Keep your head up. We are going to get a grip on this. Quote Link to comment Share on other sites More sharing options...
corina Posted December 16, 2013 Report Share Posted December 16, 2013 Sending good wishes to all of you who need them. Taking things day by day and not let the holiday stress get you (I know easier said than done!) might help you! Quote Link to comment Share on other sites More sharing options...
gertie Posted December 16, 2013 Author Report Share Posted December 16, 2013 Thanks for replies. Quote Link to comment Share on other sites More sharing options...
Dustbunni Posted December 16, 2013 Report Share Posted December 16, 2013 I've used "discombobulated" to explain to my husband how I felt before. I remember being very proud that I could even remember the word, much less say it with how bad I felt. (Haha. We are smarts! ) Usually when he asked around that time I'd just moan and say, "I'm dying." Sadly, that's how I felt. In fact, just yesterday my husband commented that I hadn't replied that way in quite a while. I may not always feel great, but I don't feel like I should be planning for "the end" either. Personally, my dysautonomia is secondary to a probable hereditary condition and some of my symptoms cannot be attributed to just dysautonomia. However, the dysautonomia does affect those symptoms. For example, my muscle weakness and severe heart arrhythmias are probably caused from genetic issues, but they are exacerbated when the dysautonomia is flaring. When the dysautonomia is more controlled, it takes longer for the weakness to become fully disabling and the arrhythmias are less frequent and severe. It can be very challenging to sort through symptoms and say XYZ is caused by this or that. I look at is as multiple conditions at play and both can affect the severity of the other. "Tomorrow will be better" is like my personal mantra on bad days. I hope tomorrow is a better day for you, Alicia. Quote Link to comment Share on other sites More sharing options...
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