angelloz Posted April 28, 2016 Report Share Posted April 28, 2016 I was diagnosed in 2010. Mayo showed low blood volume, reduced sweating, autonomic neuropathy. Then by 2014 with my new normal I felt pretty stable. About five months ago I began to feel worse again,more weight loss with a few new symptoms. One was stomach pain ( I have had a CT scan ), another is aching all over like I have the flu. Yesterday, I felt terrible, couldn't stand low BP even sitting and only 13 point difference between high and low number, nausea, chest pain. Called Cardiologist and was told to go to the ER. After fluids BP was some better. Sent me home and had me make an appt with endocrine and said to start retesting some things I had checked out at the beginning. I have a couple of questions. Has anyone else had a severe flare after a fairly long stable period? If so, did you manage to recover some again? A week ago I went through some rather difficult stress and I haven't really slept well since. At the beginning of my illness I couldn't sleep at all. Also, more body pain isn't helping. Lastly, I need a "hang in there". Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 29, 2016 Report Share Posted April 29, 2016 Hi, angelloz, Definitely hang in there. I was not great but stable for a couple years. Last year I started a major backslide. I am also in the process of revisiting things like infectious disease and rheumatology. In the meantime, my geneticist (desperate to find some answers for me) order bloodwork to test a long list of hormones...some previously tested, others for the first time. I received the lab report yesterday and it appears I'm all screwed up hormonally. I was shocked to see the results! So, the moral of my story (for you and me) is don't give up! You never know when the answers will appear in your mailbox! Katie Quote Link to comment Share on other sites More sharing options...
dancer65 Posted April 29, 2016 Report Share Posted April 29, 2016 Hi definatly hang in there? I have had symptons since 21 but only diagnoised less than two years ago I have had some really bad times mainly set off by surgery my low bp causing major problems and then I have had some good times. I always say there is hope I seem to say in my head a lot tomorrow will a better day , actually I have had two so far this week best wishes Quote Link to comment Share on other sites More sharing options...
angelloz Posted April 29, 2016 Author Report Share Posted April 29, 2016 Thanks so much! One specialist I have never seen is a geneticist. Maybe I should give that a go too! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 29, 2016 Report Share Posted April 29, 2016 Hi Angelloz, I always feel terrible when my pulse pressure's are close together too -- sometimes before I take in my fluids for the day I'll have a 10-15 point difference btw the top and bottom # too. I'm relieved for you that IV fluids have helped. Like the others have said, hang in there and don't lose hope. I've made a lot of progress with my POTS but still have periods where I take steps back, with no rhyme or reason to it. I don't get it, I don't change my medication routines, exercise routines, fluid intake, and yet I can have a flair up. I remind myself though that I'm doing the best I can for now and to think about one day at a time. Take care of yourself Sarah Quote Link to comment Share on other sites More sharing options...
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