Relax86 Posted July 9, 2016 Report Share Posted July 9, 2016 Just wanted you all to know that it is possible to get better. I had dysautonomia probably most of my life following multiple orthopedic surgeries as a child. Had a few POTS flares off and on t/o adult life never knowing a name to the "crashes". Had a terrible time end of 2011-2012 (hope my timeline is correct) - was bedridden for weeks. Barely functioning for the remainder of 2012. I started to get better with movement (not too little, not too much - I know that's vague), midodrine, salt, diet changes, and meditation. I did have a few clues for my POTS. Low blood volume and autoimmunity. Guessing LBV over time caused autoimmunity. In 2013 I had a uterine ablasion and continued to improve. By 2014 and up to today I feel about 90% better, sometimes 95%. I never feel like the old me, but I work, and work out and have a relatively normal life. I can feel my body sliding sometimes and know my triggers - the usual suspects: stress, poor diet, over exertion, lack of sleep, pending storms, humidity. But I know when I was combing this forum ever day looking for some possibility that I would get well occasionally someoone would come back and post that they did; and that really helped. Believing it can happen is important and also being realistic of expectations too. When I was bedridden I felt like if I could just get close to where I am now I would be grateful - and I made it. So I try not to get too ticked off with my remaining 5-10% deficit. Or the fact that I do have certain limitations and things I just won't do to avoid the significan return of POTS. Anyway, hang in there all. Best wishes for recovery Quote Link to comment Share on other sites More sharing options...
songcanary Posted July 9, 2016 Report Share Posted July 9, 2016 Hi Relax, It was very kind of you to post. I was just starting to feel better when you were new. And yes, I did get better also through most of the means you mention. I have low blood volume, too. The most important for me was salt water and yoga, both of which I still do and always will. Chronic stress was killing me. I had to learn how to handle stress; hardest lesson in my life so far and I'm still learning. But I'm better at it now lol. I do take Buspar for anxiety 10 mg once or twice a day depending, but it really helps. I think I posted before that my improvement was unbelievably slow. So all you newbies, don't give up! Relax is right, you can get better. Also, turning your busy life down a notch might seem impossible but it is what saved my life. So now there's two of us with good news! Best wishes to all. Marsha Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 9, 2016 Report Share Posted July 9, 2016 Nice to hear from both of you! So glad you are so improved! Quote Link to comment Share on other sites More sharing options...
Rick Posted July 9, 2016 Report Share Posted July 9, 2016 @Relax86 & @songcanary Thank you for sharing your victory stories. It gives me hope that I one day can share mine here also! I'm so happy for you both! Quote Link to comment Share on other sites More sharing options...
yogini Posted July 10, 2016 Report Share Posted July 10, 2016 This is very great advice. I too am much better/functional. For most of us that have improved, it takes a lot of trial and error, hard work and patience. I remember many people over the years - some extremely sick for years. Many who were sure they'd never get better did. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted July 10, 2016 Report Share Posted July 10, 2016 Relax, thanks for coming back to share how well you are doing. You gave a lot of hope by sharing your story. Like you said, when you were on the forums every day hoping to find something to help you, just a positive story of recovery makes all the difference. I am so happy that your doing so well! Marsha, like Katie said its great to read you are so improved with your treatments too. Glad you came back to tell us how positive things are going. Some become close here on dinet, and the forum serves a purpose while we need it, but then a lot of members get better and the forum no longer serves the purpose it initially did. That is my theory anyway and I am so happy for them if its accurate.Like you Marsha I remember a great deal of the members, especially when I first joined. yogini, happy for you too that you have improved such a great deal. Its nice to read in posts that a treatment or exercise worked or didn't work for you, but your functional now. And Rick, I hope you do share your recovery story here one day! Quote Link to comment Share on other sites More sharing options...
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