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Bigskyfam

Newest members-September 11th-24th,2016

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Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

jadgr

Jan52

Marcia

Gatarn

 im4god2010

hwilson328

Ccrew

stephanie.m

Andante

Ish

Paul

ItsaBeautifulDay

Stefania

DarkLavender

JoRo

blair1026

Sarah D

lucy(lu)

Sewingwithspoons

missy

 

Although I've only been here for two years, I've learned a lot, not only about my condition but of the determination, caring and knowledgable nature of this community. Support beyond belief!

This forum serves folks from around the world in different time zones. It's great knowing I'm not the only one awake when my family is sleeping and I can't. I'm sure by evening you will see quite a few comments under this post with people saying hello. 

In the meantime if you have any questions let us know. Visit our DINET page and Facebook page as well.

Bigskyfam

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Welcome everyone, since I joined, I have found the people here to be caring, funny, knowledgable, non-judgemental, and just all around great human beings. Glad you joined, see you on the forum

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Great to see that you've all joined our community! Welcome :) 

10 hours ago, Roxy said:

Welcome everyone, since I joined, I have found the people here to be caring, funny, knowledgable, non-judgemental, and just all around great human beings. Glad you joined, see you on the forum

Roxy - Thank you for sharing your experiences with DINET, it's so nice to hear your feedback!

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I too am a new member since Sept 21 although not listed above. Totally fine, apology accepted ! I was diagnosed with POTS last year, July 2015. I am developing new symptoms and had no idea that they might even have been related. Thought I was going mad to be honest. Since April this year, I can't seem to eat without having severe bloating. The fatigue is awful at the moment. I am 47 years old and feel like I'm 90. This morning, I walked to the kitchen and made something to eat and I feel exhausted. I do have a question for you all. I checked my heart rate and it seemed totally fine. It was actually 78 when sitting. My resting hr has been 125 and varies . Tilt Table test last year confirmed diagnosis when it shot to 152.

My question is this: Even when the monitor shows a relatively low hr, do any of you feel exhausted? I feel like a complete hypochondriac lately. No one can see it as I'm told all the time "But you look great"... so I isolate. I feel like I'm digging deep for air, like I'm not getting enough.  Really trying to learn as much as possible about my condition as I have discovered that just because you are a doctor does not mean you are a good doctor ! 

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Welcome Rgaff!

I do completely understand what you mean about being 47 and feeling 90.  Many of us do!

Yes I did continue to experience disabling symptoms even after my bp and hr stabilized (due to meds).

Air hunger is a common symptom.

Hope you are able to find treatments that work for you and you feel better soon.  Most people do improve with time.

BTW I think your display name did not get listed b/c you changed it after you logged in.

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On 9/29/2016 at 0:06 PM, Rgaff said:

I have discovered that just because you are a doctor does not mean you are a good doctor ! 

Preach it, Rgaff!!!!  I totally agree :-)

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