Big Guy

Thanks for all the good info. Good to hear from another guy. I will definitely keep the testosterone issue in mind during my next visit to the Dr. I've had a my Vit D checked and of course it is low like most people I think. I have been taking a mega dose for about two weeks, so hopefully I get that kicked soon. I appreciate the good words. As I'm sure you know, it helps to hear from the people that know what I'm experiencing. Have a great week.

Thanks Mountain Girl. Your answer helps a lot. Basically what I expected anyway but didn't want to accept. I have a good leave plan at my job. I thought about extended leave but have been delaying that. Thank you again. You've been a big help.

I hear the importance of hydration for dysautonomiacs due to syncope. But does fluids help with fatigue and pain symptoms? I've been an athlete all my life so it is normal for me to get proper rest when I experience extreme fatigue. However, it is also my nature to push through tough moments that will not create long or short-term down time (for whatever reason). The analogy that I have read is that as a person with dysautonomia, I have a finite amount of energy each week and I should distribute it wisely. This has been my attempt, although I'm just not satisfied with that. Does anyone have any other answers to dealing with fatigue (like everyone, I experience near debilitating fatigue and miss work because of it) and pain? I have always been the person that never calls off work for the day. Unless I'm on vacation, my coworkers know that when they come to work I'll be there. However, not lately and it is the source of a lot of frustration (to say the least). Thanks in advance.

Thank you so much for the good words. I will stay connected as I'm sure I'll need more of your wisdom as I continue on my journey.

Thank you all so much for sharing. What a truly brave person edriscoll. I appreciate your candor. This has been a great experience for me. Just knowing there are others out there with this crazy condition and who ask themselves the same questions, etc. As I type, for the second time this week I slept for about 2 hours. It is so difficult to concentrate on anything. I fell out when I got home last night (but no sleep to be had, my body hurt too much) I'll keep pinging you all for good words and suggestions. It seems I'm a baby when it comes to living with this "beast." I do have extra motivation in getting my old me back in that I have a young and very active daughter. She wants her father to play sports with her again and go on long hikes. It will happen again. Thanks for all the help. Anything you have to offer is helpful.

Thank you so much for your quick reply. The impact of reading another "dysautonomiac" discuss symptoms is surreal. The fact that you know what it feels like adds so much more credibility to your note. Of course I wish you the best in your journey as well. I am an Internal Auditor for a small university. Most employees here are a little older and have gone through physical challenges of their own (e.g. cancer, diabetes), which makes them more caring and patient with me and my issues. I've found that the university setting is also more compassionate that corporate America (that's probably why I'm here) I really enjoy my work and I'm not one to find busy work at home so an early retirement would not serve me well at all. Luckily my boss has already suggested many of the options you listed. I simply have to find out the best arrangement for myself. One of the negatives for me is that I live in a small town so the nearest doctor for dysautonomia is 4 hours away. (It could be worse) My (low) BP seems to be the biggest worry currently. But my doctor discusses my symptoms via email so we are working through it. I've always been very active: played (American) football, martial arts, etc. So not being able to be active is killing me. But I'm pushing to find the solution that will get me back in the game. Thank you so much for your comments! I wish you all the best. I greatly appreciate the time you took to respond to my note. Thanks.

New to Dysautonomia diagnosis (about a year ago). Dr's haven't done much more than feed me some extra pills. Most all my education has come from my own research. My question is: did any of you have to quit working because of Dysautonomia? If so, how long after your diagnosis did you have to stop? That is really my worst fear. My coworkers are aware of my issues and they try to make concessions for me. Good on one hand but that can hurt when they get tired of the doing extra for me. Any comments are welcome. Thansk.