So Frustrated, I Think I Made Myself Worse

[imapumpkin]

In the past whenever I felt potsy (that;s what I call it when I can feel my symptoms creeping up on me) I would go to the gym and do my 15-20 min of aerobic cardio because I can't really tolerate much more than that. That was when I was high-functioning. After my traumatic summer and huge flare-up, I tried to start building my stamina back up and would go for very low-intensity walks around my neighborhood for maybe ten minutes. I did this for acouple weeks and then I finally started feeling like my endorphins were pumping again, it felt good, I wanted to walk further, faster, a little longer, so I did, and I thought if i pushed myself a little I'd increase my stamina.

Instead I totally screwed myself over and was without energy for the next 5 days and still feel like I can't walk further than the end of my street now (This was over two weeks ago). Grocery shopping is too much for me.

Understand that I have never had a flare up before and I'm feeling really lost. Before this summer I would get tachy and was chronically fatigued, bothered by temperature extremes and other minor inconveniences, but I have never been down for the count like I am now. I feel like there is no light at the end of the tunnel because I've never had a flare up I don't know how long they last, what to do to manage it, and what the fine line is between not letting myself decondition and pushing myself too hard. People (my own boyfriend included) don't understand that just because i don't LOOK sick, doesn't mean i don't feel terrible and depleted of energy all the time.

As a special icing on the cake, I finally decided enough was enough and tried to make an appointment with a neurologist who specializes in POTS and dysautonomia. All the websites said he accepts new patients. When I called, the receptionist told me my PCP had to fax his office all my information, diagnosis, notes, tests, etc that he would "review before deciding whether or not to see me". Big problem? My PCP hardly knows anything about my POTS--I don't discuss it with her. My cardiologist who I see for a mitral valve prolapse diagnosed me with it and he treats me and I've always called him with questions about the condition.

This specialist is one of only 2 specialists in my state that I have found. I don't know what to do if he doesn't deem me an important enough patient to see, because I need help I can't manage this on my own and my PCP doesn't know anything about dysautonomia and my Cardiologist can only do so much since it isn't a cardiac issue. I just need some help from someone who knows about my condition and can help me through this flare up. Has anyone else ever been told "no" by a specialist in dysautonomia?

[spinner]

hi, i have a very similar story to yours. About once a month Im "testing" to see if i can push myself further physically, so dont beat yourself up over trying to make progress. Thats a normal thing and it shows youre fighting.

Not to give advice, but there are physicians recommended here. This is not a disease/syndrome to be treated by a general doctor. It HAS to be specialized. Most of us on here have traveled extensively in search of diagnosis, some across country. Its normal that they want all your records, that shows that theyre researching your symptoms. If you can afford it insurance wise, mayo and cleveland clinic and vanderbilt are "hot spots" for POTS diagnosis. Good luck, and PM me if i can be of any encouragement, ive been down the path for 2 years.

[looneymom]

When my son went to Mayo, he was told that exercise was the key to getting better. He is just now able to walk 10 minutes but it has been a constant battle to be able to do it. He was diagnoised in

December 2011 and he is only 12. He wants to play basketball again. He can tell when his body is off and so can I. It can be discouraging but on days when he is really off he tries to do at least 5 minutes of walking. He may have to do that a few days before his body bounces back. He has learned if he pushes too hard too fast, he may become deconditioned pretty quickly. I have had to help him learn to focus on how his body feels. This has been a real adjustment for him and probably is for anyone who had a normal life before POTS struck.

[Christy_D]

To get around the scheduling people I search the internet for the doctors email address and go straight to the doctor. I explain what is going on and if they can help. They have emailed me back saying yes and schedule the appointment with their scheduler.

The one scheduler kept telling me 'The doctor doesn't see patients under 18' , so I had to explain to her I had an email from the doctor stating he would see my son (who was 15 at the time). Email is my 'Go to' plan to get around the office staff.

Christy

[spinner]

to the above, your son may do much better in the pool. Ive had miraculous workouts in the pool when ive

had trouble walking otherwise. There are several posts in the arhives here about that.

[imapumpkin]

Pools are actually really helpful for me as well. My body just feels better immersed in water...maybe its the weightlessness or something. Spinner-- Thanks for you words of encouragement. I actually found this specialist through this DINET and a lot of people on this forum have seen him and said good things, I just didn't realize there was such a strict "application process". Christy- thanks for the suggestion I will definitely try the email approach.