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Getting scared.

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After joining this forum, I'm getting scared, because it seems like a lot of you are bedridden, use wheelchairs and are in a lot of pain. When I first went to my doctor, the doctor and nurse seemed to think that they could get my heart rate down with meds and that my lifestyle wouldn't change too much.

I went shopping today with my daughters and my heart rate was in the 90s. I thought that was pretty good, and I felt fine. I'm just so scared that I'm going to take a turn for the worse or something.

I know that I should take one day at a time. I need to keep saying my prayers and have faith in God that I will be able to beat this or at least keep it at bay. Sometimes I forget that He is on my side.

Thanks for reading. No responses required ~ just getting my thoughts out to make myself feel better.

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I just want to say that I understand your fear. There are a lot of unknowns. However, you are UNLIKELY to get a lot worse as long as you are under the care of a specialist and she/he can put you on appropriate medicine and other regimes. Most POTS patients improve with treatment. The problem for many patients is the length of time it can take for diagnosis and the fact that without treatment, one can just get worse and worse. My doctor has told me that recovery time improves significantly the earlier diagnosis and treatment begins.

I was bedridden and very ill with POTS 2002-2003. It took months for appropriate diagnosis and treatment in my case. But I am now very recovered and live a nearly normal life.

take care,


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I just wanted to mention that I too had these fears. I think they are normal when dealing with a chronic illness. I must say, though I'm not where I want to be I have improved very much since last year. So I'm hoping next year at this time it will get even better and so forth.

I say live in the moment. I struggled alot with this when I was first dx in Jan 05. Everytime I felt good I worried about when the bad will return. I wasted alot of good days when I should have been enjoying my kids and getting things done. I now know the bad days will come so I definitely live my good days like it might be the last. I accomplish and have soooo much fun on my good days.

I'm glad you can express your feelings. Getting it out helps alot. And were here to listen because we've all been through this.

Have a good day


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Hi.. I know how scary pots can be at times.. and on those bad days you just want to crawl in a nice cold hole...

I just wanted to welcome you to the forum.. and say HI!

I hope that treatment is successful for you and that you start feeling better soon..:rolleyes:


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hi jennifer ,

i too am new to the forum.unfortunatly not new to dysautonomia.its been2 years and counting, iam not bedridden but my life has changed alot . my cardio says the channges in my lifestyle are what helps me the most. i too fear i will get worse .but like you have faith that i wont.every time i am down and think i am crashing again, my daughter brightens my day by saying,"MOM YOU ARE JUST HAVING A BAD DAY . I REFUSE TO BELIEVE YOU ARE CRASHING AGAIN. I JUST WONT EVER LET MYSELF BELIEVE THAT.those words come from a sixteen year old girl (my daughter )who also has dysautonomia.she has so much faith in the future that i hve to believe shes right.have hope always.


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I'm neither bedridden or in a wheelchair... but I am in a lot of pain. Most of my pain is NOT directly from dysautonomia--I have a collagen defect called EDS, and makes my joints way too mobile, which causes me a great deal of pain, mostly in my hands, spine, hips, knees and feet (that doesn't leave much out, eh? :rolleyes: ) Seriously though, try to NOT be scared.

Anyway, as I've said once before today, life goes the way it will go. Some people here will get better--a percentage of those who had sudden or viral onset are the most likely in the group, and some will have symptoms come and go with periods of relative normalcy, and some will stay stable and lastly, some will progress with their illness over time. I've learned to avoid predicting who will fall in what group, including myself.

I focus on being the best I can today -- today wasn't the greatest day, actually. I have a stomach flu. But I know that tomorrow is likely better than this, so i try to focus on that...and rest when my body tells me to do so, which was quite a lot today.

My suggestion is to focus on trying to think about things that you CAN do, things that make you feel better or feel rested. In my opinion, focusing on what could go wrong leaves infinite possibilities and can drain your emotional and physical resources, which are already at a premium.


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