Pots Getting Steadily Worse

[sugartwin]

I have POTS secondary to EDS and my understanding was that while symptoms hung around for life, they aren't supposed to get worse. At first I wasn't sure that it was happening because the decline was so slow. But I'd think back on things I'd done in the past (say a year ago) and think, 'I'd never be able to do that now!' All the while I'd been keeping up with exercise, 25-30 minutes about four times a week. I'd come to the conclusion that it obviously wasn't going to make me better but maybe it could keep me from getting worse.

Then in March of this year I had a huge surge in my symptoms. I had a constant low-lying nausea, severe constipation, my blood pressure got labile, going from really low one day to high the next. At my rheumatologist appointment I begged him to call my neurologist and tell him about my symptoms getting worse.

(It turns out he called my neurologist and told him he thought I needed to get a job. So helpful.)

My neurologist takes lying and standing blood pressures and heart rates at each appointment so I got out the records from each appointment going back a year and a half. And the standing heart rates had been steadily climbing over time.

I felt so defeated when I saw that. Has anyone else dealt with worsening symptoms over time? What did you do? What did your doctors do?

[sue1234]

I'm sorry you are having a worsening. I have "evolved" over the 5 years I've had POTS. The first couple of years, I would feel like all the blood was draining out of my head within 7-10 minutes of being upright. In the last year, I don't necessarily feel lightheaded, I just get a flush that vasodilates my whole body, and I get really hot. It makes me feel "swimmy" headed, so I sit. I almost feel that if I wouldn't flush, I actually might be able to stand and be upright more than initially! I just need to find out what my flushing is all about.

[Yolaclover]

Sue, are you on any meds? You with Pots in the first years sounds like me now!

[yuliya]

I have no suggestion but wanted to say I know exactly how you feel. Sometimes I feel like doctor don't care or under estimate the severity of my POTS (maybe due to age or lack of knowledge). I would say that I am a fairly positive person and happy all the time but lately I am having a hard time staying positive since I feel like I will never find a treatment. I don't dare say it to the doctor for the simple fact that they will blame it on a mental issue and give me depression meds when it is not the case.

[Guest tearose]

Please do not allow the opinions of some poorly educated doctors to get you down!

To answer your question, yes, I have gotten worse over the years. I am as active as possible, but I am unable to hold a job. It is BECAUSE I am not working my ability to live some sort of quality of life has returned. My spiritual life developed exponentially too.

It takes me 2-3 hours in the morning to get my body systems up to a good functional level. This includes the need to get my gut in motion, my bp up and getting into compression. If I have done this and then some house tidying, sometimes I will need to rest just after that!

The criticism and observation of what you are doing from others will only worsen your life. Though hard at times, realize they are coming from a negative, judgmental, ill informed place and try to let these wrong opinions go.

If it helps you at all find encouragement...I got more deeply into prayer and meditation and this has been a blessing because I feel and sense the spiritual realm now and it is a great source of strength, wisdom and love.

best regards,

tearose

[sugartwin]

I really appreciate all the replies. I used to be a fairly optimistic person, but yeah, now my optimism tank is on 'E'. My symptoms aren't as bad as they were when I was totally untreated, but I'm worried that they are headed in that direction, especially since I seem to be getting bad rather quickly now.

And yes, yuliya, I feel like I'm the only one concerned about this slow moving catastrophe. Watching myself get worse is about as demoralizing as it gets. I feel better knowing I'm not the only one.

I suppose to my doctor's eye I'm just one of many patients, somewhere in the middle, not the worst off and not the best.

[ladyt]

Sorry to hear u are getting worse. And that your docs are well docs...

I have had this in one form all my life. When i got my diagnose back in 98 I had gradually gotten worse for a few years. But still i was abel to be fairly active and did more than most people. During the year of 99 I reclined even more. I started the year exerising like i always did, but during the year my body ust whent down in shape and stamina, even though i kept at it.And i have never been abel to do normal exersis since that year.

Ater that i have had many ups and downs. My ups is not healty or functiong all day (even on a good day), but better that the downs. I have found ways to deal whit the difrent symtoms and weir body reactions. And i am searching for new and better ways. i wish i new why i have pots ( i have so many other syptoms) and got some real help from the docs.

It is very hard when slowly getting worse. And when one dont understand why. But even whit in genarly getting worse, i have had better days. I remeber them the best, even though they last the shortest. The only comort i can bring u, is u are not alone. And as u write in your reply, that seems to help u a lilte..

[jem15]

Yes, my POTS has slowly gotten worse from year to year, for the past 16years now. For the 1st 13 years or so, I hung in there, eventhough my functioning was declining. I still pushed through school, and then work. And just had to keep modifying my jobs/activities, and doing less and less. And like you, I'd be like "hey, I used to be able to push through ____, and now I can't even think of doing that".. So I share your frustration. It's so sad/scary to deal with.

In year 13, my symptoms rapidly started to get worse, as opposed to the gradual yearly worsening.. and it turned out i had cancer, "on top of things".. so that made it worse, then chemo made it MUCH worse, and eventhough it's been over 2yrs since chemo ended, I'm still not better enough to work yet, and am still not even up to the level I was at before chemo. Which wasnt a good level either, I was barely hanging on working before my cancer diagnosis.

The past year or so, I feel my symptoms worsening again, and I really don't know why, other than maybe I'm still doing "too much" for me. I can't work, but I have doctors/therapies 2-3week, and that just kicks my butt. I thought I should at least feel a little better by now if the cancer is supposedly in remission. Anyway, although the cancer adds an extra variable, my condition was worsening before the cancer (and the drs say it's a quick growing one, so they say it's not the cause of my POTS being worse for so long). And my one oncologist is adamant that things still shouldnt be affecting me... my POTS dr thinks chemo would mess me up for "a while"...but I still shouldnt be getting worse.. I should at least be staying the same...

I haven't responded yet to any treatments/exercise, etc... still fighting, still trying to come up with something.. but the doctors have NO answers, ever.. I'm really going to force with them again about the decline in functioning.. i have no one else to take care of me, it's just me.. so it's hard, i beg them to hang in there and help me, but drs just dont seem to want to really put forth much effort.. it's the bare minimum, i guess cause they're busy and cause they really just don't know what to do.

Anyway, dont mean to sound depressing/scary..but if it helps that others feel your pain and are going thru the same thing. One thing that I still wish i could look into is the possibly of mitochondrial disease as an underlying cause for POTS.. when I've talked to people with it.. i think it makes sense.. and would explain why my condition is progressive.. don't know if any of this helps you, but hang in there! it's hard enough dealing with this condition, to also have to deal with stupid doctors who make ridiculous comments, like oh, you just need to work! Again, I feel your pain.. I've had my fill of infuriating dr experiences;-)

[faint factory]

Mine has gotten worse pretty suddenly, like you. I finally had to get officially diagnosed and medicated for the first time. I felt like I was improving, and thought perhaps I was going through a phase that had passed. This past weekend I couldn't take my medication and felt absolutely horrible. It was depressing to realize I've been getting worse and the medication was hiding that reality from me.

I get depressed sometimes, because while I always just kind of assumed it would work itself out... it just might not. I might keep getting worse. Digesting that has been really hard. No one I know really gets it, either, because I LOOK fine and I do a good job hiding my symptoms when I can.

Anyway, my point is, you're not at all alone. I think a lot of us especially struggle because so many of us are quite young, and look healthy. It ends up that we hide our feelings about it, because we fear seeming nuts worrying about an "invisible" medical problem.

[jenwic]

Sue,

The flushing you're having sounds like it could be some sort of mast cell problem (MCAD). That's one of the symptoms of it.