Obvious Question

[Csmith3]

I am one of the EDS people. I think I've had dysautonomia for life, though the symptoms like fatigue didn't really hit until I was 10. This did not coincide with a growth spurt or any illness. I then had good and bad patches until the POTS fatigue/lightheadedness etc was a permanent fixture by my mid-teens. I was diagnosed a few years ago. I'm now 35. My joint problems are mild but getting worse whilst my POTS is just the same. I live a relatively normal POTS modified life.

I would echo previous comments that I am in a better state now than I was 10 years ago, but mainly because I have made some drastic changes to the way I live my life. Although it took a long time to get a diagnosis, it was becoming more and more apparent that the illness wasn't going to disappear so I had already gone through the process of managing my expectations.

The other thing worth mentioning is that as time goes on, I am diagnosed with more things. Not necessarily big things. But fixing these other problems has made such a difference to my overall health. I can't believe I'm encouraging people to get other conditions checked out when I have such a phobia of doctors and hospitals and am largely to blame for the late diagnosis!

I have not had the prognosis discussion with my doctors. There is a tacit understanding that there are no answers. My own view is that I don't think EDS is the only thing behind my POTS; there are just too many unknowns. Hormones definitely play a big part in my symptoms. I do wonder if my symptoms will get worse when I approach the menopause and then significantly improve. Someone in my family found that this happened. So I hang on to this thought and hope I can keep my relatively normal POTS life for as long as possible.

Best wishes to all

[MomtoGiuliana]

I've had the prognosis discussion with my dr (POTS specialist) and he says it is unknown. Maybe I will continue to stay very well (after bad bout during and post pregnancy). He says for most people, it is a chronic condition that is not progressive, but can be disabling at times. He says I am likely to get worse for awhile during menopause.

I know this is not the case for everyone. Unfortunately, so little is know still.

[LindaM]

Hi, I'm new on here. What pushed me to seek a site like this is because I feel I'm getting worse. Had issues all my life, but finally diagnosed with them the past year and a half. I still work a little, and wondering how long that will keep up. I would just like to mention to you that Armour Thyroid is much better than Synthyroid. The doctors don't know about that, so it may take some work to find a doctor that will be open to giving it to you, in case you're interested. Armour is a natural thyroid and you need a prescription for it. Be well. LindaM

[ramakentesh]

ALL the information/studies on prognosis are TOTALLY conjectural - there are no firm or proper studies on the prognosis of POTS in patients. Most of the information I hear on this is really just the opinion of the doctor in question and given based on their experience with patients.

POTS is almost certainly caused by a variety of very different mechanisms and all of these may have very different outcomes themselves. Autoimmune forms of POTS qould be totally variable in outcome and prognosis - as all autoimmune illnesses are. Other forms may be more constant or progressive but its hard to say.

From the experiences on this site Id say that some progress, some wax and wane and some improve although ive yet to meet anyone that has had a total and spontaneous resolution of POTS - although my doc said he had one patient in who this occured.

In my experience even patients that have an abrupt onset can pinpoint mild and vague symptoms before this abrupt onset. I myself had an abrupt onset but looking back something wasnt quite right from my high school years but it was so mild that it didnt impact on my lifestyle.

Secondly there is still debate about how EDS III relates to pots. Blood pooling as opposed to correctable blood flow abnormalities are still being investigated, so the prognisis even for EDS is still conjectural.

Mine improves considerably in between bad boutes, i hope that it doesnt progress to longer boutes or permanent problems. It improves for strange reasons and its pretty hard to predict. This latest slump was my worst yet. before that i was 10-30% symptoms for 3 years.

[futurehope]

ALL the information/studies on prognosis are TOTALLY conjectural - there are no firm or proper studies on the prognosis of POTS in patients. Most of the information I hear on this is really just the opinion of the doctor in question and given based on their experience with patients.

POTS is almost certainly caused by a variety of very different mechanisms and all of these may have very different outcomes themselves. Autoimmune forms of POTS qould be totally variable in outcome and prognosis - as all autoimmune illnesses are. Other forms may be more constant or progressive but its hard to say.

From the experiences on this site Id say that some progress, some wax and wane and some improve although ive yet to meet anyone that has had a total and spontaneous resolution of POTS - although my doc said he had one patient in who this occured.

In my experience even patients that have an abrupt onset can pinpoint mild and vague symptoms before this abrupt onset. I myself had an abrupt onset but looking back something wasnt quite right from my high school years but it was so mild that it didnt impact on my lifestyle.

Secondly there is still debate about how EDS III relates to pots. Blood pooling as opposed to correctable blood flow abnormalities are still being investigated, so the prognisis even for EDS is still conjectural.

Mine improves considerably in between bad boutes, i hope that it doesnt progress to longer boutes or permanent problems. It improves for strange reasons and its pretty hard to predict. This latest slump was my worst yet. before that i was 10-30% symptoms for 3 years.

Rama,

Are you a researcher? You often seem to have a lot of information and you are articulate in sharing it.

[Lgamez3]

I am wondering this as well. I have been out on Short term disability from work for 3 months now and I sure dont seem to be getting better. I have some days that are a little better than others, but never able to function the way I used to. Now the STD company is wanting my dr to tell them a prognosis, what limitations I have that limit me from working an 8 hour shift (I work in sales) and they want another 24hr holter monitor because the last one was done in March.....Believe me, I would MUCH rather be at work than at home feeling this way. I have now hit the "depression" stage, or so I am calling it, in this because now that I FINALLY have doctors believing that there is something REAL that is wrong with me, now I am trying to convince insurance companies too!

My father came by the other day and said I should start checking into SS disability just to be prepared. I am wondering at what point does this become a real issue for people. I would love to work, but just showering and getting dressed wears me out (I seriously think I have chronic fatigue syndrome also)! I now know that I have about 3-4 hours a day total that I can do things (not consecutive hours) then I am wiped out. Some days though, I cant even get out of bed. I know the stores that have the ride on carts memorized because I can not stand and walk around a store. I want so badly to go shopping with my girls, but the stores we like to go to dont have the motorized carts so I cant go.

Is POTS a condition that is even covered by disability?

[Heiferly]

POTS is not specifically covered by social security disability, so your doctors essentially have to make the case that it is "equivalent" in terms of its disabling effect to some disease(s) that is/are enumerated on the list of covered diagnoses. At least this is how I understand the process, by all means someone correct me if I am wrong. It certainly is possible to get on SSDI with POTS (or even the symptoms thereof, pre-diagnosis, which was my status when I got approved for SSDI).

[ramakentesh]

Not a researcher, just a frustrated POTSIE who is spending too much time trying to work out what is really causing POTS, since the models proposed to me never fitted my symptoms and didnt make sense as a cause.