Getting Worse?

[valliali]

I am just wondering if you guys feel like you progressively get worse?

I have been sick for a little over a year, diagnosed with POTS about five months ago, but I definitely keep getting worse. I don't get better, then have a relapse with the same symptoms as before, but I am constantly getting new symptoms, and the ones that I do already have keep getting worse.

I have read that chronic, progressive dysautonomias have a very poor outlook. I always assumed that meant MSA or something of the like, but my dysautonomia sure feels both chronic and quite progressive.

My heart issues especially get worse and worse. I have had no improvement, maybe for a little with the beta blockers, but as of now, much worse. So I am wondering if those of you who suffer from heart arrhythmias all of a sudden developed them along with all your other symptoms, or did they come on over time? I feel like I am getting new ones, and more frequently, each month!

[momofsara]

Yes, unfortunately, Sara has been diagnosed as progressive. Her dysautonomia has definitely gotten worse and shows no sign of improvement whatsoever. She has so many symptoms its hard for her to even get up, so shes almost bedfast... This is so heartbreaking for me to see my child in this condition at such a young age. She's had problems since she was in high school, but as with others here, it took a while to be diaganosed. Luckily she has a couple of compassionate doctors nearby and they are wonderful. She doesnt see a specialist, but the doctors she does see have educated themselves about dysautonomia and they do a great job with her. At this point I dont know if there is much a specialist could do anyway. Hope you have some brighter days, and I'm sending you loads of best wishes and gentle hugs----

Susan

[juliegee]

My heart breaks for those whose dysautonomia is chronic and progressive. I have gone through awful and better times. I just wanted to post to offer a bit of hope. I have been perefctly awful before- unable to leave home, horrible tachy, passing out constantly, couldn't eat, the bottom of my feet burned, every bone ached, unable to urinate, etc. I have also had periods in my life where my symptoms were pretty well controlled with meds/lifestyle changes. Valialli, your dysautonomia doesn't HAVE to progress and worsen. It can improve.

Hugs-

Julie

[yogini]

Also, ups and downs are pretty common, remember that most dysautonomia is NOT progressive. It just sometimes takes time (many months or even longer) to find the right dr and the right treatment. Although a year probably seems like forever, it's probably too short to tell whether you are getting worse. So just hang in there as best you can. I hope you find something that helps you!

[Sunfish]

valliali -

while not dismissing the fact that progressive dysautonomias do exist, i also wanted to chime in to encourage you that, on the balance, most of them are frought with ups & downs (and thus may seem progressive at certain points in time) but are not, on the balance, considered progressive. and even for those with progressive illnesses, most are no where near to what would bring about a diagnosis of MSA. so - bottom line - try not to worry too much but rather focus on getting the best management you can for your current health situation with the expectation that, most likely, you'll have ups & downs along the way but will, with time, acheive a modecum of management over your symptoms that you haven't yet found.

having been around this forum (and others) for years, MANY people in their first year or two or three of illness are very concerned about their course of illness being progressive, symptoms seem to be out of control & progressing, etc. the concern is understandible when people are trying to traverse a world of illness/ dysautonomia that is new & unknown to them, but more times than not people's illnesses do NOT end up being progressive. so, while it's not impossible for your illness to continue to get worse, it's definitely not the most likely course, even if your symptoms have seemed to progress up to this point. as one of the people who does have a progressive course with severe, multi-system involvement, i have been told by several of the top autonomic docs in the country who have treated me that i am VERY unusual, i.e. one of these docs has said that he's seen less than a handful of people with my level of involvement/ progression. so while i know it's easy to get worried, to read articles that mention MSA & think that's where you're headed, etc, that is VERY unlikely so try not to worry about things heading that direction.

instead try to get a doctor (or team of doctors) who you're able to work with to get yourself feeling as well as you can within the constraints of your current health situation, knowing & hoping that in doing this you're only going to increase the chances of things improving over time. in that way, even if you don't technically "improve", by getting your symptoms better controlled, your day-to-day functioning is likely to improve.

while no one knows for sure what the future holds for any one individual, rest assured that statistically speaking, it's very unlikely that you're headed toward being one of the worst case scenarios. and no matter what, worrying about it won't help. so while it's probably easier said than done, try to take a deep breath & not worry too much!

hope this helps,

melissa

[valliali]

Thank you all very much for your replies.. and encouragement. I suppose I am still a "newbie" to dysautonomia, having only been experiencing symptoms for a year, but some days I feel sooo badly that I can't imagine even making it another year if this is the rate I am deteriorating. But I suppose it is very likely that I have simply not let the dysautonomia run its course, but I will eventually, and hopefully, find ways to manage the many symptoms.

Meslissa- do you have MSA? If you don't mind me asking, how old are you? I have read that MSA is very largely found in older men. You said that you are a very unusual case. I am incredibly sad to hear that. I remember, just a year ago, hearing about crazy diseases and disorders that would randomly happen to anyone and thinking, "that'll NEVER happen to me." Since becoming sick, I have certainly appreciated the fact that no one is spared from these awful conditions, and they have become so much more humanized. Now when I hear about really random diseases, I feel so sad for the few people who actually do becoming sick with them.

Sorry, I am going on and on, but at 24 years old, all of my peers are a lot more concerned about their party habits than their health statuses. I get it because I was there only a year ago, but I'm certainly realizing how fragile life is. Perhaps I feel a bit too young to be learning this lesson, but in many ways I am very grateful for it.

Thank you all for your support.

[flop]

I remember that for the first 2 years that I was ill with POTS it seemed to get progressively worse, but in patches (if that makes any sense?). I think a lot of that perception was because I was constantly fighting my own body to try to do everything that I could previously do. As I have learned more about the condition and made the association between me overdoing things and then having a flare up, I have learned to slow down a little. I still do far more than is sensible and end up paying for it by having to rest for several days at a time to recover but at least I know what I have done to myself.

I did have a patch 2 years ago when I felt almost 100% okay so long as I took my meds and wore stockings. At this point I thought I could take my career to the next level and pushed myself way too hard by taking on more responsibility and a larger workload. I have learned the hard way that it was not the right decision and I am now working on achieving a balance between job satisfaction and maintaining the best health I can.

As you get more experienced with dysautonomia you get to know your own limits and you can pace yourself to be active within your capabilities. Every now and then things get out of balance and you do have a flare so you have to learn to listen to your body and just accept that sometimes it just isn't fair! Also don't forget that people do recover from dysautonomia (especially those who developed it during adolescence) - you just don't hear much from them on these types of forums because they are busy being healthy and getting on with active lives not looking for advice here.

Hope you are able to gain an oversight of your symptoms and not worry too much about what maybe - live for now, this moment, and enjoy it!

Flop

[Sunfish]

hello again -

nope, i don't mind the age question at all! i'm 28, so not too much older than you. but no, i don't have MSA. i actually have more severe autonomic issues systemically than is typically for those with MSA but don't deal with some of the other issues that are needed for the diagnosis, most namely Parkinsonianism-type features & cerebral involvement, which in more understandable (and greatly simplified) terms means that i don't deal with certain movement & stance issues that are seen in those with MSA, Parkinsons, & some other neurological movement disorders. while many think that MSA is "just" the most severe form of dysautonomia, it's actually a very different illness of which autonomic dysfunction is only one of the major criteria. people with MSA are more likely to be misdiagnosed with Parkinsons than with a different type of dysautonomia. a good explaination, though it is NOT something you need to be worried about yourself, is "Table 2" on the following page: http://www.emedicine.com/neuro/topic671.htm. it's a succinct summary of the diagnostic criteria for MSA.

as for what i AM diagnosed with, i have a progressive form of autonomic failure, also referred to by some doctors as progressive autonomic neuropathy. similar degrees of autonomic failure are not often seen in people my age; it's not common in any population but is "most" prevalent in those middle-age or older, and a bit more so in males of that age group than in females. b/c of my unusual diagnostic/ symptomatic profile some of my docs are thinking that i may have a mitochondrial disease as the underlying reason for my illness progression and i've been undergoing a lengthy series of testing to evaluate that possibility in recent months; whether or not that is the case won't have a large effect on my treatment or prognosis but i'm someone who likes to understand as much as possible about what is (and isn't) going on in my body. without rambling on & on here, if you want to know more about me you can check out the article about me in last year's summer newsletter: http://www.dinet.org/summer07/sum07news3.htm. it's obviously not entirely up to date but my history & much of the day-to-day info is similar. if you have any other questions feel free to let me know.

you're right that living with & through illness of any type more than the standard cold or flu gives you a much different perspective on things than others your age (or of any age for that matter!) it's not always an easy thing, but, as you seem to already appreciate, gives you a broader appreciation for many things that those without similar experiences simply can't have; it's commendable that you're realizing this at all when you're still fairly new to entering the land of illness/ dysautonomia.

in your last post you referenced "letting the dysautonomia run its course." while i am a big proponent of the value of learning to accept & deal with one's reality, i also want to continue to encourage you to find the treatment(s) - medications, lifestyle changes, or other interventions - to get you to feeling the best that you can. it's true that patience for the course of one's illness is a crucial element of keeping sane for many of us at times, knowing how long you're been dealing with dysautonomia it's pretty unlikely that you've already exhausted your treatment options at this point in time. it's a fine line between seeking out more & better treatments & going overboard, but i'd hate for you to settle with beta blockers as your only treatment option wherein your only other option is to hope & pray that things get better with time. it's very true that time may be your healer, but there may be things that help you to make the most of your time to get you to feeling as well as possible, whatever that level of wellness may be.

flop's comments re: learning your body & your limits is also very true & something that you can only fully appreciate after the fact. having been in the land of dysautonomia for over eleven years i'm still learning - b/c things are always changing - but despite my situation being drastically more severe than when first diagnosed, there are a few things are in some ways "better" b/c of the fact that i'm so much more attuned my body & it's limitations. one concrete example is the frequency with which i actually lose consciousness, or pass out/ black out (aka syncope). i used to pass out very frequently. technically, my body can tolerate being upright less now than it could then, but b/c i'm so much better attuned to my body's cues than i used to be, and b/c i've learned to adapt to my body's quantifiable limitations, i actually pass out less now than i used to. i'm not any "better" - in fact, just the opposite - but i've become wiser about this one aspect of my body & it's limitations so that the number of times i fully faint is less than it was ten or eleven years back. hope this makes sense!

hope this helps,

melissa

[valliali]

Thank you so much for your response. It sure sounds like what you are dealing with is incredibly unusual! My doctors are now suggesting that I have a form of progressive autonomic neuropathy, although I'm not sure they, and definitely not I, know exactly what that is. But I am showing signs of nerve damage, so they are a bit more concerned.

Everything you said in your last post was incredibly insightful, and so true. Thank you so much!

[juliegee]

Valialli-

Lots of us have nerve damage and our dysautonomia is NOT progressive. My 12 y/o son showed MAJOR nerve damage of his small bowel and a year later, with treatment, was eating normally. Despite the grim prognostications of our doctors, many of us have symptoms that come and go for long periods of normalcy. Things can be very bad and then turn around. I hope your doctors are WRONG!

How incredibly generous of Melissa, who is clearly dealing with a progressive type, to chime in here. That's why she's one of my heroes.

Do not give up hope. You are still in the searching for answers phase!!!!

Forever Pollannna-

Julie