Obvious Question

[futurehope]

After reading the postings on this forum about how many (me included) used to work and have now "progressed" to unemployment due to disability, why do I often read that we "get better"?

Obviously, if I look at the entire span of my life, I've gotten worse. I've felt "better" on occasion, but the general trend is down over time. Why and with what research do they say that some "get better"? They do not even know that much as to the different causes of POTS and what to do about it, yet they can make a blanket statement about how we might get better?!

I've told my neurologist just what I told you, that if you look at the entire scope of my life, I'm obviously getting worse, since I used to be able to work, to ...., to .... to .... fill in the blanks. My life is drastically altered, in sum.

I guess I'll answer my own question.... the ones who got "better" are not on this forum.

I don't know how statements like "POTS can improve" can be made by professionals who really are in the early stages of acquiring knowledge about this condition?

Do you see what I'm saying? Many of us have "progressed" from baseline to "not working". Shouldn't those unofficial declarations be indicative of what I've concluded..... that many of us POTsys are getting "progressively" worse?

Do you have an opinion? Do you see what I'm saying?

[potsgirl]

I DO see what you're saying, and have wondered the same things myself. I am definitely worse than I was before, not to bring anyone down, but that's the case in my life. I'm sure there are people who must get better, but perhaps they're fewer than what's implied. I sure wish I would get better!

Cheers,

Jana

[bjt22]

I do see what you're saying.

I think there are many factors that are at play. For years, I was frustrated over similar questions until it dawned on me that NO ONE REALLY KNEW what happened to people like us in the long term. POTS has only been considered an entity to itself for a little over a decade. Five years ago, or eight years ago or even two years ago, it was impossible to state with certainty any kind of projected outcome. I think this really applies to those of us who are hitting our middle years. There have been a few studies that indicate that young people who develop POTS have a good prognosis. These, I believe, are often those who are diagnosed in adolescence or in their early twenties. Sometimes they are those who never had symptoms before and experienced a very sudden onset. I think many doctors have read these studies and try to apply this the conclusion to populations that don't fit into that demographic. Many of these might not even realize that we could be dealing with entirely different entities. Furthermore, there has not been adequate time to see what happens to these young people as they become older.

I also think that since more cardiologists are becoming aware of this, there are more people being diagnosed with this earlier in the course of the disease. If a doctor diagnoses a person early, well, they've seen them while they are still able to work and function in most situations. Many of us were not diagnosed until symptoms were severe. We've already progressed. Our expectations are certainly different than those who have milder symptoms earlier in their disease. We can't just lump all of these cases together. It would be like lumping all those who receive a breast cancer diagnosis together. We certainly would expect a different outcome for someone who had a suspicious lump identified through mamogram and removed than we would expect from someone who's already had one such lesion in one breast and then discovered another in the other breast two years later.

[Tammy]

I wonder sometime if it isn't that we just stop going to the doctor constantly because we get to a point that it just isn't helping, so the doctors figure that we must be getting better. At least this is my case. At first I seen my doctor constantly, seen specialist, went through a million tests, etc. Once I had a diagnosis, tried many drugs that seemed to only make me worse, and a few that helped some, and so on, I no longer kept needing appointments. So from my doctors point of view, I must be doing better, however it is really about the same at times, and sometimes not the same, etc. as it fluctuates as POTS does. I'm homebound, mostly in my recliner all day, and try to be active (move around a few minutes at a time as I can or that my daughter requires of me). That is the only thing I can think of as to why some physicians seem to think we could get better. My neurologist strongly believed that mine would get better once my daughter became more indepedent. Well she's 4 now and I'm still struggling, so I'm not sure that had anything to do with how it all evolved. I've been weak all my life, and sleep disorder, stress, physical activity/running after a toddler, etc. hasn't helped, but it sure makes me want to keep going. I think I'd have given up by now if I wouldn't have my daughter to focus on because I am not a fighter for myself, but I will fight to keep going for my daughter.

[EarthMother]

I've been with my PCP for 10 years, up until this year we never discussed "prognosis". Its always just about dealing with symptoms and whatever comes up at the time.

I remember when we first discussed my leaving work ... I thought, I'll take some much needed down time and "recover" what I lost over the years. He didn't really say much then other than that might not be possible.

This last winter we were filling out disability forms, were it really shows the nitty gritty pithy things that we can't do for ourselves (like shower without assistance, etc.) He had a question on the form to complete about prognosis and I looked at him and said "We've never discussed that before." I remember him putting his clipboard down and meeting my eyes with his. He talked about the ups and downs that I would likely see in the future, but that ultimately my condition would continue to decline and that my overall prognosis was poor.

It was hard to hear, but decidedly true based on my experience to date. I don't know if it applies to all middle aged women with POTS or not, I also have autoimmune thyroid and chronic fatigue syndrome -- hey but what's in a name.

Good question. Thanks for giving us something to think about and share.

[Broken_Shell]

I agree. I read all of this literature and books about how we should "recover" and return to a functional life, but I have gotten worse over the past 7 years since developing dysautonomia. It's too bad that all of these resources aren't right because all of us want more than anything to recover! If only our will power were enough!

~ Broken_Shell

[futurehope]

I've been with my PCP for 10 years, up until this year we never discussed "prognosis". Its always just about dealing with symptoms and whatever comes up at the time.

I remember when we first discussed my leaving work ... I thought, I'll take some much needed down time and "recover" what I lost over the years. He didn't really say much then other than that might not be possible.

This last winter we were filling out disability forms, were it really shows the nitty gritty pithy things that we can't do for ourselves (like shower without assistance, etc.) He had a question on the form to complete about prognosis and I looked at him and said "We've never discussed that before." I remember him putting his clipboard down and meeting my eyes with his. He talked about the ups and downs that I would likely see in the future, but that ultimately my condition would continue to decline and that my overall prognosis was poor.

It was hard to hear, but decidedly true based on my experience to date. I don't know if it applies to all middle aged women with POTS or not, I also have autoimmune thyroid and chronic fatigue syndrome -- hey but what's in a name.

Good question. Thanks for giving us something to think about and share.

I commend your doctor. That is the only time I have heard any doctor say that. It took guts for him to be realistic. He must have thought you could take the truth as he saw it. But, I doubt he really knows what will happen.

The truth is, you are all heroes in my book. You push forward with limited knowledge, and do your best to get the most out of life. As far as I'm concerned, doctors do NOT know what will happen in each individual case, especially in us cases that are first diagnosed later in life. I say that because when young, sudden cases appear, doctors seem optimistic that the people involved will improve. Well I wasn't young when diagnosed, and my onset wasn't sudden.

I really did not mean this thread to be a downer. I just wanted a "reality check" as regards to the subjective data that I see on this forum....we all used to be able to ......, now we can't.

[futurehope]

I wonder sometime if it isn't that we just stop going to the doctor constantly because we get to a point that it just isn't helping, so the doctors figure that we must be getting better. At least this is my case. At first I seen my doctor constantly, seen specialist, went through a million tests, etc. Once I had a diagnosis, tried many drugs that seemed to only make me worse, and a few that helped some, and so on, I no longer kept needing appointments. So from my doctors point of view, I must be doing better, however it is really about the same at times, and sometimes not the same, etc. as it fluctuates as POTS does. I'm homebound, mostly in my recliner all day, and try to be active (move around a few minutes at a time as I can or that my daughter requires of me). That is the only thing I can think of as to why some physicians seem to think we could get better. My neurologist strongly believed that mine would get better once my daughter became more indepedent. Well she's 4 now and I'm still struggling, so I'm not sure that had anything to do with how it all evolved. I've been weak all my life, and sleep disorder, stress, physical activity/running after a toddler, etc. hasn't helped, but it sure makes me want to keep going. I think I'd have given up by now if I wouldn't have my daughter to focus on because I am not a fighter for myself, but I will fight to keep going for my daughter.

You definitely have a point about going to doctors less. Bless you for everything you do and for plugging away for your daughter's sake. You're my hero.

[juliegee]

When my son was first struck by dysautonomia, he was 12 y/o. Unbeknown to us, he'd had minor flares his whole life, but at age 12- it all came crashing down. He was unable to eat, attend school, stand up, etc. He could do little more than sleep. He's back at school full-time now. He's got a successful alternative band and he occasionally enjoys long distance bicycling (when he has time.) He's not cured- not by a long shot. He takes 6 different meds a day to be able to function and just recently revealed to us that he's started vomiting again. Sigh. My point (despite setbacks)- he's better. Much, much, much better than he was 4 years ago.

I think adolescent onset dysautonomia is one category in which the prognosis is more positive. That being said, I'm fairly certain he'll be dealing with this for a long, long time. We have a DX and great doctors and as our wonderful Dr. Peter Rowe said on our first visit, "We've only just begun to fight this!" His words filled me with such hope.

I hate to be a Pollyanna- seems to be my recurring role here - but I'm also a lot better than I once was. By discovering that MCAD was a big causitive factor for me, I have many more good days than bad.

There really are folks who get better or at least stabilize with meds/lifestyle changes. Forums, like this have been invaluable to our improvement. Folks on the Yahoo gastroparesis forum were the first to DX my son with an autonomic dysfunction (his local docs were stumped) and get us to the right docs (at Hopkins.) And, I first read about MCAD right here. I spoke with others affected on this site and got to helpful docs (at Brigham & Womens.) Keeping an open and inquisitive mind and not accepting local docs prognosis has been fundamental for us.

Your pseudonymn, FutureHope says it all. I've got my fingers (and toes!) crossed that you've got healthier days ahead of you.

Julie

[summer]

There have been a few studies that indicate that young people who develop POTS have a good prognosis. These, I believe, are often those who are diagnosed in adolescence or in their early twenties. Sometimes they are those who never had symptoms before and experienced a very sudden onset. I think many doctors have read these studies and try to apply this the conclusion to populations that don't fit into that demographic. Many of these might not even realize that we could be dealing with entirely different entities. Furthermore, there has not been adequate time to see what happens to these young people as they become older.

I wonder about this often. I believe I would have been diagnosed with POTS in my teens or early twenties if it were now... and I did improve. I went on from there to get my education, have a career, marry and have my children... I guess I would have been one of those who "recovered", although I was never totally symptom free. Now, after 20 years, a virus has set me back and I am probably more symptomatic than ever.

Summer

[MelissaCrystal]

Mine seems to be degenerative.... it progresses and progresses, and then all the sudden I have a good month. Then I relapse and it progresses and progresses again. I don't get it. But I'm definitely not getting better. Some symptoms are getting worse, like my digestive system....

[Sophia3]

once my 1998 TTT proved tachycardia when upright..but normal to slight fluctuation in BP, it explained the "chronic fatigue I'd had since 1985" but in 90, I had to quit full time work.

part time in 98. NEVER did anybody after my TTT pretend I would get better but said they would do their best to keep me comfortable and functional. With my lifelong history of what we NOW know is ANS issues, my drastic weightloss (after life as a fat person off and on my ENTIRE childhood and adulthood!) on top of the fatigue and other quirks, did NOT show signs of improving after 13 years.

Dr. Grubb agreed, things would not get better especially after menopause.

I appreciated the candor and honesty as opposed to false hopes. But you do have to re-arrange your thought process to cope, and that's no easy feat. I have not left my area except to see Dr. G since 1993. Can't fly or ride in a car very well, Would LOVE to "blink" myself to a vacation spot.

[jhjd]

I've gotten "better" since my diagnosis. I live a "relatively normal" life now. There definitely are still days that I feel sorry for myself, but overall I try to appreciate life and be upbeat, knowing I'm more fortunate than many people in this world.

But there are still days that I get really scared. For instance, I've got this ridiculously busy week leading up to a beach trip, and I'm just not sure how I'm going to handle things. I'm an attorney and, while my firm doesn't expect 60+ hours every week, it is accepted that it sometimes is necessary, and you're expected to handle it. So far, I've been able to do what needs to be done and then just crash for a couple of days. But every time it happens to me, I get so worried that I'm NOT going to be able to do what needs to be done, but instead just collapse one day at work or, worse, while driving home. I've already been at work for about 12 hours today, and won't leave for another hour or so. Then I need to be back here way early in the morning. Now, fortunately, I can work with a laptop, feet up, plenty of salt, water, etc. And, of course, the fact that I'm able to do it at all is a sign of my being better than I was. But it's still frustrating right now to see other people be just fine, knowing that the best case scenario involves me sleeping for 20+ hours to try to recuperate. And the worse case scenario is tripping off a full-scale attack.

But when I've voiced my fears to my dr., I've been told that "there's no reason to think that will happen." But we all know that's wrong. I just don't think that the medical community sufficiently acknowledges the fear of everybody living with a chronic condition - that is, that you won't get better, but will either stagnate or slowly decline. Yes, it's good to keep hoping and searching for a cure. But what they don't seem to realize is that there's a comfort and peace in having your feelings and fears validated. In fact, that's sort of why I'm on here tonight - as I said, I'm a bit scared right now, and getting on here makes me realize that I'm not just the freak in the office who can't put in a 15 hour day! : ) So, I guess, thank you all for reading my ramblings!

[mkoven]

I'm all for being realistic, but I also know that I'm someone who has to believe that the future is unknown. between eds and ans issues I've had awful stretches, and then significant improvement. i get myself into a bad place when i imagine a bleak future. that doesn't mean denial. that means doing the best i can to creatively problem solve. overall, i'm doing much better than a year ago. jointwise, i'm doing better than five years ago. i was told, with eds, that all my loose joints would degenerate fast beyond repair. just had an mri on my chornically subluxing hips and STILL no arthritis after years of slippage. I have to live within my current limitations and capabilities, take as good care of myself as I can, and know that i'm very bad at predicting the future. and i don't think i ever want a crystal ball.

[Rachel]

From what I have read and heard from doctors, the people most likely to recover from POTS are those who get it as teenagers and then "outgrow" it once they're in their late teens or early 20s. I've also heard that the recovery rate is better for those who get POTS as a result of a virus.

I know there are some members here who have dysautonomia, but have since gotten much better, and so they don't frequent the boards anymore. The people most likely to stay are those who are still sick.

I don't know statistically speaking how many people have dysautonomia and have gotten better vs. how many stay the same or get worse. It's really hard to tell from just reading on DINET as this is where those who are more ill gather. So to those of you who are new here or recently diagnosed, don't lose hope. It is possible that you can find a good treatment plan that will keep symptoms under control and make life manageable.

Rachel

[jump]

I also think this is really interesting.

Just the other day, I was talking to a friend of mine and reflecting on how I was a year ago or a year and a half ago, and commenting on how much "better" I am now and how relieved I am to have a little relief from the extremity of some of my symptoms. But then, as I thought about it, I feel better because I've modified my life style so drastically and my expectations for myself are so dramatically less. If I was trying to live the life I had roughly two years ago, I think I would easily feel as sick if not more sick than I did at that time. I think, too, I've gotten so used to my symptoms. Right now, as I sit here typing, my hr is 100 which is technically in the tachycardia range -- and a year ago, I would have noticed this and been thinking, "Oh my god, what is WRONG with me that I can't even sit and type without my heart beating like mad??" But now it doesn't even register at all -- I didn't even think my heart was going fast before I took my pulse to see what it was.

I've read a lot about teenagers with POTS who recover, but I've read very little about adults with it. I know my mother probably had NCS all her life (she used to faint all the time and had low bp, and doctors just said she was "prone to fainting" - but she also suffered from extreme exhaustion and a myriad of digestion problems) and now that she's gone through menopause she says she feels a lot better. So maybe in the very long run some of us will improve even if we don't experience any improvement for several years.

I know for me, I am just now coming to a point of acceptance, where I am starting to accept that this is just what my life is now. Like others have said, I'm not calling my doctor nearly as much. If she were to ask me how I am, I think I would easily make the mistake of saying "better than before" because my MENTAL state around all of this is so much better. My symptoms are pretty much unchanged, but I don't feel nearly as upset about this all as I did a year + ago. I wonder if all of these things contribute to doctors thinking their patients are doing better than they really are.

[Sophia3]

p.s. to follow on what Rachel said, i was told years ago by a head of an NDRF foundation it was an 80/20 rule.

80% of the folks got POTS SUDDENLY..and many can tell you the month, year or even the DATE they became ill. They can recover or have bouts of up and down, better than relapses. Or stayed well.

For others, like me in the 20%, we realize we were always puny, even as kids, say in gym glass for stamina, could never blow up balloons w/o getting headache, SEVERE motion sick in car or on amusement park rides. So the 20% is less likely to recover.

Virus onset has better chance for sure.

[morgan617]

I so get you.

I am most certainly in the 20%. If there really is such a thing. The more they find, the more questions there seem to be. Man a few years ago I was still driving and now I'm in a wheelchair. I do think some do get better, or at least well enough to function in the "real" world. But, like sophia, I have been sick my complete entire life, I don't ever remember any time of just feeling really great. That's why I was ready to stop after one child, but I guess God wanted me to have two. He is an absolute blessing and I love him more than life, but I also know my kids have suffered due to my illnesses. Jake says he won't have kids, because we are well aware of our "cesspool" gene pool. Unfortunately I wasn't. I know I have passed this on to him and his dad passed on the arthritis. He would still choose to be here, and I would never choose to not have him now, but if I had known, I would have chosen not to have children. That is a big regret for me.

I have adapted to so much stuff, the list to what I haven't had to change would be shorter. I don't know why doctors say that and I'm not sure what studies prove this. I saw a study a long time ago that said 95% of the patients in the group had recovered, only to discover there were something like 5 people in the group! All with adolescent and sudden onset.

This is a disease where they haven't even found a defective gene that I know of and even after finding that, it's years and years before it helps with anything. morgandowner here.

My doctor says he can see my progression from just visit to visit any more. And states my prognosis is fair to poor. That's why I don't spend so much time searching and being willing to go anywhere and do everything, just to hear someone say, gee you've got OI! A complete about face from 2003-2004. That wasn't very long ago.

I lost my BP cuff somewhere and we moved. Dave bought a new one and I took my BP today. 90/80. paced at 70. So I'm thinking vagotonia at this point. yes I do know how rare that is, but you oldies remember when I couldn't get my BP below 220/130 and my pulse was way whacked out? Now I wonder why I'm so tired?? I think if I didn't have the pacer, my BP and pulse would not be compatible with life.

Well, a vent that has nothing to do with the thread, except for so long I hoped and prayed I'd be one of "many" that would spontaneously resolve. You never want people to lose hope, but false hope is even worse. I did work for a very long time, although sick, I did manage to get my kids raised, and once I did have a life as opposed to an existence. I also know that this is an annoyance for some and never progresses beyond that. But as far as cured, I just have to wonder. sorry...morgandownerdragger

[Rachel]

I was just reading an article online by Dr. Grubb that mentions the "80/20 rule." Here's an exerpt:

"A distinct form of PD [peripheral dysautonomic] POTS appears to occur in young people, which we refer to as the ?developmental? form. Onset of symptoms is usually around age 14 years, and often follows a period of rapid growth. The majority of these patients are young women. Some patients are severely affected to the point of being disabled. Many will have urinary and gastrointestinal problems as well. However, the majority of the patients with the developmental form of POTS will eventually improve over time. Around 80% recover by the time they are in their mid 20?s."

Article found here: Postural Tachycardia Syndrome

Rachel

[yogini]

I have been on the forum for 4+ years, and have seen lots of people come and go. I think a good number of people do feel better. I can work. I have a very stressful job. I was really wearing myself down to go to work. I took about a year and a half off of work, in part to "recover" from POTS. I'm now feeling better than ever and back to working about 40/50 hrs a week and holding up OK. My POTS came on spontaneously. I still have POTS symptoms, take meds and eep in the back of my mind that I can relapse - and I did have a very big relapse a couple of years ago. I think a big part of my journey has been learning to let go of what was, and what may be, and just live in the moment.

[vemee]

I have had pots since my teens and have gotten progressively worse. I am now 52 had to retire from the fire department and go on social security. I have had a diagnosis only in the past 4 years and that was after doing most of the diagnosing myself with the web. When I was younger I had brain fog and fatigue but I was able to be physically active. The fatigue was attributed to depression and I entered into an adventure in the world of psychiatry. When my pots became severe and I was diagnosed I was thrilled at first that I had an answer to what had happened in my life and why I could not live up to my own expectations. That soon faded when the medicines wouldn't work and I had to go on disability. I don't do the things around the house like I use to because I got tired of pushing myself to the point of being sick trying not to let this disability disable me. I still feel guilty when my wife, has to pick up my slack after she comes home from work.

I think the big problem is that pots is looked at as a disease and not a condition caused by various factors. I recently got evaluated for elhers danlos because I was looking for a reason for my severe pooling and a genetic reason for why one of my daughters has pots. Both of us were negative. I don't think they have gotten far enough into research to know how this condition affects our bodies and all of the causes. I have been told pots has no negative effects on the heart but there is a case of takotsubo cardiomyopathy that may be linked to pots. takotsubo cardiomyopathy in a patient with postural tachycardia syndrome.

[futurehope]

I know for me, I am just now coming to a point of acceptance, where I am starting to accept that this is just what my life is now. Like others have said, I'm not calling my doctor nearly as much. If she were to ask me how I am, I think I would easily make the mistake of saying "better than before" because my MENTAL state around all of this is so much better. My symptoms are pretty much unchanged, but I don't feel nearly as upset about this all as I did a year + ago. I wonder if all of these things contribute to doctors thinking their patients are doing better than they really are.

Very observant comment. I tend to agree.

Reading these postings is an eye opener. On the one hand, we are told that if you have onset at a young age, your chances of recovery are higher. On the other hand, MANY on this thread DID have symptoms at a young age (including me), and still have symptoms.

I'm back to my usual conclusion which is, doctors do not know.

Really now, I do not mean this thread to be a downer. Why? It is obvious to me that doctors DO NOT know how your symptoms will progress or not. Bless the hearts of those doctors who have the fortitude and stubborness to keep trying different methods to get us to a better place.

I DO remain optimistic that once the researchers understand the malfunctioning body system(s), they will be able to employ more useful remedies. I look at it like the early stages of understanding diabetes, or multiple sclerosis, or Alzheimer's.

Each one of us has to make daily decisions about what we can handle or what we need to avoid. It becomes routine to think this way. We are all making the best of a situation.

But my signature says it all:I have Futurehope. POTS and all its variations will be understood more and more as time goes on.

BTW, I do not want to discourage anybody from figuring out the cause of their POTS causes like MCAD, Ehlers-Danlos Syndrome and others. If a cause for your POTS can be found, they can target the need better.

To people with Ehlers-Danlos as a contributary factor to POTS:

How do YOU view your POTS? Has it improved? Has it stayed the same? Has it worsened? Or have you learned to cope with the malfunctioning body parts enough to improve your quality of life?

The above questions to EDS patients is the kind of questions all of us will be able to answer once we know more about the malfunctioning body areas.

There is always hope and I do not want people to ever loose sight of that.

[HoudiniCat]

I was dx?d with POTS at age 45 (I can tell you the day and hour I got it). Didn?t have a virus or wasn?t sick at all before. Not the ?typical? patient that my doc has seen during his many years of treating POTS. However, his comment that the illness was ?short-lived in most? always gave me hope. Two and a half years later and I?m much, much better. I went from bedridden to working full-time, able to socialize with friends, no more meds, most symptoms being resolved, etc. At my last visit in January, he gave me a big hug and sent me on my way. Told me to call him ?in the rare event of a relapse?. But said I was like the majority of his patients who get sick ? that they are dramatically better in several years.

I?ve still got some annoying symptoms and won?t be running any 5K?s any time soon but all in all, much, much better. I agree that most of the people who get better no longer frenquent the site. I've seen many come and go in just the past two years.

[juliegee]

I was just reading an article online by Dr. Grubb that mentions the "80/20 rule." Here's an exerpt:

"A distinct form of PD [peripheral dysautonomic] POTS appears to occur in young people, which we refer to as the ?developmental? form. Onset of symptoms is usually around age 14 years, and often follows a period of rapid growth. The majority of these patients are young women. Some patients are severely affected to the point of being disabled. Many will have urinary and gastrointestinal problems as well. However, the majority of the patients with the developmental form of POTS will eventually improve over time. Around 80% recover by the time they are in their mid 20?s."

Article found here: Postural Tachycardia Syndrome

Rachel

Very encouraging for my young man. He did grow 5"-6" the year he was sickest. And, we do have a date, time, and place where this befell him..........BUT (and this is big but) he'd really had ANS symptoms his whole life- unfailing colic as an infant, severe GI issues, inexplicable vomiting, migraine headaches, fatigue, etc. The year he was severely stricken- he was way worse- couldn't function at all. So, for now we hope he's in the 80%....but we have our doubts. Time will tell, but my guess is that he'll always have to be on meds, restrict his activity level, etc.

So much for my Pollyanna ways

[maggie]

HoudiniCat

I was very greatful to see your post on this topic. I also was impacted with pots suddenedly only 7 years older then you, 52. I too was bedridden and have improved, but not as fast as you have. I wear a pedometer everyday and started out at 3000 steps per day. In the last six months I have gotten it up to 5000 steps per day. I know it must discourage some on this site that some are improving while others are getting worse, but I believe we all need to read the success stories as well as the struggles. It is my hope that those who have improved will stay around and encourage the others and help those who are not seeing improvement. I now have had pots for 3 years and pray I continue to improve. Only by comparing all stories will we be able to help drs help us as patients begin to understand this disorder.

Maggie