Does Deconditioning = Pots?

[all4family]

Hi everyone,

I just want to know what everyone here thinks. I have heard a lot of people here mention that their POTS is frequently blamed at least in part on deconditioning. After explaining to someone once again how tired I am they told me I needed to get some exercise. If you don't do anything you will get deconditioned. And this isn't the first time I have heard this. The thing is, is I do, do things. I do as much as I can take, and not only that but here is the more interesting thing. I have "spells" that are bad, but I also have "spells" that are good. During a good spell I still feel bad, but am ABLE to overcome it, and do a lot more. The last time I had one of these "good spells was about a month before Christmas. And I always think the same thing when it happens. "Maybe that was it, and I am going to get better now. So the last time this happened was no different. I woke up one day and felt good. I decided to pick up some things on our porch (which was covered in things and a mess.) I ended up spending the whole day cleaning the porch, then started on the yard. Over a 2 week period I had done the porch, the yard, 2 overloaded sheds, some landscaping, some remodeling, shampooed carpets, And was working on getting all the trash out in our trash. Then just as suddenly as I had felt good, it came back. I can even remember the exact moment. I was bent over scooping tree trimmings into a shovel, and when I stood up everything started spinning. I got the distant dazed feeling, and began to vomitt. I remember my husband coming back and asking me what was wrong, and said I should go lay down.

Now this is my question, does anyone else experience times when they are better and worse than others, that has nothing to do with something they are doing? I would think if this was a matter of deconditioning I would not have "suddenly" reconditioned one morning, and went crazy. No more than in the middle of an activity I would "suddenly" get unconditioned. And I should mention on the days I did the work I literally worked from the time the sun came up until well after it had went down. (I was overly excited about feeling good.) So there was a drastic difference in what I could accomplish, and I had done nothing different.

I am all for getting "reconditioned", and do try. But I just tried walking a short distance the other night. While I felt ok while walking when I stopped it was a different story.

What is everyones here's experience with deconditioning and reconditioning? What do you all think?

[Ernie]

Hi,

Well according to the number 1 syncope specialist, besides having Munchaussen I got deconditioned overnight. The day before I was disabled I danced 6 hours with my husband, which I would do regularly and the next day I was fainting everytime I stood up.

I have to watch my limits and follow them otherwise I get really sick. If I stop my meds I am back to square 1. So in my case there is never a better time. It's permanent and only partly controlled by meds.

[firewatcher]

DING! DING! DING! DING! You just asked the thousand dollar question! Unfortunately there is NO answer.

I talked to 4 physical therapists and two doctors and read numerous articles and guess what, there is NO standard way to assess "conditioning" status for those with dysautonomia. The "normal" ways won't work because they are all based on autonomic reactions in "normal" populations.(HR, BP, etc.) The only way WE can assess our condition (I have been told) is by our daily functioning ability, which will fluctuate daily according to how autonomically screwed up we are at the moment.

That being said, we can attempt to maintain some conditioning by walking, mild/moderate exercise, staying upright as long as we can, and just daily activities. I try to think of it like surfing: we try to stay on top of the wave as long as we can, knowing that it will eventually give out, we'll fall off (crash) or maybe continue to the next one. EVERY doctor I've talked to who knew anything about ANS issues has said this would wax and wane. Some days will be like we aren't sick at all and others (perhaps the next day) will awful.

I am attempting to get as many straight answers to this question as I can from as many knowledgeable sources as there are (not many. )

The best advice for conditioning that I have found is to do as much as feels good at the time, but don't push more than slightly beyond what is comfortable or you will pay through the ANS for it!

working on it...

[all4family]

Hi Ernie, that was me too. Not the dancing, but I was very active, and the next day was sick. Did your doctor actually tell you you deconditioned overnight? That's Priceless!

Hi Jennifer, Thank you, so WHEN DO I GET THE MONEY? At least there are some people out there who are getting this. (other than us) I hope you get some straight answers soon, and share them with us. Would be nice just to jog our way out of this wouldn't it?

Paying through the ANS right now! All to accomplish what someone else thought I should be able to!

Keep on Surfin! (I love your analogy!)

Suzy

[janiedelite]

I'm so glad someone addressed this belief that our symptoms are so largely due to deconditioning. As All4Family said, I have good episodes as well as flares. Last week I felt so good one afternoon that I raked yard debris and filled a huge can all by myself. I was walking a 1/2 mile up and down a hill each morning and evening last week. Then this past weekend I'm so symptomatic that even talking hurts. So was I symptomatic because I'm deconditioned all of a sudden??? I know I'm not in as good shape as I was a few years ago before POTS, and if I laid in bed all the time I probably would be worse off in the end. But our bodies only allow us to do so much!

[Ernie]

Hi,

My doctor did not say it in those words but I did ask him how much time it takes to get deconditioned and I told him that I had danced 6 hours the day before I got disabled. He wrote in his report that I was deconditioned. So I guess he answered indirectly. He was Dr Low's fellow. Can you believe that?

[MightyMouse]

for most of us, deconditioning does not = POTS. In fact, I was a distance runner, competitively, and was still quite symptomatic with POTS/NCS. One can become deconditioned and that will certainly not make matters better for us, but is not usually the source of the problems.

Nina

[firewatcher]

Hi Ernie, that was me too. Not the dancing, but I was very active, and the next day was sick. Did your doctor actually tell you you deconditioned overnight? That's Priceless!

Hi Jennifer, Thank you, so WHEN DO I GET THE MONEY? At least there are some people out there who are getting this. (other than us) I hope you get some straight answers soon, and share them with us. Would be nice just to jog our way out of this wouldn't it?

Paying through the ANS right now! All to accomplish what someone else thought I should be able to!

Keep on Surfin! (I love your analogy!)

Suzy

Your prize comes in the priceless knowledge imparted by this website that the mainstream medical community is overlooking! You only get your full reimbursement when your deductible is met...

[all4family]

Hi Thankful, what you said makes a really good point. You are not in as good of shape as you were a few years ago BEFORE POTS. It would seem to me that more the opposite of deconditioning causes POTS is true. It seems to me that more of BECAUSE we are unable to do the things we did before there is some deconditioning involved. A prime example of someone who is anything but deconditioned is Greg the yellow wiggle. He did dancing and singing everyday for a living, and had to stop because of Orthostatic Intolerance.

Hi Ernie, no. I can't believe that! I am sorry that he wrote that in his report.

Hi Nina, that is good to know. Seems many here were all in somewhat good to great condition. Now I wonder how to get others to understand this. I shouldn't care, but when faced with the question when you can't do something it is hard to answer without someone "solving" it for me. Then I have to listen and act like they are right, and why didn't I think of that.

Suzy

[all4family]

Hi Jennifer,

Hey thats the best spent 1,000 bucks that I never had!!!!!

[yogini]

POTS is a neurological disorder. It doesn't mean that you are deconditioned and not everyone with POTS is. If your condition is severe enough to limit your activity for a long time, you can get deconditioned. No matter what, many of us feel better, see an improvement in our symptoms and get more energy if we exercise.

I agree with Firewatcher that you shouuld just exercise as much you feel comfortable doing and don't push too hard.

And ups and downs in symptoms make no sense at all. They can be caused by anything or nothing!

[Guest tearose]

NO, deconditioning does not = POTS

I finally have developed a visual aid to help people to understand what happens when a dysautonomic/ POTS person exercises like a normal person.

The Paper Towel Theory

Think of a paper towel. Think of this paper towel representing the muscle fibers in a normal person. When a normal person exercises, over time they build up strength. Like adding another paper towel layer over the first, then adding another layer and another layer and they are eventually much stronger.

In a person with dysautonomia/ POTS, the paper towel does not become layered over with additional layers. It instead is being run under a stream of running water. (Our muscle fibers are being over saturated) This paper towel is being worn out by usage. The fibers are getting wet, and worn out and can even break apart with overusage!!! The best thing to do is to stop once this towel is saturated and then be allowed to dry out. After drying out and rest you can use the paper towel (exercise) again. Over-use will cause major tears.

I am certain we all know if we are being active or inactive. As long as we stay active and keep our muscles used and toned, there should be no question about deconditioning.

tearose

[pat57]

8-9 nine hours of sleep are essential for me. Less then 7 and I'm a mess. Also CFS is linked to POTS I think.

[delphicdragon]

When I first got sick and was trying to figure out what was wrong with me, a prominent cardiologist did a tilt table - that was positive - and then gave me some beta blockers. When I went back to him because I was leary of taking the betas (as I have asthma) my positive tilt was suddenly negative and I was "deconditioned". He prescribed exercise and said all my symptoms would go away if I would exercise more.

I have EDS. I have never been able to run marathons or do physical activity that most other people do. I have at one point helped put a roof on a house, built a shed, etc. I hike whenever I can (and it's not too cold). I'm on my feet most of the day at work. I'm not deconditioned! Doesn't mean I don't have POTS.

Sara

[all4family]

Hi Yogini, that is a very good point. Ithink when someone asks me if I exercise next time I will start with that. "It is a neurological disorder". And yes my ups and downs make no sense whatsoever.When I was always being told that it was anxiety I would look for "things" that were causing me to be anxious.. One morning I decided it was the smell of my husbands soap! yep...makes no sense. Thanks.

Hi tearose, that is a wonderful theory and visual aid. And soooooo much of what I feel like much of the time. A paper towel ran through water! That will help me, because I am becoming increasingly frusterated that I can't "fix" this. So I take it out on my body trying to "make" it do what it used to. And all the offers of advice on deconditioning is just making me fight harder trying to recondition. But that is so true, because after I do a lot, I always end up in bed. a LOT!Thanks for the visual. I will also use this when trying to explain. At least to those who will listen!

Hi Pat 57,I have read that about the CFS. And it would make sense. After a body goes so hard for so long it gets tired. I haven't gotten nearly enough sleep recently because my ear hurts, and is stopping me from sleeping. Naps are my friend right now. Thanks.

Hi sara, how frusterating doctors can be when they don't listen to us. Yet they think we should listen to them. It is kind of hard when they don't know the whole picture because they haven't been listening. When I started beta blockers for some severe b/p spikes well before I knew about pots, I started having even more disruptive problems. And the mane one was breathing issues. Up untill that point I hadn't had any trouble breathing. So it is good that you were cautious. I think it is easier for a doctor with a dificult patient to blame the patient. That takes the pressure off of them. Sorry for your experience with that. And thanks for sharing.

Suzy

[turtlefairy5]

Hi Yogini, that is a very good point. Ithink when someone asks me if I exercise next time I will start with that. "It is a neurological disorder". And yes my ups and downs make no sense whatsoever.When I was always being told that it was anxiety I would look for "things" that were causing me to be anxious.. One morning I decided it was the smell of my husbands soap! yep...makes no sense. Thanks.

You may already know about this, but tere might be something to the thing with your husband's soap if you have the Multiple Chemical Sensitivites issue, or whatever it's called.

Amber

[Lizzegrl]

My sister actually asked Dr. Grubb a similar question simply because she wasn't quite sure what to make of the disorder. He was quite emphatic that simple deconditioning and POTS are very different things. In my case, since I am hyperadrenergic, it can happen incredibly fast and I can drop like a stone from functioning to on the floor exhaustion in two minutes.

He said that while keeping physically active in some manner is ideal, i also can't expect my body to just 'recondition" it doesn't work that way. He made a point of saying that all those things that are recommended for maintaining a healthy heart, will make it easier for my body to deal with POTS episodes, but it is not a matter of just working out. It just doesn't work that way in my particular form of POTS. I don't know as much about secondary POTS however.

[Maxine]

Well, I think POTS can cause a person to be deconditioned, but I seriously doubt that being deconditioned can CAUSE POTS.

There is a doc in cleveland that would like to think so, as he does use this excuse as a cause for POTS with many patients. When I went to him, and he tried this trick with me, I just crossed him off the list along with the rest that didn't understand ANS dysfunction.

I was very active, danced, played frisbee--(in fact the champ of the block----all the guys picked me to play because other girls couldn't throw or catch like me)----not on my block anyway----lol. I used to walk seveal miles at a time also. However, I could never run long distance. I danced often, and took ballet and gymnastics for years as a young teen. I was always exercising and walking up until the time I crashed with POTS.

After the POTS crash I became deconditioned, and I've struggled to get in shape since. It's bad to be deconditioned when you have EDS, as it doesn't help the loose joints and ligaments, or the poor vascular tone. I do think some people who are bed ridden for any illness can become deconditioned, but this is temporary, and rehab usually helps people get back to normal functioning.

Maxine :0)

[all4family]

Hi Amber, yes that is definatly something that I feel I have a problem with. I have a very hard time with chemicals. Even natural stuff. I did test positve for something to do with the mast cells, but don't know exactly what that means yet. I called for my paperwork, and am waiting for the release in the mail. Thank you for mentioning that. I knew the soap was really making me sick when I put it on the front porch, and made him change soaps! the silly things we do to feel better!

Hi Lizzegrl, That is very reassuring to know that an expert in the matter doesn't think that it is due to deconditioning. I know that people want to help, but it is frusterating when you feel bad enough about not being able to be who you used to, without someone saying it's so easy to fix. Because believe me I have tried. I can empathize with you on going from feeling ok, to drop on the floor exhaustion. Thanks for sharing the information.

Hi Maxine, I agree with you totally. And really it doesn't make any sense. Like you said you were very active. I am glad you crossed that doctor off your list. It isn't worth your time to spend trying to teach someone what you already know. (and the worse part is that you have to pay them while you educate them.) If it were so easy as reconditioning I am sure that everyone on here would have already discovered that. Look at everyone jump on the turmeric. I just don't think there is much we are not willing to do to overcome this. I am sorry about the deconditioning with the EDS. It just seems to pile up!

Suzy

[jump]

Here's how my doctor explained it to me, and I actually think for once she got it right:

If a person is profoundly deconditioned from, say, being bed-ridden for several months due to a major illness, the deconditioning can cause POTS-like symptoms: rapid hr upon standing, the body has difficulty regulating its own bp. This is because the muscles of that person are so wasted that they cannot aid the blood vessels in constricting properly. This is not, however, "really" POTS, since it has a known cause and a known cure, and it is not caused by some kind of neurological problem but instead caused by a muscle problem. In this case, "deconditioned" is a condition BY ITSELF, and its symptoms are very similar to POTS.

A person who develops POTS, however, may find that their symptoms are easier to manage when they are in good shape, particularly when their legs and core muscles are strong, as these help to keep blood from pooling too much in the extremities. I have found this to be true for me: when I'm able to exercise regularly, my POTS symptoms are not as severe. I used to have hr's in the 140s regularly and occasionally in the 180s without fainting; my doctor said this was probably because my heart was already very strong from my previous life as a distance runner, and that if I had been a non-athlete who developed POTS I'd probably be fainting when my hr reached that high. Being well-conditioned didn't keep me from getting POTS, but it made my symptoms more manageable.

She also said that when a person with POTS hits a rough patch, their symptoms often prevent them from exercising very much, which in turn can lead to deconditioning of muscles --- which in turn can make POTS symptoms worse. But in this case, deconditioning doesn't CAUSE pots -- it only can possibly make symptoms harder to manage. But, since deconditioning and POTS have very similar symptoms, it would be really hard to tell if a person with POTS is, in fact, becoming de-conditioned (unless they had visible muscle wasting).

She recommended that I always try to keep some kind of exercise routine going -- whether it's walking or even hiking slowly on good days, or just lying on my back and doing leg-lifts on bad days, or just flexing and tightening my muscles repeatedly on really bad days. I have found that pushing myself to exercise even when it's a little uncomfortable ultimately makes my symptoms lessen -- but pushing myself TOO MUCH into the uncomfortable zone will send me into a few weeks of much WORSE symptoms. So it really is a balance.

There have been times when out of the blue I can't go for a walk or do much of anything without gasping for breath and feeling like I'm going to die. Then, seemingly for no reason, I'll have other times when I can go for regular half-hour walks without much of a problem. I try to keep up some exercise when I can, but only because it helps me feel better, not because I think NOT exercising causes POTS.

[heathmcev]

Jump, I think you've got it. Your words, and Tearose's paper towel theory are fabulous. Not to mention really helpful aids in figuring out how to talk to our doctors & family members who aren't quite getting it.

Before I started getting POTS symptoms I was in the best shape of my life, working out w/ a personal trainer, working long hours at my job, etc. I had more muscle than I had had since high school. But I started to get such crushing fatigue that i could barely walk a block without having to sit. Since then I've definitely become deconditioned and some days just walking the dog is like torture (good thing she pulls like a sled dog... I just let her do all the work & drag along behind her!). We just got a Wii Fit at our house, though, and it's fabulous! There are a lot of easy standing-only exercises -- almost all of the yoga poses are standing only. I do get dizzy w/ the bending ones, so only do those on the days I'm able. There are also balance & strength exercises. I pretty much ignore the aerobics unless I'm in an unusually asymptomatic period. I've found it to be a gentle, fun, and personalized way to do what I can here and there. I may last 5 minutes... or 45 if I'm lucky.

all4family, since I've been on cymbalta I've had a few times when I've had crazy unnatural energy like you described in your first post. It's pretty rare - but I'm having 2 or 3 days like that now (although as i say that i'm getting dizzy). It's kind of like winning the lottery and getting a day or 2 to feel productive and quasi-normal. I'm soaking it all in now in case it slips away later

[Lizzegrl]

Jump - Your doctor was echoing what Dr. Grubb said to me. She hit it right on the nose. Write off the doc that doesn't understand the difference. I am to the point that I will be able to do some very gentle exercise soon, and I know it will be hard, but I want to do everything I can to give my body a boost. I hate being out of shape. I was an athlete and gymnast off and on as a kid and having a weakened body drives me nuts! I keep getting in trouble when I exercise however because I want to go all out, and do what I used to do. That doesn't work so well, and I injure. Gentle exercise and me aren't on the best of terms. What do you do with the Wii Fit?

[all4family]

Hi Jump, thank you so much for that. That really does give a good explanation to Pots, and deconditioning. It really is a balance, and one that I am having a hard time finding. I laugh because I punish my poor body for not being able to do things it used to by forcing it to go, and in the end the only one who suffers is me. Maybe I will print that out(this whole subject out for that matter, lots of good posts on this), and the next time I try to let someone effect my way of thinking about it I will read it and remind myself it's not a defect in my behavior. Thanks a lot.

Hi dizzyde, I like that winning the lottery analogy. That was how I felt to. yee haw! I'm free I'm normal again. I hope it doesn't slip away for you. I have a wii fit too. I have a love hate relationship with it. It judges your age partly on your balance, and I have none. It said I was 73 years old! I'm only 37! But I like the exercises on it! they are fun, and I am hoping it will give me more balance.

Lizzegrl, The wii fit is really a lot of fun, you learn balance, and get fit all while having fun playing a video game. here is a site on it.

http://www.nintendo.com/wiifit/launch/?ref...+fit+what+is+it

Suzy

[heathmcev]

Hi all4family... i totally know what you mean w/ wii fit... I basically ignore the body test function now (beyond the first time, when you *have* to do it). It said I was 58 or something the 1st time (I'm 33), then 37 the second time which was a relief. If I just get on there and do the exercises I like, then it's a positive experience & i don't have to dread seeing my weight or "age" on display! Love it when a new exercise gets "unlocked"...

[Katja]

I have distal autonomic neuropathy. We're pretty sure that this is why I developed POTS, though I've also seen a geneticist and rheumatologist who both think that I have EDS, as well - so there may be multiple factors, but deconditioning is probably not one of them (I've never had bed rest, and was quite active when I first developed/re-developed symptoms). This is why I'm very glad that my doctor didn't just do a TTT, since the other tests he ordered make it more difficult for less knowledgeable doctors to assign their own causes .