Bed Rest May Make POTS Worse. Exercise Has Helped Me.

[Lemons2lemonade]

http://www.nasa.gov/mission_pages/station/research/experiments/Integrated_Cardiovascular.html

I feel it is important to recognize that prolonged periods of bed rest can create orthostatic intolerance in even healthy individuals. Also, lack of exercise can make anyone have a tough time getting around. All pots makes me want to do is lay down. But it wasn't until I started pushing that I started seeing results. This doesn't mean we have to run marathons, only challenge ourselves a little more each day. This plan has worked for me and I hope that you can discuss it with your doctor and that it will also work for you. Down with pots!

[lfreem02]

I am really hoping that exercise is what finally helps me to get past the lightheadedness. I have been forcing myself to walk across campus to meetings at work, do some type of daily exercise, play with my daughter, and push myself to do housework as I would normally. There are a lot of times that I feel like I am getting close to passing out, but I am learning what to do to get through it. I was in the hospital for 10 days when I was 19 due to a car accident. I had to have a portion of my liver removed, so I couldn’t eat or drink anything for the first few days. I didn’t expect to be so weak after such a short period of time. The nurses told me to focus on something to help with the dizziness the first time I moved from the bed to a chair, and it was a huge help. I slowly started walking after that, and was back to college classes full time within a couple of weeks.

Unfortunately, many doctors make the assumption that inactivity caused the issues we are having. I was very active prior to my symptoms. I was Christmas shopping, bought a new car, and was keeping up with my daughter on Christmas vacation when my symptoms started. I almost gave into my symptoms and did stop exercising for a month or so, but started back when the doctors told me it was safe. My symptoms are not as bad as many on this forum, but I do think pushing myself has helped me keep from getting worse. We are very fortunate to have the internet, and a lot of helpful information available to us to know that activity from the start is important to get through this.

[jangle]

If your POTS is similar to mine ifreem02 then exercise will improve your lightheadedness. For me I found jogging to be the most effective intervention, but currently I'm on a bulk phase in weight lifting so I've stopped jogging.

I'm testing to see if lifting weights might be even more effective as it directly turns on the vagal nerves + works skeletal muscle pump.

[Ashelton80]

Exercise is definitely key for me as well. I seem to need to do both the aerobic type and the weight lifting or resistance training. I think the resistance training actually helps me more than pounding 30-40 minutes on the bike. The only thing I'm confused about is after I reconditioned last summer I took a break from exercising and gradually all my Pots symptoms that had gone away returned. At this time I was still functioning fairly normally and had not spent a day in bed in months. Why do we decondition so quickly?

[brethor9]

I am really glad to hear you are all making headway but I am just curious have you all just been diagnosed with primary POTS or secondary POTS? do you have any underlying conditions ie MCAS , neuropathy?

[McBlonde]

Being 25 y/o and having a dx of "simple POTS" is one thing, but characterizing all of us as needing to get up and exercise to cure ourselves is insulting. Maybe that's not how it was intended, but that's how it makes me feel when I read threads like this. I have more medical experience that you are old.... If I could have exercised or pushed my way through this life altering disease, I would have been cured 12 years ago.

[Anoj]

i have gone through three 3-month cycles of exercise with a personal trainer who was educated about my condition. it did help, but it didn't cure me. it's frustrating. i'm in a lazy phase right now, which is my own fault, but after trying and trying and trying to diet and exercise and take care of myself, and going through a horrible 3-month period of zoloft withdrawal and then re-acclamating to it, i'm not motivated. i don't know what it will take to get me back on track.

[Ashelton80]

Anoj, I am right where you are at the moment. I know the things that make me better and I'm not doing them. This condition just wears us down. I get tired of fighting and pushing. My husband hates when I say that and I know I will get back up and fight again, but it's the honest truth. I don't believe I'm going to be like this forever. I truly believe I will live a great life without disability one way or another.

[brethor9]

OK....I think it really needs to be stressed that POTS is only a syndrome made up of various symptoms. Every patient's ANS is affected differently based on what is underlying and causing the symptoms whether it be viral, MCAS, neuropathy, EDS, autoimmune, familial, etc. therefore every patient's treatment and recovery is going to be different. Age is also a factor....younger patients have a higher recovery rate. The subject of being deconditioned is a touchy subject for the group of us who have been suffering and struggling with these symptoms for many years despite being in good shape and pushing through. We are likely the ones with secondary POTS caused by something more complex..... I do truly think it is great for the ones who have been successful with exercise more power to you!..... but thinking that every patient can just push through and exercise and they will be cured is misguided and hurtful to patients who really have tried everything and still struggle....

[AllAboutPeace]

I think the idea of "wanting to lay down" and "needing to lay down" are different concepts that need to be looked at. I do have simple Pots - my EP tagged on "electrical problems" with my heart, hypotension and vaso-vagal effects, but personally, I consider those under the POTS umbrella. In the Changes video the stats indicate that 25% of people with Pots are severely disabled and are unable to work or function enough to perform basic household activities. I think it's important to figure out approximately where you are on the spectrum and how that could affect outcomes of certain activities (i.e. exercise).

Many months ago when reading about exercise on here, lots of people were talking about "pushing through" the fatigue, symptoms, etc. That concept meant nothing in my world, there was absolutely no pushing through for me because my body simply couldn't tolerate it even at the times that I felt I had the energy to do it. That is not for lack of determination or will to get better - just a physical fact. Anxiety or fear does not limit me, but my physical ability definitely does. After 9 months of this, I'm appreciating the fact that since last month I can actually remain upright to brush my teeth! I agree that we need to challenge ourselves, but those challenges are going to be completely different for all of us. It's all about knowing yourself and knowing how far you can push and when {as if that is something simple to figure out }

I'm definitely not anti-exercise, because I have always been a physically active person and truthfully one of the hardest things about this whole thing for me is trying to accept the fact that I can't be playing baseball, football, soccer, tennis; biking, hiking, geocaching, etc, etc with my son - that is the stuff I live for.

As I mentioned, I believe whole heartedly in the benefits of exercise, but I'm not sold on the idea that exercise really is anything other than a temporary fix for Pots - (at least for some people). Many of us were active when it first came on and we all have heard stories of those who relapsed while continuing to exercise. There are those who do the 3 month program and whose symptoms come back as soon as they stop - wouldn't that indicate that it is more of a band-aid than a cure? {Don't get me wrong...I would gladly take a band-aid right now...} I also don't want to be negative about it, but I believe our potential "fixes" are as complex and as individual as we all are. If exercise is working for you - that's wonderful !! It is an accomplishment for anyone with Pots !! I would be doing it if I could...

[anna]

I am always happy to hear folk have been able shake off this condition one way or an other it gives every one hope, but I do get a tad concerned when I read how POTs is simply an issue of de conditioning and if we all got up and really push yourself you will be cured!

This may actually be correct in some cases, but I see from this forum and a number of others that their is much more to it than not pushing ones self.

It would be so sad if all the folk ill with POTS and a like, end up being marginalised by society as lazy good for nothings. Then founding for research into all this gets moved else where when a real cure or understanding of this condition could be just around the corner. I want to hope that my children's children may be able to live a life without this condition blighting their life.

[puppylove]

This is so ironic because I just spoke with a POTS exercise specialist who works with Dr. Abdallah yesterday. He said that exercise is an extremley important part of recovery, but it's different for everyone. He makes people plans that will work for them. Maybe it's running three miles everyday or maybe it's flexing your muscles while sitting in bed. He said the most important part is not to do too much, that will set you back.

[brethor9]

Peace you sound just like me! I have done my damnedest to push through but the body just physically doesn't allow it...period. In my own case; my allergy specialist said I have exercise induced urticaria that if I pushed it could actually turn into full blown anaphylaxis (scary) so in my world it just is not going to happen right now ....**** I am pleased with myself if I manage to get a couple of loads of laundry done lol.... I agree that we need to do our best to move around....but I am running a marathon just doing the basics most days

[yogini]

I am much, much better thru exercise, but it is different for everyone. Like you i had to push through some discomfort/inertia to force myself to exercise. I tried a lot of different forms and to,erated some better than others some made me downright sick. To this day I can't exercise in an upright position. I am almost totally funtional, but still dependent on meds and have symptoms sometimes. I dont think everyone can exercise their way out of POTS. A lot of people here "push" themselves to exercise, but it doesnt help them at all. Also, I don't think most people with POTS are on bedrest. So it is very complicated.

[Lemons2lemonade]

I am not saying that exercise will cure pots. Only that inactivity will make symptoms worse in many patients and many normal healthy individuals as well. I know just as well as everyone else on this forum does that deconditioning did not cause my pots. However, it is an effective way to reduce symptoms in SOME. When I saw Dr. G at mayo he recommended exercise. The bottom line is that muscles in your peripheral system help with blood pressure and circulation. Muscular atrophy certainly is not a way to increase endurance or reduce heart rate in any individual healthy or not. Moreover, exercise is subjective for all of us. Some of us may be able to run a mile others may need to just sit up during the day.

[Birdlady]

"If You Want To Get Better You Have To Push. Exercise!"

I think that's a bit too simplified. I know for me, for the first 6 years when my POTS was undiagnosed, I did as much pushing for as long as I could until I couldn't do it any longer. My doctors told me I was crazy and I was making my symptoms up, so I just went on living my life because they made it sound like everyone had these symptoms. I went to college full time and also held a full time sales job and was about as "normal" on the outside as one could be. But then around age 22 is when things got much worse and I had to quit work, school, exercise etc.

I'm not lying in bed all day...How many of us are? However if my heart really gets up there (170 is normal for me), I will lay down for 5 minutes and then get back up to resume whatever I was doing.

I could not follow one of these programs that include jogging or intensive spinning or rowing, weight training. That's entirely too much. I've tried doing 10-15 minutes on my bike and within a week's time, I'm spending more time in bed because of the crashing that occurs after the exercise.

As someone said in this thread, doing a load of laundry is a reason for celebration. I'm thankful my husband is understanding with all of this! Even the most deconditioned person can do laundry and basic house chores. My reason for not doing them is not laziness.

Everyone should really talk to their docs about it and listen to their own bodies.

[kalamazoo]

I've tried running, walking fast and even lifting light weights but my heart rate just goes entirely way too fast so I have to stop because I become out of breath. I even become breathless just getting out of bed in the morning from my racing heart when I stand up and forget stairs, they are the devil.

[Millerla]

Oy, this, and the doctor telling me to not take naps have been the hardest things for me to do. It also usually makes me feel a lot worse, which, I'm sure will change eventually, but it's hard to do something that makes you sick(Exactly why I have troubles eating enough).

My mom is overweight though, so this has been good for the both of us. I haven't been very consistent with it quite yet, but I'm working on it.

[yogini]

We all know that exercise helps many and deconiditioning makes people worse. I am not sure how many of us are really deconditioned - the way you would be if you were bedridden. Because it doesn't seem like most are bedridden or wheelchair bound.

Also, many push and don't get better. those who are trying and not getting better feel like they arent trying hard enough, which is not the case. I am in the middle because I have improved a lot through exercise (mostly yoga) but i have trouble with cardio. I can work ful time, but could not do dr levines protocol if my life depended on it. And despite all the years of exercise I still need meds. So I understand where others have "pushed" but not improved are coming from.

[DoozlyGirl]

Congratulations to anyone who has figured out what works for them. Most importantly, I have figured out what doesn't work for me.

I have gone into anaphylaxis from excercise/heavy activity, known as post-exertional anaphylaxis. I have had many physicians tell me to be patient - that we must first figure out why and fix it before I can safely excercise. I have recently been confirmed to have MCAS and my mast cell specialist told me it will take a while before my mast cells will allow me to excercise without symptoms. I first have to stabilize my mast cells with antihistamines and other mast cell medications.

So while excercise is beneficial for some, it could be life-threatening for others. One size does not fit all.

[Frugalmama]

Yes, this is such a tricky topic. Like doozlygirl, I have mast cell disease (systemic mastocytosis), and any kind of physical activity (including standing for a couple of minutes, walking for more than a couple of minutes, lifting anything, etc.) causes anaphylaxis. So exercise is definitely out for me right now . But I am thrilled to hear that so many people are seeing positive effects from their exercise routines - even 10% improvement can be huge in terms of quality of life!!

[friday7]

I understand you're point lemonsintolemonade. You found something that worked for you and you're wanting to share that.

I think you have to understand that a lot of us here have been through a lot and are very sensitive to people saying you have to push yourself and things like that. It's just a lot of us have had people very callously say things like us to us.

It makes you feel like you're somehow causing this or like you could get well if you'd just push yourself. And when people say this, well it just produces feelings of guilt and frustration.

I do get it though. I don't' think it's you're intention was to hurt anyone. I just know this is a sensitive issue for me.

[Chaos]

All I can say is I had three very complicated pregnancies with prolonged bedrest. The last one was 5 months of bedrest and guess what? I DIDN'T have POTS at the end of those pregnancies. Yes, I was weak and felt lightheaded, tachy etc when I stood up. Yes, it took some time to "get back on my feet" but that wasn't the same as what I'm dealing with now at all!

The day I got sick and became "disabled" with POTS, I taught a yoga class in the morning and took a 2 hour advanced yoga class in the evening. Had a fever by the time I got home from that class but have never spent a whole day in bed even once since that day 3 years ago. I exercise regularly (modified as needed based on my symptoms on a given day) and progress my program as prescribed by my POTS doc but I'm getting worse overall....not better.

There is no one who wants to believe that exercise is a cure-all more than I do, but if it were....I'd have been better 3 years ago. Frankly, the more I "push", the more I set myself back.

[Lemons2lemonade]

Thank you, Friday. If someone told me to exercise a year ago (which they did) my response would have been "I can't." I spent 2 years of my life with this mentality. It's not like I got off of the couch one day and said, " I know! Forget pots! I can do this." No. It was a year of torture and fallbacks and basically for lack of a better term: ****. Every day it felt like I was going to die. Every day was like starting over from the beginning again-there were no short term rewards to motivate me, only suffering with no end in sight. Exercise brought on the worst of my symptoms. And exercising made me worse. I can't count the number of times I hit the wall or was demoralized or felt like I couldn't do it. It was hard. In fact pushing through this illness is one of the hardest things I have ever done. But the reality is that I could and I did. This may not help all but my hopes are that it may help some.

[yogini]

Lemons, you are right. There is a certain amount of pain you have to go through with exercise. I had headaches/migraines and nausea. I would have to come home and sleep for hrs. But I slowly started noticing that I could exercise for longer with fewer of these symptoms. Some never see these benefits, but some might if they stuck with it.

It is the same thing with medication. Sometimes you tolerate horrible side effects for a few days or weeks before your body gets used to a med. or try a few different kinds of beta blockers or SSRIS until you find one that works. It is brutal and easy to give up, but in retrospect really worth it.