Exercise Even If You Think You Can't!

[Leigh]

It definitely takes a commitment to never give up trying to exercise. Admittedly, I sort of boycotted this forum for a while because, in my experience, people were ultra negative. It seemed that every time someone tried to shed light on POTS, there was someone replying to beat them down saying, "You must not have it as bad as I do." It's nice to come back to it finding more positivity. YES it takes sooo much work to beat this, but you CAN beat it. A condition by definition is temporary. This is not a disease---it's a condition.

It's easy to feel like giving up when you feel so awful with exercise. I started out only able to stand up for 5-10 minutes before passing out, but I exercised until I either had to lay down or was forced (by passing out). I was even kicked out of my gym until I had a dr. release because I was a liability.

Chronic fatigue makes a lot of people on here say exercise doesn't work for them, but I can attest that through persistence and patience exercise is the KEY to beating this in the long run. It took many many years, cardiac rehab, and tons of patience, but now I walk half marathons! Strength training in the legs is absolutely necessary as well as retraining your heart to stay at the target. My HR was over 200 for years and now it's normal when I exercise.

Every day I go to the gym and literally thank God for my second chance and the ability to move my legs and stand up. You can say you're too tired, too POTSy, or don't have the time to exercise, but I don't think my improvements would have happened without it.

Everyone's story is different, and I respect that wholeheartedly. I just wanted to put it out there. I hope to motivate those who think exercise won't work for them that it took me SO long to adapt, but turned out to be the best thing for my heart, bp, fatigue, etc...

If you need a workout buddy in Mason, OH let me know! I have an awesome Dr. too!

[jangle]

Leigh im really glad to hear you've had good success with exercise. In relation to negativity I don't really know anyone on this forum who just wallows, but I can certainly understand being in pain brings out the negativity sometimes. And that's alright that's ok we all need to vent this stuff out sometimes and share the bad with the good. This condition is awful no doubt and sometimes it gets the best of us.

[Ashelton80]

Leigh,

Thank you so much for sharing your encouraging story! I actually stopped coming to this forum over a year ago because I was experiencing the same reactions. Lots of people on here were very defeated and negative (understandably so), but the mention of some things that were helping me that didn't include meds and I was immediately shut down. Especially if I mentioned that I was doind Levine's protocol. So naturally I didn't visit for a year and now that I have come back you are right, things are so much lighter, positive and open here!

I have also seen first hand the benefits of exercise. I had a really good year last year! I am in awe of your persistence and applaud you for your effort. LOVE hearing success stories. Funny thing is, I am hearing more and more of them. The common denominator in almost all the stories....Exercise. Take care!!

[misstraci]

Thanks for coming back to the forum! I'm happy to hear stories like yours. I wish I lived near you becuase I'd definitely take you up on the workout buddy thing. I'm so happy for you and feeling good. You make me want to keep trying and never give up. I like the way you say POTS is just a condition and that conditions improve.

Thank you!!!!

Traci

[brethor9]

Hi

Thats great that you have had such great luck with the exercise! Perhaps why so many people are doubtful is there are a lot of us who were very athletic and active when we came down with this condition, including me.....I used to work out 2 hrs every day and ran almost 2 miles....but still came down with POTS so not exercising was not the cause of my deconditioning. In fact I just found out that I suffer exercise induced urticaria which can cause anaphylactic shock..so I have to be very careful ..... I think it is good for all of us to remember that POTS is a syndrome and that there are many underlying factors that can contribute to it....deconditioning is just one of many. We all need to remember that what works for one patient may not work for another and every background is different but to always be respectful of others experiences keep up your hard work and I hope you stay healthy

Bren

[issie]

I'm just reading this today. But, because of Jangle's persistent encouragement and being so positive about exercise and not being pushy about it. Him telling us to take it at our own pace - but, just to do SOMETHING. Has really motivated me. THANKS, JANGLE! It even reinforces it more reading your success Leigh. I started two days ago, walking on an eliptical. I have a long way to go - but, it's a start. I also have a bike (new present, to me) and I hope to be able to ride it more. There is always a begining to any journey and I've taken the first steps to getting there. Hope others follow suite.

Issie

[HopeSprings]

Yes Issie! I loved Jangles post the other day about jogging for just ONE minute to start - and then building from there. It was inspiring because it makes the whole thing seem much less intimidating.

[jangle]

Yes Naomi and admittedly progress was slowest in the first few weeks. I ran in a forested area so I marked my progress by trees. "Ok, let me see if I can jog to that next one" etc. etc.

Jogging can get very boring, that's why I suggest selecting your scenery and/or music wisely.

[songcanary]

I notice that you do yoga. In my case, I think that is what type of exercise that has helped me the most. I was very fit over all before getting sick, but strengthening my legs has been very beneficial. Now I take a yoga class three times a week, and I've just recently started back on the elliptical, yay! However, I was way too weak and nauseous to do that, or anything, before starting doxepin and forcing fluids. So I would have to say for me it was the combo. The meds helped me START the exercise and the exercise has kept me improving. I don't have POTS, though, so maybe that's a factor?

I am so happy to hear your success story, and the fact that it took eight years is inspiring. It is kind of you to write because we all need that encouragement. Best wishes and continued good health to you!

[corina]

i'm really glad you're back leigh and ashelton and very happy that exercizing has helped you so much. i do like to add though that it exercizing just is not for everybody here. i've found out myself when i tried really really hard at rehab about 3 years ago. after trying and pushing for about 9 months my pt's and doc at rehab told me they wanted to stop as there wasn't much progress. in all that time i was able to walk 1 minute and 30 seconds, started at 33 seconds. i couldn't do any swimming and wasn't able to wheel myself around. but i tried.

last year when i started octreotide i was admitted at rehab again and now i could do the walking, swimming and even biking, i made such progress. i am really really happy to have some kind of life back, but honestly i needed to let you know that no matter how hard we try exercizing isn't a cure for everyone.

thanks for your positiveness, i really like that and glad you're back!

Corina

[jenglynn]

Your story is an inspiring one and I think it is very thoughtful to take the time to come back and share your success and your key. That is a powerful motivator for those who are capable. Especially after stating you had a lot of negativity before. Everyone of us I'm sure loves to hear a "How I got Better Story!!!" I know I do!!!!!!

I must say, though that it can be discouraging to imply that exercise will "cure" all of us. Many on this forum do not have a simple case of POTS, and there is a lot more to my autonomic neuropathy that any exercise will cure. Believe me, if it were so simple I would have never developed it in the first place. Despite having symptoms all my life (began having syncope as a young child) I have always been active but noticed how much harder it was for me vs. everyone else.. Yet I persisted and was very active and fit (fighting my body every step of the way) until I ended up in Mayo Clinic for more than 2 weeks inpatient with organ shutdown in Dec. I did not have muscle atrophy and I was not de-conditioned. I also have a still undefined connective tissue disorder (which makes certain exercises actually dangerous to me and explains all of the severed ligaments and dislocations of many joints I've suffered along with numerous surgeries to repair them- most occurring during exercise in one form or another ) and a yet to be defined extremely aggressive autoimmune disorder (so aggressive that I had an anaphylactic reaction and rejection of IVIG, which many people tolerate without too many issues- still dealing with acute kidney failure from that 7 weeks after my last infusion) Yet on my lenghtly diagnosis list, POTS is there. Everyone here is different with different struggles, conditions, or actual diseases. According to my Mayo doctors, all of my afflictions- meaning autonomic, autoimmune and connective tissue were issues I was born with and are chronic. They aren't going anywhere, unfortunately.

That said, I applaud your success and your motivation for everyone to get some exercise.. Start where you can and build from there. As long as it is done safely and a doctor has approved your regimen- I think only good can come from it. Jogging for me at this point, or even walking, would be out of the question. I hope someday this what I hope is a "flare" will fade and I can begin a more functional life. Hard to do that with a standing BP of 40/20 and syncope after 30-60 seconds ( not to mention Post Concussion Disorder after 8+ concussions). And yes, I stand every day, with assistance, and have for several months- faithfully 5x a day- right next to my bed to fall when I do. ( After all these months, my orthostatic numbers have not changed) I do leg exercises, recumbent bike, and resistance bands everyday- and I'm still where I began. But despite being mostly bed and wheelchair bound, and I do lots of crawling, my muscles are still staying strong. I'm not giving up because someday I hope to be able to say I am where many of you are, but I just can't believe in my case exercise will get me there. But I am so happy for all of you who ARE able to find themselves feeling better or "cured" with increasing your exercise.

[Leigh]

I agree with many people on here that everyone's situation is different; however, I wanted to make sure to say that many doctors also tried to tell me that exercise was hurting me. I've discovered that there are a lot of doctors who don't like to admit they lack understanding about POTS. Like Jangle, I started out just minutes at a time and refused to take no for an answer. I was wheelchair bound as well and my body went into shock any time I stressed it with heat, exercise, anxiety, etc...

It took years of maintaining a daily checklist of wellness that didn't necessarily include medication. My instincts kept telling me they were prescribing me too many drugs and giving me wrong information. Using my own logic about blood volume and the sympathetic nervous system as well as finding a doctor willing to try unconventional methods turned out to work miracles in my life. Hydration, exercise, and stress therapy help realign the nerves and redirect blood flow.

The common denominator is that "I can't" should be removed from your vocabulary. Easier said than done when you go from being an active, vibrant, young person to feeling like you're 90, I know!! I feel for each and every one of you because that's exactly how I felt year after year. POTS ruined my marriage, my job, my life--I wasn't going to let it take the best years of my life. I rejoined this forum to try to make a change. I didn't realize the impact POTS had made (I had gotten to the point of accepting my fate as a slow, dizzy, tired person incapable of most tasks) until I got my peripheral vision back one day and realized I had been literally staring down a tunnel for years and walking against walls!!

Sometimes I lay in the sauna (never could before) after my workouts and weep. It's difficult to express to you here that these stories of how it won't work for you were once my story. It DID work for me, and I wholeheartedly believe it's the answer for everyone. I also respect the urge to disagree with me because I don't know you or your background.

I challenge you though to try to imagine the possibility that you may not be giving it enough time of doing it every single day even if you receive bad results for a while.

[puppylove]

I am very happy for you! It is wonderful that you found something that has worked so well for you! I agree that exercise is a very important part of recovery and I am trying to incorporate in to my treatment plan.

[AllAboutPeace]

I read this post after doing 15 minutes on the recumbant bike this morning. I pretty much rolled onto the floor and stayed there for at least an hour until I was able to lift my head up. It's hard to find the balance of how hard to push yourself. Thanks for the extra motivation!

Now if I can just keep my Labrador Retriever from trying to sniff under the pedals while I'm biking...

My doc looked into Levine's program for me, but last week when he was getting my supine/standing heart rate/ blood pressure (which he has done a few times before), my resting heart rate wouldn't go below 95 so I didn't qualify. I couldn't believe it!!! My resting heart rate is low 60's (or 50's). It was a crazy one time ocurrance - hasn't happened before and hasn't happened since. I was crushed! So now, I'm trying to figure out my own program and I will be trying to learn from all of you.

I am new here and I have to say that I have been inspired by all of your stories - your courage and strength is amazing! I've been reading lots of posts over the past few weeks and I can't even express how comforting it is when someone else puts into words what I have been feeling. Thanks for sharing all of it!

[Leigh]

I never meant to suggest anything would be a cure all. I am merely saying that I also thought it was impossible for me. I also had to crawl on my hands and knees or remain in bed. People also told me it wasn't going to work.

I respectfully disagree that exercise would fail anyone in the LONG run. Hopefully putting it out there will help some people and others can just disregard it if what they're doing is working without exercise.

Private message me if you want more information or help in this matter because I probably won't continue to read the argument that has started here (for my own well being). Good luck everyone on your path to wellness!

[jangle]

First and foremost I want to say that since I joined this website I have discovered a whole new world of POTS. Technically Jenglynn, Corina, and I share the same diagnosis of POTS, but even at my worst I never had the same struggles as Corina or Jenglynn. I have never passed out and never been limited in walking etc. I don't think it is kind for us to charge that exercise can cure all and I certainly don't make that statement. I do believe that for people with similar conditions as mine that exercise can improve them. But we're all struggling with this thing that no one knows what causes, what happens etc. etc. so we have to be sensitive to the idea that what works for us might not and in fact might be dangerous for another.

I can't even imagine having POTS with the intensity that Corina and Jenglynn have had to endure. My miniscule POTS in comparison has been enough to severely drain me of vitality, to have to go through the extended pain is not something I think I could withstand. I'm very happy that Octeotride has helped you Corina, and I hope that perhaps we can work together and find other therapeutic options that can carry the baton a little further in the way of alleviating POTS.

[HopeSprings]

Jangle- curious ... you said your heartrate is down since exercising. Any other symptoms getting better?

[anaphylaxing]

I agree exercise is wonderful and important.

Just a caution do those of us with MCAS as the cause of our POTS as exercise induced anaphyalxis is not to be taken lightly and if your allergy symptoms are exacerbated by exercise then you need to take extra meds for it and bring your Epipen with you. Exercise is not a trigger for everyone, but for me it is. That said, a marathoner and workout nut before I got sick, I am trying to slowly rebuild activity within the limitation of my anaphylactic tendencies as I think it is key for cardiovascular health.

Everyone's battle is unique and pushing as much as we can in the face of adversity is to be commended!

[jangle]

Naomi my lightheadedness has been oscillating. Before it was always constant but now im getting periods of time of immense reduction. Right now I feel 90% of my lightheadedness is gone. Now how long that will last I don't know. Also my vasovagal/ anxiety attacks seem to not be as frequent. Im still a work in progress but im definitely noticing an improvement.

[ramakentesh]

A condition by definition is temporary. This is not a disease---it's a condition.

Sorry but POTS most definately is a group if diseases with measurable etiologies. A condition suggests that it is a state that one finds themselves in through their own actions or through the suggestion that all patients are deconditioned. There is now volumes of evidence that suggests that their are biological basis for the altered hemodynamics and baroreflex sensitivity in the varied forms of POTS.

Im very glad that exercise has worked for you and I definately agree that many POTSies worry about doing it or think that because it makes them feel bad initially that its dangerous for them. ive always exercised with POTS before, during and after my relapses and it definately helps to a degree. However medication for some pateints. Ofcourse these illnesses can have spontaneous improvements that people often attribute to what ever activity or regime they were on at the time.

I think exercise is probably the most important treatment option for POTS. The research suggests that. But I also think that because this is a group of disorders rather than just one, one experience cannot necessarily be attributed to everyone.

The 'I cant' part of your post Im in mixed minds about. For me Id agree that when i have pushed through or ignored POTS ive generally improved faster but Ive known people with SEVERE symptoms that were far worse than mine and i think a whole set of different rules and probably etiologies apply to those cases. You cant automatically attribute your success to them.

[ramakentesh]

I think your probably right in your assessment of these forums.

[blueskies]

I, too, think everyone is different. That what works for some does not work for others. Heck, what works for me one minute may not work for me the next.

[rubytuesday]

Having fibromyalgia and osteoarthritis, my orthopedes, physiatrists and rheumatologists have told me that no exercise was not an option. My dilemna was when I could no longer be safe on my bike that I rode 10 miles every day, or on my treadmil. When I might lean forward on my bike to go uphill, I suppose it was like bending over which is restricted with my orthostatic hypotension. So I bought a new stationary bike but my cardiac specialist in dysautonomia told me that with fewer warnings of faint that I should do recumbent stationary bike only. I can feel perfectly fine and be in a store and get very near syncopal really fast. I do make the bike a part of my daily regimen though. If there is a problem with weak muscles and vessels in my legs, I at least try to keep them functional. I haven't been able to add resistance due to pulmonary issues, but I ride watching the morning news 25 min./day. I've been very blessed to have good doctors who encourage exercise.

[E246]

I too took heart from jangle's post and research article. I have been told repeatedly not to exercise or if so gingerly. This has put me off. I have also been dissatisfied with the general medical helpi have received like janglebut so i have started to exercise and I feel GREAT today. Been on an exercise bike for a few mins a day and returned to swimming today. Used to swim 3 miles a week and been scared off by the doctor. Also was discouraged from working - so glad i ignored this - instead i have built up my company.

Yes there has been a positive up turn on this website - seems like alot of us have arrived there together.

One interesting point though - the professor I see has been part of a research program that supported the theory that those who had counselling to come to terms with their symptoms did better than those who didn't. I think he whole approach has been wrong and I am leaving it behind.

Thank for all these exercise posts!

[jangle]

Well this morning I wouldn't be able to be diagnosed with POTS. My supine HR was 75, my standing HR was 80. I felt only a slight signal of lightheadedness.

Unfortunately now my HR is back up in the high 90s low 100s this afternoon. I definitely seem to be oscillating. Better at nights and mornings, worse in daytime.

Still please be cautious with exercise.