Any competitive swimmers out there? Need tips for training & competing with Dysautonomia

[Elaine K]

Hello!

Although I have been living with a variety of seemingly unrelated symptoms for thirty years, a bunch of negative tests ultimately led to a diagnosis of Dysautonomia.  I have been referred to Dr. Howard Snapper (Board Certified in Autonomic Disorders); however, the wait time for new patients is 6 months!  My appointment isn't until February, so I am working with my internal medicine doc to try to manage my symptoms in the meantime. 

Are there any competitive swimmers (or serious fitness swimmers) out there?  I would be interested to learn how you cope with your symptoms, and I'm open to any tips you can share.  I'm a 59-year-old Masters swimmer with USMS, and I am finding I can no longer do repetitive race-pace training without suffering repercussions.  I'm constantly monitoring my heart rate now and having to keep it under 80% of max. heart rate to manage the worst of my insomnia symptoms at night.  Frustrating!

 

Thanks!

Elaine

[Jyoti]

So sorry to hear of your diagnosis, Elaine.  And welcome to the forum.  Hopefully someone with experiences aligning with yours will be able to offer you some specific advice, but all I can say is: YES!  FRUSTRATING!  I know I just 'pushed past' the symptoms for years and continued running and weight lifting.  It was ghastly honestly, but I had this habit of using my mind to corral a failing body.  With a diagnosis, I have had to cut back on much of what I was doing because I better understand what I was doing to myself, how I was exacerbating problems that were already there and asking WAY too much of my body.

 I have had ups and downs but lots of times where my capacity to exercise increases and I am stronger than I had thought.  Not as strong as I once was, but I think these issues require that we take the long view.  Or rather, it helps if we do that.  And speaking of long views, it is too bad that you have to wait six months to be seen by a specialist, but....six months is a pretty short wait time for someone good in this field.  Sadly.   I hope you get some clarity and guidance for how best to keep and enjoy the things in your life that give you the most vitality and happiness!

 

 

[Pistol]

15 hours ago, Elaine K said:

I'm a 59-year-old Masters swimmer with USMS, and I am finding I can no longer do repetitive race-pace training without suffering repercussions.  I'm constantly monitoring my heart rate now and having to keep it under 80% of max. heart rate to manage the worst of my insomnia symptoms at night.

I am so sorry @Elaine K! I second a lot of what @Jyoti said: unfortunately in most cases of dysautonomia it is essential to learn to pace ourselves and adjust to a new normal. Also - it is probably of no use to try to maintain a certain HR, since in dysautonomia the HR regulation is not working properly. In many cases you may experience abnormal tachycardia simply with standing up, let alone exercise! Depending on the type of dysautonomia you were diagnosed with you may be exercise intolerant, meaning that even slight exercise can cause extreme fatigue and stress. Usually this is caused by the body trying to maintain circulation despite the chaotic signals from the ANS.

For me the best way to determine my abilities after becoming disabled by POTS was to stop doing ANY exercise ( because I was pretty much bedridden ), and to slowly increase my exercise to tolerance. This means not exercising to achieve a certain HR or do it for a certain amount of time or laps etc but rather listening to my body and to stop when I could tell it was enough. Swimming - IMO - is a good exercise for dysautonomia as long as it is done TO TOLERANCE. For me I would not be able to look at exercise as competition but rather as a way to maintain my health. 

Insomnia and fatigue from dysautonomia can sometimes be caused by the abnormally great adrenaline spike the ANS experiences in an attempt to compensate. Often the SNS goes into overdrive trying to maintain proper circulation to the brain, that is why too much exercise can cause worsening symptoms. Having said that becoming inactive ( like many of us do because exercise makes us feel so bad ) will make it worse too. The best way - like I already mentioned - is to start slow, with just a few laps and then FEEL your body's response rather than going by your HR. Once you learn to listen to your body you will know what you tolerate and how much you can push yourself. And some days you will be able to do more than others, and it is important to not set limits - if you push yourself you will most likely pay for it. 

[Elaine K]

Thank you both @Jyoti and @Pistolfor your warm welcome and support!  

Since I have been competing in swimming for the past ten years, it has been a work in progress to figure out what my body needs and how it responds to different work loads.  Just when I thought I had it nailed, these past several months have told me otherwise.

I haven't yet received a specific diagnosis other than "autonomic disorder," so I'm sure that is what Dr. Snapper will figure out.  Exercise intolerance doesn't seem to be an issue, though, as long as I keep my heart rate below 80% of max-- something I have recently figured out.  I've been able to make that connection after monitoring it frequently throughout my workouts.  Where I run into trouble is if I DON'T exercise at all or overdo it with too much speed.  My swim training for each day is dictated by how I feel during warm-up and how my heart rate responds at warm-up speed.  Today, my heart rate was up 18 bpm swimming at the same speed as on Saturday-- unusual, since I take Sundays off from the pool.  As a result, I backed way off and just swam drills.  On other days, I can crank up the speed with a lower heart rate, and those are the days I feel great.  I backed down my weekly swimming yardage (and intensity) to swimming six days per week maxing out at 2,500 yards per session, and that has helped.  Some days, when I don't feel right, I call it quits at far less yardage.

Over the past couple of months, I have come to realize that I will need to swim my races within my heart rate tolerance (and how I feel) rather than "racing" my races.  I'm signed up for two meets next month, and I am mentally prepared to do just that.  I don't want to miss out, because the meets are so much fun and not about winning.  Most of us compete against the clock rather than each other, but I am prepared to let go of my time goals and just have fun in the pool.  I recently competed in the Georgia Games Open Water Meet and swam three races (2k, 1k, and .5k), just cruising at a comfortable speed, and I recovered beautifully!  (I also ended up with 2 golds and 1 silver medal as a nice bonus!).  That might not be the case at future meets, though, so I am prepared to bail out of races if I don't feel right.

For me, it seems like how my body feels is tied in with my heart rate.  When I don't feel right, it's when my heart rate is up.  If I am feeling really tired, though, I just quit and do some yoga on deck to relax.  As an athlete, I had already learned to listen to my body to prevent over-training and injuries; however, I sure am learning to listen to even more!

Thanks for your suggestions, advice, and support!

[Jessica]

Hi Elaine! I am also a former competitive swimmer.  I recently was swimming with a master's group until a really bad flare up. I just wanted to say hi since you were asking if there other swimmers out there. Have you had you appointment yet? I am in FL, so thinking of seeing Dr. Snapper as well. I was supposed to do an open water swim in December, but due to this recent flare, I am not sure if it will happen or not.  

[CallieAndToby]

I was never competitive though very competent swimmer and my chosen exercise, before dysautonomia I could swim all day but post dysautonomia I had to set a time limit on my swimming. I think it's different for everyone but I would have to rest afterwards after a set time. It's so fun for me so I would overdo it so maybe set an actual timer. Some of my friends set timers for activities even as menial as talking on the phone. I grew up doing all kinds of water sports but played volleyball competitively. I like your profile picture and I actually swam with a dolphin once, fond memory. One time I was kayak fishing in a bay somewhere and a huge pod of dolphins popped up jumping all around me and it really scared me as they were bigger than my kayak but I headed back to our rental vacay home and they followed me all the way back, exhilarating, but scary. 

[Jessica]

What a fun memory! Swimming is such a fun a great form of exercise. 

[CallieAndToby]

13 hours ago, Jessica said:

What a fun memory! Swimming is such a fun a great form of exercise. 

Yes it's great exercise and great fun! I really like swimming at the beach with all the waves as well, but I've been too sick. My two older cousins are both surfers. I used to decorate my entire room with dolphins/porpoises but I outgrew that kind of decor as I got older.  Are you still able to swim? How often? Do you prefer a pool or some body of water?