Constant Fatigue But Can Still Play Sports?

[comet555]

I'm going to have my first meeting with my family doctor since my diagnosis from the cardiologist. I'm trying to figure out how I can explain to him how I can still play competitive sports (hockey) and yet still have constant fatigue, palpitations and episodes of pre-syncope.

So, does anyone else have pots and can still manage to play sports?

I know my symptoms are mild compared to a lot of you on here but I do still see the impact on my daily life. Oddly though I've always been able to play sports, although admittedly I do feel like total crap while I'm doing it. I think I've been able to play hockey because each shift is only about 45 seconds long and then you get to rest for another 45 seconds to 2 minutes in between. This allows me to recover just enough to go out again. The whole time I'm playing though it's like I can feel the blood pooling in my legs and they're so heavy it's an effort to skate. That plus and the awful shortness of breath. There were some nights I would drive home and cry because it was just so hard I wanted to quit. I couldn't bring myself to quit though because at that point the doctors had told me I was fine for years so I figured it was just all in my head and that everyone probably felt that way when exercising. The only reason I kept playing for the last 10 years is because I needed the exercise and I had no reason to quit (medically anyway).

The thing is my doctor knows that I play competitive hockey so I think I might have a hard time explaining to him how I can do that and yet get out of breath when I walk up the stairs or why I never dry my hair because my arms get too tired? Even to me I would find it hard to explain to people. I think my other problem is I'm just not pushy enough to make the doctors take me seriously.

[potsyturvy]

I kind of understand what you are saying. Occasionally, I am able to play sports (like 4 holes of golf with a cart, or shoot a couple of hoops). It is frustrating though, because if you can manage to do anything, no matter how horribly difficult it is, doctors just want to write you off and act like you are functioning like a normal person. My doctor that diagnosed me with POTS told me I was extremely highly functioning and didn't need much for treatment because I was attending college, even though I told him I had to use a handicap tag to park close enough to walk into buildings and I missed more classes than I attended, and when I went to classes, I spent the rest of the day in bed because I was so sick from it. Yes, that sounds like really normal functioning to me I love the way you say you can't dry your hair.. I totally relate to that! I hate showering and drying my hair more than almost anything! I rarely dry my hair, but if I have to, I have an outlet on the floor in the living room, so I alternate between sitting and laying on the floor while drying my hair. lol. I think if you explained it pretty well on here. Maybe if you just explain that you are trying to live as normal of a life as possible and that you pay all kinds of consequences by playing hockey your doctor will be more understanding? Good luck! I hope your appointment goes well!!

[ladyt]

Hi

Have not had that problem for years But when i was younger i did. So i really do understand. But what ever way I dealt whit my docs they didnt understand. They ust didnt belive me. But more and more docs gett more knowlegde about dys etc.

But trying to explain the best way u can how dys influenses your life, even though u can also be active.

Best of luck

[Dizzysillyak]

Have you tried resting when going up stairs ? This works for me but I rarely do it. Taking time for my body to recover helps me too.

I've been playing in the surf at the beach for the last 3 months and noticed because I rest between waves I'm ok too. BUT I can't walk at a steady pace on the beach for any distance without stopping to catch my breath. And I can't run more than about 5 - 10 steps without my brain / body getting confused .. It's like I blow a circuit and can't process runnung...

I think my inability to run, due to confusion, is some kind of neuro damage and not dysautonomia. I had ataxia for 16 1/2 years that went away 5 years ago so I can walk normally now but I still can't run.

BTW. I noticed that you take Nexium which means something you're eating doesn't agree with you. Anything acidic would do this of course, but food intolerances are known for causing a wide range of symptoms. You may want to look at these, nutritional deficiencies via testing and take some probiotics.

tc .. d

[jennyg97]

I can relate. I'm a runner, or at least, I like to run. Some days, I can run 3 or 4 miles with no problems. Other days, I can't run more than 49 seconds (yes, that was my shortest recorded run ). And stairs are killer for me virtually every time. I think there must be something different about the stairs that make them tough even for POTSies who still have been lucky enough to maintain good muscle tone. It's hard to explain to people how I could run 4 miles in the morning and then have to take an elevator up one flight.

Unfortunately, I don't have any great insight on how to talk to your doctor about it, but at least you know you're not alone, right?

[lgtaylor100]

I find that some days I am able to exercise but afterward I experience extreme fatigue and muscle weakness which lasts for hours or days. I believe that in a recent post someone discussed the mechanism by which we are able to exercise but the symptoms appear afterward. Does anyone remember that post?

Lynne

[comet555]

Thanks everyone, your comments have been very helpful. It's nice knowing that it's normal (for us anyway) to be able to have difficulty with the little things and still be able to do more strenuous stuff as well.

I've only really found out what was wrong with me but I think for the last 15 years I've just adapted to the way I felt. I very rarely dried my hair, basically just for weddings. Most of the time I just have a quick shower and throw on a baseball hat because it's easy. I do have two little kids too so I'm still in the mom mode I guess! It just never made sense to me how I had so much difficulty holding my arms up to do my hair, or getting breathing on stairs, and yet I could still play sports. I couldn't do cross country or any sort of endurance sport. Just sports that had a short bursts with rest or volleyball which isn't as bad as running for some reason.

Stairs are a killer for me though, basically anything that requires lifting my legs much. At the gym I can't run on the treadmill but find the cross trainer a bit easier (elliptical). The bike has always been ok too.

Anyway, will see how I can get this across to my doctor when I see him. I actually saw him this week but he didn't have the letter from the cardiologist that was supposed to be there even though it's two months since my appointment (grr). So I had worked myself up to talk about everything and then he didn't really want to discuss it yet without the diagnosis, which is understandable but really annoying as I had hoped to try some sort of medication. Just increasing salt and fluids is not doing the trick.

Oh, and as for the reflux that someone mentioned. I've had that for about 8 years now but only found out it was reflux last year. I never had heartburn so the doctors kept telling me it was post nasal drip. I tried all the various sprays with no help and eventually I just gave up complaining about it. Then after 7 years I got pushy and with my new doctor insisted on checking into it further. They eventually did a scope down my throat and could see damage from the reflux so started me on Nexium. Since I don't have heartburn I have no idea which foods, if any, would be causing a problem. I did have allergy tests done when I was about 19 and wasn't allergic to anything but I suppose I could still be intolerant to something. I just don't think I'd be able to figure it out on my own.

[Tuesday]

Yup, I play roller derby, and I think the training/skating is pretty similar to hockey. I think being able to play has definitely made my doctors a little more skeptical about my other symptoms, but I totally understand where you are coming from.

We practice inside, take breaks for water every half hour, and for whatever reason I don't have any issues skating for hours on end. But get me outside walking to my car across the parking lot in a Florida summer? I'm done.

I'm tired ALL. THE. TIME. Even when I'm skating. So it's not a big stretch for me to do something exhausting like skating or going to the gym, since I'm going to feel like crap no matter what I do, but some days it is absolutely ridiculously impossible to get myself to exercise.

I have no idea how to explain to doctors why I can do something that requires so much exertion, yet I have difficulty walking around a store for more than 10 minutes. If anyone ever figures this out, I will buy you a case of gatorade.

[jknh9]

Count me in as well. I used to do intense aerobics and kickboxing pretty much every day, and quite a bit of yoga too, before I got sick. Now, I can usually force myself to muddle through 25 minutes or so of kickboxing or aerobics, but then I'm done for a few hours and I often feel sick that night. I've also noticed that if I do yoga that has a lot of up-and-down movement (standing to plank/push-up position and downward facing dog pose etc) I feel pretty bad afterward.

I can usually take a 45-60 minute walk at a leisurely pace if I drink tons of water on the way, then I have to take it easy afterward. But one flight of stairs leaves me out of breath and my heart pounding.

About feeling bad walking around a store-- I do, too, but I suspect for me it comes from the lighting and echo-y noise. I've always been sensitive to places like malls and Wal-Mart. It's like if I spend too long in one I feel a little disoriented and nauseous. My dad told me that he was the same way until about his 30s, so I'm not sure if for me it's related to POTS & NCS or not.

[abnel]

It's interesting how we're all so different. I can't make rhyme or reason of my exercise abilities.

I am usually okay'ish with stairs (at my fittest a few months ago for exercise I would walk up and down my flight of stairs 13-14 times), but I cannot walk up steep hills at the moment.

I have great trouble walking for more than 20 minutes, but on a good day I can do my Tai Chi class for 1 hour with all the lactic acid burning in my legs from holding positions/postures, with only two to three breaks. Yet I cannot stand still for more than 5 minutes on a good day. I cannot run at all.

I really understand what you mean about being able to do exercise but still feeling like crap. I seemed to have more exercise tolerance last year, but felt worse when I wasn't exercising. This year I feel better when I'm not exercising. It's all very odd.

[icesktr189]

Ugh I wish I could. I am always dizzy so exercise.is out

When my pots was better I could though.

[comet555]

Like many of you I also feel tired all the time so it doesn't seem to matter whether I'm walking up a flight of stairs or skating. So I figure I might as well play sports as I need to do something to try and keep in shape (or rather loose the weight I've packed on). Running has always been a no go for me though!

I've often wondered why I have a hard time exercising and when I compare it to hockey I can only come up with one or two differences. I still find hockey exhausting and barely manage it to be honest, but the difference is if I don't keep working as hard as I can then I play like crap and let my team mates down. There's just more motivation to play hard for the sake of your team and also to try and win the game. When I try to exercise there's nothing that keeps me going and pushing through the fact that I feel terrible. So when I feel like crap on the cross trainer at the gym I'm more likely to stop when I've had enough, rather than keep pushing beyond what my limits should be.

I used to think I was just lazy because I dreaded going to the gym, it just seemed like so much effort. I could never understand why on earth anyone would love going to the gym! With sports it was different as I had a set time to play and people who were counting on me to be there. Plus, I actually do have fun for some of the game too.

[Nikki]

I have a lot of dizziness, and get shortness of breath easily too. Sometimes I can do 30 minutes of cardio exercise and be fine, other times I can barely do 10 minutes and I just feel like I'm going to faint. For me it just seems unpredictable. Or if I can exercise for 30 minutes or so, I might pay for it afterwards..but there's that chance that I could be fine and not be badly affected by it. Sheesh, just typing this out - I can see how hard it is for doctors to understand and believe us lol..but it's true..I think certain things bother us one day that might not the next..but then something else will be wrong. I would just try to explain your situtation to your doctor as clear as you can. Hopefully he'll understand and be able to give you some suggestions.

[Allene]

I used to exercise (karate, and walking) until my symptoms became so bad that I would have pre-syncope in the middle of an activity. Pre-syncope for me drains all my energy, and for about 30 minutes or so afterward I'm much more prone to get it again or actually faint. I'm going to try to get back into physical activity again this fall since my symptoms seem to be helped by this new medication (I'm planning on taking a martial arts class at my college), but with a note from my doctor explaining that I may have limitations and to allow me to sit out or rest as much as I want to. The last time I tried to use a treadmill, I fell off it because I got dizzy and lightheaded. I can walk without that happening to such a bad degree, so I'm going to try taking walks in the afternoon/evening with my grandmother (she enjoys walking the dog twice a day, so I'll just join her :3) I used to have issues walking on treadmills because I easily get vertigo, so I imagine it was just a worsening of that.

I also have a really hard time on the stairs. I have to rest halfway up most of the time :c Fortunately for me, I'm moving to my dad's house and it only has one floor.

I'm hoping that this new medication will allow me to exercise semi-normally. I need the activity to keep my heart strong, and to lose weight :B

[Tuesday]

I went to San Francisco on business a couple of weeks ago, and while I was there I had no trouble going up and down the steep hills. I climbed Telegraph Hill and Lombard Street, while some of my coworkers had trouble with them. A couple of days later, I almost fainted after just walking a block to my office and going up the elevator and to the conference room!

It's never seemed to make a lot of sense to me what will trigger my pre-syncope and what doesn't. I can never figure out a pattern of what makes me dizzy and what doesn't. So, since there's nothing specific that I can avoid, I just do as much as I can.

[growltiger]

I relate a lot. My fatigue is also constant, but I get so pissed for feeling lazy that I then go exercise. Sometime dance and yoga are fine, sometimes they are not. Sometimes I can bike to the gym (with HR spiking to 160 BPM but feeling okay) but then can't climb the stairs to the weight room. Sometimes I can do weights, sometimes I can't. A couple months ago I went on a long hike with my parents, felt fine during the whole hike, and then was sick and shaky and slept for about 18 hours straight afterwards.

I do think that exercise overall is helpful for us, so don't feel like you have to apologize for doing whatever you are able! We shouldn't have to prove anything to anyone - we are all just trying to feel as healthy as we can.

[comet555]

It's funny.. I don't really feel the need to apologize because I've always tried to do as much as I can. My problem is though that the cardiologist felt my symptoms were mild, which I agree they probably are, so I worry that he won't take me seriously when he sees what I can do. My thing is though that I still feel tired all the time and pretty crappy. So I do all those things despite how I feel because I'd like to carry on living life as normal as possible. I'm out of breath walking up the stairs so I might as well be out of breathe playing sports I love!

I start playing hockey again this Sunday after about a year and a half break. I honestly have no idea how I'm going to do it at the moment. I haven't felt this tired and crappy in years and don't recall playing when I felt this bad. I'm starting to think that playing sports for so long has helped keep me from getting to this point and my year off has made me back slide quite a bit.

Either way, I have to play again and am just hoping I can do it. I took my son public skating and did two laps at medium speed and was so tired that I was out of breath and my legs were exhausted. So playing an hour game should be fun!

Oddly enough I've always found the inhalers I was given did absolutely nothing. The only thing that I felt did do something was Singulair. When I took that and played hockey I couldn't feel the blood rushing through my legs so badly and it seemed like I could manage most of the game with a decent amount of energy and only having bigger breathing difficulties at the very end rather than part way through. So having read some of the other diagnosis on here (mast cell, mito, etc) with Singular as a treatment I wonder if there might be something to it for me. At the time the doctors couldn't explain my positive reaction to Singulair.

[Guest maia]

Ill go through and read all the comments later, but i had to stop and comment myself. Drying your hair! OMG, me too! my hair has been in a bun on top of my head for years because putting my hands up that high and keeping them there long enough to dry it is agonizing wow, thank you for posting this! I never really thought of it for the same reason as another poster mentioned... Its been going on so long i just dont think of it anymore, lol. wow.

[Guest maia]

Tuesday, you do rollerderby? thats fabulous, and something i always wanted to do! kudos to you! Im thinking that it may not be so odd that you are able to do this. From what i know about it you are skating around a track in a somewhat hunched over position, yes? I think it makes perfect sense, at least to me. I find it very difficult to walk and stand, yet if i bend over it helps, and sometimes when desperate(either sit down someplace inappropriate, or force myself through it) Ive found that if i bend over almost double i can continue walking without feeling like i am passing out. Im thinking that your position while skating makes it possible. .. less vertical distance for blood to travel? the bent over position and the pumping of your legs one at a time? Actually the more i think of it the more sense it makes. Your are hunched so less gravity for to fight, your supporting yourself by compressing your abdomen, you are pumping with arms and legs individually or in tandem aiding circulation, its cardiovascular so more oxygen.... makes perfect sense. skates for all potsies! then again if you are not in this position all bets off, lol...