Exercise/motivation Thread

[Carly87]

I thought a thread where we could share our experiences exercising might be helpful. It doesn't matter how little or how much exercise, whether it be climbing a flight of stairs, walking or riding a bike around the block, maybe we can motivate each other!

I'm just beginning a new workout plan and it is kicking my butt! I know that if I can get through it a little easier every day, that I will become stronger and my symptoms will lessen. My boyfriend is a personal trainer for sports performance and he has set me up with a plan. Right now this is what is included in my "workout:"

-Walk/ride my bike around the park near my house if I feel good enough. Usually I feel best at night, so lately we've been taking my dog out for a lap or two around the block.

-Different types of lunges and squats (how ever many I can handle)

-lots of calf raises

-Stuff called "movement prep" in the Personal training business...Basically the stuff they have athletes do to get ready to work out, = MY WORKOUT! haha

-Finally, lots of leg stretches.

My biggest problem with the exercise is being constantly aware of my heart pounding...I don't even have to do much to set it off. I wish I could just forget about it!

[MightyMouse]

because of how hard it was for me to work out after having the post-work out pains and exhaustion, I ended up hiring a trainer. He comes to the house to motivate me 2x a week to keep going. He has gotten to know my quirks and doesn't let me push past them.

[nunibenuni]

My problem is getting motivation. I actually have a fair amount of energy. I go for walks with my mom and I'm now able to go pretty far. I do physical therapy 2x a week, but I'm bad about doing my exercises at home. I might be released from pt next week and I'm freaking out about how I will motivate myself to do my exercises. Any ideas? It gets so boring when I have a sewing project calling my name!

[Csmith3]

I try to walk rather than use the car for normal errands. It all adds up and I think this makes a big difference. If I'm struggling a bit with POTS, I restrict this to walking where it's flat and do less. If I'm feeling a bit better, I can manage some inclines and perhaps carrying a bit of shopping.

If I'm having a good patch healthwise, I try to go to the gym. I like the fact that it's a safe environment (if I suddenly feel ill, I can have a lie down) and it's air conditioned. I do about 10mins on a cardio machine (eg, reclining bike, walking on the treadmill, rowing machine) and then some resistance work on the weight machines. I usually stay about 45 minutes alternating between the two and if I feel I can just manage another turn on a cardio machine, it's time to go home. My tip is to leave some energy in reserve - this seems to prevent a POTS crash later in the day/the next morning.

I have tried all sorts of aerobics classes and sports but find it best if I go to the gym so I go at my pace and I am not tempted to overdo it. I also found that the gradual cool down in aerobics classes was unbearable (my HR stayed high whilst we moved less and less resulting in a recipe for fainting) so find a way to get your HR down safely to avoid the post-exercise crash. My strategy is not one you would find in a fitness textbook, but it works for me.

If you can find a suitable yoga class (ie, one that mainly involves sitting poses), that can be enjoyable and relaxing.

I know that some forum members are too ill to contemplate this sort of exercise. I have never been so ill that I've needed to use a wheelchair or similar aids. My comments come from 20+ years of experience of POTS varying from "needing much bed-rest but can more or less look after myself" to having a "POTS-modified, but near normal life". Please do not be tempted to do too much too soon or set yourself rigid targets - just do whatever you can.

P.S. A few things I find best to avoid

1. Exercise in the morning.

2. Cross training machines (and anything else that involves standing relatively still whilst exercising arms and legs at the same time eg, step aerobics, aqua aerobics).

3. I often see the media saying that however tired you feel, you will always feel better if you exercise. Sorry, but that just isn't true for me. If I feel rough, exercising makes me worse so I avoid formal exercise until I've got a bit better.

[greenergrass]

I've been pretty stable for years - until I started a serious exercise program. I'm currently trying to train for a sprint triathlon in October & was doing really well until my body caught up with my heart rate.

Now, after 6 months of working out, I find that as soon as I get to the level of work I enjoy, my heart rate jacks up into the 170-180 range (I'm 41). Last week, I hit 187 & ended up in the ER with chest pain. Now I'm scheduled for a stress test & echocardiogram on July 9th. Then, probably up to Mayo in Jacksonville, FL for eval & plan. Today, I was jogging (with permission & really slow - 12 minute mile) & after about 1 mile, all of the sudden my HR monitor showed 277 & I felt a bit dizzy. Of course I stopped & sat down. It immediately stopped. But, once that happened, I could never get my HR down to below 140 again until about an hour later.

I totally refuse to give up on my life & goals this time! When I was 1st diagnosed, all the docs told me I needed to "take it easy." With that fabulous advice, I ended up getting sicker & sicker over a period of 3 years until I was on about 10 meds. Now I feel great & am finally starting to get my body & life back...exercise is the one thing that keeps me feeling alive.

Any advice is appreciated!!!

Kim

41 & Chronically WELL!

POTS

Gastroparesis

Asthma

[Sophia3]

Way too hot and muggy to walk here in recent days.

I MUST AVOID HEAT. I go to the YMCA down the street with GREAT Air conditioning.

I hadn't been in a few weeks due to feeling puny...i've lost 4 lbs since I was there last (not good for me to lose anymore)

I can only do some resistance machines for lower body to build up bones I hope (bone loss. osteopenia) and walk FLAT on the treadmill. I keep my HR under 130 which is no easy feat. But Grubb told me to keep it at that number but I can be that just standing and walking across the room.

I could never do cross training or a personal trainer in a 100 years. I go at my OWN pace..sometimes lasting 5 minutes or sometimes able to last 20=30. I take my time and rest.

If I try to walk up steps or incline on treadmill, that gets HR too spiked and ruins any chance of a decent workout. I walk in the place and start on the legpress (sitting down version, could never do the standing version) I can't do squats either. I have to be sitting or recline for most exercises but in the last couple years, I have "graduated" to the lightest weight on the butterfly machine. I also now turn around and adjust the weights for my delts so that's two upper body machines for me.

During the day around the house I use a gallon jug to hand water some flowers outside. And I freshen 3 bird baths a few times a day in this heat. Also use a scrub brush to keep away slim. So that's a little 'arm exercises for me."

Thanks for starting this thread. I need to get back to exercising at least TWO times a week regularly but have had a bad OI spell.

oh, I ALWAYS feel worse after exercising but do it for my bones and to avoid more deconditioning. I have to spend 85 percent of my wake time resting in bed or recliner or sitting with feet propped up.

Also when I have pushed to much I WORSEN my pre existing insomnia. Mystery.

[medicalenigma]

I do know how you feel about the heart pounding.. i went on a new machine the other day at the gym... normally i use the stationery bike but i decided to do one of the higher impact machines where you stand (kinda like a stepper where you also use your arms)... well, within 5 minutes, my heart rate went from 90 to 170 and I almost passed out. I was so upset.. i wanted to keep going but i couldn't.. now i know for now, i have to stick to the stationery machines where i am not standing up... it is hard enough when i am sitting up.

hope you're finding a routine that works for you!!

-nancy

[MomtoGiuliana]

I can only do light or recumbant exercise in the AM. In the afternoon or evening I can exert myself more in a standing position.

[Csmith3]

Kim

I was very interested in your post and, of course, sorry to hear that your training, and no doubt other aspects of life, has been interrupted by a worsening of symptoms. I can empathise (I had a similar thing happen years ago when I used to run 10km races and suddenly became very ill after the slightest return to training). Alas, this is one POTS issue I have never really solved, but this year I have found the motivation to try again and made it a priority.

I'm not sure there is a logical answer and I am reasonably sure that standard fitness advice does not work for me. I have found it is possible to exercise at a low level and then I plateau. I don't know how to get beyond the plateau (whilst continuing with my normal life) without crashing. I am trying to be more patient, continuing at that low level for longer than before, to see where that gets me. If I spend my holidays doing something active (eg, hiking), that can get me beyond the plateau for a month or so, but this really does take all my energy during the holiday to make this progress.

A few people have mentioned the instant tachycardia on exertion. I can solve this with antiarrhythmics, but at a price ie, general lethargy. I would recommend using a HR monitor in the gym to try to pinpoint what it is that is causing the sudden tachycardia.

Has anyone had a problem with sick sinus/tachy-brady? I don't have this diagnosis, but doctors have suggested this in the past and I wonder if this may be related to the exercise problems.

Wishing you a speedy recovery,

Cath

[MightyMouse]

Nunni, the trainer ended up costing me about the same as my co-pay for PT; I, too, was discharged from PT, but couldn't stick with the routine because my motivation to do things that make me feel tired/bruised/achey is very low. It's a bit of a financial burden, but I have to say that it's one of the best things I've EVER done. I'm stronger now than I've been in years. My stamina has improved tremendously--certainly, I've still got POTS and NCS, but even a few extra minutes of a social life, or a work day, it's a good thing.

Nina

[bgsu4]

For the first year (especially when I was trying to tell the Docs something was wrong with me) I had only a little trouble with exercise. I could do stair steppers and ellipticals while keeping up with a moderately high demanding weight training program. I would feel wobbly afterwards or a little tired but I kept it going. I found that the 1mg of Xanax extended release really seemed to help with the exercise (this was given to me about 6 months in). When I finally got the diagnosis I was pushing so hard for the Cardiologist at the Cleveland clinic took me off of the Xanax and I have had a terrible time exercising since then. Two weeks after they took me off I almost fainted during exercise and had a wonderful tachy event. These types of events continued until I finally decided to lighten up so much it just didn't seem like exercise much anymore. It was in 2006 and I do very light things now put i have a tremendous amout of fullness and disorientation in my head which does not correspond to HR or BP measurements.

The wonderful irony is that I am an exercise physiologist who was at around a 19-20 MET level before this all started. Four months in I still managed to complete (every stage) the Bruce Protocol for a Stress Echo at a HR of 167. Now I feel like garbage for a few days after water jogging for 30 minutes at a moderate pace.

Although I feel lightheaded walking at times I still walk when it's possible. I never exercise alone. The old adage of knowing too much can be bad is true for me. When I feel symptoms I stop just like I've been telling everyone else to do for years. I have unfortunately seen some things happen and err on the side of caution for myself.

I LOVE AND MISS exercise/fitness so much. It is such a big part of my life and I know I will never completely accept this if I/we(the docs) cant figure out why I have such terrible ex. intolerance. My neuro (Dr. Chelimsky) is a little baffled by this as am I (but he wont put me back on the Xanax either).

My advice is to always start out slow. WARM UP for 5-10 minutes very gradually increasing the intensity (this is true even for the completely healthy) so our bodys can get ready for the increased demand.

Work out at a comfortable pace paying attention to your HR.... 55%-85% of max HR is the guidelines but you should strive for 55%-70%. This will give great benfits and allow for increased time rather than increased intensity (thats already increased for us)

Pay attention to your breathing, sweating, hr and how you feel overall. If you experience any type of discomfort stop and notify someone if you are at the YMCA or other place.

COOL DOWN for 5-10 minutes. Gradually reduce your pace to help decrease your HR and BP. This will help lessen blood pooling, even in us. Never jump off a machine before cooling down. People without our problems faint from this. Stretch a little, drink some gatorade or get some potassium and salt and fluid pronto.

If anyone has any questions feel free to send me a message. I don't go on here everyday but I will get back to you. I would certainly enjoy helping anyone who has any questions concerning this topic. I'm very familiar with Cardiac Rehab and the ACSM Guidelines (American College of Sports Medicine) and I am a Certified Strength and Conditioning Specialist through the NSCA (Nat. Strength and Cond. Assoc.)

[Tammy]

Am I the only one that is unable to do any exercise? Just standing up for a few minutes kicks my butt.

[firewatcher]

I keep trying to exercise, but WEIRD things keep happening: BP plunges to 87/80, my hands and feet swell and go to sleep, skyrocketing HR (180 at stage 3 of bruce protocol), and on top of all that, I can't walk or talk straight and people think that I am drunk. I have always been active till now (3 medals in martial arts, free-weight body-building.) Even before all these started happening, I could never run, every fitness test my school PE teachers always told me I was just lazy because all the overweight kids were lapping me. Several Dr.s have told me I am deconditioned (my Mom is deconditioned and 50 lbs overweight, but nobody thinks she's drunk if she decides to go for a walk!) How am supposed to do anything when I don't know what will happen once I do it? Does any of this sound familiar? How did you you work with it, I know that if you have "overcome" it, you are no longer on this site. sigh...

[mkoven]

Great topic. Before my most recent flare, I was very pleased with myself. My eds joints had settled down enough that I had built up to 45 minutes of brisk walking most days of the week, and some pt and pilates.

But then I crashed---surprise, surprise, the first day of my period in May. (I have ncs) This was also the first day I went to cardiac rehab, per my ans doc's rec. They freaked out, because as soon as I started to exercise, my bp went from 110/52 to 72/38. And I felt awful too. I have often had episodes at certain times of the month when exercising when I felt suddenly awful, and probably my bp had droppped. Needless to say, the cardiac rehab people sent me away until they could get further instruction on how to handle me. They usually see people recovering from regular heart disease, not premenopausal 41 year old women with ans issues.

Since then, I feel like my body can't deliver when I exert--I can feel my bp drop, my chest hurt, short of breath, lightheaded. As I've posted at length elsewhere, this led to an adenosine thallium stress test, which led to a catheterization, which led to the declaration that my heart is healthy. But my ans is not.

I'm sort of shellshocked. I"m really bummed, as I don't know how to get back to exercise and get my body to respond appropriately. I"m afraid to try to walk further than a couple hundred feet from home, in case I get symptomatic-- which is all the time, and several hundred feet is all it takes. I'd still have to get home, if I got flared at any distance. I can wait until my spouse gets home, and he can accompany me with the wheelchair, in case I do crash. But that's a real pain having to count on someone else.

what I don't understand is how I can go from doing pretty darn well, to being thrown down an ans hole over night , where I feel like I can't do much of anything. and then I haven't rebounded.

When I was in the hospital most recently, there was talk of sending me to RIC, a rehab hospital that gets people who've had serious acceidents. spinal cord injuries, strokes, etc. back in shape. But the rehab doctors feared the same-- that they could get me back up to a decent level, and I might then crash overnight, and be back to square one. How does one rehab a chronic, fluctuating condition with flares that come and go for no apparent reason, other than hormonal shifts?

My ans doc talked about sending me back to cardiac rehab, but agreed that they wouldn't know what to do with me, and would be sending me to the er all the time. So i've been told to manage it on my own. Huh? I can do that, going by how I feel but it's so frustrating. and I feel kind of freaked out by the extreme symptoms I get with little exertion.

[Csmith3]

mkoven

I see you have EDS (I have too) so perhaps POTS has been a long term problem, but for how long has exercise been difficult due to POTS? I was wondering whether your latest crash was typical (in terms of severity and how long it is taking to get back to your normal self) or if things have been getting worse over time. For me, post-exercise/overexertion crashes are probably my biggest POTS issue now (I'm 35) and it takes me about 4 - 6 weeks to recover whereas 10 years ago I would only have been ill for a couple of days.

I wish I had some answers for you. I wonder if the cardiac rehab was just too much or on the wrong day. If I have a day when I feel instantly tired on exercising, I find the best thing to do is to quit immediately. It is so tempting to make some effort (particularly if you have travelled especially to the gym etc), but for me that is asking for trouble.

Perhaps a little walking would start your recovery. I am not surprised you have lost some confidence; I would accept some help from your spouse and let them chaparone you until you feel a bit better and can predict if and when you are about to faint.

I hope you see some improvement soon. Best wishes.

[P SUDIK]

No Tammy you are not alone, I am not able to exercise at all.I am however thinking about asking the Dr. if he could or would order home PT for me.I don't know if I'll be able to anything??? Pat