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ramakentesh

Exercise Questions - For Those With Exercise Response

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Hey guys

for those that have had significant success with exercise did they:

1. exercise constantly until they started feeling better?

2. find that they felt better exercising with their arms moving around than just with their legs?

3. try to exercise below a certain heart rate level, and if that rate was exceeded did they feel worse the next day?

4. exercise lying down only?

5. found themselves better after building muscle on their arms?

6 found they felt better after they exercised using or built muscle on their thigh (bike riding as an example) or upper arms?

7. Did you push through any crashes or rest through them?

Thanks.

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The reason I ask is that I have noticed that the one time I had great success with exercise I:

1. pushed through all negative effects and exercised as much as I could

2. The exercises I was doing were very much arm orientated - shooting hoops, boxing, chin ups

3. I ignored my heart rate entirely, but I wonder whether this was wise

4. I did all exercise upright

5. Did chin ups all the time and this seemed to help a lot for some reason. Also sit ups.

6. I did a lot of riding and chinups specifically and these exercises both made me feel heaps worse before they made me better

7. and I pushed through all crashes somehow.

the next time I tried exercise I had less convincing results and the difference was that I focused purely on running and this seemed to make me go up and down.

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Posted Today, 08:03 AM

Hey guys

for those that have had significant success with exercise did they:

1. exercise constantly until they started feeling better?

yes

2. find that they felt better exercising with their arms moving around than just with their legs?

yes - i walk while dumb bell curling, helps me

3. try to exercise below a certain heart rate level, and if that rate was exceeded did they feel worse the next day?

didn't track HR to much, preferred long exercise @ low rate rather than HIT

4. exercise lying down only?

Dont do any lying down stuff other than weights

5. found themselves better after building muscle on their arms?

yes - definitely

6 found they felt better after they exercised using or built muscle on their thigh (bike riding as an example) or upper arms?

arms - yes, doing squats @ the moment to build leg muscle, will report back on this

7. Did you push through any crashes or rest through them?

tried to push, but got serious fatigue from this. Not much of a sleeper in general but exercising through this made me needed a could of early nights and 10 hour sleeps.

I have a question also which i'd be grateful if other exercisers could answer....

when you walk, or perhaps run, what stops you from going on when you have to stop? e.g fatigue, progressive dizziness, tachy or other?

For me i get a progressive feeling of dizzyness/faintness until i find myself tripping over my feet and my legs feel heavy with intermittent sudden pre syncope.

I ask because i have realised it's not normal to have a nose streaming with all sorts when you exercise. my MCAD is causing degranulation during exercise hence runny nose, but I'm wondering if it's the BP drop/vasidilation from MCAD which is making me feel faint during exercise, rather than having to stop because of actual POTS.

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Hey guys

for those that have had significant success with exercise did they:

1. exercise constantly until they started feeling better?

2. find that they felt better exercising with their arms moving around than just with their legs?

3. try to exercise below a certain heart rate level, and if that rate was exceeded did they feel worse the next day?

4. exercise lying down only?

5. found themselves better after building muscle on their arms?

6 found they felt better after they exercised using or built muscle on their thigh (bike riding as an example) or upper arms?

7. Did you push through any crashes or rest through them?

Thanks.

1.) I wouldn't say everyday but I exercise pretty much 4-5 times a week for anywhere from 20 minutes - 50 minutes each time.

2.) I mostly jogged so arm movement wasn't significant compared to leg movement.

3.) I tried to exercise below 200 bpm, but starting off I broke that routinely, I would be somewhere between 200-210 bpm. I never felt bad the next day, in fact generally I felt better immediately after exercise and felt worse the longer I would go without exercising.

4.) I always did exercise in an up position.

5.) I suppose I should try lifitng weights with my arms, but I've mostly been jogging.

6.) I've definitely built up my leg muscles and thigh muscles from jogging and I feel that has helped me get the blood flow back to my heart, thus reducing my symptoms.

7.) I've been lucky enough to not have crashes, I always feel about the same or better before I start exercising.

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Serbo - I have MCAD too - I haven't noticed that I'm worse with that - but, I'm on so low a scale of 'EXERCIE' that I don't know if I should even try to answer you. So far, it hasn't made that reaction any worse. If you are doing heavy and lots of exercise - which it sounds like you are if you're going to the point of tripping over yourself -then it very well could be that you are de-granulating and it is causing the allergy symptoms. Of course, you know when we go into a flare - it makes all our POTS symptoms even worse. So, maybe if you start to notice those things scale back a little. You don't want to go so "all out" to trigger a MCAD eposoide. That will put your further back then the progress will slow down considerablly.

I'm like Jangle - right now working on lower body strength. If I do anything with my arms - it throws me into major POTS issues. I think once I get some more muscle tone and vascular strength in my lower body - I will be headed back to the gym to re-start resistance training. I used to be really into weight lifting. I have to be really careful now, as an older person - with EDS on top of it. Easy to hyper-extend. I once was lifting heavy overhead with dumbbells and my outside bicep gave way to the outside - arm came down - not in a good way - tore the muscle loose. Still have lots of scar tissue in that arm and it hurts to try to use that muscle - but, I'm sure - I can slowly get past it and rebuild my arms and chest/back again. Also, learned the hard way not to do high step ups with weight - wrecked one knee that way. If you have EDS you have to be super careful with the way you move and what you do. You can pull something loose really easy and it stays with you. But, it's also important to move your body and keep your muscles as strong as possible - not just for EDS but POTS too.

Issie

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1. Yes, even through relapses, even if it's as little as 2-5 minutes a day.

2. Yes, I feel better when I work the whole body. Still not able to use the eliptical machine, but hopefully I'll get there one day.

3. Yes, during the first 18 months. No, for the past 6 months - I suspect I am now exercising with a higher HR than before and can tolerate it better because I changed the exercise I am doing.

4. No, I prefer upright exercise.

5. Yes, but even better from strengthening my legs. Most men seem to already have the strength in the legs, so working the upper body is probably an added bonus. For women I think it is harder generally to build the upper body, and a good place to start is the lower body.

6. Definitely yes.

7. Yes, push through every time, even if it's only small amounts of exercise each day and very gradually building up. During my last crash it would take me 2-3 hours to do a gym routine that normally takes me only 1/2 an hour. I just kept perservering until I got it back down to 1/2 an hour, but it took me many months and it was very hard and left me feeling ill and exhausted afterwards.

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Thanks for this post, Rama. It's soo helpful to hear the details of what has worked for others.

Exercise has been a complete disaster for me so far (extreme fatigue/dizziness; my hr has been skyrocketing at night; have had tachy and brady through the day). I can't seem to push my heart at all right now, so I'm back to what amounts to essentially moving my legs on the bike for circulation :( I'm just coming off of a boost from IV saline...so I was capable of a little bit more today.

I'll look forward to hearing more replies...

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1. exercise constantly until they started feeling better?‚Äč

yes

2. find that they felt better exercising with their arms moving around than just with their legs?

I don't know. I've always done upper and lower body exercises. I don't understand the question?! I use the treadmill exclusively. My knees cannot handle a bicycle or an elliptical machine. The weight training is separate.

3. try to exercise below a certain heart rate level, and if that rate was exceeded did they feel worse the next day?

I didn't pay attention until Dr. Levine sent me his exercise program.

4. exercise lying down only?

only doing abs and leg weights since I do not use some of the leg machines that can hurt my knees

5. found themselves better after building muscle on their arms?

I don't know. I've always tried to hit all muscle groups.

6 found they felt better after they exercised using or built muscle on their thigh (bike riding as an example) or upper arms?

I don't know. I've never separated out body parts. I never use a bicycle.

7. Did you push through any crashes or rest through them?

Push. I don't give in if I can help it. But.....it depends what you mean by a crash? If I'm sick, or extremely unwell, of course I would not exercise. If I have a fever I would not exercise. Judgment is key here and we are each different.

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I exercise regularly, and I play roller derby and just completed Tough Mudder, a 12 mile obstacle course, last month.

1. exercise constantly until they started feeling better?

I think my dys has always been a bit milder than most people here, but my exercise started out sporadically. I would exercise when I already felt well, then crash, then go back when I felt better again. Eventually, I could keep it up longer between crashes.

2. find that they felt better exercising with their arms moving around than just with their legs?

Not particularly, although I did start doing more upper body workouts to gain strength. I feel that gaining strength in my legs really helped with my circulation, though.

3. try to exercise below a certain heart rate level, and if that rate was exceeded did they feel worse the next day?

I have never used my heart rate as my main indicator for my workout. It seems too unreliable since mine jumps around too much. I can be on the treadmill running 6-7 mph, with my heart rate up in the 130's, then it will just drop to around 85 for no reason.

4. exercise lying down only?

Nope. I feel that some exercises you can do lying down are good (core strength, etc.) but I feel like cardio really is what gives me the most benefit for relief of my symptoms.

5. found themselves better after building muscle on their arms?

I do think it's important to have balanced strength training, but I started out as a skater, and I realized that after building a lot of muscle in my calves and legs, that I was able to tolerate standing/being upright a lot better than I could before.

6 found they felt better after they exercised using or built muscle on their thigh (bike riding as an example) or upper arms?

See my comments above. For me, at least, I think that building strength in the calves and legs really helped my body pump the blood back up to where it needs to be.

7. Did you push through any crashes or rest through them?

When I first started I would take it easy when I crashed (which was pretty regularly), but now I mostly just push through them. I'm going to feel like crap one way or the other, I may as well at least be making some progress toward my strength and endurance goals while I am miserable.

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