Exercise Help for people with POTS?
LadyFaustus
Posts: 4 Member
Hi, all!
So here’s my situation: no beating around the bush, I’m pretty chronically ill. In less than a year I’ve lost over 150lbs without doing anything (which, heck, is good because I needed to lose weight but bad because why did it go? Whoooo knows? 🤷♀️🤷♀️) and I’m being tested by GI for a range of things. My GP suspects an autoimmune disease is at play, but we don’t know what.
We also know that I have had chest pains since November of 2017. No worries: my Cardiologist cleared me as totally healthy and a-okay in that department, save the fact that I have Postural Orthostatic Tachycardia Syndrome. And as any of you who have this may know — it’s bloody hard to walk with this, nevertheless exercise.
Still, I don’t want my body to atrophy and wane, so I want to keep working it best I can.
What exercise advice do you have for people with POTS, costochondritis, and some undiagnosed chronic illness problems? Because for me, it’s not as easy as just jumping out into the gym and getting to work , or even doing some of the basic at-home exercises. What moves have you all found to be effective? Links, tips and tricks, videos, anything is totally appreciated.
So here’s my situation: no beating around the bush, I’m pretty chronically ill. In less than a year I’ve lost over 150lbs without doing anything (which, heck, is good because I needed to lose weight but bad because why did it go? Whoooo knows? 🤷♀️🤷♀️) and I’m being tested by GI for a range of things. My GP suspects an autoimmune disease is at play, but we don’t know what.
We also know that I have had chest pains since November of 2017. No worries: my Cardiologist cleared me as totally healthy and a-okay in that department, save the fact that I have Postural Orthostatic Tachycardia Syndrome. And as any of you who have this may know — it’s bloody hard to walk with this, nevertheless exercise.
Still, I don’t want my body to atrophy and wane, so I want to keep working it best I can.
What exercise advice do you have for people with POTS, costochondritis, and some undiagnosed chronic illness problems? Because for me, it’s not as easy as just jumping out into the gym and getting to work , or even doing some of the basic at-home exercises. What moves have you all found to be effective? Links, tips and tricks, videos, anything is totally appreciated.
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Replies
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Not sure where you are, but in the US you can see a physical therapist for POTS treatment which is often pretty successful.1
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Did your doctor give you ideas? I would ask him/her firstly.
@psuLemon ?1 -
Sadly, since I don’t have insurance and am on a charity care based program here in the states (I’m in one of the only states that didn’t expand Medicaid and I’m still tangled in the fight for disability, I don’t have access to any kind of physical therapy. As for my GP, she just says, “Exercise!” And leaves it at that.
POTS is pretty unknown in this area, so it’s hard getting proper advice. When I see my Cardiologist (it took three before I found one that knew what was going on) again I’ll be asking him too for his own opinions, since he was the only one who even had a clue what POTS was.0 -
Do you have access to a stationary recumbent bike?0
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Here is a powerpoint with some good info: http://cardiopt.org/csm2017/POTS-CSM-2017.pdf
If you do have access to a recumbent bike you can use the following protocol which includes strength and cardio:
https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf
Of course as always listen to your Dr. etc, and be safe! Hopefully that gets you started.
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Are you on a beta blocker? How symptomatic are you? My wife has a fairly bad case. She is on a beta blocker, eats 6000-10,000 mg of sodium a day and gets IV infusions every other week.
Right now she can't exercise, but after her next surgery (hernia), she can. The best work out for her was lifting but with slightly longer rest periods and a lot of things sitting down or slightly elevated.
She is also supplementing with L-Citruline 2x a day. It helps with the nitric oxide cycle which improves cardiovascular health. Also, lowering carbs and or going keto can improve blood flow.3 -
I can’t do Keto because I had gallbladder surgery and can’t process fats anymore. Like. Any of them. Not a lot of the meats used in the Keto diet either? It’s part of what we’re checking with GI. My GI is all messed up. 😩
They don’t have me on IV infusions yet, and we’re discussing whether a beta blocker or Midodrine will be better for my individual case. I go from a resting HR of 55-63 to 117-126, but my BP hasn’t dipped below 94/42 yet. So we’re lucky in that sense, but it still causes a lot of pre-syncope episodes, tons of dizziness, and fatigue.
No one had mentioned L-Citruline before. That’s a new one on me! Going to need to check that out.0 -
LadyFaustus wrote: »I can’t do Keto because I had gallbladder surgery and can’t process fats anymore. Like. Any of them. Not a lot of the meats used in the Keto diet either? It’s part of what we’re checking with GI. My GI is all messed up. 😩
They don’t have me on IV infusions yet, and we’re discussing whether a beta blocker or Midodrine will be better for my individual case. I go from a resting HR of 55-63 to 117-126, but my BP hasn’t dipped below 94/42 yet. So we’re lucky in that sense, but it still causes a lot of pre-syncope episodes, tons of dizziness, and fatigue.
No one had mentioned L-Citruline before. That’s a new one on me! Going to need to check that out.
You can lower carbs and increase proteins with moderate fat. My wife doesnt have gallbladder either. She has terrible GI issues for years, as well.
Beta blockers practically have a 100% success rate according to my wifes electrophysiologist and the Mayo Clinic. Midodrine was some back side effects on my wife.
Outside of basic treatments most doctors don't have much insight into supplements (outside of potassium or magnesium). I have actually blown my wife's doctor away with some of the diet, exercise and supplementation plans i have brought to them. The keys are high sodium, weight lift if possible (especially thr compound moves like swat, deadlift, bench and OHP as it will increase blood flow, and some supplements like L-Citruline and electrolytes (nuun, propel water, coconut water, etc...).
ETA: my wife is chronically fatigued, so she would try to workout as much as she can.. essentially, some days she couldn't get passed 5 minutes and others she could do an hour. So take it at your pace... Also, swimming is a great exercise. It works a lot of muscles.5 -
Pots is something I’m being tested for, after multiple occasions of getting up or having been stood cooking just to lose consciousness completely or partially. My resting bp is typically mid 60’s and on standing jumps to the mid 110’s, highest we’ve registered was 203 when I got straight up from being laid in bed to let the dog out in the early hours of the morning. I think I read somewhere about pots patients needing to do floor based exercises to begin with.0
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Hi, Im also chonically ill and have had pots symptoms in the past. Maybe you could try some in bed laying down exercises? All you need is yourself and a bed/floor to lay down on. You can do stuff like leg raises, abbs and back, maybe even try some situpps. I know a few people that have pots and do yoga since it's supposed to be a light workout on most but obviously harder on them. Try going on YouTube and search for lazy workout or warmup. Chair workouts could also possibly work. Depending on what symptoms/fatigue/pain bothers you the most there's actually quite a lot of exercises you can do. Just try to focus on individual muscle groups.
If sitting is something you can do, try keeping your legs straight in front of you without them touching the ground. Or swing your legs slowly all the way up and back. Grab a water bottle and do some arm exercises with it. Just holding it with both hands in front of you can be an exercise and hard if you do it long enough. Maybe, depending on how good/bad the pots is that day, you could try sitting down and standing back up. And just repeat that. If it's too boring, turn on the TV, Netflix or YouTube. Do remember to drink enough, maybe some Gatorade and have plenty rest in-between repeating the exercise. Try to keep any movements controlled and slow so you can try to feel and predict if you're going to faint.
I'm afraid it will mostly be trail and error until you find something that works for you. And even then when you do think you've found something, just like symptoms, your abilities can change day by day. Try to accept that and do the things that you can!
Good luck!0 -
Sorry for not responding to this for some time — and it being a short response (I’m on a dash right now) — but thank you all for your help and suggestions. I’ll be taking a lot of it to heart and also bringing up much of I with my Cardiologist at the end of the month, because man am I so tired of it getting the better of me.
I just recently volunteered at our local Pride rally and was only out handing out beads and directing people to our booth for two hours, but I had such a bad flare I ended up in the ER from it. So I learned my limits that day (no 2.5 mile walking, and definitely no two hour standing anymore!).
Ah, well — we all learn somehow!2 -
http://www.dysautonomiainternational.org/page.php?ID=43
I'm mild compared to many (able to do upright exerices/cardio/lifting); I do find that focusing on leg strength does help control symptoms (better muscle control in tensing legs without realizing/effort). Like other posters have mentioned, a beta-blocker is pretty standard for controlling large HR fluctuations/rebound effects. I am fortunate enough to respond well to OTC pressors (ironically, I found myself using these often before even diagnosed to get through grinding days of standing 12+ hours continuously).
Intermittently will use short Prednisone courses. There is Fludrocortisone (pure mineralcorticoid) or plain old Cortisone (good mix of glucocorticoid & mineralcorticoid properties) to help people hold onto salt & water; it's one hell of a life altering decision to start using though.0 -
Keto_Vampire wrote: »http://www.dysautonomiainternational.org/page.php?ID=43
I'm mild compared to many (able to do upright exerices/cardio/lifting); I do find that focusing on leg strength does help control symptoms (better muscle control in tensing legs without realizing/effort). Like other posters have mentioned, a beta-blocker is pretty standard for controlling large HR fluctuations/rebound effects. I am fortunate enough to respond well to OTC pressors (ironically, I found myself using these often before even diagnosed to get through grinding days of standing 12+ hours continuously).
Intermittently will use short Prednisone courses. There is Fludrocortisone (pure mineralcorticoid) or plain old Cortisone (good mix of glucocorticoid & mineralcorticoid properties) to help people hold onto salt & water; it's one hell of a life altering decision to start using though.
One thing to note, that Fludrocortisone shouldn't be used long term, and is a fairly aggressive medication. My wife was on it for 3 years, and than it took another year to get her weened off. The one time that a hospital didn't think she needed to be on it, and took her immediately off, she almost died.2 -
Yep, point of no return/palliative care1
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LadyFaustus wrote: »I can’t do Keto because I had gallbladder surgery and can’t process fats anymore. Like. Any of them. Not a lot of the meats used in the Keto diet either? It’s part of what we’re checking with GI. My GI is all messed up. 😩
They don’t have me on IV infusions yet, and we’re discussing whether a beta blocker or Midodrine will be better for my individual case. I go from a resting HR of 55-63 to 117-126, but my BP hasn’t dipped below 94/42 yet. So we’re lucky in that sense, but it still causes a lot of pre-syncope episodes, tons of dizziness, and fatigue.
No one had mentioned L-Citruline before. That’s a new one on me! Going to need to check that out.
You can lower carbs and increase proteins with moderate fat. My wife doesnt have gallbladder either. She has terrible GI issues for years, as well.
Beta blockers practically have a 100% success rate according to my wifes electrophysiologist and the Mayo Clinic. Midodrine was some back side effects on my wife.
Outside of basic treatments most doctors don't have much insight into supplements (outside of potassium or magnesium). I have actually blown my wife's doctor away with some of the diet, exercise and supplementation plans i have brought to them. The keys are high sodium, weight lift if possible (especially thr compound moves like swat, deadlift, bench and OHP as it will increase blood flow, and some supplements like L-Citruline and electrolytes (nuun, propel water, coconut water, etc...).
ETA: my wife is chronically fatigued, so she would try to workout as much as she can.. essentially, some days she couldn't get passed 5 minutes and others she could do an hour. So take it at your pace... Also, swimming is a great exercise. It works a lot of muscles.
Interesting about L-citrulline, because in theory, it should worsen orthostasis from the non-selective vasodilation. I also use but do not find any detrimental effects on dizziness, edema, swelling, lightheadedness, headaches, etc.0 -
Keto_Vampire wrote: »LadyFaustus wrote: »I can’t do Keto because I had gallbladder surgery and can’t process fats anymore. Like. Any of them. Not a lot of the meats used in the Keto diet either? It’s part of what we’re checking with GI. My GI is all messed up. 😩
They don’t have me on IV infusions yet, and we’re discussing whether a beta blocker or Midodrine will be better for my individual case. I go from a resting HR of 55-63 to 117-126, but my BP hasn’t dipped below 94/42 yet. So we’re lucky in that sense, but it still causes a lot of pre-syncope episodes, tons of dizziness, and fatigue.
No one had mentioned L-Citruline before. That’s a new one on me! Going to need to check that out.
You can lower carbs and increase proteins with moderate fat. My wife doesnt have gallbladder either. She has terrible GI issues for years, as well.
Beta blockers practically have a 100% success rate according to my wifes electrophysiologist and the Mayo Clinic. Midodrine was some back side effects on my wife.
Outside of basic treatments most doctors don't have much insight into supplements (outside of potassium or magnesium). I have actually blown my wife's doctor away with some of the diet, exercise and supplementation plans i have brought to them. The keys are high sodium, weight lift if possible (especially thr compound moves like swat, deadlift, bench and OHP as it will increase blood flow, and some supplements like L-Citruline and electrolytes (nuun, propel water, coconut water, etc...).
ETA: my wife is chronically fatigued, so she would try to workout as much as she can.. essentially, some days she couldn't get passed 5 minutes and others she could do an hour. So take it at your pace... Also, swimming is a great exercise. It works a lot of muscles.
Interesting about L-citrulline, because in theory, it should worsen orthostasis from the non-selective vasodilation. I also use but do not find any detrimental effects on dizziness, edema, swelling, lightheadedness, headaches, etc.
So far my wife hasn't had any adverse effects. It has been demonstrated to increase blood flow and increase cardiovascular health due to the increase of the urea cycle (from my mediocre understanding). Running through my wife's EP, he was even intrigued and fascinated by it's effects. Since many of the POTS symptoms are driven by a lower blood volume and pooling in extremities, I was working to find ways to increase blood flow to see if there would be a way to alleviate symptoms.
Over the 8 years that she has been diagnosed, the things that have helped her the most is: beta blocker, a ton of salt, 1L Saline Infusions and heavy weight lifting (mainly compound moves). Weight lifting has a profound impact that even after a couple of days of doing it, her infusion nurses talked about how easy it was to stick her for the infusion (she has deep veins which means she is super hard to stick). And one of the nice benefits of weight training is the increase in blood flow.
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