Anyone else suffer from a disability like POTS?
savannaleann17
Posts: 7 Member
Anyone else have POTS, Asthma or something that makes it impossible to exercise for any real length of time or disables them from certain exercises?
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Replies
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Asthmatic and recently also diagnosed with sarcoidosis. I lift weights....a lot. I also run 5 km 3 times a week. I've learned tof properly breathe while exercising and to respect my limits. Add me if you want1
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Lifelong sports asthma, here. When I exercise, my lungs shut me down way before my muscles do. My chest burns and my throat feels like it is filling with blood, and I'll cough for about 3 days following any rigorous exercise. Yoga helped me master my breathing. But I understand when sometimes willpower isn't enough.2
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I have POTS and do yoga and some strengthening exercises, no cardio. Lunges, squats, some weights.1
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I have exercised-induced asthma (for which the best treatment is, ironically, exercise.) If I use my inhaler, I can tolerate it. My daughter has EDS, but fortunately no POTS - she stays away from anything that puts too much stress on her joints. Swimming is ideal for her - would the extra buoyancy from the water help with the POTS?0
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I have Pots. I can still do sitting cardio like stationary biking while not in a flare up episode. I recently started taking a beta blocker which helps incredibly but haven't been able to try cardio since for other mechanical health reasons. In general walking is my main/only exercise. I try to walk around 10k steps a day which is about 300cals for me. Lately I haven't been able to do even that and it sucks cos I maintain at 1450 if I don't walk. So my diet is on hold and maintaining at the moment.
But in general, no, I can't do any normal cardio. During a flare up I can't even swim. Ended up in the emergency after a pathetic swimming attempt 3 weeks ago...
I envy all people who can do cardio and eat more!0 -
What's does POTS stand for?
As a cardiac nurse I assumed it was Postural Orthostatic Tachycardia Syndrome - a pretty rare disorder where your heart rate goes through the roof every time you stand.
It sounds like you guys are talking about something different but I don't know what it is!2 -
What's does POTS stand for?
As a cardiac nurse I assumed it was Postural Orthostatic Tachycardia Syndrome - a pretty rare disorder where your heart rate goes through the roof every time you stand.
It sounds like you guys are talking about something different but I don't know what it is!
@lizery Nope, that is exactly what I have. When I stand my pulse doubles to tripples (goes from 60 to 160 or above and stays there). I've had this for the most of my life. The condition worsens after infections and such hence the flare ups I'm talking about.
It is not such a rare condition either. It is just often misdiagnosed due to lack of knowledge in GPs.0 -
gebeziseva wrote: »What's does POTS stand for?
As a cardiac nurse I assumed it was Postural Orthostatic Tachycardia Syndrome - a pretty rare disorder where your heart rate goes through the roof every time you stand.
It sounds like you guys are talking about something different but I don't know what it is!
@lizery Nope, that is exactly what I have. When I stand my pulse doubles to tripples (goes from 60 to 160 or above and stays there). I've had this for the most of my life. The condition worsens after infections and such hence the flare ups I'm talking about.
It is not such a rare condition either. It is just often misdiagnosed due to lack of knowledge in GPs.
It's described in the literature a pretty rare and certainly not common!
Is this the same thing the other posters are referring to. If so, out of curiosity what is the relevance of water, yoga, less pressure on joints?
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... I'm interested as I have had patients diagnosed with POTS after monitoring, tilt testing, endocrine e work up etc and they get sent home usually on a beta blocker or fludrocortisone or even antidepressants for off label use because of their effect on the autonomic nervous system.
When they leave the hospital I don't really have any knowledge of how they get on. We see people acutely but no real follow up so I am interested to follow this thread.
Recommendations for the patient I have had have been start with laying down exercise then work up to recumbent, then eventually standing exercise over months.
Obviously my experience with how that plays out once they are discharged is lacking.0 -
gebeziseva wrote: »What's does POTS stand for?
As a cardiac nurse I assumed it was Postural Orthostatic Tachycardia Syndrome - a pretty rare disorder where your heart rate goes through the roof every time you stand.
It sounds like you guys are talking about something different but I don't know what it is!
@lizery Nope, that is exactly what I have. When I stand my pulse doubles to tripples (goes from 60 to 160 or above and stays there). I've had this for the most of my life. The condition worsens after infections and such hence the flare ups I'm talking about.
It is not such a rare condition either. It is just often misdiagnosed due to lack of knowledge in GPs.
It's described in the literature a pretty rare and certainly not common!
Is this the same thing the other posters are referring to. If so, out of curiosity what is the relevance of water, yoga, less pressure on joints?
The connection to the joints is that often Pots is connected to EDS and joint hypermobility syndrom where the elasticity of the blood vessels is affected. The relevance to water is that Pots is connected to hypovolemia.
I'm a bit surprised that you're asking. One would think that the cardiology personnel would know more than us.
My cardiologist is doing tests on me currently to find the underlying condition. Sending people home with beta blockers is due to lack of care in my opinion.
ETA: If you were asking about water as in swimming then it is just sometimes an option as you are not standing. But I can't do it either at times. During a flare up any exertion is impossibble.0 -
gebeziseva wrote: »gebeziseva wrote: »What's does POTS stand for?
As a cardiac nurse I assumed it was Postural Orthostatic Tachycardia Syndrome - a pretty rare disorder where your heart rate goes through the roof every time you stand.
It sounds like you guys are talking about something different but I don't know what it is!
@lizery Nope, that is exactly what I have. When I stand my pulse doubles to tripples (goes from 60 to 160 or above and stays there). I've had this for the most of my life. The condition worsens after infections and such hence the flare ups I'm talking about.
It is not such a rare condition either. It is just often misdiagnosed due to lack of knowledge in GPs.
It's described in the literature a pretty rare and certainly not common!
Is this the same thing the other posters are referring to. If so, out of curiosity what is the relevance of water, yoga, less pressure on joints?
The connection to the joints is that often Pots is connected to EDS and joint hypermobility syndrom where the elasticity of the blood vessels is affected. The relevance to water is that Pots is connected to hypovolemia.
I'm a bit surprised that you're asking. One would think that the cardiology personnel would know more than us.
My cardiologist is doing tests on me currently to find the underlying condition. Sending people home with beta blockers is due to lack of care in my opinion.
ETA: If you were asking about water as in swimming then it is just sometimes an option as you are not standing. But I can't do it either at times. During a flare up any exertion is impossibble.
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I don't have pots as far as I know but when I'm severely anaemic (I have crohn's) I have very similar symptoms. When I'm not anaemic my heart only races a bit but my blood pressure tanks (it's low to begin with my normal is 90/50) when I stand up.1
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I know about the hypovolemia but not the joints connection which is why I was asking. This is not a condition I have had a great deal to do with. I was asking about the comment to exercise in water. Not about keeping up fluid intake etc.
I'm a cardiac nurse, not a cardiologist and deal mostly with common conditions such as heart failure and myocardial infarction, common arrhythmias etc. I know a little about POTS but am certainly not an expert on this syndrome.
Given that there are potentially many causes for POTS as far as I'm aware I'm not sure why you would consider beta blockers lack of care. That was certainly not the only class of drug I mentioned. You even wrote yourself that you have recently started a beta blocker that I your words had 'helped tremendously'.
.........
Anyhow, I was trying to clarify that I was thinking of the same condition to follow the conversation here and maybe get a little insight into the chronic nature of the the condition, not to get sarcastic 'I'm surprised you don't know more than that if you work with cardiac patients'.
I'm not really interested in getting involved in sarcastic who knows more discussions.
Thanks for clarifying that people on this thread are meaning Postural Orthostatic Tachycardia Syndrome when they wrote POTS. Often there are more than one meaning for the same acronym and I wanted to make sure I was thinking of the same thing when reading posts.0 -
I also have POTS from chronic Lyme disease. some days I can do strength stuff but I've completely given up on cardio. I like yoga and slow biking, climbing, walking, and kayaking. POTS has also effected my digestive tract so I have a hard time eating enough to have the energy to exercise.0
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gebeziseva wrote: »What's does POTS stand for?
As a cardiac nurse I assumed it was Postural Orthostatic Tachycardia Syndrome - a pretty rare disorder where your heart rate goes through the roof every time you stand.
It sounds like you guys are talking about something different but I don't know what it is!
@lizery Nope, that is exactly what I have. When I stand my pulse doubles to tripples (goes from 60 to 160 or above and stays there). I've had this for the most of my life. The condition worsens after infections and such hence the flare ups I'm talking about.
It is not such a rare condition either. It is just often misdiagnosed due to lack of knowledge in GPs.
It's described in the literature a pretty rare and certainly not common!
Is this the same thing the other posters are referring to. If so, out of curiosity what is the relevance of water, yoga, less pressure on joints?
It is still fairly rare. IIRC about 1 million known cases with potentially around 2 to 3M undiagnosed cases. It's still fairly new in terms of literature. First brought into light around the late 90's and starting to pick up in terms of being studied.
Universally, beta blockers have been pretty much 100% successful in terms of being beneficial (at least according to the Mayo Clinic, who has been one of the leading researchers for POTS). Fluronef/Fludrocortisone are also very effective, especially if you have one of the more severe cases of POTS. One of the bigger issues with POTS, is there are a huge range of symptoms and causes. For my wife, she has fairly chronic fatigue (from depletion of electrolytes), elevated heart beat (resting is 90 to 120), swelling and a few other issues. She cannot do cardio at all and has some food intolerances (i.e., dairy and gluten). There are a handful of things that have helped my wife: ~10,000mg of sodium per day, electrolyte drinks (nuun, emergen-c, zippfizz, NA hydration drink), beta/fluronef (off this now because they are a big aggressive of a drug), IV infusions (2x a week at a cancer center - this most effective treatment to date for my wife), weight training, and pregnancy (since your body doubles blood volume).
For weight training, my wife (with my assistance) follows a program like Starting Strength or StrongLift. It focuses on the big 4 lifts and does not involve laying down. This has really helped her as weight training can push more blood volume too (even her IV techs noticed a difference).
Alternatively, you might here this as an orthostatic intolerance or dysautomia. Below is some good information on it.
http://www.mayoclinic.org/medical-professionals/clinical-updates/endocrinology/postural-orthostatic-tachycardia-syndrome-and-chronic-fatigue-in-adolescents
https://community.myfitnesspal.com/en/discussion/10305794/pots-or-other-invisible-illness-and-weight-loss0 -
lennysperson wrote: »I also have POTS from chronic Lyme disease. some days I can do strength stuff but I've completely given up on cardio. I like yoga and slow biking, climbing, walking, and kayaking. POTS has also effected my digestive tract so I have a hard time eating enough to have the energy to exercise.
My wife improved her digestive issues when she cut out gluten and a lot of dairy (she can do hard cheese and greek yogurt, but not milk).1 -
People with POTS get my respect and admiration. Everyday they wake up not knowing how their body will react. Even when their body is not up to par they still live their lives, work, go to school as if nothing is wrong with them.
Hope you guys all get better!1
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