The Contradictions Between POTS and ME and CFS

[@ivintila]

Explore further with my meditation and reflection journal prompts, available in the free POTS Resource Hub. Register once at learn.ivintila.com/pots-resource-hub/order/ to access these resources and more accompanying each video for free.

[@politereminder6284]

I consider POTS to be secondary to the chronic fatigue and fibromyalgia diagnoses that I have. In other words, I think of it as a symptom of a larger syndrome in my body. Perhaps there are people who have POTS minus ME/FMS, but in my case, I treat it as a symptom. I look to reduce symptoms by BOTH pacing and exercise. For POTS , I drink loads. I swim slowly for horizontal exertion without increasing POTS symptoms. For ME, I rest a lot, and pace my movement and exercise.

[@Truerealism747]

Had CFS 26 years I had pots but now.fybromyalgia 6 years found out I have Asperger's add heds.reason.foe it after a accident.just list my.mum.to severe ms heds Asperger's

[@Irrlichtwinter]

It's really interesting to hear all this. I am not diagnosed with anything yet, but am one of those people who are struggling post The Virus infection, to the point where even sitting in a chair has been too much some days. But I have, as long as I can remember, also noticed that I don't recover from excercise the same way other people do. With others, there would be a point after a few weeks where they started getting stronger & improving, while for me, I start out fine, and then just get increasingly weaker day by day. It's like I just get pain on top of my pain, and there isn't the kind of improvement other people see. The exception are stretching things like yoga (where I don't actually get out of breath, and can take it slow). I will definitely be looking into this more, and keep it in mind when going in for a diagnosis.

[@wattsizname]

Hi Ioana. I have ME with orthostatic intolerance type symptoms. I've been doing some heart rate testing. My sitting resting heart rate is quite low normally, though when I stand up it does increase but not enough to be diagnosed with POTS. The strange thing is when I'm dealing with PEM my resting heart rate can increase by over 20 bpm. Even some gentle exercise doesn't always do that! Bizarre. Thanks for your content🌻👍

[@ivintila]

Hi Gerry, nice to hear from you. Hope you're doing okay! That's very interesting about the connection between PEM and the increased heart rate. I suppose it shows how the body is "stressed" and trying to recover. Perhaps it's trying to metabolize the lactate that has accumulated and return the body to homeostasis (one theory). Thank you for sharing.

[@prescottperfection6354]

The effect of ME on the heart is crazy and definitely needs to be studied more! I have both ME & POTS and am on 10mg of ivabradine daily for my POTS (a heart failure medication/pacemaker that lowers the heart rate). This was working perfectly at keeping my standing HR roughly the same as my resting HR until a recent PEM episode. My HR increased 80 bpm again just from standing up despite taking ivabradine! I couldn’t believe it. It’s like the ivabradine just became completely ineffective due to my ME! This was sustained throughout the week long PEM episode too.

[@wattsizname]

@@prescottperfection6354 yes I agree about more study and research on this. Wow that's a huge increase you describe! I hope things have settled down a bit now.

[@chihuahuapixieprincess2482]

I definitely have ME, I get PEM: fees like flu/mono/migrane, however I have developed POTS and POTS definitely explains the heavy dead legs and heart rate all iver the place. I always feel far far better lying down.

[@ivintila]

It's useful to know what is as then we can take measures to not make the symptoms worse

[@oliverbird6914]

Are you sure you don't have m.e.?

[@chihuahuapixieprincess2482]

@@oliverbird6914 Yes, you're right I do have ME - had it for 28 years now but seemed to have POTS symptoms in the morning for 3 years. Just been for a test and awaiting results 😁

[@oliverbird6914]

@@chihuahuapixieprincess2482 it sucks doesn't it

[@wetelectronics238]

I think we are talking about a spectrum of illnesses - POTS may be totalling peripheral and involved just OI from reduced venous return and stroke volume or it may comprise a central inflammatory process where symptoms of fatigue, sound sensitivity or increased pain sensitivity may predominate. We might call it a different syndrome but the comorbidity suggests a spectrum might be more appropriate - Abnormal cardiac MIBG reuptake was found in a cohort of both POTS and CFS; low small fiber nerve density in a cohort of POTS and Fibro patients

[@chihuahuapixieprincess2482]

Thank you so much for your explanation ❤

[@ivintila]

I'm happy it helped.

[@mrsdajc4]

Helllo! I absolutely love all of your informative content! I am a little hard of hearing, and was wondering if you’d be willing to invest in a microphone so that I can binge all of your videos!🥰

[@ivintila]

Thank you! I actually just bought one, so that should help 😅 in the meantime if you turn on closed captioning that might help. The captions have been mostly edited and should be accurate.

[@mrsdajc4]

@@ivintila Awesome!🥰 I have ADHD, and like to move about while I listen! The microphone will be a tremendous help as I continue to learn about this illness, and get tasks completed!♥️

[@frcfun8328]

Diagnosed with post-viral me and pots. My experience is while I'm able to do light anaerobic activities (eg weight training or yoga) without worsening, even the slightest aerobic activity (walking ~30 meters) deteriorates my health sometimes permanently, so as much as I pushed through at the beginning, now I cannot take that risk anymore being already mostly bedbound.

[@ivintila]

I'm sorry that you're having to go through this. That's an important distinction between aerobic and anaerobic activity. I've noticed this a lot too with my post-viral clients. It also tends to affect their sleep and flare-ups more. How does yoga or weight training make you feel? Have you noticed that you can do a bit more (either strength-wise or perhaps feeling less symptomatic)?

[@frcfun8328]

@@ivintila thanks for your answer, Ioana. I can only speak for my case obviously, I only see benefits in weight training in the sense that I've always enjoyed doing it, so it's good for the mood, and it helps slowing down deconditioning that obviously occurs being mostly bedbound. So in this sense is beneficial, as long as I rest as much as I feel I need between the sets and reps. I had no benefits with regard to the other symptoms unfortunately. I just wanted to point out the difference between dangerous aerobic training vs tolerable anaerobic training, in my case. Oh and also I'd like to add, from my experience, even sitting up for a long time (about 3 hours for a flight) caused a permanent worsening, in fact I can't sit up more than half an hour now. I think that even in that cade it was due to "aerobic activity" although I didn't move, because the heart rate was increased anyway during all that time, so in a way it was like a 3h brisk walk

[@danutat9915]

​@@frcfun8328great explanation...thanks for sharing your experiences ...it furthers research and understanding of how it all affects one...❤✌🇨🇦 If you have any more information about your experience please share thank you....❤✌🇨🇦🌻

[@milagrosmos]

Great content 👍🏼

[@ivintila]

Thank you

[@B3l0v3d05]

All are dysautonomia and under the umbrella of dysregulated nervous system. Can be due to lots of causes but that's what it comes down to. Overactive fight flight freeze responses

[@danutat9915]

You are so effortlessly correct! Any more information to share? Please you know what you are talking about and just want to learn more about my devastating experience. Thank you in advance ❤

[@B3l0v3d05]

@@danutat9915 There are different brain retraining programs and ME/CFS programs that can help. CFS Health, CFS School, DNRS, Gupta Program, Primal Trust, Vital Side, etc

[@Shannon_Robbie]

@@B3l0v3d05 Which one do you recommend from your list?

[@prescottperfection6354]

ME is not a form of dysautonomia. Dysautonomia is one of the symptoms of ME. ME is a much more complex illness involving multiple systems in the body, not just the nervous system. Mainly the energy/ATP system and the immune system.

[@savannahbogamers0723]

Nervous system dysfunction can cause pots or ME. She is talking about neuroplasticity to retrain your brain/nervous system so you don’t have symptoms/reduce systems anymore.

[@marinabattaglia5385]

Great video. But I still don’t get it. What’s the difference between POTS with PEM and ME/CFS?

[@ivintila]

If there's POTS with PEM, then it looks pretty similar to ME/CFS. One of the biggest pieces of advice about POTS seems to be exercise, which then becomes a lot more difficult with PEM. So then what can be useful is blending some of the things that help with POTS such as the many medications and diets available that help with symptoms while pacing and strengthening the nervous system and learning from the ME/CFS movement.

[@lisachristinaconfirmed5067]

@@ivintila is it even considered PEM when we are talking POTS?? Part of POTS IS exercise intolerance and setbacks or what you are referring to as PEM. Which may or may not be the same.

[@Shannon_Robbie]

@@ivintila And exercise doesn't help if you have ME/CFS with PEM. In fact it can make it worse and cause a setback. That's what I've noticed anyway.

[@Truerealism747]

​@@Shannon_Robbieyet they say it helps fybromyalgia.

[@Truerealism747]

​@@Shannon_RobbieAbe heds to CFS decades Dr lenz ADHD fybromyalgia CFS connection

[@bea29able]

They pretty sound like the same disease. I think they are both caused by reactivated EBV and other things like vitamin d deficiency or toxic metal fillings.

[@ivintila]

Looking at toxicity and viral/bacterial infections etc is one possible reason. I feel it might be different for different people, but it's one avenue worth exploring. Thanks for sharing!

[@Truerealism747]

​@@ivintilaremoving my metal.fillings cured my sinus issues after 15 years with asperger's we can't clear toxins but I have a stainless steel pin in my leg will that cause symptoms though I had CFS before but not fybromyalgia

[@prescottperfection6354]

They are different conditions. POTS can be a symptom of ME which I think is where your confusion lies, as they both have orthostatic intolerance. I had POTS for years before also developing ME and trust me, you can tell the difference! PEM is the main symptom of ME and is not present in POTS, for example.