Differentiating POTS from ME - Harder than it sounds.

[adreno]

My last relapse was triggered by doing cardio for about 20 mins 6 days in a row, where my heart rate was around 160-170bpm. I wonder if low rep weight lifting or even isometric training would prevent deconditioning/PEM? It's tricky to know what the best/safest training program would be.

Aerobic is definitely the absolute worst exercise for ME. It could work for POTS, though. For ME, anaerobic low-rep exercises would be the way to go.

 

[arewenearlythereyet]

I am also mild and have a very low base rate (48bpm). For me the heart rate monitor is the key. Some days I can walk 20 min without heart rate entering the danger zone (100-120bpm), other days it can go up into the danger zone just sat on the sofa. These days I stay on the sofa. I've just come out of an 8 week fatigued state after getting a virus. I managed to walk my 20 min yesterday for the first time, but blew it and had a couple of minutes over 120 bpm. I have definitely noticed a drop in stamina if I have periods longer than 2 weeks inactive and tend to be at risk of overdoing it more than when I'm doing 20 min light walking every day.

I have never enjoyed active exercise so I wouldn't say that I do this for any other reason than to try and remain as fit as I can and maintain what I have. I was capable of shoveling and spreading 9mT of gravel from tote bags by hand in a few hours solid work before I got ill though. Weird example but it is a stark contrast to what I can do now.

I have lost most of my upper body strength so lifting weights greater than 5kg tends to make me go into PEM more than very light aerobic activity.

 

[Dechi]

@AdamS It took me a while but I found something that works after reading an article about Dr Cheney's training recos. I lift for 15-20 seconds (up to 15 reps, start at 6 or 8) then wait until my heart rate goes back to its resting state. That takes 2-4 minutes. Then I do another set, and so forth. If you do this for 45 minutes, you'll do 2 muscles groups and abs, with 3 sets of each. And you'll have worked out for about 4 minutes. Only do it on good days, and never on 2 consecutive days. 45 minutes max. Start with 20.

Or, if you want to do more cardio work, you need to stop after 2 minutes, because that's when you'll be starting to use the damaged aerobic pathway, which is what causes PEM. I can do a max of 3 bouts of 2 minutes with 5-6 minutes of rest in between. That will take me about 45 minutes also.

Dr Nancy Klimas has good advice about working out too. You should find it easily.

 

[katiekristine]

Has anyone considered the possibility that ME/CFS and POTS could simply be two sets of possible symptoms resulting from the same phenomenon?

It seems to me that people with ME/CFS exhibit different sets of symptoms depending on their biology and environment. For example, some present with (1) dizziness/ O.I. and no muscular pain, while others present with (2) muscular pain and no dizziness/ O.I. In fact, some patients who experience the first set of aforementioned symptoms later progress to the second set of aforementioned symptoms. These symptoms are fluid with no clear boundaries.

Chronic immune activation, such as that caused by a chronic infection, could theoretically cause *all* of the symptoms that are required for a diagnosis of either POTS or ME/CFS.

Thus, it is entirely possible that these two "syndromes" are simply outcomes caused by the same phenomenon (chronic immune activation), which differ based upon the patient's biology and environment. After all, "POTS" and "ME/CFS" are merely *syndromes*, or "a set of symptoms". These symptoms can be interchangeable!

For example, I was diagnosed with POTS via a tilt table seven years ago. My only symptoms included O.I., syncope and gut disturbances. Four years later, I experienced a profound switch in my symptoms. My O.I. and syncope greatly diminished, and I developed true PME, swollen lymph nodes, sore throat and hoarse voice, bone pain, muscular pain, swollen face and legs, and other symptoms indicative of "ME/ CFS".

My suspicion is that *all* of these symptoms have been caused by the same phenomenon--lowered immunity and chronic infection. I have extremely high HHV-6 and Parvovirus IgG antibodies. ********After nearly 6 months of taking Valcyte, my symptoms have improved tremendously. At 5 months and 3 weeks of the antiviral, my O.I. has improved greatly, as well as many of my other symptoms. I plan to continue the antiviral protocol for a full year, to retain the treatment's full benefits.

I hope that this helps!

Cheers and love,
Kristine

 

[AdamS]

Has anyone considered the possibility that ME/CFS and POTS could simply be two sets of possible symptoms resulting from the same phenomenon?

It seems to me that people with ME/CFS exhibit different sets of symptoms depending on their biology and environment. For example, some present with (1) dizziness/ O.I. and no muscular pain, while others present with (2) muscular pain and no dizziness/ O.I. In fact, some patients who experience the first set of aforementioned symptoms later progress to the second set of aforementioned symptoms. These symptoms are fluid with no clear boundaries.

Chronic immune activation, such as that caused by a chronic infection, could theoretically cause *all* of the symptoms that are required for a diagnosis of either POTS or ME/CFS.

Thus, it is entirely possible that these two "syndromes" are simply outcomes caused by the same phenomenon (chronic immune activation), which differ based upon the patient's biology and environment. After all, "POTS" and "ME/CFS" are merely *syndromes*, or "a set of symptoms". These symptoms can be interchangeable!

For example, I was diagnosed with POTS via a tilt table seven years ago. My only symptoms included O.I., syncope and gut disturbances. Four years later, I experienced a profound switch in my symptoms. My O.I. and syncope greatly diminished, and I developed true PME, swollen lymph nodes, sore throat and hoarse voice, bone pain, muscular pain, swollen face and legs, and other symptoms indicative of "ME/ CFS".

My suspicion is that *all* of these symptoms have been caused by the same phenomenon--lowered immunity and chronic infection. I have extremely high HHV-6 and Parvovirus IgG antibodies. ********After nearly 6 months of taking Valcyte, my symptoms have improved tremendously. At 5 months and 3 weeks of the antiviral, my O.I. has improved greatly, as well as many of my other symptoms. I plan to continue the antiviral protocol for a full year, to retain the treatment's full benefits.

I hope that this helps!

Cheers and love,
Kristine

Hi Kristine, thanks a lot for your contibution, I think what you say makes a lot of sense. It's also interesting to hear about the way your symptoms have changed over time.

 

[AdamS]

@Dechi @Murph @adreno

Okay so I was inspired by some of the posts on this thread and decided to go to the gym tonight...my plan is to go twice a week with a 3-4 day rest period between each session. On rest days i'll stick to my usual routine of short walks depending on how I feel.

Day 1 - Lower Body + Core
Day 2 - Upper Body + Core

The upper body session I did tonight was as follows:

3 x 5 reps 20-30kg bench press
3 x 5 reps Seated Cable Row 12kg ish
3 x 8 reps Crunches on Swiss ball

Between each set I tracked my heartrate on my Fitbit, it took around 1-2 mins to come back down to 65-70bpm. I also took 10mg Propranolol and 2.5mg Midodrine for POTS.

Hopefully i'll be PEM free tomorrow. I know that the session outlined above looks like a normal person's warmup but I just wanted to be super safe to begin with and build up really slow. One thing i've found is that it's hard to not get out of breath/dizzy whenever I work out, i'm not sure if that's the POTS or ME but using 5 reps seems to help/prevent that.

 

[Murph]

@Murph

Very good point, in fact you're right, I could probably do some really light exercise and not experience PEM as long as I have rest days in between. I'm just a bit scared to start proper exercise again after my last few failed attempts, I do try to go on regular walks of about 1-2 miles per day and don't get PEM from that.

What sort of exercise do you find useful? My last relapse was triggered by doing cardio for about 20 mins 6 days in a row, where my heart rate was around 160-170bpm. I wonder if low rep weight lifting or even isometric training would prevent deconditioning/PEM? It's tricky to know what the best/safest training program would be.

I've personally found that anything involving sustained cardio effort is bad. I can do some cardio, but it is better to be stop-start activity.

For example, in one of my "remissions" I could trigger PEM by jogging for 30 minutes, but playing a 90 minute soccer game would not trigger PEM, because even though there are high intensity moments, there are moments where you're just standing there. Those rests are apparently crucial for me.

In my current, mild state, I find I can walk my dog most days, but I feel much better after "city" walks where I pause at a lot of traffic lights, than "country" walks where I just trudge along non stop.

If I were you (and of course everyone is different) I would not aim for anything like keeping your HR in X zone for for Y amount of time. I think being able to regularly walk 2 miles a day is pretty damn good and maybe if you add in some light strength work you'll be doing more than 90% of the entire population!

So the tl;dr what works best for me is exercise broken up with rests.

 

[Strawberry]

CellTrend differentiates POTS and ME antibodies though their test is considered experiment and needs to be verified by additional studies

Do you know which antibodies relate to POTS and which relate to ME? I have 3 positives to the CellTrend test and am curious.

Thanks in advance!

 

[Jesse2233]

Do you know which antibodies relate to POTS and which relate to ME? I have 3 positives to the CellTrend test and am curious.

Thanks in advance!

According to CellTrend's site...

ME

• Beta-1 adrenergic receptor auto-antibodies
• Beta-2 adrenergic receptor auto-antibodies
• Muscarinic cholinergic (M3) receptor auto-antibodies ELISA
• Muscarinic cholinergic (M4) receptor auto-antibodies ELISA

POTS

• Beta-1 adrenergic receptor auto-antibodies
• Beta-2 adrenergic receptor auto-antibodies
• Muscarinic cholinergic (M1) receptor auto-antibodies
• Muscarinic cholinergic (M2) receptor auto-antibodies
• Muscarinic cholinergic (M3) receptor auto-antibodies
• Muscarinic cholinergic (M4) receptor auto-antibodies
• Muscarinic cholinergic (M5) receptor auto-antibodies
• Alpha-1 adrenergic receptor auto-antibodies
• Alpha-2 adrenergic receptor auto-antibodies

Looks like there's some overlap. Which ones were you positive on?

 

[Dechi]

@AdamS I was reading some of Dr Hyde's material today and according to him, ME is caused by an Enterovirus, mainly, that causes chronic infection resulting in dysfunction of the brain (hypoperfusion) and the overall body functions. The area of the brain responsible for dysautonomia (POTS is a type of dysautonomia) is the operculum, which is affected in most cases in severe ME patients. My brain has been tested for hypoperfusion, which I have, but my operculum (insular lobe) isn't affected, which explains why I don't have POTS.

So POTS is entirely linked to ME.

Your workout looks good ! Just readjust if need be (do less) and most of all don't be tempted to increase once you've found the right combination. You most probably won't progress once you've found it, so try not to have any expectations.

Sometimes I can increase a little bit for a short period, but it never lasts. Most of the time I meed to tone it down...

 

[halcyon]

ME is caused by an Enterovirus, mainly, that causes chronic infection resulting in dysfunction of the brain (hypoperfusion) and the overall body functions.

Along these lines, enterovirus RNA has also been found in ME patients skeletal muscles. People like Dr. Dowsett warned heavily against exercising infected muscle.

Enterovirus replication is dependent on cell cycle status. In quiescent cells, the viral genome will just sit there not doing much, but if you can induce cell division, viral translation and replication will pick right up. One great way to do this is to injure the cells (i.e. what happens during weight lifting). This isn't really too far out there, as this is exactly what happens in provocation poliomyelitis.

Personally, I've found that muscle use is the easiest way to cause PEM, regardless of heart rate or whether it's aerobic or anaerobic. I'm always surprised when other people with this disease are able to use their muscles without it making them really sick.

 

[Dechi]

@halcyon I always feel bad after lifting. I feel weak and shaky. If I kept going I would faint. But since it's only for 15 seconds at a time, I can tolerate it. It's a delicate game of finding just the right amount of suffering. I wouldn't do it if I didn't think preservimg muscles had a purpose. I am also convinced I am better when I do it than when I don't. Providing I can, of course. I can be 2-3 weeks at a time, sometimes more, without doing anything, because I am in bad shape.

 

[taniaaust1]

Noticing these POTS flares seems like a useful way to distinguish POTS symptoms from ME/CFS symptoms. However, I think this applies more to people who (perhaps because of their particular POTS subtype) have exacerbations of symptoms on standing, or on raising their arms above their head, etc.

as far as Im aware all POTS patients hvae exacerbations of symptoms on standing or " being upright"..other symptoms to being upright other then the heart rate may not kick in straight away but will kick in while still in act of being upright. It is a orthostatic illness so symptoms orthostatically induced.

In my case, although I am self diagnosed with POTS (my heart rate increases by around 25 to 40 points on standing from a relaxed lying down position), I don't get any noticeable symptoms on standing, and I don't get any noticeable POTS flairs.

If you dont any orthostatic symptoms at all . are you sure the heart rate is in fact raising to the actual standing .. maybe its raising due to anxiety on testing it??? At one of my local hospitals they wont tilt table test for POTS in anxious people in case the anxiety causes them to have more rapid heart to standing just due to the testing anxiety and believing this will happen. (they said my anxiety could screw up the POTS testing due to the expectation it will go up on testing).

Note that in the home test for POTS, an increase in heart rate by 27 points or higher on standing is diagnostic for POTS. In the tilt table test performed in a doctor's office, you need a 30 point or high increase for a POTS diagnosis.

No.. it should be 30 point increase no matter where it is done (this helps to rule out things such as anxiety to standing putting it up. Originally years back when POTS was first becoming known about, they used to say a raise of 25 beat per minute... then later that went to 28.. now its 30. As time as gone on they have toughened up diagnostic criteria.

Some places would not give a POTS diagnoses just based on that either, in some places they expect you also to be getting orthostatic intollerance for a POTS diagnoses thou other places wil give POTS diagnoses just based on the heart rate increase.

 

[Hip]

No.. it should be 30 point increase no matter where it is done

A medical professional I know told me that "Dr Raj has said in one of his other papers that lying to standing 27 point increase is equivalent to 30 points on tilt test."

The Dr Satish Raj paper in question I think may be this 2006 one, which says:

However, the physiology in response to passive standing on a tilt table (with the legs still) is not the same as “active standing” where the patient must support their own weight and maintain their balance. The latter requires use of the “skeletal muscle pump” and mimics real life, while the tilt table does not. For this reason Streeten et al. use similar criteria for orthostatic tachycardia (>27 bpm), but only with active standing [18].

However, I appreciate that this 2006 paper might now be a bit out of date. Would you have links to more up-to-date authoritative sources for POTS diagnosis criteria? I'd like to put any more up-to-date info in my roadmap, which details POTS testing.

If you dont any orthostatic symptoms at all . are you sure the heart rate is in fact raising to the actual standing .. maybe its raising due to anxiety on testing it???

Pretty sure my increase in heart rate on standing is unconnected to any anxiety symptoms. There's nothing even remotely anxiety-inducing about standing up from a lying down position in the privacy of my own bedroom. I have tested myself dozens of times over the years, and get heart rate increase of up to 40 bpm on the home active standing test.

Possibly my lack of POTS symptoms on standing might relate to the wiry physique and taut muscles I have, which may compress my blood vessels and prevent blood pooling in my lower limbs on standing.

 

[taniaaust1]

Thanks a lot.

Background/Context
Okay, to give you a bit of context, prior to falling ill I was in the best shape of my life, I was a former County level athlete, could perform 15-20 wide grip pull ups consecutively and was at about 7% bodyfat. I'd been training quite excessively for months doing bodybuilder splits about 4-5 times per week before I finally crashed at the gym. Sometimes I feel that i'm not as bad as some people but in relative terms you could say that my functional decline has been pretty extreme.

Relapses/PEM
I have experienced 3-4 major relapses in the past 6 months, all of which have occurred after over exerting/going to the gym, each relapse happened after less exertion than the last. These relapses generally last for 2-3 weeks until I recover back to baseline and leave me pretty much sofa bound, hardly able to walk because of weakness/lactic acid in my legs, general malaise, mild sore throat, headache etc.

That's where the difference lays there, trigger was gym.. exercise trigger can induce both a ME crash or POTS with upright exercise.. coming on but the thing is your crash lasted 2-3 weeks. A crash from exercise if it was just POTS it wouldnt last for weeks. That's ME.

So I'd think if you had a POTS diagnoses that you also have coexisting ME/CFS as well.

If I was to describe how I feel when I wake up, it would be that i've just run a Marathon and been beaten up by Mike Tyson in my sleep.

that description there is also not POTS but a common ME/CFS description.

My last relapse was triggered by doing light cardio for 20 mins at the gym 5-6 days in a row, I started feeling very fatigued, then woke up feeling really groggy with a sore throat, weakness, severe fatigue and malaise which took about 2 weeks to recover from.

ME/CFS

Looking at your history is very clear that u dont just got POTS. Note - Cardio can be quite bad for ME/CFS. Where as for POTS, standing still can be one of the very worst things for that.

Baseline

Now i'm back at baseline, I am able to do some things like drive for 30 mins, socialise a bit, drink small amounts of alcohol, go to bars if I feel well enough. I can't walk much further than 2 miles because of severe migraines/orthostatic headaches and can't watch TV programmes for long.

A person with only POTS doesnt have issues watching TV programs while laying down. You still have ME/CFS flaring.

I can't lift my arms above my head for long without triggering a huge POTS flare.

that's so bad for my POTS too

I can't lift weights or squat because it makes me super light headed,

think of that as a double whammy activity for you. Its bad for ME as it gets heart rate up.. and bad for setting off a POTS flare as its an upright activity.

if I walk up hills I get out of breath within minutes and have to sit down. As long as I don't do something stupid like 30 minutes cardio or weights 2-3 days in a row, I don't really get PEM,

another distinguishing factor there too. with POTS, it doesnt care how many days in a row you do an activity. It doesnt have that over days build up thing go on with ME/CFS does where what you did day before matters to how how you do the next day and the day after.

[/quote] in fact i've stopped exercising completely to avoid it. [/quote]

that "may" not be a good idea. its better if u can work out if you can any level of exercise at all without setting off symptoms before thinking about entirely quitting activity completely (do u have a low safe amount at all before u do? do you try to see tis or did you just completely quit?) . The thing with POTS is inactivity can make it worst.. issue is too much activity of cause makes ME/CFS worst.

Sometimes one can still exercise "a little" by a little I mean not enough to set off symptoms if one only exercises every few day,s a little . (dont try doing daily exercise with ME/CFS as this will screw you as our bodies need a good rest in between, if you do daily exercise or even for some every second day exercise, it may mean your body isnt getting the rest it needs. Our bodies need an extended period to rest up from anything.

My fairly severe ME/CFS I believe has helped to caused my POTS cause I cant exercise due to the ME/CFS being made worst.

In terms of immediate symptoms, if I was to do say 2000m on a rowing machine and then stand up after, I would quickly get very dizzy and lightheaded (sort of pre-syncope level), unable to follow conversations etc and i'd have to sit/lay down to recover which would take about 30-40 mins, I guess this is the POTS.

That's a tricky one as ME/CFS people dont do well with sudden heart rate increases either (many with ME/CFS who may not have POTS wear heart rate monitors due to avoiding things like that) and and may quickly have a quick sudden crash to something like that which is more aeorbic but who's to say, it could be the POTS too. In that situation I personally wouldnt attempt to label illness thing caused the 30-40 mins of needing recovery.

Think like this... there is less stamina then normal in ME/CFS, so any ME/CFS patient wont last long at any intense activity. Its often repetively doing an activity eg say doing that one day and then doing that the next and the next, which leads to one of the delayed ME/CFS crashes with can last a long time. You may of just wiped yourself out with the ME/CFS for a short time or it may of been a POTS flare giving you dizziness and light headedness on standing in this situation.

Things that make me question whether I have ME

- I've never had swollen lymph nodes in the past 6 months.
- I wouldn't say i've had outright 'muscle pain' - More just lactic acid type muscle fatigue.
- I don't really have too bad light/noise sensitivity even after a really bad relapse.

It means nothing as far as ME goes if you havent had swollen lymph nodes symptom. That isnt a compulsary symptom and it manifests differently. That shouldnt make a person doubt.

Not having muscle pains probably less common in ME/CFS as most have pain. Your lactic muscle pain.. do you think u get that more then a normal person would? (ME pain can feel like like lactic acid pain after exercise). Does your lactic acid pain last for longer then is normal in people?

There is a bit of an exception to this muscle pain thing if one has POTS and ME/CFS. ..sometimes the POTS prevents the ME/CFS person from being able to exercise enough to cause the muscle pain which can come in in a ME/CFS crash. This is often the case for me. I dont get as much pain with my ME to what I would do otherwise as the POTS helps stops me from overdoing things while on my feet. So in a way it can be protective from some of the other ME/CFS coming in.


The light sensitivity in ME/CFS .. the more severe ones ME/CFS, the more likely I personally think the ME person is to have this symptom. This is a symptom Ive heard in all the very severe bedridden one having and which I had when I was more severe but dont tend to get any more (though Im still fairly severe). Ones less affected may not have that symptom or may never experience it.

You shouldnt doubt you may have ME due to lacking a symptom which isnt necessarily for a diagnoses. Its the over all picture which is looked at.. the whole symptom complex and how it presents. From what u said here, the first things I commented on in this post, to me from those things, its looking fairly clear you have ME/CFS with your POTS.

Exercise session crashing you for several weeks is ME, you dont crash from a minor exercise session for weeks due to POTS. You have issues which can not be explained by just POTS.

To see for yourself that its ME/CFS (if all other things have been ruled out). Check out the Canadian diagnostic criteria and see if u can tick off all the areas of the clinical definition http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (page 8 of 28 on my computer) Note, that the pain area of this is starred due to "*There is a small number of patients who have no pain or sleep dysfunction" (that's the group I think which the POTS is protecting from doing too much and hence protecting from more symptoms happening eg the muscle pain in ME)

 

[taniaaust1]

@AdamS If you're still in the early stages, you might be able to cope more. I continued training for a whole year before I had to stop. Went from 7-10 hours of training per week to 8 minutes on good weeks...

Dechi.. that's about how long my ME/CFS took to set right now. I went still able to do exercise and that for a year but then slowly it was getting worst and then suddenly I was completley bedbound by it for 9-12months where I couldnt even walk to the toilet.

I didnt even got post exertional fatigue in the first year of this illness but just had these viral flares every few months which became more and more common and got longer and longer.

Take care Adam if you havent had the illness long as it could get slowly worst, stay the same or you could even recover seeing its early for you. The symptoms you have right now.. may not be what its like for you in a years time.

 

[taniaaust1]

@Hip According to the NASA home test, I had POTS. But thorough testing showed I didn't. I don't think hometests are 100% accurate.

You probably do or did have it.. POTS can come and go in some and may not show up for some on testing all the time. Things like fluid loading or if you had a lot to drink before a POTS test too can cause your test result to not show it up.

I have terrible POTS results on some testing but one test showed up nothing. I'd fluid loaded before I went to that testing appointment to the point I had to go an pee 3 times in one hour. I fluid loaded so could get to the appointment easier.. not thinking about how that may affect the test.

Some places tell someone exactly how much to drink or not drink before testing to avoid this issue with can cause a false negative result

 

[taniaaust1]

What is the "NASA home test" for POTS, can I ask?

The home test I have in mind is the "poor man's tilt table test", aka the active standing test, which is the same as the head-up tilt table test, except that there is no tilt table, and you have to stand up from lying with the power of your own muscles.

This study found that the head-up tilt table test and the active standing test ("poor man's tilt table test") are equally good in diagnosing POTS.

and one study found that poor mans testing was actually better then tilt table test for POTS diagnoses.

 

[taniaaust1]

Thanks @Dechi.

This NASA 10 minute lean test looks very similar to the active standing test ("poor man's tilt table test"), except that in the NASA test you lean against the wall for some support, whereas in the active standing test, I believe you stand up straight without any support.

The NASA 10 Minute Lean Test
View attachment 20660
Source: here​

I think the NASA test is a bit safer as if you start to wobble or fall, you'll basically go wobbing and sliding down the wall instead of possibly falling into something.

 

[taniaaust1]

@AdamS you said you've stopped exercising completely to avoid PEM.

It makes sense. You have to listen to your body. But I've had periods where I've reaped the reward of resting completely, and over time, the deconditioning has contributed to my problems.

I'm in a mild state and I can do *some* activity. The problem is not moving my body per se, but the point at which that movement becomes "exertion." Deconditioning reduces the exertion threshold for me and so the trigger for PEM becomes easier and easier to pull.

I believe some people who are mild may have a window in which they can do a small, consistent amount of exercise on good days and keep their health up. More moderate/severe people don't have that window.

It's a paradox, but it sounds like you may be in a mild state like me, and it is possible that regularly doing the amount of activity/exercise you can do without triggering PEM may be important for putting off a decline.

and even more important to work out if someone can do a little amount of exercise or not, if someone has got POTS as lack of exercise may help cause POTS or worsening POTS. Exercise is used to help treat POTS.