How to distinguish between Dysautonomia and ME/CFS?

Hello,

I'm interested in learning more about how one can distinguish between POTS (or another variant of dysautonomia) and ME/CFS, and how a doctor could determine whether a patient had one vs. the other condition.

The symptoms required to diagnose ME/CFS (using Canadian Consensus as an example) are almost entirely overlapping symptoms that could be attributed to POTS as far as I can tell. (And that's not accounting for POTS fulfilling the 'Autonomic Manifestations' criteria in CCC).

The only difference I see is that in ME/CFS, the cardinal symptom is referred to as "PEM" whereas I hear "exertion intolerance" more frequently when reading about POTS. It is hard for me to distinguish even between these two symptoms, as I have heard "exertion intolerance" used to refer to the delayed symptoms that appear after exercise in POTS literature.

Some people may have POTS only, and some people may have ME/CFS AND POTS, but how might one be diagnosed as having POTS but not ME/CFS?

 

POTS can be diagnosed with a tilt table test.

ME/CFS is associated with an inability to repeat the results on 2-day cardiopulmonary exercise testing. We don't know if this is unique to ME/CFS.

In my opinion you don't need a 2-day CPET to recognize PEM. It would just cost money and be unpleasant.

It seems reasonable to diagnose POTS and ME/CFS separately because you'll probably benefit from the advice being given for both. Whether they actually are distinct conditions is not entirely clear but it doesn't seem unreasonable to treat them as such for the time being.

 

I think we need to distinguish POTS from POT, and also from 'dysautonomia'.

POT is a particular clinical finding of increased heart rate on being upright. It isn't necessarily abnormal because some healthy people show that. It can be demonstrated with a tilt table.

POTS is a syndrome of symptoms, including feeling unwell on standing that is said to occur in people with POT. It is not clear to me whether this syndrome is actually different from ME/CFS. It seems to include brain fog and exertion intolerance.

So I am not sure that trying to distinguish POTS from ME/CFS means much other than that one of the features has to be POT.

Dysautonomia is a potential explanation for POT. It is not a syndrome or condition in that sense but a cause. It does not seem to explain other features of either POTS or ME/CFS much.

 

Tricky but interesting question we probably can't answer yet.

I suspect that PEM could well be the distinguishing feature here. Trouble is it's another one of those ill-defined concepts that it's hard to know what anybody is talking about. And "PEM" and "exertion/exercise intolerance" are often used interchangeably. But I'm not convinced they are the same thing.

I have both ME and POTS myself and I've discussed the whole exertion intolerance thing with a few "pure" POTS patients. Based on those discussions we concluded that all of us had exertion intolerance in the sense that any sort of activity is much harder to do than it should be and it takes longer to recover than for a healthy person. But I was the only one with the additional, delayed increase in all sorts of unrelated symptoms from sore throat to insomnia that is typical of PEM. So it was that last bit that distinguished me with ME from the POTSies without ME (caveat: very small numbers in my discussion group).

Adding to the confusion, if the two are indeed separate conditions, is that there's undoubtedly a large amount of misdiagnosis going on, given how similarly they can present.

 

I had ME for seven years before the POTS symptoms developed, and it felt very different and striking. Suddenly I couldn’t raise my arms above my head without extreme dizziness to pin things on the notice boards at my part time work. Stairs became impossible and my brain really felt like it didn’t have enough blood to it.

Whether I had these issues on a milder, more intermittent level before this point, I don’t know. It certainly felt all very new but I can see how some of the previous symptoms could be thought to be connected.

Interestingly the obvious immune flares like lymph node pain etc has lessened over time and the POTS has become my most immediate issue. Not that I would be well if that was removed, but it would transform my ability to do certain things. It’s a very hard wall to hit as soon as I try to do anything!

Until we test people more thoroughly on diagnosis, and at milder phases, we just won’t know to what extent such things are present.

 

i'm not sure whether you mean distinguising the two illness, or whether you mean attributing certain symptoms to one illness or the other.

If it's the former, I am always minded to think about the immune manifestations (sore throat, swollen glands, etc.). These are not a feature of PoTS. But as you say, if these features diminish then things become harder to separate.

 

You're right, they are not the same. I am able to exercise, but I don't because I know the consequences. I manage my energy through out the day so that I can exercise moderately within my energy envelop. I'm been ill for 28 and I am not deconditioned either.

 

I recently listened to David Systrom's talk from the NIH conference and was interested in his finding that a group of patients with unexplained dyspnea/exertion intolerance had what he called "preload failure" or impaired cardiac output. Many ended up with a diagnosis of ME/CFS after the study.

In a different webinar for Dysautonomia International focusing on POTS, he showed data from the same study and explained that many of the patients in the cohort ended up with POTS.

Whether this finding is common to both diagnoses, or whether he is looking at a group of people with the same illness seems unclear (the patients were recruited because they had unexplained exertion intolerance, not because they already had a diagnosis).

In any case, does/should the label shape treatment or further testing in any way?

 

It is confusing but presumably if they are the same people they must have the same illness!

My thought is that postural orthostatic tachycardia is a useful term but not POTS. POTS just seems to mean people with postural orthostatic tachycardia with features of ME. There is no 'separate disease'.

 

Merely as a matter of detail I wondered whether either of the postural or the orthostatic were otiose, being synonymous, or whether there was some postural tachycardia which was not orthostatic. It seems that the two are alternatives and that the term was PoTS- Postural Tachycardia Syndrome. Sorry. I can't help myself.

 

Yes but orthostatic is more precise than postural so really it should be OrTS

 

@adambeyoncelowe @Keela Too @saranbonser Let's hope that NICE recognise how disabling this symptom is.

 

I like the description by Lily Chu

"I wish to re-emphasize that post-exertional fatigue is not equivalent to post-exertional malaise. As described in the NAM report, PEM is not only increased fatigue following activity but also involves exacerbation of other symptoms, like muscle/joint pain, problems sleeping, headaches, cognitive dysfunction, sore throats, tender lymph nodes, and flu-like feelings. Furthermore, PEM can be delayed by hours to days relative to the triggering event and last hours, days, and even longer."

It sums things up better than I can.


More and more CFS is being used to describe the symptom of fatigue and fibromyalgia the symptom of pain. It has made me wonder if we are guilty of doing the same thing with the same adverse consequences.

We experience symptoms that are similar to POTS and IBS and interstitial cystitis but we may not have the same disease process behind it. For instance I have started getting white numb patches on my toes which I have been told are caused by Raynaud's but I have family members with Raynaud's and know it is caused by the blood vessels snapping closed and I do not think that is what is happening to me. Rather it could be down to a vasculitis caused by RBC deformabiity problems or blood vessel stiffening; whatever it is causing my other ME symptoms really.

It is important in POTS because the treatment being touted most now is exercise to improve muscle tone but I think what is causing my problems is just whatever is causing my ME now affecting that part of my body.

I suppose what I mean is that they may find a cause and a treatment for these diseases but it does not mean it would help us.

 

All very good points Mithriel.

 

I have both and they are different to me ( I had a bout of POTs when I was 15 to 20y without ME) so I can tell them apart.
The main difference is dysautonomia will have the inability to be upright.
ME/CFs exertion makes you feel sick.
With POT you can have excercise intolerance but hits right away ( by being upright). The symptoms are more postural related. You will find better if you lay flat, if not right away, soon.

With ME the malaise can set later on or immediate, postural changes will not help the other symptoms ( if you also have OI, those symptoms will reside).

I hope this help. I have crashes of both and they are totally different.

 

I have ME, but not OI. I do have tachycardia that fits the "30 bpm increase within 10 minutes", but upon moving limbs. I described it here https://s4me.info/threads/anyone-with-dysautonomia-but-no-oi.9653/#post-171129.
I think it is dysautonomia, but I can be upright. My HR is normal as long as I sit or stand still. So it's not orthostatic.