How do you tell CFS/POTS symptoms from anxiety/depression symptoms

[purrsian]

I'm currently in a difficult stage of my illness - I was improving very slowly over the past couple of years (sick since 2006) and starting to feel I was not 'sick', just very deconditioned, so I was very slowly trying to increase my stamina without overdoing it. However so far this year, I've just kept going down and down. I believe I have POTS as my heart rate is approx 70-75 lying down, 90 sitting and 110-125 standing. I'm pretty sure the majority of my current symptoms revolve around circulation issues. I'm getting a tilt table test next week, but my doctor is also wanting to investigate anxiety/depression as a potential cause of some of my issues.

I'm not totally excited about this idea, as I am pretty aware of what both are like from how I felt when I was younger and this is different. I feel physically bad THEN I feel anxious or a bit down about my circumstances (wouldn't call it actually depression). I've also read that POTS tends to cause biological changes that increase anxiety too.

One of the major things I'm struggling with (and always have with CFS) is how to tell what's a symptom of CFS or POTS and what's feeling physically bad due to feeling emotionally bad. When does one rest and recuperate, and when does one push through to do activity that makes you feel good? I'm really trying to work on clarifying this a bit more so I can explain to my doctor why I feel this is not caused by emotional/mental issues and that the issues present are caused by my symptoms instead.

It can be such a fine line between the two, so I would love to hear if anyone has any ideas, methods or feelings about how to tell the difference.

 

[halcyon]

It can be such a fine line between the two, so I would love to hear if anyone has any ideas, methods or feelings about how to tell the difference.

You'd have to have pretty severe constant 24/7 panic attack level anxiety to mimic POTS I would think. I've experienced both social and generalized anxiety disorder and it never felt anywhere close to what POTS (or ME) feels like. Lightheadedness/dizziness, chest tightness and shortness of breath, massive palpitations, acrocyanosis, inability to stand up. The tilt table test should be able to objectively show POTS.

 

[Valentijn]

I feel physically bad THEN I feel anxious or a bit down about my circumstances (wouldn't call it actually depression).

I think you answered your own question pretty well here. If your heart rate is rising when you aren't feeling anxious, then it isn't due to anxiety. And I'm pretty sure that "orthostatic anxiety" isn't a thing, so if your symptoms are consistently triggered by standing up and reduced by lying down, that's rather conclusive proof that it isn't happening due to anxiety.

Anxiety and depression are mood disorders. If you don't have the anxious or depressed mood, then you don't have anxiety or depression. Psychobabblers merely redefine anxiety and depression to not require the actual anxiety or depression because they assume people are lying when they say they are not anxious or depressed. It's sloppy, and it's ultimately bullshit.

 

[IreneF]

When you're depressed, you don't want to do anything. When you have CFS, you want to do things but you are too tired to do them, or you do them and you crash the next day.

 

[purrsian]

Thanks for the replies everyone, all so helpful

I think when I last saw the doctor, I was speaking to her mainly about my fatigue and dizziness and less so the POTS. While my heart rate was changing heaps when standing, I wasn't getting as clearly defined symptoms between lying down/sitting/standing as I am now. It's become worse since then so easier to define what symptoms are postural. I get dizziness kind of feeling in my head most of the time though, even when lying down. Not vertigo, not loss of balance, just this uneasy kind of feeling, my head feels full (CT scan said sinuses are perfect).

I also had slightly high cortisol levels, which I think made her think of anxiety, but I've read that it's not uncommon in people with POTS as your body is basically under stress every time you stand up. Is that correct?

 

[purrsian]

When you're depressed, you don't want to do anything. When you have CFS, you want to do things but you are too tired to do them, or you do them and you crash the next day.

Great point, this is something I will probably mention to the doc. I actually get annoyed that I can't do stuff - I've just started studying acupuncture and I love it, so I want to study all the time. But when I'm tired, I keep trying and then realising I have no idea what I just read. If I start to get down about things, it's because I can't do the things I want rather than not wanting to do them at all.

 

[Kati]

A tilt test table will not lie. They will make you lay down for 5-10 minutes before starting tilting you soey have a good baseline heart rate. POTS is fairly common with our patient population and curiously enough, denial is twice as prevalent in dr cohort who don't have a clue about ME.

Let us know how the test goes.

 

[purrsian]

POTS is fairly common with our patient population and curiously enough, denial is twice as prevalent in dr cohort who don't have a clue about ME.

The doctor I saw before my current one hadn't even HEARD of POTS, so I'm sitting there feeling like I must be one of those annoying patients who diagnoses themselves with all these obscure diseases. Then I was like, hang on, this is not obscure at all! She was a young doctor, so it shows they aren't even teaching them about it.

 

[Kati]

The doctor I saw before my current one hadn't even HEARD of POTS, so I'm sitting there feeling like I must be one of those annoying patients who diagnoses themselves with all these obscure diseases. Then I was like, hang on, this is not obscure at all! She was a young doctor, so it shows they aren't even teaching them about it.

Depending where you live, doctors are starting to be more informed about POTS but do make sure you ssay what you means by POTS because the acronym is used for another medical condition which is not related!

It is absolutely annoying that drs don't know about your disease and co-morbidities. In that matter I would rather have HIV or cancer because the path and protocols would be all written black on white.

POTS is not that uncommon, and I suspect it is under-diagnosed and under treated. I had an autonomic dr who worked in spinal cord injuries telling me that it happen across many diseases from diabetes to spinal cord injuries to ME. This doctor was the only one of his kind in the province and only allowed 3 or 4 new patients a month.

 

[purrsian]

Depending where you live, doctors are starting to be more informed about POTS but do make sure you ssay what you means by POTS because the acronym is used for another medical condition which is not related!

It's so annoying to goggle because you have to type out the WHOLE thing, otherwise you get cookware results lol
I wish there were more autonomic doctors - I suspect much of what is wrong with me is autonomic related (probably the case for most/all ME sufferers) but doctors love to just look at individual symptoms rather than the overarching problem. On the upside, my symptoms are now much more pronounced than when I first posted, so it's harder to write off as 'emotional causes' and it will be easier to explain and perhaps even mention the autonomic connection.

 

[Kati]

It's so annoying to goggle because you have to type out the WHOLE thing, otherwise you get cookware results lol
I wish there were more autonomic doctors - I suspect much of what is wrong with me is autonomic related (probably the case for most/all ME sufferers) but doctors love to just look at individual symptoms rather than the overarching problem. On the upside, my symptoms are now much more pronounced than when I first posted, so it's harder to write off as 'emotional causes' and it will be easier to explain and perhaps even mention the autonomic connection.

Some cardiologists specialize in POTS also. I am not sure where you are located.

 

[PennyIA]

I've spend many years arguing the point of antidepressants aren't going to help me.

Sometimes I cave and take them. They NEVER CHANGE ANYTHING, and sometimes I have severe reactions to them.

I repeat to the doctors OVER and OVER again.

I may be a little upset or a little sad that I can't do what I want to do... but I'm not depressed. I just want to be able to do everything a normal person my age is capable of doing without it causing severe physical distress. When I went through depression as a teenager I never cared what I could or could not do nor what anyone else was caring about.​

It is perfectly normal for an unhealthy person to feel sad that they aren't healthy. You wouldn't assume antidepressants will cure cancer why do you think it'll help me?
​

After my rant, they usually back down a bit. Not always... but well, duh. Feeling ill, not getting help, no hope for getting treatment, and you wonder why I might feel a bit sad or blue? Totally different than just suffering from depression.

 

[purrsian]

Some cardiologists specialize in POTS also. I am not sure where you are located.

I'm in Brisbane Australia. Off to the cardiologist for the tilt table test on Thursday - pretty sure they are the only location in my state that looks after POTS so hopefully they are ok!

I may be a little upset or a little sad that I can't do what I want to do... but I'm not depressed. I just want to be able to do everything a normal person my age is capable of doing without it causing severe physical distress. When I went through depression as a teenager I never cared what I could or could not do nor what anyone else was caring about. It is perfectly normal for an unhealthy person to feel sad that they aren't healthy. You wouldn't assume antidepressants will cure cancer why do you think it'll help me?
​

​

This is exactly how I feel, only just beginning to really understand that my 'down' emotional times are completely normal given my circumstances. I've had doctors always telling me I'm depressed so I've just always thought that, but over recent months and after reading everyone's replies here, I'm finally understanding that it's a different kind of down. I think the key things to tell the doctor are it's not constant, I don't have lack of motivation or care and that I'm just frustrated at circumstances.

 

[purrsian]

Had my test yesterday and I officially have POTS my heart rate went up to 110 while standing, eventually up to 120. They put a spray under my tongue and it brings symptoms on more, my heart rate went up to 130 and I just about fainted. I'm glad as it confirms what I thought. I already drink plenty of water, but gonna look into getting tighter compression stockings and talk to doc about meds.

I could see the heart rate display which was great as I could feel the difference in symptoms and relate it directly to heart rate increase. I think we all get so used to these feelings that it's ignore them until it gets really bad. Now I can understand the mild symptoms that will preempt the bad, so hopefully won't leave it till I feel terrible until I do something lol

 

[Kati]

Congratulations @purrsian it's clearly not in your head!

 

[Sushi]

I'm glad as it confirms what I thought. I already drink plenty of water, but gonna look into getting tighter compression stockings and talk to doc about meds.

Congrats on your diagnosis! Putting electrolytes in your water is very important too. My autonomic specialist recommended drinking 750 mls of electrolyte water before ever getting out of bed in the a.m. As far as meds, have you read up on the ones usually prescribed? It helps when talking to your doc.

 

[purrsian]

Thanks guys

Congrats on your diagnosis! Putting electrolytes in your water is very important too. My autonomic specialist recommended drinking 750 mls of electrolyte water before ever getting out of bed in the a.m. As far as meds, have you read up on the ones usually prescribed? It helps when talking to your doc.

Where do you get electrolytes to put in water? Just the chemist? I've only ever heard of electrolyte drinks being sports drinks, which are actually surprisingly sugary. Good tip about reading up on meds, I've read a little but not heaps. Lots of research to do, good thing I like biology and medicine lol

 

[Sushi]

Where do you get electrolytes to put in water?

Here is the one I use but what is available would vary from country to country.

 

[purrsian]

Here is the one I use but what is available would vary from country to country.

Sweet thanks I've found one of our chemists has one brand, but it all seems to have tons of sugar. I think the website you linked ships internationally, so I might grab some of that one, thanks for you assistance

 

[Sushi]

I've found one of our chemists has one brand, but it all seems to have tons of sugar. I think the website you linked ships internationally,

There are some without sugar and I definitely don't want it and that is why I chose this one. And yes, Iherb ships internationally. Occasionally they offer free international shipping.