Update - It's not myocarditis!

[katidid]

That's the good news I guess LOL.

Unfortunately, when they dug into it a little more and performed more tests, turns out I have POTS. Whether or not it's secondary to Lupus or Lupus underlies it, they have no clue. All we know is that I hit all but 2 symptoms across the entire syndrome, failed the tilt test and badly failed the stress test (they so kindly asked me to speed walk then jog up an incline...I started to black out half way through so it was a hard fail hahaha).

I knew a little about POTS b/c a good friend of mine who has ME and early stages of Rheumatoid was diagnosed with POTS because she would get really dizzy when standing still for longer than a minute or so.

But, until I read more about it, I had no clue that it goes way beyond issues with your heart and effects so many parts of the body and is strongly correlated with chronic pain and, specifically, post-exertion intolerance … which has become hell for me. Sorry to swear, but there is no other way to describe it.

So then I did something dumb and compared symptoms that my doctor has ascribed to my Lupus and PsA with POTS. I was shocked at the overlap. Shocked to the point of confusion. Heart, skin, stomach, joints, fatigue, mental fog, swelling, temp intolerance, noise/sound sensitivity, bad responses to any stress …. Sound familiar?

I saw a cardiologist and a neurologist. Even tho POTS is usually caught by a cardio, it’s actually a neurological disorder called Dysautonomia. Basically, your autonomic nervous system is all types of messed up. Very medical sounding … LOL

When I brought the test results to my Rheumy, guess what he said: “I’m not surprised.”

What I have learned is that like Lupus, POTS has serious consequences regarding heart and brain health. With Lupus, we already have an increased risk of cardiac events. With POTS, that goes up as well. So I was VERY surprised at his nonchalant reaction. No real treatment plan, no real help from anyone. Just a this-really-sucks-for-you reaction.

I’m trying to find a specialist but at this point I’ve got so many things, I’m just petrified of the process of gathering all my records from all my doctors who rarely, if ever, talk to each other.

Does anyone else have a diagnosis of POTS or suspect they may have it? Anyone done a cardiac stress test? How did it go for you?

(I should add that those 6 minutes on the treadmill caused a flare so bad that I was holed up in agony for about 2 weeks. I hate, hate, hate going to the hospital as my last stay was just icky, but I really thought my body was giving out on me. I haven’t retuned to baseline since. It set off some kind of pain response where any true exertion causes massive pain not only in my joints and muscles, but I can feel it burning through my major nerve pathways from head to toe. Ugh…)

Any advice would be greatly appreciated. At this point, I’m willing to travel anywhere to get this all sorted out.

Love to all of you and thanks in advance for your help!

[KayHimm]

Hi Katidid -

I have wondered how you have been. Glad you don’t have myocarditis but sorry about the new POTS diagnosis. I have dysautonomia, and would be happy to help in any way. I have the mixed cardio-inhibitory (something like that) response. My blood pressure and heart don’t don’t go up. Your blood pressure won’t go up but heart rate speeds up, right?

Feel free to message me. I have lots of tips from fans to socks.

I live in NYC but do not go to the dysautonomia center. You might want to try to be seen there. It is at NYU.

Xk

[Caramia1964]

Hi I have lupus and sjogrens , but more recently and at points in the past , I have spells of unprecipitated rapid pulse , like palpitations, I feel shaky and go ghostly white , and desperately feel like I need to lie down. I also get vague chest pains too , especially after I eat a meal. It is unnerving! I saw GP last week and he thought it sounded like a vaso vagal attack, however I too am concerned it may be pots. I had a chest x ray last week and my BP was found to be high so am due to get an ambulatory blood pressure monitor on for a day on 26th nov. I am also getting an ECG and bloods done tomorrow , so maybe something will flag up! Like everything else auti immune it takes ages to get a definitive diagnosis if it is actually POTS. I will discuss with rheumatologist next time I see her .

[KayHimm in reply to Caramia1964]

Hi Caramia -

Your GP may have been just using vasovagal loosely. It is related to POTS in that the problem is with the autonomic system. Usually a tilt table test is necessary to differentiate between the syndromes. The heart rate goes up in POTS, but blood pressure goes down. In contrast, I don’t keep my blood pressure or heart rate up while standing. That is called mixed syndrome.

Good idea to tell your rheumatologist, though you will likely be sent to a cardiologist or neurologist for diagnosis.

Your symptoms sound pretty disabling. Hope they get to the bottom of it.

Happy to any any questions about testing. I have had the tilt table test.

K

[Caramia1964 in reply to KayHimm]

thank you for your response , I suppose I will have to see what the tests show up , though doubt it will show anything ! x

[KayHimm in reply to Caramia1964]

I don’t agree. I think with your symptoms they will pursue until they get answers.

With those of us with autoimmune disease they are trained to rule out everything. Your GP was clearly concerned.

K

[Caramia1964 in reply to KayHimm]

Hi just an update , my blood tests revealed I was deficient in vit B9 , so have folic acid for a month , then get retested. I also was found to have sugar in my blood so had to have a fasting blood test done. Now I have had a letter to see the practice nurse about my test results next week so will see what she says !