Any One Else Here With Circulatory Disorders???

[Annamaus1977]

Hello!

I still search for people here with circulatory disorders in arms, legs an hands, feet.

When I'm upright, my legs and my arms turn blue or red. My feet and my hands most of the time cold like ice. Also i have blue heels and it turns blue under my feet, but just when I'm upright!!!

After a little while, my arms and my legs so weak. And it feels like tingle, so if its not perfused. Its so difficult to me, to describe it in English.

Oh and speaking makes me dizzy, whats that?!

Maybe there some girls or boys, they have the same problems like me?

I would be happy, if you write me!

with warm regards,

Andrea

[Goschi]

Hi Andrea,

what you describe sounds absolutely typical for dysautonomia/POTS.

The skin on my and legs and arms gets very "patchy" in different colours, the longer I am upright. The tingling and numbness, particularly in feet and lower legs, is again very typical for POTS patients.

I would suggest that as a first step you look for a hospital that offers a Tilt Table Test (Kipptischtest in German). This test can confirm POTS.

As a next step, you can start looking for possible causes, as for example small fiber neuropathy.

However, don't worry too much now! (Easily said, I know...). You will have a proper diagnosis and treatment quite soon!

Best wishes from Vienna to Berlin!!

[Goschi]

If you don't find a hospital offering a "Kipptischtest" (though I guess, the Charité should have it!) ask docs for a "Schellong-Test". Any neurologist or cardiologist should be familiar with doing it properly!!

Best wishes - everything is going to be ok!!

[Annamaus1977]

Hi girls and boys,

Dear Goschi thanks so much... i sent you a message.

Here my results of the "Schellong-Test":

laying

95/62 pulse 66

standing

after 2 minutes

107/75 pulse 91

after 4 minutes

98/80 pulse 96

after 6 minutes

95/70 pulse 109

after 8 minutes

96/77 pulse 103

after 10 minutes

94/75 pulse 106

I dont think its so abnormal...

What do you think about it?

At home i tested my boyfriend and he had almost the same results... when he was laying down his pulse was 80bpm and upright 98bpm till 100bpm. And he has no problems and feels good.

But i feel, i have so many problems. What can it be?!

Hug you all... Andrea.

[Goschi]

Hi again dear Andrea!

Thanks for your personal message - I will answer it tomorrow, at the Moment I am only on my mobile in a doctor's office.

Your Schellong-Test would confirm POTS - a rise in heart rate from 66 to 109, that makes a rise of 43 beats from lying to standing. A rise of at least 30 beats is the diagnostic mark. (By the way, your measurements are almost exactely my figures on a potsy day).

All your other symptoms - getting sick, nauseous, dizzy, etc. from eating, talking, moving around in general would again be absolutely normal with POTS. Lots of members here would confirm that.

However, a Tilt Table Test would be a helpful addition in order to see what's going on in your system.

And finally, you should look for an autonomic Specialist in Berlin (probably a neurologist, some cardiologists do have a good knowledge of the condition too).

You will probably need some patience, I guess - at first for finding a Specialist and second for trying out which kind of treatment will help you.

However, POTS is treatable, and you will eventually improve!! Don't worry!

I send you much energy and confidence!!

[TCP]

Yes cold extremities for me when the temperature drops and my hands and feet burn most of the time as do my arms and legs. My extremities flush up purple-red and the blood pooling can get very painful with the neuropathic pain. In extremely cold weather my toes go black-purple. I rub them to get the circulation back or use the neurostim.

If I stand for very long the pain and discomfort gets worse and the blood pooling and neuropathy increases.

The longer I stand I get all feeling of passing out and sometimes do. I have been diagnosed with POTS, Neurocardiogenic Syncope and EDS. I also have ME.

I had the Tilt Table Test and I am still waiting to see the cardiologist so I can try Ivabradine which lowers heart rate. I have sinus tachycardia and have had it for years. My heart rate gets faster the longer I am upright. My BP can get very low and then other times too high.

[Annamaus1977]

Hi Goschi and TCP,

Is'nt nice to read, that you have also bad times with Pots. I wish you all the best, i hope it's getting better for you soon!!! ♡♥♡

It's hard to think positive for me. Since i had breast cancer, i have so much panic in me with all these bad feelings and i have to be afraid disappointed, if the docs not found a reason why. I dont trust them and at the monent i dont trust in a diagnosis names "Pots"...

I hope it is Pots, why Pots doesn't kill me... please forgive me, but for me its better than cancer or metastases or something else that can be dangerous to me... i hope you understand me.

Give you a hug.

With warm regards,

Andrea.

[artluvr09]

I have raynauds phenomenon, and chilblains. My feet and toes get so purple! When its cold my fingers turn white then purple then red! When my toes are hot they turn red and get itchy bumps which is the chilblains. Also we have no idea why but my ears and nose get really hot and red sometimes. Doesn't hurt just gets hot and makes me lightheaded.

[Annamaus1977]

Hi artluvr09,

it happens mor often, that people who have Pots, also have another autoimmune desease like raynauds or sjoegren.

But i dont have raynauds or something else, it is just a circulatory disorder and my arms and legs turn red when Im standing or when I walk. And they get verry cold, also when i eat my arms and legs get verry cold?!

Hug you,

Andrea.