Looking for help with some new symptoms

Rachel Riggs

Rachel Riggs
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I have had blue lips + white face intermittently for 3 weeks now, and it is freaking me out. I have posted in MCAD, Reynauds and ME/CFS groups on Facebook, and I have seen my POTS doc who sees tons of weirdos like me and yet nobody has any idea what's wrong.

It happened the first time after an exceptionally good day, followed by a monumental crash the next day. That next day I noticed blue lips and later noticed my face was as white as a corpse. It has been happening intermittently now for the last 3 weeks and I cannot pin down a particular pattern or attribute it to anything specific.

The last three nights I have been queasy after dinner - that is highly unusual for me. I woke up this morning to a super puffy face, a few minutes later I noticed it was going white, and then when my color returned, I was left with dark bags under my eyes, also very unusual.

My POTS doc did an echocardiogram which looked fine. He said he has no idea what is wrong and that is very disconcerting.
 
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Research 1st

Severe ME, POTS & MCAS.
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Hi. That doesn't sound very good Rachel.

Is your skin more dimpled or lax than usual, like it's floppy and wrinkly but like you've got out the bath almost?
If you press your fingernails firmly then let go, do they 're-fill' correctly? Doctors know how to do this.
When you stand up and remain standing, are your fingernail beds turning more of a purple, or darker colour?
Have you measured your core temperature multiple times a day?
Have you developed a new set of symptoms such as worse S.O.B at rest. or unusual stomach pain?
Are you passing blood in ways not polite to discuss online but you can probably guess - double check.
Have you been to a doctor in ER and they've tested your oxygen sats and they've run a full blood panel?
Have they ruled out sickle cell anaemia, or any other form of blood disorder?
Are you taking and medication, including off-label medication/herbs/supplements for POTS/CFS that could affect you?

If you're more symptomatic with shortness of breath dizziness out of the ordinary I'd ask them to consider a blood gasses test although having had one, I wouldn't advise it unless they advise it if the blue lips/palour persists and you feel a lot worse. I wouldn't freak out if you're otherwise OK, just don't ignore it long term and seek multiple doctors opinions if you can.

I hope it passes and you'll feel better soon.
 

Rachel Riggs

Rachel Riggs
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Hi. That doesn't sound very good Rachel.

Is your skin more dimpled or lax than usual, like it's floppy and wrinkly but like you've got out the bath almost?
If you press your fingernails firmly then let go, do they 're-fill' correctly? Doctors know how to do this.
When you stand up and remain standing, are your fingernail beds turning more of a purple, or darker colour?
Have you measured your core temperature multiple times a day?
Have you developed a new set of symptoms such as worse S.O.B at rest. or unusual stomach pain?
Are you passing blood in ways not polite to discuss online but you can probably guess - double check.
Have you been to a doctor in ER and they've tested your oxygen sats and they've run a full blood panel?
Have they ruled out sickle cell anaemia, or any other form of blood disorder?
Are you taking and medication, including off-label medication/herbs/supplements for POTS/CFS that could affect you?

If you're more symptomatic with shortness of breath dizziness out of the ordinary I'd ask them to consider a blood gasses test although having had one, I wouldn't advise it unless they advise it if the blue lips/palour persists and you feel a lot worse. I wouldn't freak out if you're otherwise OK, just don't ignore it long term and seek multiple doctors opinions if you can.

I hope it passes and you'll feel better soon.
Thank you so much for all your thoughts here. I am not dizzy, just a bit off, slightly weak maybe. No weird dimpling, no blood, I think my fingernails are fine though I don't study their color, might not notice, I am not short of breath, I bought a pulse OX and seems fine, tiny bit low at times (94) and no new meds, they tested my blood for anemia, I take very limited meds - only a few supplements, synthroid and LDN. I do notice that when doing dishes or showering I do go wrinkly fairly quickly, but not wrinkly otherwise. I am having wicked hot flashes suddenly at night, but am close to menopause.

What do you think is happening?

PS. on second thought, my fingernails may be darker... not sure. And my skin did seem slightly lax but I was doing intermittent fasting until a few days ago, and lost some weight and attributed it to that.
 
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I remember this happening to my kid and doctor was very concerned (something to do with possible lack of oxygen to heart) or something like that., They sell oximeters (I think is called that messures oxygen on your finger) at pharmacy quit cheap, might want to monitor your oxygen levels. (I am no doctor is what I would do for myself).
 

Rachel Riggs

Rachel Riggs
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Thank you, yes I do have a puls
I remember this happening to my kid and doctor was very concerned (something to do with possible lack of oxygen to heart) or something like that., They sell oximeters (I think is called that messures oxygen on your finger) at pharmacy quit cheap, might want to monitor your oxygen levels. (I am no doctor is what I would do for myself).
Thank you, yes, I did get a pulse OX but it is showing 95-99 which should be fine.
 

Shoshana

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I am sorry you are having those worrying symptoms, @Rachel Riggs

I was glad when I got to the part in your post, that says you had an echocardiogram.
Even though I understand it isn't totally reassuring, since it didn't explain the problem, but still, by having the echo, you eliminated some of the possible problems that would have been very important to identify, so it was worth while having it.

I wonder if you should see a regular cardiologist, or ask that one to order more tests, possibly include one for clotting factors... I am just wildly guessing, I have no medical knowledge or experience with this symptom. But I would want more testing and investigation, for myself, in your situation.

Is it of a short duration, when it occurs?
Keep us posted, on how you are doing.
Also, it is always a good idea to remember to do the basics, such as drink plenty of water, get your important nutrients...etc. Just in case one of them helps your body to stabilize whatever is off.
 

Gingergrrl

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Rachel, my first thoughts were that this is either some kind of blood circulation problem or angiodema. Do you have both POTS and MCAS? Are your lips and face swollen (like angiodema) or is it purely a change in color? Do you also get easy bruising (or random bruises that simply appear)? I am trying to compare it to different things that I experienced when I was very ill. I can't remember, do you have other autoimmune diseases (or autoantibodies)?
 

Rachel Riggs

Rachel Riggs
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Rachel, my first thoughts were that this is either some kind of blood circulation problem or angiodema. Do you have both POTS and MCAS? Are your lips and face swollen (like angiodema) or is it purely a change in color? Do you also get easy bruising (or random bruises that simply appear)? I am trying to compare it to different things that I experienced when I was very ill. I can't remember, do you have other autoimmune diseases (or autoantibodies)?
I do have both! I never considered my POTS to be significant because my BP is usually 100/80 - 95/75 -- not horribly low. My face is always a bit puffy. Always. My lips are not swollen though. It is mostly a change in color, I may feel a little weak but nothing alarming. I tend to bruise easily but nothing way out of the normal range. I have a Dx of MCAD, POTS, ME/CFS and some positive Sjogrens markers which fluctuate. I am housebound mostly but am able to do light cooking and laundry. I was doing intermittent fasting (16-17 hours overnight) but stopped that a few days ago when weight started to fall off too quickly. I do have weight to lose, but I saw that as a sign of low blood sugar and decided it was not smart in my case. I had hoped all would be well after that, yet it persists. Thank you so much for your insights!!
 

CFS_for_19_years

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I do have both! I never considered my POTS to be significant because my BP is usually 100/80 - 95/75 -- not horribly low.
Your pulse pressure is low. Pulse pressure is systolic blood pressure minus diastolic blood pressure. Your pulse pressure is considered low when it's less than 40 mm Hg and yours is 20mm Hg. It looks like you had the proper follow up with an echocardiogram.

Take a look at the doctor's reply ( Dr. Tamer Fouad, not John the CNA) to a patient with low pulse pressure.
a low pulse pressure (definitions in the literature vary from 40 to 45mmHg) is only relevant in the setting of acute decompensated heart failure and possibly also in congestive heart failure. But, let me stress: in these two settings the low pulse pressure is important not from a diagnostic point of view but only from a prognostic angle. We NEVER diagnose these conditions by using low pulse pressure. This is because low pulse pressure is neither specific nor sensitive as a diagnostic test for these conditions. However, the finding of low pulse pressure in a patient with acute decompensated heart failure is related to the patient's expected survival as suggested by some studies.
Is your POTS doctor a cardiologist? Maybe you could get a second opinion. You don't sound like you have heart failure - you would be short of breath with that.

Here's a thread that might help you:
https://forums.phoenixrising.me/index.php?threads/scary-low-pulse-pressure.25619/

@Sushi benefited from a pacemaker given to her for SA node dysfunction. She thought she had POTS before the proper diagnosis:
https://forums.phoenixrising.me/ind...it-was-sa-node-dysfunction.61293/#post-996495

I'm not knowledgeable regarding cardiac stuff so I can't say much more.
 

Sushi

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That next day I noticed blue lips and later noticed my face was as white as a corpse. It has been happening intermittently now for the last 3 weeks and I cannot pin down a particular pattern or attribute it to anything specific.
Is your POTS doctor a cardiologist? Maybe you could get a second opinion. You don't sound like you have heart failure - you would be short of breath with that.
@Sushi benefited from a pacemaker given to her for SA node dysfunction. She thought she had POTS before the proper diagnosis:
Have you monitored your pulse with a heart rate monitor? And did your cardiologist do an EKG? My clues came from pulse monitoring, treadmill stress tests, EKGs and my Electrophysiologist's diagnostic skills. My circulation has improved hugely with a pacemaker as the low-limit on my pulse is now 30 BPM higher. Everyone comments that I have much better color and my stamina has increased a lot too. I had very low pulse pressure on my tilt table test. We're just brainstorming with you but if you haven't been thoroughly checked by a cardiologist, that might reveal something.
 

Gingergrrl

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I do have both! I never considered my POTS to be significant because my BP is usually 100/80 - 95/75 -- not horribly low.
@CFS_for_19_years beat me to it but my first thought reading that was that your pulse pressure is very low. Mine was always low prior to my treatments (often 16-20) and I somehow compensated for it (b/c I have never fainted) but I had severe POTS and my whole autonomic system was completely out of whack. My pulse pressure still runs on the lower side but is now usually around 28 or low 30's.

Is your POTS doctor a cardiologist? Maybe you could get a second opinion. You don't sound like you have heart failure - you would be short of breath with that.
I would see a cardio who is knowledgeable about POTS or an electrophysiologist like Sushi's. I know both are very hard to find.

Actually, I just noticed in your avatar that you are in SD and I saw a POTS cardio in SD at Scripps, Thomas Ahern, for a one-time consult in 2015. I did not stick with him b/c he was 3.5 hours south of me, which was not realistic travel-wise for me, but might be worth seeing for you.

He was the ONLY cardio that I saw (and I saw three prior to him in 2013 to 2015) who picked up on the severe muscle weakness and breathing weakness that I was experiencing and the only one who suggested that I see a neuromuscular specialist.
 

Rachel Riggs

Rachel Riggs
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@CFS_for_19_years beat me to it but my first thought reading that was that your pulse pressure is very low. Mine was always low prior to my treatments (often 16-20) and I somehow compensated for it (b/c I have never fainted) but I had severe POTS and my whole autonomic system was completely out of whack. My pulse pressure still runs on the lower side but is now usually around 28 or low 30's.



I would see a cardio who is knowledgeable about POTS or an electrophysiologist like Sushi's. I know both are very hard to find.

Actually, I just noticed in your avatar that you are in SD and I saw a POTS cardio in SD at Scripps, Thomas Ahern, for a one-time consult in 2015. I did not stick with him b/c he was 3.5 hours south of me, which was not realistic travel-wise for me, but might be worth seeing for you.

He was the ONLY cardio that I saw (and I saw three prior to him in 2013 to 2015) who picked up on the severe muscle weakness and breathing weakness that I was experiencing and the only one who suggested that I see a neuromuscular specialist.
I see Ahern and he simply says he has no idea, perhaps something similar to Reynauds - that is not good enough. Something is wrong here!

You say yours was low before treatments -- how did you treat this?

Thank you!
 

Gingergrrl

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I see Ahern and he simply says he has no idea, perhaps something similar to Reynauds - that is not good enough. Something is wrong here!
I should clarify that I only saw Dr. Ahern once for a consult in 2015 and he never provided me any treatment. I had no idea he was your doctor and mentioned him b/c he is the only POTS cardio I know in SD! I think he stands out in my mind b/c so many local doctors examined me but he was the only one who felt I had a neuromuscular disease (in addition to POTS and MCAS) and he was ultimately correct.

I never had the exact symptoms you were describing with your lips turning blue and I agree that something is wrong and I am hoping that he or another doctor is able to get to the bottom of it. I did have several of the other issues that you described including very low pulse pressure.

You say yours was low before treatments -- how did you treat this?
I never treated the low pulse pressure per se vs. that when we finally figured out that the core issue for me was autoimmune/neuromuscular, the treatments ultimately improved everything including my severe POTS and autonomic dysfunction. In my case it was high dose IVIG and Rituximab but I have no idea if either of these would be the right course of action for you (and none of my treatments had anything to do w/Dr. Ahern who was just a one-time consult).
 

voner

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Rachel,

I second @Sushi's suggestion of a heart rate monitor. The other possibility that comes to mind is your puffy face maybe indicating some sort of allergic reaction? it may be time to start a daily diary where are you note all the important information for ferreting out this issue... just taking some of these actions might help your anxiety.
 

Rachel Riggs

Rachel Riggs
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I should clarify that I only saw Dr. Ahern once for a consult in 2015 and he never provided me any treatment. I had no idea he was your doctor and mentioned him b/c he is the only POTS cardio I know in SD! I think he stands out in my mind b/c so many local doctors examined me but he was the only one who felt I had a neuromuscular disease (in addition to POTS and MCAS) and he was ultimately correct.

I never had the exact symptoms you were describing with your lips turning blue and I agree that something is wrong and I am hoping that he or another doctor is able to get to the bottom of it. I did have several of the other issues that you described including very low pulse pressure.



I never treated the low pulse pressure per se vs. that when we finally figured out that the core issue for me was autoimmune/neuromuscular, the treatments ultimately improved everything including my severe POTS and autonomic dysfunction. In my case it was high dose IVIG and Rituximab but I have no idea if either of these would be the right course of action for you (and none of my treatments had anything to do w/Dr. Ahern who was just a one-time consult).
Thank you for the specifics - I see Dr. Kaufman also and we are starting to discuss IVIG.
 

Rachel Riggs

Rachel Riggs
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@Gingergrrl @Sushi @voner

This is the first time to ever track my BP and I am a total newbie to this, please see below, from this morning -- any thoughts?

SYS/DIA/Pulse

7:15am 113/73/66 still in bed

7:23am 109/76/85 sitting up in bed

7:36am 108/79/100 standing

7:43am 121/91/127 walked up stairs

7:49am 99/75/104 standing, pale

7:51am 108/83/95 standing

7:55am 104/79/97 still standing, slight return of color, still very pale, yellow/tan

7:58am 94/78/98 still standing

8:00am 97/82/96 still standing

8:03am 106/82/90 still standing

8:06am 99/80/92 still standing

8:08am 108/87/99 still standing

sat down

8:13am 104/79/76 sitting

8:15am 103/74/73 sitting

8:19am 106/78/76 sitting

8:40am 126/80/97 right after a shower, sitting, still pasty, slight pink in cheeks

9:17am 112/79/86 sitting in bed, lips pale pink with blue around edges
 

voner

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Rachel,

have you heard of the poor man’s POTS test? when you feel up to it, give that a try. You can Google it or you can use this version of it from Dr. Cindy Bateman’s office:

https://batemanhornecenter.org/assess-orthostatic-intolerance/

For me, I did not have varying blood pressure issues, so a heart rate monitor that downloaded data into my computer worked really well. Then I could look up the graphs. and I took print outs to the doctors offices in it worked like a charm just showing on them the graphs. they tend to be data people and you’re given them significant data.

Perhaps soemone else can supply other poor mans POTS instructions. I used some instructions from Vanderbilt University (A leading dysautonomia center), but I can’t seem to find them anymore...
 

Gingergrrl

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7:49am 99/75/104 standing, pale
Here your pulse pressure is only 14

7:51am 108/83/95 standing
Here it is 15

7:55am 104/79/97 still standing, slight return of color, still very pale, yellow/tan
Here it has gone up to 25 and some of your color is coming back. It seems like your pulse pressure is dropping very low and this correlates with when you get pale. Is this also when your lips get blue?

I would share this info w/Dr. Kaufman and he often has me track this data and e-mail it to him (even though we already knew I had severe POTS and autonomic dysfunction). It wasn't for diagnostic purposes (for me) vs. to see how my autonomic issues are doing throughout the course of my treatments and if I need to alter any of my other meds or add salt stick tablets back in, etc.

In general, your BP is higher than mine (mine was 80/50 for about 3+ years prior to treatment) but my PP could get very low like yours (like 95/80 or 85/70 and weird readings like that). I was also getting tachy in the 160's and 170's every day (back in 2013 and 2014) but this very high heart rate/tachy stopped with Atenolol & Midodrine even though my other symptoms did not stop until IVIG & Ritux.

Not sure if any of this is helpful or comparable but wanted to share it just in case!
 

Rachel Riggs

Rachel Riggs
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Here your pulse pressure is only 14



Here it is 15



Here it has gone up to 25 and some of your color is coming back. It seems like your pulse pressure is dropping very low and this correlates with when you get pale. Is this also when your lips get blue?

I would share this info w/Dr. Kaufman and he often has me track this data and e-mail it to him (even though we already knew I had severe POTS and autonomic dysfunction). It wasn't for diagnostic purposes (for me) vs. to see how my autonomic issues are doing throughout the course of my treatments and if I need to alter any of my other meds or add salt stick tablets back in, etc.

In general, your BP is higher than mine (mine was 80/50 for about 3+ years prior to treatment) but my PP could get very low like yours (like 95/80 or 85/70 and weird readings like that). I was also getting tachy in the 160's and 170's every day (back in 2013 and 2014) but this very high heart rate/tachy stopped with Atenolol & Midodrine even though my other symptoms did not stop until IVIG & Ritux.

Not sure if any of this is helpful or comparable but wanted to share it just in case!
Thank you!! Yes, all info is helpful and it's particularly helpful to know you had some of the same low numbers and are ok now :)