Signs of Hypoxia - anyone had this?

With ME, I have had bluish lips, and fingernail beds many, many times. Not consistently, but intermittently. I understand this is a sign of hypoxia, low oxygen in the blood. My husband has wondered if I need oxygen. I don't get this so often now, however, it happened very frequently once my ME really worsened, many years ago.

I've had cardiopulmonary tests, ECGs, echocardiograms, and other investigations, but an underlying cause for hypoxia has never been indicated. Not that this was followed up on, and testing done for this particular concern. Physicians have never picked up on this blue tinge. To be fair, the "bluish times" were often when I've been in a crash, and so, I have not likely been out to see any medical people at that time.

I can't specifically recall if I noted this to doctors, but probably did. I was likely not in a "blue phase" at the time of the consult. My noting this discolouraton, and not having it at the time of the consult may have added another "imaginary symptom" to my list.

With more recent, and past studies finding circulatory problems with ME, I wonder if other pwME have had this sign.

If so, I would really like to know why this is ignored by many health professionals. Some medical professionals must have noted this? I haven't seen this listed as a symptom in the CCC. Maybe I've missed it?

Below is a 1954 article about hypoxia. Other more recent sites are commercial, and I wanted to stay away from that.


"Hypoxia: Its causes and Symptoms"

" '(from The Complications of General Anesthesia in Dentistry as Related to the Respiratory System", Douglas, B. L., Oral Surgery, Oral Medicine, Oral Pathology, 7:2, Feb. 1954).' "

"The failure of the tissues, for any reason, to receive an adequate supply of oxygen, is known as hypoxia or oxygen want.'

CLINICAL SIGNS The first clinical sign noted in the hypoxic patient is cyanosis. A bluish discoloration appears first in the capillary beds of the mucosa of the lips and lobes of the ears. Next, the conjunctiva and the fingernails take on a bluish tinge. Finally, a duskiness appears over the whole body."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2067517/pdf/jadsa00124-0004.pdf

Thank you for your comments, and votes.

 

I've answered no, because although my nail beds can go a little blue, I am nearly always borderline, if not actually anaemic. So, there is a probable explanation in my case, I think.

 

I am unsure what to answer. I have never had bluish lips or nail beds but my SATs are lower than ideal. I feel much better on the couple of occasions when I have had oxygen. I have never been anaemic since I had ME.

Have you checked your oxygen level in blood ( SATs) using a pulsox monitor? My levels are often low but cardiac surgeon does not seem concerned. Level is variable but a bit higher with low dose aspirin.

I do have mitral valve problems.

I am really needing guidance on what hypoxia really is.

ETA: is it oxygen level in blood or level of red blood cells in blood? The former?

 

Thank you @Invisible Woman. Low iron and hypoxia. Other pwME have noted low iron on other threads. I wonder if this is due to dietary preferences, budgetary restraints...., or something else.

Yonks ago when we were waiting to see a ME expert, a woman was wheeled in on a stretcher by ambulance attendants to see this doctor. This patient was ashen, very still, and very quiet. This really gave us pause.

This was our first introduction to how bad ME can get. I was often, and still am bedridden, and usually housebound, but this woman looked way beyond that.

 

In general I don't have signs of hypoxia. However a year and a bit ago my left foot went black. This foot is already damaged, and OI is part of that, but it went black when I took Metformin. Now this is a sign of hypoxia, but it might not actually be hypoxia. It might be metabolic or mitochondrial. That is in fact the issue ... when do we actually have hypoxia, as opposed to signs? Is it general hypoxia, or is it localised hypoxia? There is so much we do not yet know.

One thing that is becoming clear is our oxygen utilisation is low. Is it from failure to metabolise properly, or is it from hypoxia, or both? This is a big thing we need to figure out in the coming years.

 

In my own case it seems to be down to problems with absorption. It predates the ME by a long way. I have problems absorbing other trace elements too.

Unfortunately, I cannot tolerate most iron supplements. My diet is good (and I have done a lot of work on it over the years).

 

Thank you @Binkie4. I have tricuspid valve problems. I've been told it is stable, but the last test for this was 9 years ago.

I have read that heart valve problems can occur with ME.

This info was in a ME specialist's general notes to new patients.

My pulsox readings have always been good.

I have had borderline low iron from time to time, but this wasn't noted as a problem early in my ME, when I was at my bluest.

 

Hi @Binkie4. Here is a WebMD site about hypoxia. This is a more commercial site.

As I understand from this website, hypoxemia is low oxygen levels in the blood, which can cause low oxygen in the tissues, which is called hypoxia.

https://www.webmd.com/asthma/qa/what-is-hypoxia

Hope this helps!

 

I put 'no' because I don't normally have hypoxia. If there is an occasion where I have to get something accomplished in a limited time without proper pacing, my blood oxygen will go as low as 90%. Not fun.

 

There is evidence now we have standing low heart preload, see Systrom's findings, and this basically means not enough blood is getting back to the heart for it to function right. You are most at risk of this from current understanding if you have OI or small fibre neuropathy.

 

I think that was the problem when my heart stopped several times when I was at my worst.

 

Thank you @alex3619, for remind me about this work. I am excited about David Systrom's research, and hope his current study with pwME comes out soon.

I understand that Mestinon, recommended for this problem is not an easy drug. Do you know anything about Mestinon? Of course any drug can have side effects - some aren't worth taking due to the side effects.

 

@DokaGirl
I know that people have written from time to time about feelings of "air hunger" as someone memorably described it on PR. I have experienced this quite a bit. I was Asthmatic as a child and this feels the same a sort of numb tingling that starts at toes and fingers and works inwards and yes "air hunger" but without the wheezing. When I have it I have noticed that the blue veins in my arms and hands become prominent, and nail beds turn blue but I have not being able to stand up and walk to the mirror to observe my lips.

I associate these symptoms with having supplemental bioflavanoids or too much hibiscus tea. But I also think that they are to do with the blood cell issues noted by simpson http://www.anapsid.org/cnd/diagnosis/redcells.html and now being researched by the people at stanford. https://forums.phoenixrising.me/index.php?threads/a-message-from-ron-davis.62224/

I find that taking evening primrose oil seems to work for me. Or that it does now. When I first tried it in 2015 it just gave me lots of diarrhoea. I do not know how your digestion is. I need betaine HCL and enzymes and used to need to take ox bile too. These days I find that I produce my own bile if I eat liver or have plenty of hibiscus tea. But I still chose to slowly work up from 1g/ day to 6-7g/day, which seems about right for me.

 

A couple of years after onset, I had a couple of doctors (gastroenterologists at UCLA) take note of the color of my fingernail beds and ponder their significance. I think my nail beds are somewhat darker and more deeply colored than usual (and perhaps slightly tinged blue). To me, it seems normal. However, the sense I got from them was that the color was somewhat atypical, but not really associated with any condition.

At the time, it just seemed odd to me that this interested them as much as it did.

 

Some have considered hypoxia/hypoxemia in ME:

Study of impaired oxygen delivery in "cfs":

Impaired oxygen delivery to muscle in chronic fatigue syndrome, 1999:

In conclusion, oxygen delivery was reduced in CFS patients compared with that in sedentary controls. This result is consistent with previous studies showing abnormal autonomic control of blood flow. Reduced oxidative delivery in CFS patients could be specifically related to CFS, or could be a non-specific effect of reduced activity levels in these patients. While these results suggest that reduced oxygen delivery could result in reduced oxidative metabolism and muscle fatigue, further studies will be needed to address this issue:

https://www.ncbi.nlm.nih.gov/m/pubmed/10545311/



Article: Six year study of abnormal brain changes in chronic fatigue syndrome patients:

https://meaustralia.net/2016/07/12/...changes-in-chronic-fatigue-syndrome-patients/



Book review: Dr. David Bell's Cellular Hypoxia and Neuro-Immune Fatigue

http://www.cfstreatmentguide.com/blog/book-review-cellular-hypoxia-and-neuro-immune-fatigue

 

Thank you for your comments @richard7. Off and on I have used evening primrose oil. Not sure if it helps. My digestion is not great. I use some supplements for this.

I think the red blood cell issue research may yield more useful findings.

 

I wonder if you would see signs of hypoxia, like blue lips and fingernail beds, if the blood simply couldn't be delivered in an adequate amount to the smallest vessels - perhaps as a consequence of reduced blood cell deformability, or maybe as an effect of some impairment of nitric oxide's ability to dilate the smaller vessels. I'm not really sure if this would result in a blue tinge, or if it would just make things look "pale."