Decreased oxygen saturation upon exertion

[powertool4]

Hi,

I found a great doctor today who literally sat down with me for 1 hour and then brought in another colleague to figure out what's wrong with my 22 year old body that was healthy and then crashed suddenly after surgery. My oxygen saturation at rest is 99 which he said was excellent but upon exertion i told him that i feel faint and can't breath and will pass out. He had me walk around with the monitor and after about 50 steps i got real faint and felt like i couldn't breath. Just as i had described to all my doctors, that i "felt like i'm not getting enough oxygen". To which my oxygen saturation dropped to 89 and kept dropping but i had to sit down. stopped it there. He couldn't figure out what was wrong with me and my lungs are fine and have been. The only issue he can think of is related to hematology and all traces back to anesthesia that was used for my surgery.

Are there any CFS patients that have this problem?

 

[Kati]

Powertool I never had my O2 sat measured during exercise since the begining of my illlness but I can relate to what you feel. Right now I am walking about 5-10 minutes a day- and when I go slightly uphill, I get short of breath and my quads feel like I ran an hour. I can get short of breath talking on the phone or moving from the couch to the bed.

I used to be in fantastic shape and getting short of breath just talking on the phone is plain wrong.

If you haven't done so, check out the Pacific Fatigue Lab website for more information on ME/CFS and exercise features.

 

[R**]

I had the exact same thing happen to me today. I was about to start a new thread when I found this one. My O2 rate on sitting was 100. Then taking 3 laps around md office it was 89 very quickly into the laps. My pulmonary is freaking me out with talk of ruling out pulmonary hypertension and scleroderma. I had mild thickening of bronchial tree three years ago.. symptoms OK until this fall after babesia treatment. If anyone has info, please help! Can CFS cause this for some other reason?

Thanks!

 

[R**]

can anyone recommend an portable (finger or other small device) oxygen meter brand? Thank you!

 

[Lily]

This one is on Amazon - there are several there........this one has reviews by a respiratory therapist and a Med/Peds resident......seems reasonable too...I might consider it myself

http://www.amazon.com/Finger-Pulse-Oximeter-300C12-Carry/dp/B000GEBU9K/ref=cm_cr_pr_product_top

 

[kurt]

I had the exact same thing happen to me today. I was about to start a new thread when I found this one. My O2 rate on sitting was 100. Then taking 3 laps around md office it was 89 very quickly into the laps. My pulmonary is freaking me out with talk of ruling out pulmonary hypertension and scleroderma. I had mild thickening of bronchial tree three years ago.. symptoms OK until this fall after babesia treatment. If anyone has info, please help! Can CFS cause this for some other reason?

Thanks!

CFS does so many counter-intuitive things, there might be several explanations.

For example, could be a type of dysautonomia. Were you using a finger O2 sensor? Possibly CFS can cause a lower reading due to improper vasoconstriction upon exertion. In other words, did your hands get cold while walking around? That might give a false reading on the O2 sensor.

Really they should use a more sophisticated hemoglobin and CO2 sensor along with an O2 sensor for CFS, I believe portable units are available now for that.

Another possibility, some studies have showed reduced oxygen recovery during exercise in CFS. Maybe that is what is happening. In other words, the body is slow to replace oxygen being used up.

I have surprised, amazed and freaked out many non-CFS doctors over the years. Been told I had all types of conditions I really do not have. If you are not seeing a CFS specialist, don't count on an accurate interpretation of the strangeness of CFS. Make sure to insist that everything be interpreted within the framework of CFS, and you may need to find literature for them to look at.

 

[kurt]

This one is on Amazon - there are several there........this one has reviews by a respiratory therapist and a Med/Peds resident......seems reasonable too...I might consider it myself

http://www.amazon.com/Finger-Pulse-Oximeter-300C12-Carry/dp/B000GEBU9K/ref=cm_cr_pr_product_top

Here is a whole set of them:

http://www.pulseoximeteronline.com/?gclid=CPSilvml_58CFRcvagodDSEelg

 

[kurt]

Hi,

I found a great doctor today who literally sat down with me for 1 hour and then brought in another colleague to figure out what's wrong with my 22 year old body that was healthy and then crashed suddenly after surgery. My oxygen saturation at rest is 99 which he said was excellent but upon exertion i told him that i feel faint and can't breath and will pass out. He had me walk around with the monitor and after about 50 steps i got real faint and felt like i couldn't breath. Just as i had described to all my doctors, that i "felt like i'm not getting enough oxygen". To which my oxygen saturation dropped to 89 and kept dropping but i had to sit down. stopped it there. He couldn't figure out what was wrong with me and my lungs are fine and have been. The only issue he can think of is related to hematology and all traces back to anesthesia that was used for my surgery.

Are there any CFS patients that have this problem?

I have had this problem now for 12 years. With CFS our aerobic metabolism is broken, and we have dysautonomia that creates symptoms like this that are pretty dramatic, but can not yet be fully explained.

From http://www.meactionuk.org.uk/CRITICAL_CONSIDERATIONS.htm :
"evidence from 1999 that showed impaired oxygen delivery to muscle in ME / CFS patients: oxygen delivery represents the ability to get oxygen into the small vessels of the muscle and the study demonstrated that ME / CFS patients had recovery rates for oxygen saturation that were 60% lower than normal subjects, leading to reduced exercise capacity (see “Impaired oxygen delivery to muscle in chronic fatigue syndrome” Kevin K McCully and Benjamin H Natelson. Clinical Science 1999:97:603-608)."

Of course your doctor should rule out other possible causes, but sounds like that has already been done. There are numerous chronic infections that can lower oxygen capacity on exercise, including some known to often be present in CFS (herpes, protozoans, probably mycoplasmas, and others).

 

[MargeM]

Powertool, I have had the same thing happen to me. (sats dropping while walking the hall at my doctor's office). I failed a cardiopulmonary exercise test -- that indicated I have a problem with oxygen transportation/delivery. During the test they also drew my blood and found I was low on carnitine and a couple of other labs were off. The pulmonary doctor was familiar with mitochondrial disease (which she informed me was rather unusual - because not many doctors have seen an adult patient with that diagnosis) so she knew I needed to be further investigated for that. I did get tested, and was found to have very low coQ10 in my muscle. I supplement with coQ10 and have done much better in that I no longer have problems with oxygen sats dropping and rarely have episodes of air hunger. I still consider myself undiagnosed; while it's possible I have a mitochondrial disease - the biopsy didn't prove it or disprove it. I've since learned that many people with CFS have many of the same issues.

 

[R**]

CFS does so many counter-intuitive things, there might be several explanations.

For example, could be a type of dysautonomia. Were you using a finger O2 sensor? Possibly CFS can cause a lower reading due to improper vasoconstriction upon exertion. In other words, did your hands get cold while walking around? That might give a false reading on the O2 sensor.

Really they should use a more sophisticated hemoglobin and CO2 sensor along with an O2 sensor for CFS, I believe portable units are available now for that.

Another possibility, some studies have showed reduced oxygen recovery during exercise in CFS. Maybe that is what is happening. In other words, the body is slow to replace oxygen being used up.

I have surprised, amazed and freaked out many non-CFS doctors over the years. Been told I had all types of conditions I really do not have. If you are not seeing a CFS specialist, don't count on an accurate interpretation of the strangeness of CFS. Make sure to insist that everything be interpreted within the framework of CFS, and you may need to find literature for them to look at.

Ahhh.. OK. Thank you, Kurt. My hands were constricting. The pulmonary noticed that and put that together with scleroderma. I think he is fixated on that. The echo showed no pulmonary hypertension and the pulmonary functions test OK... he wants to check my lungs to see if there is further thickening of the bronchial tree... last time.. about 3 years ago minimal thickening was found. I was sent to rheumy who did not find that she viewed on CT consistant with scleroderma.

My GRF rate for my kidneys is 59. Right below the threshold for kidney damage.. have you all heard of this craziness? Its like the house is falling down. I am also having fevers every day. I am takign yasko's methylation supps and folicin, not methy folate because that one sends me into a big detox.. I dont know if it is that or my lyme or babesia acting up.

My sister was bedridden about 5 years ago. She had severe dysautonomias and she stuck with that diagnosis and stopped seeing MDs. She said tests would be all over the place and just said its the dysautonomia and stopped worrying about it. She also had a NDe and slowly over 3 years after got well enough to function with pretty good health. She doesnt crash and extends herself constantly. ??

Thank you, Lily. That looks like a good one. Thanks for looking it up.

 

[R**]

I have had this problem now for 12 years. With CFS our aerobic metabolism is broken, and we have dysautonomia that creates symptoms like this that are pretty dramatic, but can not yet be fully explained.

From http://www.meactionuk.org.uk/CRITICAL_CONSIDERATIONS.htm :
"evidence from 1999 that showed impaired oxygen delivery to muscle in ME / CFS patients: oxygen delivery represents the ability to get oxygen into the small vessels of the muscle and the study demonstrated that ME / CFS patients had recovery rates for oxygen saturation that were 60% lower than normal subjects, leading to reduced exercise capacity (see “Impaired oxygen delivery to muscle in chronic fatigue syndrome” Kevin K McCully and Benjamin H Natelson. Clinical Science 1999:97:603-608)."

Of course your doctor should rule out other possible causes, but sounds like that has already been done. There are numerous chronic infections that can lower oxygen capacity on exercise, including some known to often be present in CFS (herpes, protozoans, probably mycoplasmas, and others).

Thanks, again, Kurt. Now which of the above! I'm so tired. And frightened.

 

[xrayspex]

These older threads I find relating to oxygen hunger are helpful as I have been pondering all week that I want to start a thread on this as in an oxygen- depriv-feeling-flare (seems like in my case flare was brought on by taking low dose estrogen for menopause and that can be like taking an ssri a rheumie here tells me as estrogen effects serotonin and that doesnt help with me.)

Anyway, I relate to powertool as mine started after a surgery too, many years ago and I have had to lie down for varying amounts daily ever since and thats how I keep going, Cheney says its a way to regulate a diastolic issue and he told me I probably have a hole in my heart, it relates to his cfs oxygen theory. I had his echo a couple years ago, but no treatments work for me with it other than lying down til it abates and avoiding too much caffeine and can't do aerobic stuff but can walk.
Oh one other thing that helps my pain but also the oxygen hunger is a low amount of darvon split up throughout the day, sometimes it buys me time before feel o2 deprived or makes me recover quicker.

I got a pulse oximeter a couple weeks ago and I found that when I feel ok its often at 99 at rest which is fine, if I walk around I saw it go to 86 today, I never tried walking with it on before so will try other days. When I feel bad without walking it is like 94-96 at rest sometimes.

I don't tolerate antioxidants like coenzyme q10, cheney would probably tie it into his oxygen toxicity theory. dont tolerate b vitz and many other things; mcs.

Stuff like ambien makes it worse the next day so dont do that, sometimes dramamine (for sleep makes it worse) estrogen, ssris snris and ritalin/stimulants strong caffeine make it worse although i might have little bursts of energy from the meds it makes me overall much more o2 hungry during the day, more time down horizontal.

Someone wrote about taking treatment for babesia --what treatment? and that it got worse. that is concerning and perplexing as i have been told to test for lymes/babesia as o2 hunger common and i thought maybe that avenue would help just havent gotten around to figuring out who can do the right tests for me. but now i wonder why bother if the tx makes o2 worse instead of better, why?

this is bogus to me, very debilitating from living a normal life and so hard to make plans cus never know when will need to lie down and its so painful in a hard to describe way to have to stay upright when i feel like i am suffocating. I got some good ideas for add'l tests from my search here but even though I have a cfs diagnosis and maybe have dysautnomia etc (had positive tilttable test) I dont have a solution, I feel like sayng its part of the cfs but providing no solution is bogus. what is the mechanism and what is the then solution? shouldnt it be a logic equation? I am really upset about it this week.

and someone mentioned NDe---what was that, near death? if so wonder how that helped.

 

[August59]

Another similar thread

Hi,

I found a great doctor today who literally sat down with me for 1 hour and then brought in another colleague to figure out what's wrong with my 22 year old body that was healthy and then crashed suddenly after surgery. My oxygen saturation at rest is 99 which he said was excellent but upon exertion i told him that i feel faint and can't breath and will pass out. He had me walk around with the monitor and after about 50 steps i got real faint and felt like i couldn't breath. Just as i had described to all my doctors, that i "felt like i'm not getting enough oxygen". To which my oxygen saturation dropped to 89 and kept dropping but i had to sit down. stopped it there. He couldn't figure out what was wrong with me and my lungs are fine and have been. The only issue he can think of is related to hematology and all traces back to anesthesia that was used for my surgery.

Are there any CFS patients that have this problem?

Hey Powertool4 - Have you seen this thread by MEG?http://www.forums.aboutmecfs.org/showthread.php?6994-Anyone-on-oxygen

It's worded a little different, but she is "desatting" and requires oxygen now.

 

[bertiedog]

I have had this problem now for 12 years. With CFS our aerobic metabolism is broken, and we have dysautonomia that creates symptoms like this that are pretty dramatic, but can not yet be fully explained.

From http://www.meactionuk.org.uk/CRITICAL_CONSIDERATIONS.htm :
"evidence from 1999 that showed impaired oxygen delivery to muscle in ME / CFS patients: oxygen delivery represents the ability to get oxygen into the small vessels of the muscle and the study demonstrated that ME / CFS patients had recovery rates for oxygen saturation that were 60% lower than normal subjects, leading to reduced exercise capacity (see “Impaired oxygen delivery to muscle in chronic fatigue syndrome” Kevin K McCully and Benjamin H Natelson. Clinical Science 1999:97:603-608)."

Of course your doctor should rule out other possible causes, but sounds like that has already been done. There are numerous chronic infections that can lower oxygen capacity on exercise, including some known to often be present in CFS (herpes, protozoans, probably mycoplasmas, and others).

Hi Kurt

I realise this is a very old thread but 2 weeks ago I had Autonomic Testing done at Breakspear private hospital in UK. It showed my oxygen saturation reached a maximum of 25 in recline and in supine max of 42 whereas it should be over 60mmHg. After a prolonged delay it reached 67 mmHg but very quickly decreased to 25 mmHg with slight exertion (deep breathing). I also had slightly high CO2 but that might be because my thyroid was a bit over at the time of the test, not too sure.

I was particularly interested in where you say numerous chronic infections can lower oxygen capacity on exercise because I do have 4 Herpes type viruses that are abnormal in my blood but I also know that I have a mold called Geotrichum species in my gut that I am unable to get rid of despite 4 years of rotating anti-fungals and taking good probiotics. Do you know if molds/yeasts can also cause similar problems with the high CO2 and low oxygen?

The hospital have told me I need to be breathing oxygen from an oxygen concentrator for up to 3 hours a day and since doing this there have been big improvements in what I can do and how I feel but naturally I want to get to the reason for this really bad dysautonomia I have, hence the post. Because I have been unwell for so long, naturally I am not that confident I will ever go back to normal but at least the oxygen is a wonderful help and I am very grateful for finding out I have such a problem.

Pam

 

[globalpilot]

Hi Pam,
Some people are finding success with an antifungal drug called Lufenuron. It is a chitin inhibitor which is part of the cell wall of some yeasts. I'm not sure if the yeast you have has chitin or not. I did try it and my stomach has been quite a bit flatter - not completely flat but much better. I bought mine over the internet w/o a prescription.

GP

 

[YLime3057]

Many of you are having symptoms of the common MTHFR Gene Mutation! xrayspex your body probably can't methylate and can't use the traditional forms of most B Vitamins. MargeM low CoQ10 is also a symptom. Many CFS/Fibro and EDS patients have these common gene mutation. I just started the correct form of vitamins and feel amazing, it's nuts. I don't know if it is the cause of my low o2 sats but I'll look into the CoQ10.

 

[Valentijn]

Many of you are having symptoms of the common MTHFR Gene Mutation!

No, we are having symptoms of the rather rarer disease, ME/CFS. Decreased oxygen is also likely to occur in any condition featuring orthostatic intolerance.

But MTHFR mutations are much much (much) more common than these symptoms, so it would be absurd to assume there is a connection. Plus there are many people, like me, who have oxygen saturation issues at times, but no significant MTHFR mutations.

 

[YLime3057]

ME/CFS is estimated to effect 2.5-5% of the population, that's not rare. There are many overlapping symptoms between ME/CFS, CFS, Fibromyalgia, Ehler's Danlos, even Chiari Malformation. What many of these sufferers have in common is a methylation problem. This article literally talks about the importance of ME/CFS patients being tested for the MTHFR Gene mutation. http://mthfrliving.com/health-conditions/chronic-fatigue-syndrome-me-cfs/
I wasn't saying that some of you may have this mutation instead of ME/CFS, just that it can be a part of the puzzle & is more common in patients who have it.
Also I have very low saturation that plummets with activity but since some weight gain 5yrs ago I know longer have orthostatic hypotension so it couldn't be the cause of my low sat issue. I probably have low CoQ10 since I was diagnosed w the MTHFR mutation so I am going to search that as a possibility since it seemed to help others on this forum. There are other gene mutations that can cause decreased methylation that can be looked at.

 

[taniaaust1]

YLime, thanks for that,I didn't know the low blood oxygen thing could come about as a part of having the MTHFR mutation which I do have.

A couple of months ago I had an incident in which the hospital put me onto oxygen for several hours or so while I was there due to my oxygen levels have dropped. The trigger for this was either the fact I'd got upset or due to a drug they'd given me (I'm going to get a copy of my hospital notes sometime as I have no idea just how low it did go).

 

[YLime3057]

YLime, thanks for that,I didn't know the low blood oxygen thing could come about as a part of having the MTHFR mutation which I do have.

A couple of months ago I had an incident in which the hospital put me onto oxygen for several hours or so while I was there due to my oxygen levels have dropped. The trigger for this was either the fact I'd got upset or due to a drug they'd given me (I'm going to get a copy of my hospital notes sometime as I have no idea just how low it did go).

I was also hospitalized for low o2 saturation a few months ago. I won't know for sure if it's connected to MTHFR until I try CoQ10 and see if it changes. From what I've read this strange symptom of having low o2 sats that dip even lower with little exhertion is usually due to something metabolic so if the CoQ10 doesn't work for me I will look at other ways MTHFR could be involved as it can cause levels of numerous things to be off. Please let me know if you get yours solved and I will do the same, I am on oxygen 24/7 and would love to get off of it!!!