Sorry for what seems a rather complicated and in some ways trivial first main question. I have had a look at some, just some, of the may posts on fatigue. I am getting progressive episodes of feeling that I am not breathing enough/sighing/yawning. This is associated with lower O2 SATs (mean 94% sedentary activity mean 90% resting with lows of 84%) this improves with exercise (SATs go up) or after some rest/sleep. I have raised this with my brothers (who are doctors) and they know a good bit about my co-morbidities. What I was wondering here is if anyone thinks this sounds like fatigue or whether we should be looking wider. Apart form raise ALC I have quite sound bloods staged at A Binet and probably 0 on US system. So the Haematological consultant said there was no Haematological reason for this. That is as maybe but it does have an increasingly severe negative impact on my quality of life.
Fatigue and O2 SAT?: Sorry for what seems a... - CLL Support
Fatigue and O2 SAT?
I notice that you have heart issues Les and this certainly can cause hypoxemia but obviously only your doctor could know if it's connected.
When you're talking of oxygen levels, are you measuring with a finger oximeter because 84% is extremely low and would require investigation. Presumably there's no anaemia or your haematologist would have picked it up on your labs.
Obviously speaking purely as another CLL'er, fatigue is one thing but breathing issues and poor oxygen levels are another and if be wanting further and immediate investigation. My levels didn't drop that low when I had severe pneumonia. Do you have lung disease as a co-morbidity?
Just throwing out ideas but the only other thing that occurs is possible sleep apnoea.
One for the docs I think Les. I'm not sure what your brothers advise on this. Did they have any medical ideas?
Regards,
Newdawn
Thanks for the quick reply. They (my medical panel) are 'thinking' meaning it is complicated and not obvious. I suspect it goes on the list for the GP who I see Friday. I am trying to minimise this list so it fits into the available time. My general heart function is good (EF 66 %) with controlled AT. I have small airways disease/asthma although airways seem clear right now and I am not using an inhaler. I suspect a trip to the pulmonologist is in the offing. However it is strange that the SAT level improves with exercise and strange that it comes and goes. Does sound like it is not CLL related though which is useful many thanks.
Hi Leshere, This past year I have had times when I felt I was not getting a good breath and needed frequent yawns/sighs to feel relief. My lung and heart tests were fine. Oxygen level 97%. Doctor felt may be anxiety. My guess was my enlarged spleen. I have not had the breathing problem for about a month and hope yours also goes away.
Hi Leshere and Judyanne,
I have the same breathing problems but I've had it for years - since my late 20's and I know I didn't have CLL at that time. I didn't have a GP at the time but when to my GYN and he asked me if I had that problem at night - if I woke up during the night trying to yawn to get a deeper breath. I'd never thought about it but I told him no I didn't. He concluded that it was anxiety and I've suffered with it off an on ever since. My GP now has me on Zoloft for the last few years although I didn't want to start on it. He said it was up to me but it was a quality of life thing. So I started on it and it was amazing the difference it made. However after some time the breathing issue came back and when I told him he increased the dosage. That worked well for a time as well and then it was back. I have increased the dosage twice since then and it is better but still around. I am positive that it doesn't relate to my CLL but the CLL has probably added more anxiety to my life in ways I can't explain. I don't think your problems Leshere are the same but I'm really answering for Judyanne since her problem seems more closely related to mine. I wish the best for both of you and I hope you find the answer to your issue Leshere.
Prior to my diagnosis Zi would go hiking or skiing. I would notice from time to time that I would have to catch my breath but I though it was from quitting smoking. Now since my diagnosis, I will be in bed watching tv so Ai am sitting propped. I at times find I need that extra breath. I though at unrest is it anxiety but it us all in the breathing. I even went for sleep apnea test yo see if it was that as it happened in my sleep. I do think it is for the spleen and pushing on things. I am very swollen in the abdomen area. This has definitely played a role in my breathing. Just my experience
I thought it was the spleen because difficult getting deep breath due to some obstruction. Spleen has moved location or shrunk if that is possible because not felt as much at night and even hematologist couldn't feel this time. This is coinciding with no breathing problems. CT next year.
CLL fatigue is poorly researched, but Dr. Keating proposed 12 years ago that it is a cyctokine release by good B cells that triggers a low level, 'sick' immune response...
Sick and tired or fatigue are very close and misinterpreted by the patient...
My doctor suggested exercise rather than naps and while it is counter intuitive, it worked very well to keep my CLL sickness/fatigue in check...
After about the third round of treatment 5 years ago the fatigue was gone and has never returned, I felt 20 years younger... it is insidious...
~chris
PS if you have swollen neck nodes, have a sleep study...sleep apnea can creep up on you as nodes enlarge and complicate matters. Low O2 at night can be an issue all day long...
Always get the green light from you medical team, for everything...including increases in daily exercise
I'm stage 0 w&w. Suffer extteme fatigue. Some of it of course is due to other influences but I'm sure not all.
Peggy
Your picture is how I'll be feeling this afternoon.
If you can, go for a walk. Its the best solution.
Best wishes,
Ernest.
Low so2. Lungs? A chest specialist might help. And a chest physiotherapist. They helped me. But if you haven't got a cough maybe not.
Hello. Same was happening with my husband. The results from a sleep study showed his O2 sats dropped into the low 80s while at rest, yet they recovered with exercise. He now wears a cpap while sleeping or resting. The cpap machine, along with exercise, solved all of the oxygen saturation and related fatigue problerms.
Wishing you the best!
Thanks for your reply. Yes what is strange is that I do not snore unless in a strange posture e.g. on a train seat and even then only at times. More exercise and weight loss is needed anyway so I am going with that. Rest also helps, I was very short of sleep Saturday night...Sunday was bad. Sunday night was better and today is good. Roller Coaster!!
Good Luck! Be sure to keep us posted. 
My 'medical friends' well at least one of them thinks it may be heart related and I should discuss with Cardiologist next time I see her. That would make some sense since clearly me heart, whilst 'strong' is prone to going to slow ( or too fast).
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