Fatigue

It's been 6 years since I was diagnosed with follicular lyphoma. During treatment I would take a 2 - 3 hour nap. Working between treatments was hard because I was in the office. No Naps. When I was NED I hoped the fatigue would lessen up but it really didn't. I ended up resigning myself to getting 9 - 10 hours a night. Often it was 8 - 9 hours. Over the years the amount of sleep has varied. Currently I do well with 8 hours during the week. Weekends I 'catch up' with upto 10 hours. I really hate taking naps because I always can think of things I need to do. Bottom line i learned, at this point, to just accepted the fatigue. 

Gwfl said:

Test results of my home

Test results of my home overnight apena test showed an AHI level of 45...very high, very bad from what I can gather.  Another lab test is being set up but this result might just be the reason for some of my fatigue, or all of it?  Oxygen level dropped to 88% overnight.

Gwfl,

Any AHI result of over 30 is classified as "Severe."  While apena may not completely account for your fatigue, it no doubt is a significant portion.

My wife and I both have significant apena.  Long term, it can also eliminate all REM-level sleep, causing confusion throughout the day, irritability, and other symptoms.  After beginning with a CPAP, a condition known as 'REM-Rebound' usually occures.  It did for me.

Your doctor will almost definitely get you on a CPAP machince as quickly as possible.

max

Gwfl said:

How long did your initial

How long did your initial "rebound" take and are you still wearing the CPAP?  Unfortunately it takes some time to get results back.

I still use a CPAP, 17 years later.  Most insurance carriers assist toward buying or leasing them, and even do replacements every 5 years or thereabout.  Compared to cancer therapy, CPAP use is quite cheap.   Some people get off the machines via significant weight loss, if overweight when initially diagnosed, but that was not an issue for me from the get-go.   Wearing a mask is odd feeling initially, but I always use mine now, even if taking a nap.   

CPAP perscriptions and analysis are usually either by a pulmonologist or a neurologist.   My doc said that because my sleep was so interrupted I probably had not had REM sleep in a long, long time.  Most doctors, after determining that a patient has apnea, will then require them to use a machine overnight, monitoring to see how well it works, and what pressure setting to use.   At the second test, he said that I was in profound REM Rebound, which is a situation in which the brain "makes up" for lost REM sleep.  This is not harmful, or hardly even noticable, to the patient in most cases, and can run from a few night to weeks or even months.

My tests were all done at an overnight sleep lab, and also discovered that I have RBD (rem behavior disorder), in which a person does not 'freeze' during REM sleep, and can thrash about during nightmares. (During normal REM, the brain stem freezes neuromuscular activity to the limbs.)  And I have RLS.   I have had episodes in which I startled so violently in my sleep that I cleared the bed and landed on the floor.   RBD is strongly linked to the emergence of Parkinson's (> 50%).  But apnea by itself seldom has RBD.   My point is that a great deal can be learned from sleep studies.

Apnea diagnosis is not a medical emergency.  Waiting is what Americans do best,

Might all those sleep disorders in your case be due to that major traffic accident you suffered? Just wondering...

Is what I have done lately. Suspecting a recurrence of anemia, I requested some blood work. It came back as abnormal, but normal for me. Creatinine high due to chronic kidney disease, Hematocrit a very low 33, but high for me. It has been as low as 19, which provided me with overnight lodging and an intravenous cocktail last year.

But nothing to indicate why it is almost painful to remain awake at times. Headaches of migraine quality arrived and I generally never have a head ache of any type. DW claims that I AM a headache. Anyway, the Ruxolitinib (Jakafi) is known for fatigue and headaches and doctor believes that, even though no dose adjustments have been made outside of a prednisone taper, it is the Ruxolitinib causing all of this.

That is strange after almost 1 1/2 years on it, but things change. As REO Speedwagon sang, I've got to "Roll with the changes."

ShadyGuy said:

Tortoise

But where is Napolean? He carved his initials in that poor things back!

In first grade, my elderly teacher told my mom at Parents' Day that 'He is smart, but slower than pond water. And it never moves.'  When teaching high school, I was nicknamed Ben Stein, for the excitement I exuded.   At parties, I'm the Weekend at Bernie's guy proped up in the corner.  Animatin is way over-rated.

Gwfl said:

Update

Been working with the CPAP equipment a few weeks now and feeling much better.  I've only managed to reduce my AHI by 50% but even so am finding more engery now.  Also more hyrdration is very helpful.

Also had another PET scan last week waiting for results this Thur.....fingers crossed.

Good news that the Cpap is helping. I've got my fingers crossed that you get good news on the Pet scan too.

Gwfl said:

Was feeling particularly bad

Was feeling particularly bad yesterday so I called my oncologist's office and they had me come in and do my blood work just to check.  Everything was good and counts are climbing and almost normal.  Gave me some relief that I wasn't ignoring an encroaching problem and most likely just have to focus on fatigue being a side effect of treatment. Also have appointment with PA next week.  

My daugther just star her quimo and she is always tired, is that normal? will ever go away? or as I read in your post, the fatigue is a side effect, and how you think I can help her? she is 17 TKS