Log in
CLL Support Association
10,929 members16,899 posts

Cll and fatigue

I was diagnosed in November 2017 with stage 0 cll; FISH test is negative; and now waiting on NGS/foundation test results. The biggest problem I have right now is chronic fatigue that is on the point of being debilitating, also infrequent headaches. My family doctor prescribed Adderall to help with the fatigue. Has anyone else been prescribed Adderall and found it helpful or is anyone else aware of a better solution? I've also been advised to begin a regular exercise routine.

16 Replies
oldestnewest

Exercise has been reported by other members to have helped, just don't overdo it! Also have a look at these other posts to this frequently asked question:

healthunlocked.com/search/f...

Incidentally, debilitating fatigue is one criteria for starting treatment, so I hope you find some helpful tips.

Neil

6 likes
Reply

Thanks Neil. My doctor put me on w&w after my FISH results. I guess treatment is always possible; I'll ask him. Last comment from him he was waiting for a consult with Jan Berger, a cll doctor at MDA.

3 likes
Reply

Hello TXteacher, I was advised by my haematologist at stage O that disease burden was so low that really, chronic fatigue may be due to other factors, such as lifestyle, age, etc. Exercise did help with this. I hope it does with you, too. Kindest regards :)

4 likes
Reply

I had the same! They told me it was not due to my CLL. So I went to my gp. I admitted I snore very very loudly. She referred me to my local sleep unit. They did a sleep assessment and found I had Severe Obstructive Sleep Apnae. I now wear a special mask at night called a CPAP. My chronic fatigue has become just getting a bit tired and it's only been a few weeks!! And I no longer snore!!!

4 likes
Reply

I also had debilitating fatigue. After pushing my hematologist/oncologist to check further, it was discovered that I also have hypothyroidism. Treating this gave me my life back. I still have fatigue, but I feel so much better now. I urge you to look into other things that could cause the extreme fatigue. I am stage 0 also, diagnosed in July of 2015, but have had CLL since 2013. I am 53 years old.

5 likes
Reply

I also have hypothyroidism and have been taking Levothyroxine for over 20 years. Still have chronic fatigue. I believe some of it is psychomatic, but cll must be making profound contributions.

2 likes
Reply

I take the same medication. Do you take anything at night to help you sleep? What is your ALC and WBC?

Reply

Trazadone and Ambien. My last WBC was 17.9 not sure what the ALC is.

Reply

I to am hypothyroid, discovered long before the CLL dx. Based on my continuing symptoms, my Endocrinologist moved me to Armour thyroid meds. What a difference!! My puffiness went away, a great deal of energy returned (not all, but I am older than I was😀) and my sleep improved and I lost a few pounds. We continue to tweak my meds as needed. I bless this endocrinologist as she is the one who found my CLL. Don't be afraid to ask for a change in your meds, have the discussion.

1 like
Reply

That's interesting. What are armour thyroid meds?

Reply

Thyroid hormone is used to treat underactive thyroid (hypothyroidism). It is a natural product made from animal thyroid glands (usually a pig's). It replaces or provides more thyroid hormone, which is normally produced by the thyroid gland. Armour thyroid contains both T3 and T4. Levothyroxine is only T4.

1 like
Reply

Armour thyroid is natural (from pigs) containing T4 and T3. Levoxyl is synthetic thyroid containing only T4. Your body generates T4 and then converts it into T3. If your body doesn't do that conversion well Armour can be more effective than Levoxyl. (I take both.)

Reply

Along with the fatigue "Related Posts" (top right column on your computer screen). There are 4 past discussions on Adderall

healthunlocked.com/search/a...

And a Patient Power video from Dr. Thompson at MD Anderson

patientpower.info/video/im-...

Len

2 likes
Reply

Stage 0 here, too.

I did not find Adderall helpful, but the threads show others do. Worth a try. I've had emotional trouble since I was young, and take other psych meds for anxiety and depression. I use a Bi-PAP for apnea, I take 2000 units of D3 daily. I'm obese. Losing weight too fast sends me into depression, and makes the fatigue worse. I'm working on it slowly - I'm down a few lbs from my peak several months ago.

I really think depression and fatigue overlap a lot. Depression makes me sad, and I want to give up. But the depression meds have helped - after trying several. Fatigue by itself doesn't have the sadness.

Any extended exertion leaves me exhausted - taking out the garbage to the street, even taking a hot shower sometimes. Putting air in the tires of my car is a track and field event. I've seen so many specialists and had so many tests - cardio, pulmonary, hormones, etc. I've found a few things, but no magic bullet. I also have chronic sinus, ear, and eye infections. My gut doesn't like some foods - I have IBS. I have some osteo-arthritis in my hands. I'm the classic difficult patient. I'm old for my age.

One thing I notice is that when the overwhelming fatigue sets in, a 45 minute nap relieves it. I've been able to ride out the 45 minutes without napping, but I do get more tired as a result. So I take a planned nap each afternoon. I work from home, so this works well as my lunch break. I tried 30 minutes, I tried 60, but for me, 45 is my basic minor recharge. But I get repeated waves of fatigue on some days, especially after major emotional or physical activity. On a bad day, I may take 2 or 3 naps.I do computer tech support, and a complicated, urgent problem gets my adrenaline and related chemicals up, and my brain uses up a lot of glucose. My whole head hurts. Nap time.

I tore cartilage in my knee, which reduced my walking to nil. I had physical therapy some months later, and learned some simple exercises that keep me from metamorphosing into a shade tree. The best exercise for me is sit-to-stand - from a chair, stand up, then sit down. Repeat 5 times to start, and gradually increase. Don't be a hero. It gets my blood moving, and works large muscles. I can feel the blood flow back into my feet.

I also march in place - lifting my knees high, and do side steps to work my groin tendons and muscles. I do stretches for calf and hamstring. I do some leg lifts too, while sitting. The idea is to get some minimum level of exercise I can do even when sick, even if it's only 5 repeats of something that sounds trivial to a normal person. Better to do 5 of some exercise several times a day than to do 20 and injure something. I've gotten up to 30 repeats, and then had to go back to 5 several times now due to illness. I keep thinking, "what will I do when things get really bad?" I suppose, I'll sit to stand once, and then take a break.

The one thing I'm trying to avoid is becoming frail before my time. Each successive infection or injury again reduces my activity, and I never completely recover. So, I'm trying to set a baseline. I use my cell phone to count my steps, and try to get to 2000 per day, which is very low activity for a normal person. I set an alarm on my cell phone to get up and just walk to another room or do some exercise. I hit 4000 steps on days I go to the clinic - just because of the distance I have to walk inside the buildings. Some days I'm exhausted, but some days not. It varies with some Mystery Factor X.

I have not tried Voudou yet, but it's an option here in New Orleans. I visited Manbo Sallie with an anthropology class 20 years ago. She had a head cold at the time. I asked her what she sells in the shop that works for colds. She said "Not a thing."

islandofsalvationbotanica.c...

I wish everyone a better New Year.

=seymour=

5 likes
Reply

I have not had Adderall prescribed. I did get bupropion about two months ago. Had to discontinue -- could not concentrate for work.

Reply

I couldn't do my job without Adderall. I thought I was depressed but now with a new job am feeling better than ever; I have literally never felt better in my life, also probably due to my best friend and former girl friend who pulled me out of a deep depression with some tough love, marijuana and Xanax. I'm also getting a lot more physical activity walking my dog. All the while my white cell count continues to increase. What else can I say?

Reply

You may also like...