Fatigue

[Roverbash]

My husband sleeps off and on all day in his chair he has recently been diagnosed withCLL and despite enlarged lymph nodes and slightly swollen spleen lymphocyte numbers going up all the time is still having tests but is on watch and wait.i don’t know what is his diabetes or CLL.He can’t come to terms with having CLL and is getting so depressed I,m worried.

[GMa27]

You said he has diabetes and CLL?

Is he seeing a CLL expert? Would help for us to know his markers and what tests he has had.

Tell him CLL is chronic....most are on Watch & Wait (W&W) for long time. If not, there are lots of treatments out there. Many achieve remission.

Glad you found us. Lots of great sites on the subject. You are not alone! 💕

[Cllcanada Top Poster CURE Hero]

I had mind numbing fatigue with CLL for years. Its actually a chemical in the immune system, triggering a 'sick' response, like flu without the bug... 🐜

Your husband needs a full workup and assessment, B12, VitD3, folate, thyroid test, immunoglobulins... the whole 9 yards.

Two minutes after my butt hit the La-Z-Boy at any time, I was asleep... and it was so bad, I had to go on long term disability what followed a two year fight with the government... for compensation.

Suprisingly , I found daily walks after a few months began to lift my malaise and depression, and when I doubled them to twice a day, things improved more. I had no B12 and stated injections and within a few months, I wasoff head meds for depression. I'm also Type 2 diabetic and that issue was managed without medication... just increased activity and diet.

Talk to your CLL specialist and see what they suggest, nobody should have to continue in the state I found myself in...

All the best, let us know how you get on, and please be proactive.. 😀 there is help...

~chris

[Quarry]

You mention he has been recently diagnosed - the shock hits all of us initially and some harder than most.

However, the reality is CLL is a chronic disease (it won't go away) but not an acute disease (so nothing happens quickly - and when eventually it does there are treatments). I think of it as a set of stairs (where the top is not a good place).....gradually the CLL pushes up the stairs, though you can stay on each single step for years. Eventually your CLL specialist will tell you, 'ok, you are high enough up the stairs - you need treatment': this then re-sets you near the bottom of the stairs. And away you go again. Many of this group have lived with CLL for many 10s of years...others of us are intending too, just diagnosis was to recent for us to get to those number of years.

So after a while, we get used to living with CLL: but it does take time. Exercise helps rejuvenate us and is also good for mental health (and will also help diabetes and Chris says). So do get him out for some walks and/or seek specialist help (there are great support groups - I don't know which country you are in)

[Ladylin151]

The type 2 diabetes can play a big role in feeling sleepy throughout the day. Often, eating carbs will raise the blood sugar and as it falls we feel a strong dip in energy and even fall unexpectedly, asleep. Regulating intake to prevent rises is an excellent beginning, but medicating carefully and movement to help with using up the excess is key as well. It would be easiest, I think, to manipulate blood sugar issues first, before trying to deal with changing cll.

[Newdawn Administrator in reply to Ladylin151]

As a reasonably well regulated diabetic, I agree with this advice and the suggestions of the other posters.

Is your husband overweight and fairly sedentary (not a criticism just a question). High sugar levels can cause such a feeling of malaise and fuel infections. Put CLL in the mix and they’re like toxic mates running riot!

I’m wondering if your husband is sleeping ‘properly’. It could be the swollen nodes are creating sleep apnoea. It’s worth checking out with the doctor.

Diabetes can really fuel lethargy and a general feeling of being fed up. If I could commend any book to him to help it would be the one by endocrinologist, Dr. David Caven, ‘Reverse your diabetes’. It really helped me and is written in an understandable way.

Best wishes,

Newdawn