CLL and CFS

[shornoff]

I was diagnosed with CLL just over a year ago about a month after another episode of CFS (Chronic Fatigue Syndrome) started.

I went on holiday to France and spent two weeks lying on a bed and had to get a wheelchair to get to the plane for my flight home.

A year later I started to improve and now, two months later, have had very few instances of CFS.

Not all fatigue is caused by CLL. Anyone else have experience of both CLL and CFS?

[Canuck901]

How’s your red blood count and iron levels ? That could be the major cause of your fatigue

[shornoff in reply to Canuck901]

Thanks for that. In 1996 and 2008 I had bouts of CFS and had bloods taken. Results were fine.

In 2017 my blood results were usual CLL but my fatigue has been improving to point where I am now as fit as anyone who is a sedentary old fart! Can people's fatigue improve on W&W with time?

[farbled]

I had cfs 4 years before being diagnosed with cll. That was back in 2006. It cleared up over 3 years and then the cll hit. I have been on w&w since 2010 for the cll. This year I went down in March, fatigue, bone pain, leg pain, heart, liver, dizziness, everything. I've gotten worse and worse and been in bed since July now. The docs have tested me for the standard stuff (in Canada, our docs have very narrow guidelines, break an arm, awesome, something obscure, better get life insurance). Anyway, they have pretty much given up (not that they have tried much) and will diagnose me with chronic fatigue soon and get me off their file.

I am very depressed about it since the first time I had it was horrific, and my symptoms are different now, but way worse. My up time was measured in hours, now in minutes. On the plus side, I am a writer, so I can at least do that more.

[shornoff in reply to farbled]

I am so sorry that sounds like my CFS on steroids. Although Steroids may have helped!

I started this bout of CFS in August 2017 and now have been almost fine since September 4th this year. So it can get better. Really hope it does for you.

The link between CFS and CLL is getting stronger.

[shornoff]

Thank you. That is very interesting. That would explain my CFS of 22 years ago and later bouts. Just had the normal blood tests.

I need to read up on cytokines.

[farbled]

Thanks, I guess I am used to it. I found a CFS specialist, but I have to wait for a referral. That will happen (I hope) in February. Sigh...

[shornoff in reply to farbled]

The best thing that happened to me was when someone said "You have CFS." Just having a diagnosis made me feel so much better.

At least we live in sensible countries. Life must be awful for those poor people south of your border.

[farbled in reply to shornoff]

Well, I was diagnosed way back when and it ran its course over 3 years. This time around, they don't know. My internal medicine specialist told me she would run one last test to rule out some things and then say it's cfs simply because its not something else that would commonly show up. I could literally have almost anything that doesn't show in standard tests on the front page of the req form, but they will say cfs rather than dig deeper. It is a little frustrating not being able to get it figured out, basically through lack of effort.

My CLL specialist won't do anything unless my standard blood test changes. That is all she cares about and refers anything unrelated to my CLL (actually just my WBC) to my GP. My GP refused to run many tests because of expense to the province, she was quite up front about it. So I am stuck in bed for the foreseeable future.

I do wish sometimes I was in the US if only to choose a better doctor. There is also such a shortage of docs here (in BC outside of Vancouver) that I cannot even get a new one since if you have one already, they usually won't let you switch.

Sorry for the vent.

[shornoff in reply to farbled]

You can vent as much as you like. Keep venting and keep venting on here 'cause venting helps.

[farbled in reply to shornoff]

Thanks. Usually I just curl up in a ball and cry and then doze for 20 minutes at a time. Change calendar and repeat.

[farbled in reply to shornoff]

And my complete apologies for hijacking the thread. I hope your symptoms are mild and that it doesn't impact you too much!

[shornoff in reply to farbled]

My symptoms at the moment are non existent. Thank you for your selfless thoughts. Hoping it clears before too long.

[Lapo]

Hi, Shornoff.I realise this is an old post but I too have been diagnosed with CFS, having had CLL for 9 years. Have you come across many such cases and what is your experience of this "double-whammy"?

[shornoff in reply to Lapo]

Hi Lapo. I haven't come across anyone who has even the vaguest answer to ME/CFS. I try to doas much as I can but stop well short, then push it a bit and then swear and lie in my chair and sleep.

I'm lucky. I don't think I've got CLL fatigue yet.

How are you? Have you any answers?

[Lapo in reply to shornoff]

I have no answers either. Have had fatigue with CLL since diagnosis 9 years ago but my GP thinks that recent symptoms, which my oncologist dismisses as unrelated to CLL, could be a fit for CFS.

I have done some research and cannot come across any instances of CFS and CLL "cohabiting".

Perhaps it's "just" the CLL after all...

Take care, Lapo