Hi is there any way I can fight the fatigue that I suffer any help would be gratefully received

[madmaria]

I was diagnosed with Fibromyalgia and Chronic Fatigue 4 years ago However the fatigue got so bad that I did not stop going to my doctor She is fantastic I may add and soon found out I have CLL. I really do eat very well veg fruit nuts olive oil flax seed oil but still shattered I can sleep for 24 hrs 3 times a week or so and wake only to go to the loo and drink water I drink at least 1.5 litres of water a day love avocados and nuts so why am I so shattered I have my first visit to the Cancer Day Unit and see a Haematologist tomorrow I am not having any treatment yet but would love to have less fatigue and the ache in my bones to be less many thanks for reading this any practical advice would be gratefully received thanks in advance

[MsLockYourPosts Passed Volunteer]

Have you had your thyroid checked? Also Vitamin B and D levels? Sometimes the fatigue is caused by the CLL, but some have found that other factors play into their fatigue. Hopefully your hematologist will be able to help once she has a good picture of exactly what your CLL involves. You didn't mention which tests you have had done to make the diagnosis. If you post test results when you get them others here can help explain them or direct you to good resources so that you have a better understanding of your particular CLL.

[madmaria in reply to MsLockYourPosts]

Ok many thanks I will post the results when I have them

[madmaria in reply to MsLockYourPosts]

I will ask to have my Thyroid checked I had a full blood count 2 years ago which showed high white blood cells but I had just got over a chest infection and it was put down to that . I then had another blood count and was anaemic and given Iron I felt better after that for a while . This time I cry at the doctor saying I felt so bad I thought I had bone cancer She bless her is new to the surgery and acted fast to get to the bottom of this in her words The blood count showed high white blood cells in the count ,so an other was done it was then that she told me I had CLL. I had other blood test 2 weeks ago too many 7 or 8 to remember but one was a FISH as the woman taking my blood had to ask a doctor what it was So then I got an apt to go to the Cancer Day unit so none the wiser till tomorrow

[buckinhard in reply to MsLockYourPosts]

I first got really sick, nausea and vomiting for 33 hrs straight. Finally had enough and went to the ER to stop the vomiting on Dec312011. It took 3 injections to stop the vomiting. My WBC count was 34,000 and responded to antibiotic and a stay in the hospital. The WBCs went down to 28,000. That's the lowest I've gotten down to. The hospitalist, a fool, told me I had Cat Scratch Fever since I asked if I could have gotten something from my multitude of animals, horses, dogs, cats and hens. I was concerned mostly from the hen's stool. This Dr ? told me I had diagnosed myself and I had Cat Scratch Fever. I told him I did not , I know what CSF feels like since I've had it 3 times in 30 years and this was not anything like CSF. Anyway, he insisted and discharged me that day. I was sick every week with vomiting and nausea till mid May. My older dr retired and my new dr was fabulous and very progressive. He ran tests for thyroid, and all sorts of nasty tests to see if I had yikes, parasites etc. I was fairly horrified at that thought and YAY ! , I was negative for any that stuff but also for all others tests to cause the vomiting. Did find out I was hypothyroid which was causing the cardiac issues, hair loss, dry skin and fatigue, but still have lingering cardiac problems from the thyroid , he also found out my WBC count was over 80,000. After finding the right combo of antibiotics, I was able to lower my WBC count to 34,000. Now, I year later my WBCs are back over 80,000. I do have some enlarged lymph nodes but they seem to settle down and don't have a big problem with them. I am tired all the time and it has affected my work with the horses etc. and do get these funky sweats, even if the temp is reasonable outside or inside. I'm wondering if others have these sweats and tiredness and is it associated with CLL. also, when has everyone else started having symptoms, what kind of symptoms and what WBC count do people have? I just found this website and wonderful forum. I haven't had anyone to talk to and don't really get good info from my oncologist and her N.P. about what to feel. They seem to poopoo my symptoms as nothing important AND not CLL related. I am going to ask my family Dr. to check my vitamin B and D.

[AussieNeil Administrator in reply to buckinhard]

Both sweats (usually at night and of the soak your bedclothes variety) and tiredness/fatigue are associated with CLL. Both can occur with much lower WBCs than you have and unfortunately the fatigue is often too quickly (and incorrectly) dismissed by doctors as unrelated to CLL. You are sensible to get your vitamin levels checked as getting those right (if low) could really help you. Increased exercise also helps some of us, but it sounds like you are getting plenty already with your physical work!

Regarding typical WBC levels for CLL, well unfortunately with CLL, very little is typical - everyone experiences it differently. With the SLL presentation, the B-lymphocyte count (excluding other WBC types) is less than 5,000 in the USA (or 5 if you are in the UK or Australia due to the different measuring units). Some people with CLL can achieve levels upwards of 400,000 before starting treatment, others need to start treatment at much lower levels. Absolute WBC levels are less important than other symptoms in determining when to treat, but rapid doubling (in less than 6 months), is very likely to trigger treatment.

I'd strongly recommend you get properly checked out by a haematologist with CLL experience as it is pretty obvious your current medical team are not treating you seriously. See this article "Does Expertise Matter" from the CLL Topics site on how doing this could add years to your life expectancy!:

updates.clltopics.org/3888-...

List of CLL doctors - hopefully you can find one close to you

acor-cll-help.wikispaces.co...

Neil

[HAIRBEAR_UK Founder Admin]

Hi madmaria welcome to the community..

Good luck with your visit tomorrow. Fatigue and aching bones are symptoms that many with CLL experience,. several have discussed this in community threads,. I have picked a few out provided by the search facility that may be helpful; (there are several more)

CLL and Fatigue cllsupport.healthunlocked.c...

Fatigue cllsupport.healthunlocked.c...

Could my fatigue be due to my CLL which is 'only' Stage A? My red cells are ok so I'm not anaemic? cllsupport.healthunlocked.c...

Well but not feeling wellness cllsupport.healthunlocked.c...

This is a link to Several UK sources of CLL patient information and experiences that are current and reliable and are helpful to help learn about CLL.. cllsupport.healthunlocked.c...

It includeds a section where CLL people share their experiences of Living with the symptoms of CLL healthtalkonline.org/Cancer....

.

I am sure others will be in touch

Nick

[Cllcanada Top Poster CURE Hero]

Have you had a sleep lab for apnea? It can be a problem in CLL and more so in SLL where nodes in the neck area enlarge restricting breathing... something to discuss with your doctors.

~chris

[madmaria]

Ok my throat does feel od so it could be that will ask for a sleep lab test and thanks for answering my question on that note time to sleep now busy appointment tomorrow

[lankisterguy Volunteer]

I have had severe fatigue both times that my CLL progressed so far that it was interfering with my red blood production. The first time (2010) we found that supplementing with Iron and D3 helped significantly, the second time (2012) my CLL expert doc found that I had HHV-6 reactivated and treated me with Valgancyclovir (Valcyte - NOT Valtrex) and reducing the HHV-6 significantly reduced my fatigue.

Len

[madmaria]

Many thanks

[kitcat49]

Hmm ! Interesting ! I too was diagnosed with FM around 1995 and CLL 1998 (but didn't find out about that til 2007.) The FM improved dramatically when the source of my stress (my alcoholic husband) passed away (A good man but a tough situation.) I did find quitting my job in 1998 also helped a lot with the fatigue and pain. I feel for you,I remember how awful I felt back then...Big hug !!