Fatigue and Lethargy

[smithyboy]

What a joy to listen to someone so on top of his game, thank you Adrian and indeed Prof. Hillman. I have one question. Prof. Hillman confirmed that fatigue, tiredness, lethargy etc was probably the most prevalent symptom with his patients. I have suffered with this worsening ailment along with 'sweats' for 10 years since diagnosis at age 65. My 'bloods' still do not dictate treatment according to the Royal Berks Haematology team. My question is does the fatigue and lethargy reduce nay disappear even after treatment?

[JigFettler Volunteer]

Hi!

If fatigue is CLL related - treatment will reduce it or remove it.

It is essential to exclude NON CLL causes. Work for your Family Doc! If your CLL blood numbers dont amount to anything worrying - it maybe prudent to ask about this.

Do remember also loss of fitness due to CLL and fatigue. Fitness needs to be "trained" back after treatment, while treatment may stop fatigue it will not replace cardiovascular fitness and muscular strength. That takes physical activity.

The B symptoms of CLL should be taken into consideration when assessing treatment need. Treatment decisions could well be supported by a 2nd opinion, something that in the UK is very straight forward. (Outside of Covid!)

I suffered fatigue, muscle ache and night sweats. This stopped abruptly and totally with FCR. Regaining fitness has taken longer. I also had a 2nd opinion.

CLL is a very varied condition, and so it is not very helpful to compare one case against another.

Best wishes as you go along. We all here share the same concerns and there are very many testimonies that I hope you will find supportive.

Jig

[Tpdnotts in reply to JigFettler]

My husband's CLL was 'discovered' 5 years ago through a blood test after he went to our GP with extreme tiredness. He is on W&W and this had been his only symptom which he felt impaired his enjoyment of life. He is 54. About 2 years ago I suggested he try my Vitamin D high strength supplement. (He has never taken any supplement!) After about a month his lethargy more or less disappeared and his energy levels returned to almost what they had been. He can now garden and dig for hours and only feel tired at the end of the day rather than an hour into his gardening. My husband is not one for high praise but he feels certain his return to feeling 'his old self' is down to the Vitamin D. Worth a try?

[AussieNeil Partner Administrator in reply to Tpdnotts]

Getting my vitamin D back into the normal range coincided with my ability to exercise without wiping myself out for a few days afterwards. Coincidence or cause?

[Lellyandme in reply to AussieNeil]

I nigh on depleted my Vit D some years ago and my consultant asked me how on earth I was actually managing to function at all.... after an intensive three month course of Vit D I was so much better. Low levels of Vit D is a constant with me now so I get checked regularly and if needed resume with the supplement.

I have educated the people around me to detect signs early - mild depression, lethargy and listlessness, brain fog, cognitive issues etc... I don’t always realise I’m slipping myself until I’m too far in.

I am of the mind that the issues with Vit D depleting is the body constantly fighting infection and less to do with the outdoor lifestyle and a healthy diet ( of which I do have in addition to the supplement), those alone are not enough when living with my CLL and Chronic Urticaria.

I don’t say I’m fixed from the side affects of CLL but Vit D supplements are so very important to me, I could not live without them.. ❤️🌈x

[JigFettler Volunteer in reply to Tpdnotts]

Hmmmm...

My VitD was always in normal range. I cant see there is a link. Can you AussieNeil ?

Jig

[AussieNeil Partner Administrator in reply to JigFettler]

Well there is this small study: ncbi.nlm.nih.gov/pmc/articl...

Conclusion:

The prevalence of low vitamin D is high in patients who present with fatigue and stable chronic medical conditions, if any. Normalization of vitamin D levels with ergocalciferol therapy significantly improves the severity of their fatigue symptoms.

[Tpdnotts in reply to JigFettler]

I think 'normal' range differs from country to country. I believe that NHS recommendations for VitD levels are lower than the USA for example, but please correct me if I am wrong (!)

[JigFettler Volunteer in reply to Tpdnotts]

I dont know - also I am unsure if the assays used are comparable. Its likely that that raw numbers from different assay methods cannot be compared. It is likely that the VitD needs will be the same for UK and US folk. It is likely that VitD is not routinely checked in the UK - I had to ask for mine to be done. My medical advisers were uninterested in the result.

IF indeed it is a factor in CLL medicated fatigue I am surprised its not more widely discussed. I will search. Do share too - if you know more.

There is a ton of discussion on this forum, indeed AussieNeil was talking about 7yrs ago here on the Forum! I guess I have time at the moment to check it out.

Meanwhile be safe.

Jig

[bennevisplace in reply to JigFettler]

I'll be interested to see what you come up with Jig, and what other folk think.

More than 10 years ago a nutritionist advised me to take vit D3 + K2 supplements in combination, and I have done so ever since. Among public health issues, especially in temperate countries, this seems to be terribly underrated, and the consequence is a huge number of people whose physical and mental health is below par and could easily be improved. IMO serum D level should be added to our FBC assays, and routinely tested in every group of people who might need D supplementation - e.g. the elderly, anyone largely confined to an indoor existence (care homes, prisons) - and should be promoted by GPs rather than carried out grudgingly on request.

I guess the Chief Medical Officer has other concerns just now.

[JigFettler Volunteer in reply to bennevisplace]

Yeh! VitD has also crept into Covid related news... Jig

[smithyboy in reply to JigFettler]

Thanks all for input. I have gone the route of second opinion with an eminent Haematologist and indeed GP resulted in slightly underperforming Thyroid but not that significant. Interestingly no-one has talked about Vit D and to my knowledge my levels have never been tested, I would be surprised if I was low because I do have an outdoor life! The whole fatigue issue is so often trivialised by the medical profession - look at the ME story. I am going to try a course of Vitamin D.

[JigFettler Volunteer in reply to smithyboy]

great - keep in touch, as I too will dig a bit.

I think you are UK based - are you not?

I am!

Jig

[smithyboy in reply to JigFettler]

The Royal Berkshire Haematologists (and the way I spell that) is a bit of a give away to my location - and haven't moved for three months!!!!! - but spent the most of that in the garden!

[JigFettler Volunteer in reply to smithyboy]

It does, I did clock that!

I too have been rooted in my garden, for which I am more grateful than I can say.

After this rain - likely a lot more time yet to be spent. LOL

Jig

[Tpdnotts in reply to smithyboy]

When we went to a CLL conference and the specialist speaker was asked whether any supplements could potentially be of benefit, the only one the specialist suggested was Vitamin D, probably for all the population, not just CLLers!

[bennevisplace in reply to smithyboy]

Dosage is the question. Until you can get a test.

You have to take a lot of D to overdose, but if you spend plenty of time in the sun you shouldn't need much anyway. I've been taking 4,000 IU on 3 days a week, together with 1,250 micrograms K2 complex. This is about right for me, according to my last few D level tests albeit not done for 18 months. I generally spend an hour or two a day outdoors.

Best of luck.