Joint pain CLL

[Roseneath69]

Hi folks,

Am progressing to treatment end of 2019 /20 on watch and wait. Recently I have been experiencing joint pain knees, hips, feet, toes and my back at points. I am very active work , swim, yoga , walking my dog walk a lot in my job (school). Does this get worse leading to treatment and will I have it afterwards always. Treatment chemo. Any tips on remedies to relieve it please. I do rest when it kicks in.

Many thanks

Lou

[GMa27]

Sometimes those symptoms go away with treatment. In the meantime, try Magnesium Glycinate 400 twice a day. Also believe it or not, put a small bar of soap, usually Ivory under the fitted sheet down by ur feet and the pain/ cramps go away. I only get some cramping pain the last hour I sleep. I put the soap there 2 weeks ago and it worked! 💕

[Roseneath69 in reply to GMa27]

Many thanks my friend I will look at this , the cramps are always before bed X

[Smakwater]

Loubs69,

I am 59, no comorbidities, relatively healthy and active, unmutated/CD38/CD20. Treated with Gazyva October 2018 - April 2019, and Venetoclax December 2019 - present.

Moderate joint pain and connective tissue progressed from time of diagnosis 2015 to time of treatment 2018 being severe and debilitating

After the first month of Gazyva, my connective tissue and joint paint was reduced to mild. From about February to present I have occasional aggravations that I would rate moderate to above moderate.

I believe that the aches at this time are more related to age, activity, hydration, or other underlying influences than from the treatment.

My offer of consideration to you would be to stay as physically active as possible combined with a balanced diet, proper hydration. Establish a base line measure with some good blood labs for future reference that include Igg, Iga, Igm, Thyroid levels T3 and T4, creatinine levels.

Keep the diuretics at minimum, e.g, coffee, alcohol, tea. And do not over supplement, as studies show they are not as beneficial as one might think.

ncbi.nlm.nih.gov/pmc/articl...

Most importantly, partner with a CLL specialist who will work with you. Communicate your intensions to your doctor before you experiment, and test the credibility of the information you observe.

Have good go.

JM

[Roseneath69 in reply to Smakwater]

Thanks so much for the advice. I will keep active as you have said to, though that is my mind set tbh I’m not one to sit for long and I think that’s half my problem. I’m coming to the end of a very long school term and working full time within a secondary school we are all feeling pretty tired. We break up for summer this coming Friday so that should help. It can get me down the joints hurting at times but I try not to let it and just get on.

I see my GP next week so I’ll double check with him to see what he advises and make some of the suggestions.

Many thanks again

Lou

[Smakwater in reply to Roseneath69]

You can nail this!

[Big_Dee in reply to Smakwater]

Great reply JM.