Arm pain, leg pain, wrist pain, achy ribs, night sweats....( Last bloods were in July and they were super), what's going on?

[Ange324]

Good morning. I'm wondering if my aches (big time pain actually) are Cll related, if my last bloods were absolutely 'normal'. Sorry to start with squeamish(for some) topics, but have any ladies had these pains and discovered they were menopause related (I'm 50) and not cll? Thank you

[AnneHill]

Hi, I have had those type of pains since starting Ibrutinib. Today it is my right arm. My elbow is painful and the pain comes down my arm. My wrist and top of my hand are painful and I have to be careful when trying to pick up a drink. When I first started this med I had pain in my legs and knees and my hands were like claws which the doc said was gout. I couldnt drive.

As time has gone on I am not like it all the time. It is in different places and not all at once. It will go in a couple of days. My bloods are back to normal and I dont want to stop this med.

I am glad I dont work because at times I cant walk without pain or drive.

I hope you improve, Anne uk

[Ange324 in reply to AnneHill]

Thanks for the message, Anne. I'm on w&w.... Interesting about the gout? I'll Google it! I don't think i have anything wrong with me beginning with a G as yet, so it's always nice to fill in an alphabet gap!

I'll probably have to bother the Gp next week I reckon. Pain is a little excessive!

[AnneHill in reply to Ange324]

Treatment produces uric acid which causes gout. It can be prevented with meds but they probably didnt expect me to need it. I hope you get it sorted, Anne xx

[Ange324 in reply to AnneHill]

Thank you Anne.

[retired46 in reply to AnneHill]

Hiya,

I’m with you on that as the same, on Ibrutinib for 18 months and random pain that travels, hand, elbow, foot, back, leg, shoulder - sometimes quite bad in shoulder. Happy to stay on it though as otherwise ok.

Or is it just old age creeping up for me 😂😂 husband has similar but not on Ibrutinib and doesnt have CLL. Oh well roll on summer.

Stay safe Anne .

Im in the UK too.

[Temida in reply to AnneHill]

Anne, I have the same on Ibrutinib. Some days I spend in the bed as I can’t bear my weight. But today I’m better so will do some activities

Is there anything that helps with your pain? For me even codein does not work but makes me drowsy and constipated. I have impression that pain disappears by itself

Regards and keep well.

Temida

[AnneHill in reply to Temida]

Temida, When I first started having pain it was worse in my legs and it was suggested on here that Biofreeze might help. I buy the roll on but there are sprays as well. It does help with painful joints. I get swollen joints at times which I have never had before.

Like you I find it goes on its own and I get a break before it comes somewhere else. I have back problems and some osteoarthritis and take tramadol. It takes the edge off but at times I wouldnt feel safe driving. Paracetamol helps a bit. I think it is stronger than I used to think.

Like you I wont stop taking the ibrutinib, We have to hope it continues to work and the side effects improve. Today my arm and elbow are better than yesterday and they will be better still tomorrow. Anne uk

[studebaker in reply to AnneHill]

There were some posts of people suggesting Claritin helping with bone pain when people taking Ibrutinin treatment.

Dana

[AnneHill in reply to studebaker]

I will look at that. It would be great if it worked. Thankyou, Anne uk

[GMa27]

Not everything is CLL related.

I have had none of those symptoms during menopause. I have had hot flashes since 42. I am 65 now. I am one of the "lucky" ones to have it rest of my life. Not related to CLL. I go to acupuncture and take homeopathic remedy to keep it under control.

Definitely see your GP to make sure it isn't anything else. 💕

[MsLockYourPosts Passed Volunteer]

Ange - Please check in with your doctor. It is not worth ignoring things when our bodies are sending us messages. Hopefully your symptoms are just a passing thing and your doctor can reassure you that nothing serious is going on, but if there is something going on that needs attention, best to catch it early. Keep us posted.

[Fran57]

Hello. I’m afraid I don’t have any answers, but I do want to thank you for giving me a laugh ( not happening often enough at the moment) when you said you didn’t have anything wrong with you beginning with G!

Stay safe,

Fran 😉

[blowinginthewind]

They are all symptoms of menopause. But I didnt have them because I had had a surgery in my 40s. However, I am now 63, andI have some night sweats - perhaps once or twice a week - and I ache a lot. My bloods are ok too.

[SofiaDeo]

Even when I was in remission for almost 5 years, I still had mild symptoms. The bone pain & night sweats weren't as severe as when my disease was active, but I still had them.