Joint pain: I am suffering with terrible... - CLL Support

CLL Support

23,335 members40,042 posts

Joint pain

dandelup profile image
24 Replies

I am suffering with terrible throbbing pains in both my knees and muscle pains in my thighs, I am wondering if any other cll sufferers have experienced such symptoms?

Written by
dandelup profile image
dandelup
To view profiles and participate in discussions please or .
24 Replies
Emerfly profile image
Emerfly

Hi dandelup yes indeed I also have joint pain and get the most terrible leg cramps . My CLL specialist has referred me to a rheumatologist, my appt is in July. He says one cannot assume that all symptoms are CLL related and wants to rule out any other disorder. Have you discussed your symptoms with your specialist ?

dandelup profile image
dandelup in reply toEmerfly

Thank you for your reply, I am not sure if these are cll symptoms or related to another issue it’s so easy to blame everything on cll but also worrying that you may have other issues to deal with.

CattieAnne profile image
CattieAnne in reply todandelup

Dandelup, are you on Imbruvic? Reason why im asking... i have been getting joint pain in my ankles, wrists and nuckles. At first that it might be gout... onco doc checked... nope.

Come to find out this is a side effect of Ibruvica...

Wish you best hope you find some relief, as u know joint pain can be very limiting.

Take care

dandelup profile image
dandelup in reply toCattieAnne

I am on tablets for gout but nothing as yet for my cll starting on a clinical trial in July

120940 profile image
120940 in reply todandelup

G ood luck. My husband has cll/sll and is doing well with ublituximab in his trial. It’s a monoclonal antibody that helps the immune system fight the cancer.

dandelup profile image
dandelup in reply toCattieAnne

I am on tablets for gout but nothing as yet for my cll starting on a clinical trial in July

I don't have joint pain but every 3 months when I see my Hematologist it is always one of the questions she asks me...if I am having any joint pain.

Scott

Tommays56 profile image
Tommays56

Yes i will see the rheumatologist on Tuesday for the testing done for polyarthralgia another big word for pain in 5 or more joints

While i don't like to blame everything on CLL considering i could hike 50 miles in a day 14 months ago and there is not anything that has not been tested things our pointing to one the one thing that consistently comes back bad

The 5 other specialists i have gone to find nothing wrong there is a pretty good possibility but i will have some facts Tuesday

Psmithuk profile image
Psmithuk in reply toTommays56

This may not apply to you, but I have had a lot of pain which has reduced somewhat since my statin dose was reduced.

Cmac70 profile image
Cmac70

Hi there, i get them ocassionally, but recently i have had the pain for over a week also my neck too, i can feel swollen lymph nodes in my groin on both side, so i assume they may be pressing on a nerve since there is alot of nerves in the groin area

Chris

cllady01 profile image
cllady01Former Volunteer

This site might help you to see if you need to consult your PC for possible further investigate gout--and--find the source of your seemingly sudden onset of joint involvement. Best wishes for finding the source and getting some relief.

Signs Your Chronic Gout Is Getting Worse - WebMD

webmd.com/arthritis/gout-se...

Nov 10, 2017 ... When gout gets worse, it can affect other joints, including the ankle and ... Kidney problems linked with gout -- and signs that gout is getting ...

JigFettler profile image
JigFettlerVolunteer

Hi! I got a lot of muscle ache in the year to starting FCR. Nights worse. Restless. Poor sleep. Always better after moving around. Wondered what was cause etc.

Since FCR 19 days ago... all gone. I can sleep now.

It's the CLL. Probably cytokine mediated. Unsure if this has been researched. It seems to affect the QOL for many on WnW.

CAGIULIANO profile image
CAGIULIANO

Unfortunately ,yes, doctor said it would improve after treatment is finished and prescribed Tylenol

not much help ,sorry

SMS-not-cll profile image
SMS-not-cll

Hello, dandelup,

Yes to lots of joint pain, especially late afternoon through evening. I also have RA diagnosis with stage 0 CLL. Interesting, I just had my first appointment with a CLL specialist at Johns Hopkins and asked him about my late-day joint pain which can be in multiple joints. The pain is not from an RA flare but just a constant aching.

His answer was that joint pain can happen because of the inflammation all over my body from CLL. And, my RA and erythromelalgia are autoimmune diseases caused by CLL inflammation. So, being diagnosed as stage 0 does not mean I am symptom free.

Hope this information helps.

Wishing good days and good health to all.

SMS

Lola69 profile image
Lola69

I suffer from all kinds of aches and pains. Knees feet hip. I also have Hashimoto thyroïdites so that’s a factor.

dandelup profile image
dandelup

Very helpful thank you and good luck for the future

Hazel33 profile image
Hazel33

I keep getting cramps in my legs and now have ache in the groin and attacks of cramps from the groin to the knee. My gp said it was muscle pain but I think it could be pressure on a nerve in the groin. Any ideas? Hazel

dandelup profile image
dandelup in reply toHazel33

Hi Hazel, my feelings are this if your blood is infected and your bone marrow infected then in turn this must have some effect on your muscles that the blood flows through And the joints that your marrow is part of, now I’m no medical expert but it just seems common sense to me.But I am willing to be shot down in flames by those that have the knowledge. Hope you get some relief from your aches and pains

Hazel33 profile image
Hazel33

Thanks dandelion, I think you are right. I have been told to take painkillers and tonic water which contains quinine. On reading the posts it seems that you need to drink a few bottles to get any effect, and some say don’t take it anyway. I have mentioned it when going for CLL check ups. but it has been ignored. Hazel

dandelup profile image
dandelup in reply toHazel33

I remember as a child a doctor friend of the family told us about a patient that drunk so much tonic water the quinine in it affected their eyesight, but don’t know how much was too much, don’t know about you I have so many symptoms at the moment I don’t need anything else to worry about.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply todandelup

Quinine use has been greatly curtailed recently due to the relatively high risk of serious side effects, even with a low dose. Some doctors (including Prof. Terry Hamblin, who discovered the importance of IHVH mutation status in CLL), consider it still worth trying to prevent cramps.

mebs66 profile image
mebs66

I suffer with exactly what you describe! Do you also find that you get stiff after sitting? I had these symptoms pre-treatment but, their onset correlates with my cll. I had fcr which exacerbated the issue and now use tramadol, pregabalin and amitriptyline to manage the pain. It seems to be getting worse again, so I'll ask my doc whether I can see a rheumatologist. It's so frustrating. I'm in remission from the cll but I'm moving like a 90 year old at times! Also, the chronic pain is really tiring. Let me know if you make a breakthrough and good luck to you 😀👍

dandelup profile image
dandelup in reply tomebs66

Yes I do get stiff after sitting I do try and keep as mobile as possible the weird thing is there is no pattern to it one day it’s bad then I can go a week without any problems, I start my treatment very soon just hope that doesn’t make it worse

mebs66 profile image
mebs66 in reply todandelup

Thanks for your reply and all the best with your treatment! My pain comes and goes too. I'm interested in how old you are - I was 46 at diagnosis, so quite young for cll

Not what you're looking for?

You may also like...

Joint pain CLL

Hi folks, Am progressing to treatment end of 2019 /20 on watch and wait. Recently I have been...
Roseneath69 profile image

Ibrutinib - Joint Pain

I have had CLL for 20 years and have been on Ibrutinib for 3 years. In recent months I have been...
RobertCLL profile image

Joint Pain

I was on Imbruvica for 6 months and started having joint pain. My Dr switched me to Calquence to...
Wahoowa profile image

Ibrutinib and joint pain

I have been on Ibrutinib to treat my CLL for six weeks now. I am also on 100 mg of Allopurinol to...
Mike-72 profile image

CLL - Joint pain, loss of range of motion

Hi I’m 54, 3 years with CLL, 2 years on Acalabrutinib, suffering badly from fatigue and aching...

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.