Joint pain

[dandelup]

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?

[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 in reply to Emerfly]

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 in reply to dandelup]

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 in reply to CattieAnne]

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

[120940 in reply to dandelup]

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 in reply to CattieAnne]

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

[Hidden]

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]

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 in reply to Tommays56]

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]

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 Former 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 Volunteer]

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]

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

not much help ,sorry

[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]

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

[dandelup]

Very helpful thank you and good luck for the future

[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 in reply to Hazel33]

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]

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 in reply to Hazel33]

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 Administrator in reply to dandelup]

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]

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 in reply to mebs66]

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 in reply to dandelup]

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