Connect
CLL diagnosis now having soft tissue pain
I was diagnosed in 2019 with CLL, and was asymptomatic until December 2022 when my lymph nodes started to increase in size.
Since July 2023 I have had increasing soft tissue pain in fingers, hands, shoulders. I also have pain and swelling in ankles, shin and knees.
Both haematology and rheumatology have carried out extensive blood tests and I have also had PET / MRI scans / X-Ray / Ultrasound which ruled out rheumatoid arthritis. Both departments are saying the diagnosis must be from other department! Neither have seen these symptoms before.
Has anyone else experienced these types of symptoms before with a diagnosis of CLL?
Any ideas from the USA are most welcome, as I have drawn a blank in the UK
Many thanks
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
I have had CLL since 1996 and will be following the post with interest. I have pain & tenderness in my shins, but never associated it with my CLL. I can hardly stand getting a massage on my legs and have asked every medical practitioner, but no one seems to have an answer.
-
Like -
Helpful -
Hug
3 ReactionsI have had CLL for a year and I have joint pain in my hands, elbows, knees and feet. My oncologist said it’s part of CLL, the gift that keeps on giving.
-
Like -
Helpful -
Hug
4 ReactionsI was diagnosed with CLL two years ago. Although I have remained in watch and wait status, I was recently diagnosed with inflammatory arthritis with all of my joints having pain at once. The reumatologist did not connect it with the CLL, but now I am wondering... I was treated with cortisone.
-
Like -
Helpful -
Hug
3 ReactionsHi,
Thank you for your response. My Haematology department have never seen these symptoms before! The soft tissue pain is bizarre, its constant in certain areas then moves...
The UK has a much smaller pool of case studies of which the sharing of 'data' is not prolific which doesn't help. I'm thinking of engaging with the Mayo clinic to see if they can help provide some answers. Thank you again for your response.
Hi benkeane,
I was diagnosed with CLL in 2017. I’m at stage 0 and doing wait and watch. I also have psoriatic arthritis which can cause pain and swelling in all the places you mention. It differs from RA in that the pain and swelling can migrate from one part of the body to another. With PsA you can also have enthesitis, which is inflammation where tendons and ligaments attach to the bone. Prior to treatment, I had some painful flares that would come “out of the blue”, then subside within a week or so. You can have PsA without the appearance of psoriasis, and there are no definitive tests for PsA, making the diagnosis difficult. My rheumatologist was able to make a diagnosis because I did have some plaques on my skin, and later developed dactylitis of two toes (sausage toes). I also have bouts of fatigue which can be a symptom of both CLL and PsA—a double whammy!
I do hope you find the answer and relief from your pain.
-
Like -
Helpful -
Hug
2 ReactionsThank you so much for your message. I will follow this up with rheumatoidolgy. I have them stumped at the moment...
Kind regards
Ben, if you would like to consult with Mayo Clinic experts for a second opinion, you can get started here: http://mayocl.in/1mtmR63
Be sure to scroll to the bottom of the page to see the link to Mayo Clinic Healthcare UK, located in London. That may be an option for you.
@madeleinem, CLL can sometimes trigger joint or bone pain. Have you had a chance to talk to your oncologist about the joint pain you're experiencing? Does your rheumatologist know that you have CLL?