Connect
← Return to CLL diagnosis now having soft tissue pain
Discussion
CLL diagnosis now having soft tissue pain
Blood Cancers & Disorders | Last Active: Nov 22, 2023 | Replies (8)Comment receiving replies
Hi,
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.
Replies to "Hi, Thank you for your response. My Haematology department have never seen these symptoms before! The..."
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.
Connect
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.