Having similar problems but no diagnosis

I am new here but have been reading your questions etc I have Swelling in ankles legs travelling up to thighs and noticed it in hands too.I,m hoping that someone can please help me as i have not been diagnosed as yet ...I have had ct scans with imaging to see if its my lymphatic system but all came back fine I am getting pain and heaviness in my legs especially left side stinging and pain in ankle joints cramp in toes and fingers but have been told by my cancer doctor to go to gp to see if its to do with my medication I have been before when the swelling first started as i felt liquid litterally running down my leg under the skin from my hip He told me to elevate my legs Its just not working Can anyone tell me what to do as i have had enough now and want it sorted I do get pitting in my feet and ankles but my legs from calf upwards are so solid i cannot even press the flesh in Sometimes i feel as though they are going to burst

5 Replies

  • What form of cancer treatment have you had? How recent?

  • I had a paradectomy and had radiotherapy but that was 5years ago I have non hodgkiss lymphoma but in remission

  • Any kind of cancer treatment can damage the lymphatics. A CT scan may not give a definitive outcome - a lymphscintigraphy may be more accurate. You could also ask for a referral to a local lymphoedema service, who will be able to advise you about the lower leg swelling.

  • Have a look at the LSN website lymphoedema.org as they have good leaflets that you could take to your GP to support your request for referral to lymphoedema services. Your symptoms sound so like lymhoedema but only a trained lymphie nurse or physio will properly diagnose and treat.

  • Ask you GP/oncologist whether they have explored the possibility of lymphoedema/ lipoedema (awareness is not as widespread as you might imagine). lymphscintigraphy is a much more appropriate diagnostic tool.

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