Does anyone else have pain with secondary lymphoedema?

[TeresaMay]

I have pain in the area of my leg affected by the lymphoedema, sometimes severe. I had thought it was connected but have recently been told by the GP that the clinic does not believe it is connected. I have slight arthritis in that knee, but am loathe to believe the condition of my knee is creating pain in my ankle and lower leg.

[CCT67]

Where around your knee is the pain? Do you have more swelling in the back and sides of your knee when it hurts? If you have pain around the knee cap then it’s less likely LE caused. however if the pain is around back and sides of your knee it might be linked to lymph getting blocked/congested by faulty popliteal nodes in the back of the knees . I get terrible throbbing for this reason all around the inner knee and back of my knees.

Try periodically elevating your leg throughout the day for relief and lymph drainage if not already doing it. Are you wearing compression? If you are wearing knee high compression try full leg to see if that helps alleviate the problem

[TeresaMay in reply to CCT67]

My pain around my knee is only after a sudden movement.

If I walk carefully the knee does not hurt. I wear compression stockings and elevate my leg whenever sitting down.

[bobives]

i have had secondary lymphodeama in both legs for 20 years,i also have spinal problem which stops me from walking more than a few steps. i suffer excruciating pain in both leds, all over my legsm from the upper thigh all the way down to the bottom of my feet. i do not know what is causing the pain is it the spine or the lymphodeama. all i know there does not seem to be any treatment for either. sometimes the pain is so bad i cannot get out of bed. i take cocodomol 30/500 and naproxen so i am also unable to toilet properly and i am always tired. i sleep only 2 hours at a time.

[Hidden]

My secondary LE is painful but probably not as badly as yours.

I’m under the care of St George’s. The team do not understand why my arm is so painful.

I have Lipoedema too so all my limbs hurt but my Lipo Lymphoedma arm is much worse.

[Moomin64]

I have Lipoedema, secondary lymphoedema, and osteo-arthritis. I get pain from all three.