Pain

jan61

hi all from Australia! I was diagnosed in 2018 with bilateral invasive hormone+ bc. Had a bilateral mastectomy followed up by a clearence of the left arm. Consequentially I have developed lymphoedema in that arm. I don’t think it’s all that severe but I can see and feel it’s swollen and I wear a sleeve and mit during the day and a heavier night sleeve as prescribed. i am also taking anastrozole with all its various side effects.

I have developed pain in my arm.. seriously debilitating pain. Between my elbow and shoulder. It’s worse when I lay down but pretty bad 24/7. The gp is blaming the lymphoedema but I’m not sure. I can’t find any info on pain… just the general discomfort I was experiencing before the pain.

Does this sound like anyones experience?

ThreeTree

Hi jan61 - I hardly have a definitive answer for you, but I can say that I do get some bad aching in my lymphedema arm (left) from time to time, even when wearing a sleeve. It is focused in the area right below my elbow (where fluid seems to concentrate), and in that area you mentioned between elbow and shoulder. It comes and goes, and I just chalk it up to my "new life" since cancer, but I don't think mine has been as painful as what you describe.

Wish I could help more; best of luck in sorting it all out. Hopefully, others will know more.

jan61

Thanks. I’m so unsure of what is right or wrong. Is there a way to know how it’s supposed to feel? It feels more like bone pain to me

ThreeTree

You're welcome. You know, you also said that you are taking anastrozole and have side effects from that. I take letrozole and get all sorts of muscle, joint, and bone pain from it. Sometimes, I've been pretty convinced that the pain I feel in my upper arm is actually because my shoulder joints are sore, either from letrozole or some stretching exercises that I do for OT. I think the ache I get just below my elbow is lymphedema, but the pain between my shoulder and elbow, I think is the AI. Just some more thoughts.

Rah2464

Jan61 I have some more concentrated swelling on my upper arm from the lymphedema and my pain goes from low level aching to pretty intense episodes where I have to break down and take some pain medication. Along with the garments do you practice self massage to clear and move the lymph or do you have access to a certified therapist? What I think I have determined is that my pain increases intensely when I am dealing with a flare up. Otherwise daily pain is more like a low level toothache.

jan61

thanks rah. Yes I do self massage. My upper arm isn’t as swollen as my lower arm and hand. The pain is now a constant throbbing that disturbs sleep. I will try and contact oncology today.

MinusTwo

Rah - yes I do self massage. But yes, I had access to a certified/trained LEPT for 5 years. It's been 3 years since I've seen one so I put the wheels in motion for a re-evaluation & measurement and to discuss what I may be doing right or wrong and any new developments in the field. Appointment January 3rd.