Arm Lymphedema

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marle
marle Member Posts: 12
edited June 2014 in Lymphedema

Hi everyone hope  you all doing well!I am now on Tamoxifen for 17 months everyday a different side effect but i cope ok.My lymphedema also comes and goes i try to manage it with exercise and it helps! 3 days ago they take my bp on my arm wile doing that arm start to burn,yesterday my upper arm start to pain (burning pain ) This morning my arm wake me up!Oh my it was feeling dead like if i had slept on it, so i massage and it gets beter with a lot of burning pain,from the back of my  shoulder down to my hand and in my chest.The Axillary also feels like swelling!This is a wake up call for me no more bp on both of my arms.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2011

    Marle, good morning! I'm really sorry about the new pain and swelling. Do you have a well-trained lymphedema therapist? If so, be sure to see her about these new issues. If not, here's how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
    You need a referral from any member of your medical team.

    Getting help with lymphedema when it's still in an early stage makes it easier to manage over the long term. Keep your arm elevated as much as possible and drink lots of water (it helps dilute the lymph fluid and keep it moving).

    Be well!
    Binney

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  • BrilandGirl
    BrilandGirl Member Posts: 49
    edited August 2011

    Marle:  Please listen to Binney--wish I had been more vigiliant in the beginning.  I did not use a qualified lymphedema specialist from the start.  My local RO and MO weren't all that concerned with my early stage lymphedema (kept saying they had seen much worse) and said I could choose to go for physical therapy and gave me a referral.  The practice assigned me to a very nice physical therapist but she was not trained in lymphedema so I didn't notice much difference. 

    I went to see my MO in NYC at Mt. Sinai who felt my arms (without all the awkward measurements from the nurse) and immediately recommended a lymphedema specialist (Cynthia Schechter at Madison Avenue Physical Therapy and Wellness in NYC)--what a difference in professionalism and treatment!   He said the earlier I get treatment, the better.  Now I start with a pumping machine, drainage massage, compression bandage wrapping and some strengthening exercises--have had about 10 visits so far and will continue for as long as I can (insurance gave me 8 sesssions to start with--and will keep asking for more until I hit my max of 30 visits). 

     Lymphedema is a chronic condition so the earlier you get the right help, the better you can manage it so please try to get to the right specialist ASAP--Good luck and thank you Binney!

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  • inspiewriter
    inspiewriter Member Posts: 876
    edited August 2011

    Kim and Binney are right!  Sorry you are going through this.

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