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Shellshocked201's avatar
Shellshocked201
Member
6 years ago

Lymphoedema?

Hi everyone, I’m now 3 months post Radiation therapy.
After your thoughts and experiences please.
Have had swelling, redness under my armpit ( had full auxiliary clearance in July 2019), also elbow has been sore as well.
Just to throw another thing into the pie I broke my shoulder mid September during radiation. ( Glenoid fracture). So I’m still getting aches from my shoulder which has referred pain across to my neck and chest.

My question is what sort of pain have you experienced with Lymphoedema in your arm, wanting to know what is normal and what isn’t? If there is a so called normal?
Trying to figure out what is from my shoulder and what is Lymphoedema.

I’m having lymphatic massages every 3 weeks, doing exercises, and swimming. Keeping as active as I can.

Thank you in advance.
Sending hugs xx
lymphoedema
radiation
side-effects
  • Kristen's avatar
    Kristen
    Member
    6 years ago
    Great you got some answers about why your shoulder is sore. Thats always such a relief  to understand and a step forward.Sounds like your being very diligent and great your sharing  as it will encourage others to be proactive.Hope you continue to heal and heal well.Best wishes.
  • Shellshocked201's avatar
    Shellshocked201
    Member
    6 years ago
    Thanks everyone , Had CT Scans, my broken shoulder hasn’t healed properly, so back of to Orthopedic surgeon to see what next.

    During CT scan they noticed a patch under left armpit ( surgery side) , I’ve seen my breast surgeon, had ultrasound. Everything is good just scar tissue, I have felt some cording , asked surgeon to check and she confirmed.

    Next step off to see a Physio for cording.
    Regular visits to lymphatic massage therapist, wear compression sleeve.
    Self help: Hydrotherapy x3 times a week, dry brushing before showering, exercises for arm, and regular lymphatic massages, Tai Chi, meditation.
    Im finding the best treatment is getting in the water and doing exercises is keeping the swelling at bay. 

    You’re right Kristen , don’t wait for the problem to arrive, its all about preventing the issue if possible. I ask a lot of questions to people I know that have had BC and Lymphoedema, I belong to a support group with a wealth of information.
    Its amazing on what you stumble on sometimes and yes you’re correct not many GPs understand , fortunately I have a great GP , who isn’t ashamed to say that she doesn’t know and that’s not her area of expertise and will point me in the right direction to get answers.

    Its about keep asking until you get a result.

    Onwards and Upwards.
    Be kind to yourselves.
    xx

  • Kristen's avatar
    Kristen
    Member
    6 years ago
    recommend seeing a lymphoedeam therapist and getting a sozo score if you can. Its a Baseline , then they can see if it changes. Or arm measurements. LO /lymphoedmea and shoulder very intertwined. BCNA have great pilates online resources to help get shoulder moving- this will also help with lymp flow.Even if you don't have it yet, officially, it good to help lymp fluid  flow by movement  and learn new pathways before it becomes a problem. early intervention is the key to it not becoming a problem.
    stiff shoulder or neck = more swollen arm for me
    aches, swollen,pain if you don't address it, can lead to bigger problems further down the track 
    solid tissue that can not be reversed,life threatening infections.

    learn, get advice, action on it, don't be scared, be prepared.
    early intervention can dramatically slow the progress of the condition 

    masectomy.rad.chemo,axillary dissection.
    had it for several years .

    Most GP don't know much about it at all.Nor do many physios or massage therapists. You have to really hunt down people who understand injury to the lymphatic system.
    What i do every day has more inpact then monthly massages in maitianing my arm
    tai chi, encore exercises, foam roller stretches,compression garments , massage ball, dry skin brushing,self massage and lymphatic drainage in neck,groin armpits, deep breathing .....
  • cranky_granny's avatar
    cranky_granny
    Member
    6 years ago
    Hi @Shellshocked2018_ I didn’t know at the time that my shoulder pain was from cording I had put it all down to the lymphoedema. Both are now as good as they are going to get when the lymphoedema  acts up I increase  the exercises and massage I was shown by physio. 
    Bummer is none of my rings fit. When I strike it rich I’ll have them resized. I found getting too hot was the worst for the swelling or over use. 
    Good luck with shoulder scan hope it’s nothing serious 

  • Afraser's avatar
    Afraser
    Member
    6 years ago
    When I realised I had lymphoedema I had no pain or discomfort at all. Nor any swelling or redness. I just realised  that my watch strap was very tight. I have had it now for over six years and very rarely get discomfort - occasionally a bit of tightness. However a good lymphoedema specialist would be able to confirm whether you have it or not. As you are having massages, I assume the therapist is not seeing anything amiss. Perhaps best to consult with your GP? Best wishes.