Lymphodema
Hi there groovy gals......
Just wanted to share an experience and ask a question....
I recently came back from an amazing holiday in New Zealand! We attended and participated in the Wellington Dragonboat Festival, where we won a bronze medal! That was the good bit.
On returning to Australia however, I became very sore and swollen around the ribs, chest, back and armpit. The pain was so bad at one stage, I couldn't get up after lying down. I thought I was going crazy-lymphodema occurs in the arm I told myself.
I looked up some information online which mentioned truncal Lymphodema (which I had never heard of)..especially after Sentinal node procedure which I had (6 years ago!). I think airplane travel, and Hot springs I attended may have aggravated it. Just wondering if anyone else has experienced this or has advice for managing it. I am currently having some drainage massage which has helped a lot.
Thanks for any info you may have...
xx
Comments
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It is so important to wear compression sleeves, etc on long plane/car trips and I have found also when doing anything strenuous. There seems to be no rhymn or reason with lymphodema - just have to find the happy medium. I have lost so much strength in my arms. I asked the Physio today if I will ever be able to build up my arm muscles again now that I have lymphodema issues. His reply was that it is possible with care. Bloody nuisance but it is just about knowing the limitations that bc gives us. I have been managing lyphodema since the beginning of the bc journey even prior to actually having symptoms. It is an ongoing "work in progress" that never ends. XLeonie
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Hey LindaI am soooooooo jealous. I so want to go to NZ and would love to give dragon boating ago one day :-) Congratulations on your medal that is amazing. Well done to you and all the other girls.I am like you in that I had never heard of any other form of lymphodema except arm, which I was adviced about on a regular basis by breast nurses, surgeons, onco's, literature etc. but never any other lympo in other parts of the body.In between chemo and radiotherapy my Onco allowed me to have a holiday with my hubby in Tassie so we flew from Perth to Sydney for one night stay to meet up with my BCNA bestie and her partner and then we flew on to Tassie for a good weeks holiday and then flew home. I used my sleeve on the flight and wore hospital stockings etc. but I did end up with swelling of hands, arm, feet and legs for the majority of time I was in Tassie. I had visited a physio prior to my trip saying my arm felt weird etc. but she assured me it was nothing to worry about. Needless to say on returning I had arm lymphodema. I managed to get that settled with bandaging and lympho drainage. Then I got breast lymphodema?????? If you read my other posts you will see what the ? are for :-)All I have been told with the breast lympho is to have lympho drainage regularly plus do it yourself at least twice a day for 15 mins. I use baby powder which makes it a bit smoother to run your hand to your lymph node areas. Plus I wear a band of stretchy type material that I got from the physio on a regular basis as I have been told compression helps. I call it my straight jacket and that they are going to take me away ahaha.......That is all I am able to suggest to you at the moment. Hopefully the other girls have other suggestions. But definitely the hot springs and air pressure has set off your lympho. Hopefully in the future we will be made more aware of other forms of lymphodema of the body and not just the arm where we had nodes removed from.Good luck with it all. Keep us posted as we all need to be informed of these things and you updating us is a great way for us all to learn so thanks heaps. Lots of love, Mich xoxo0
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Hi gals,
Thanks for your replies and information. It is good to hear from other people who have been there done that...
I will have to find out what kind of garments are available for the chest, as my arm is perfectly fine! I am hoping to go to florida next October for another dragonboat event, so gotta get it sorted before then!
I found the lymph massage I have been having good, but it takes time. I also have done some gentle paddling which has also helped. It's tricky balancing the right amount of exercise without overdoing it.
Cheers
xx
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Hi,
Breastcare WA have a bra called lymph-o-fit which is amazing for back and chest swelling. Have a look on their website. It is made in Germany out of similar fabric to the sleeves and works the same way.
Paula x0 -
Hi everyone,
After a double mastectomy and nipple sparing reconstruction 3 weeks ago I am feeling good apart from having a swollen chest. Looks like I am breast feeding. Stimulating drainage doesn't seem to be helping very much. Is it best to wear support or not? Will any particular exercise help? Do I just have to be patient?
Love to hear some suggestions.0 -
Hi everyone,
After a double mastectomy and nipple sparing reconstruction 3 weeks ago I am feeling good apart from having a swollen chest. Looks like I am breast feeding. Stimulating drainage doesn't seem to be helping very much. Is it best to wear support or not? Will any particular exercise help? Do I just have to be patient?
Love to hear some suggestions.0 -
Hi Everyone
We have a lymphofit bra that is designed to provide a gentle compression with a massage effect due to the nodules lining the inside of the bra. If you would like me to send you an email about this bra please contact us on 1300 791 137. Other than this we do have a ladies compression vest with short sleeves that we could show you and then order for you if it is suitable.
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