The ALERT (Australian Lymphoedema Education, Reseach and Treatment) team at Macquarie University are looking for people living with primary or secondary lymphoedema to complete an online survey which will help them to develop appropriate patient information resources.
You can complete the survey via this link: https://mquni.au1.qualtrics.com/jfe/form/SV_721VztSK5hUBU8K
Lymphodema is so daunting at first and I spent so much money on garments, some used and successful some not so much. With lots of different treatments, I found the blow up pump machines the absolute best, hired from my lymphoedema physio, I would watch TV, let the machine do it's magic, then wrap my arm.
I now pretty much have it under control and I use the comfiwave sleep compression every night and at this stage this is all I need. Even if my arm looks normal, I wear it religiously.
Another bit of advice, you can claim the cost of your garments from you Private Health Cover if you have it, not a lot but better than nothing.
I am thinking of trying a pump too. I am seeing my lymphoedema therapist in a few days and will discuss it. I am claiming my garments through the EnableNSW.
Hi GorgyS - I have added the comfi-wave night time sleeve. I dont know how much it is helping yet, this is all still new and quite distressing for me. I think it's helping but am not tuned in enough to understand and feel the changes in my arm. I'm hoping by throwing everything at it something will help.
Thanks Zelda12. I feel that I am struggling to understand the condition, and it takes time. I am also trying to explore a few things/strategies in consultation with my lymphoedema therapist.
It is very emotionally changing. Take care of your self. I found it took me a few years of learning before i even started to understand what it wa s, so then i could start to understand why the therapist was telling me to do certian things. It takes a lot of practise to learn to tune in to your lymhoedmea and figure out what helps and what doesn't. Sometimes a journal can help, just take not when it feel a bit puffier or less, look for patterns. heat , hydration, movement, stress.. all effects us, sometimes it not even obvious what. But it is importnat we learn ways to not let it get bigger and bigger.
Only change one new thing at a time, so you can evaluate its effectivenness.
Do check out BCNA webinar libary , they have three really good webinars on lymphoedema.
https://youtu.be/Xc9arAMx7tA?si=6p5F3M6fI5cDN44e
https://youtu.be/ELP-yle7DAs?si=eX7Q7NqB4HPwM60P
https://youtu.be/GCXsBchfYhs?si=8U2rfOWho-wq5VpF
As well a a bunch on You tube , each of their rural workshops often has a lymphodema talk. There is one with Prof Neil Piller too. He is fab.Karratha https://youtu.be/O5kkQbRZWT0?si=hiTWS6JD9slBvmaK
Murray Bridge, Lee Millard Coff Harbour...
I have had it for 16 years, and now have my little routine of movements i do each day, tai chi, stretches, self massage, my compression ... you get used to it for sure, and learn how to manage flare ups. Meeting other lymphies is also one of the best ways to normalise it and learn tips n tricks. Be curious. Knowledge helps empower you and feel more in control and that takes the scary away.
(We had online zoom lymphie support group last night- every 2 mths. Listed on the Lymphoedema Association Australia webpage. Some face to face groups too.- if you happen to be sutherland shire Sydney NSW then let me know)
https://www.lymphaustralia.org.au/events/support-group-meetings/
Thank you Kristen
I am definitely taking your advice on board. As you said, trying only one new change at a time is the way to go, especially since lymphoedema isn’t the only issue that needs my attention.
I’m just wondering if anyone has used a night compression sleeve and what benefits you experienced.
Yep, I added a night time compression to my management several years ago. I got a Mobiderm adjustafit first , then a haddenham comfiwave ( both gauntlet syles) .They most definately help reduce swelling and soften fibrosis while i sleep. I didn't use them much when i first got them, but now my lymphoedmea ( 16 yrs) is older and getting firmer- it is essential to use at least a few times a week . The mobiderm does soften it more, but the comfiwave is more comfortable, so i swap between the two depending on how my arm feels .
Thank you Jane221 so much
ALERT are also looking for people for a couple of onsite studies too. As was in thier recent newsletter .So If anyone is Sydney based you may like to consider donating some time. They also looking for people without lymphoedema to participate. A friend went over recnetly and said the new metro train from redfern made it easy to get straight to Macquarie uni, and the sozo devices comparison was easy, step on and wait a couple of mins on each device for a reading , then go back and do each device two more times , and overall took about an hour.
Done. Hopefully, people will receive better support for managing lymphoedema.
Thanks GorgyS, I hope so too.
Done. The emphasis on communicating about, let alone, treating a highly variable physical problem by social media or even online, is a bit dispiriting. It may well reflect a shortage of trained lymphoedema therapists, but it's far from ideal.
Thanks Afraser, I definitely agree, it definitely is a variable / complex health issue which needs specialised care and many more trained therapists.
