Lymphoedema Information Day

I have had lymphoedmea for 14 years in my arm. There is a lot a person can do tho get  the swelling down. But even better is to take action when it starts as you can slow the internal tissue damage as the  fat and proteins 'kinda 'stagnant" in lymph fluid that is left to sit and the skin stretches like a balloon and that doesn't go back down. If it is left until it gets hard and fatty then that can't be fixed without surgery, but the fluid componet can be removed with special massage done in a sequential order and direction related to the persons needs.The best thing is to go to a lymphoedema therapist if they can.For assessment and to talk through the many options to get swelling down ( decongestive therapy - often a few weeks of daily multi layeded  special short stretch bandaging done  carefully and in a special way ) then followed by daily self cares of massage and  medical compression. Large limbs and people with limited mobility many need velco wraps for compression.there are even softer low grade compression for night time or people who are immobile. there are pumps called sequential pneumatic compression pumps, that inflate and deflate and are like getting a massage.Lot of people do that for an hour every day at home .A therpsist can help you hire or buy ( they are $$$) , and teach a person how to do the  self massage of  empty the buckets - ie massage our neck.armpit etc before the pump/massage. Yes long term unmanaged lymphoedma is called elphanitis, there is also in 3rd word countries lymphoedmea filariasis casued by worms that get into the lymph system. Ther e is also a condition called lipodema which is different. There are many causes of lymphoedema and it can happen at birth when some lymph vessels just didn't develop or from an injury and in other parts of the body as well.But hygiene, skin care, massage , compression - swelling  can be managed and should.No one needs to suffer. If left, it ends up effecting peoples ability to move around and causes all sorts of other problems. The smallest of infections can suddenly turn into the dangereous cellultis and   need antibitics asap, as our body can't get the fresh  germ fighting lympph fluid to the cut and be replaced due to its sluggisheness.Any red rash staight to gp or hospital.

I have had hand swelling.It is harder to get under control but is possible and worth the effort.

I have done several  posts on it on my instagram and facebook page called Lymphoedema Lymphatics Stuff.

Also i post in two aussie facebook groups (use the page search tool for hand etc )

To address hand swelling - you have to address further up stream. Everything from neck massage and stretches, vibration, movements like shoulder roll and up the wall arm slides,tai chi- waving arms around  ,deep belly breathing,  heaps of clavical ,armpit ,neck and arm massage with hands and roller ball,(yes on the side the nodes were removed) . Our lympohatic system is a whole body system- so it intersects with digestion, blood, muscles, so hydration is really important too.No diuretics.Good quality medical grade graduated compression , fitted by a proffesional, washed and looked after carefully, replaced every 6mths. ( There are some compression garment subsidy schemes in each state of Aus.Listed on the ALA site. )

Some people do kinesiotaping,

Learning how and why i need to look after my really helps to motivate me.

If i don't do it- my arm aches and will get fatty and heavy .I have had cellultis once and that was so scary.But the only way to prevent it is with diligent self care and keeping my lymphoedmea as 'good' as possible.Its worth it.

I love watching webinars and meeting other lymphies.

You can find a lymphoedema therapist near you using this tool, widen the km radius bigger then 5klm and add your postcode.

this will give you a list of names to follow up .

Telehelth video calls are fabulous for people who can't get out and about or are far away from capital cities. You can learn a lot in a discussion with someone who 'gets ' it.There are some in home services too.

They are not the sdame as beauty lymphatic massage therpaists- they are people who often are already experienced physions. oTs who have done extra courses. Not all lymphoedema therapists are the same- if you find a good one its worth the travel.

Please do  to encourgae your friend to follow up.The sooner the better.

A few weeks of  very annoying bandaging usually get a heap of fluid out- and then it feels fabulous.

Learn how to not let it fill up again as they bandage you daily.

there are fancy single use bandgaes that can sometimes stay on for 3 days called coban, but there are many options depending on a multitude of variables.

Hope that helps.

Love your lymph.

Thursday 7th March 2024

Zoom webinar