Forum Discussion
lymphodema encouragement
doing a little happy dance... went into see our OT/lymphodema specialist at Daffodil Cottage today and my LDex reading has gone down by over 6pts..... woo hoo so we have decided another course of bandaging in May for 3 weeks will be undertaken to see if we can get it down even further....
I am so happy that I am seeing results wearing this Bl**dy annoying sleeve and glove throughout the summer and sticking to doing my massages to help it.
Just wanted to encourage you all with lymphodema that we can get help for it and manage it
I am so happy that I am seeing results wearing this Bl**dy annoying sleeve and glove throughout the summer and sticking to doing my massages to help it.
Just wanted to encourage you all with lymphodema that we can get help for it and manage it
17 Replies
- Soldier Crab said:Hi Paula YES please about sharing the link when you get it please @mum2jj
Will definitely when I get it, for some reason they said it may be a while @mum2jj - Hi Paula YES please about sharing the link when you get it please @mum2jj
- @Share just double check with your therapist re massage. I listened to an amazing breacan webinar on lymphedema today and things are changing in treatment and methods all the time. They will eventually email me the link to it and I will share it. Well worth the 1 1/2 hours of listening. The only part I missed with my son interrupting right at that moment (he's 16 and should know better;) ) was the bit about massaging the tummy so need to follow that up.
Hugs
Paula xx Hi Alice and Paula - thanks so much for your encouragement and advice.
I will ask about the Ldex readings next week @SoldierCrab at my appointment. Boy - now I know why they call it intense bandaging !
Currently I am having fortnightly massaging and have had about 4 "laser" sessions on my arm.
@mum2jj - yes, I had a custom fitted garment measured and has been in place for around 6 weeks now.
Thanks for the exercises - some are very similar to mine - will print your comments and links.
Huge thanks & hugs to you both xx
- @Share my self massage is start with 10 really long deep breaths. Then massage skin to skin the lymph nodes in groin, unaffected arm, near collar bone and in neck. About 10 full circles in each place. I then massage with about as much pressure as you would stroke an angry cat down my abdomen (basically getting all fluid out of there so you can shift fluid from arm. Then massage across from shoulder to middle of chest, try moving towards other arm even. Then massage top of arm, them from elbow up, then lower wrist then eventually hand. Once finished repeat big breaths and lymph node massage. This is the massage the Lymphedema OT at hospital taught me. I do,it every night and depending on where I am at lunch.mphedema wise and time wise at varying lengths of time. Are your garments custom made. If they aren't and aren't a great fit they may not be helping, you may need custom made ones. Hope this helps.
@"Soldier Crab". That's great news. Mine fired up to 13 mid last year, but is is now back to -0.5!!!! Feeling blessed.
Paula xxx - Share I hated the Intense bandaging ... for me it stays on for 7days straight then off and new bandaging put on .... you cant shower, struggle to drive cant type for work no washing up etc etc. but it sure is worth it....
have you had Ldex readings done in the past and ask if they have an Ldex machine it is a good way to measure the fluids.
I have a lymphodema massage fortnightly to help me drain it professionally but that has just gone up to $80 so it might mean less visits.
try looking that resources on BCNA about lymphodema also look at the http://www.actionalliance.org.au/ see what information they can give you also.
Alice xox - Oh, @"Soldier Crab" - that is just the most fantastic news for you. Dance as many happy dances as you wish - you deserve it !
Thankyou - this has filled me with encouragement !
My lymphodema therapist suggested about 6 weeks ago to contact the OT/lymphodema dept at our local public hospital and enrol as an outpatient for "intense bandaging". I have an appointment next Monday 3rd April.
I have been wearing a full sleeve with hand for the last 8 weeks and my measurements have not gone down at all - in fact whereas my arm would go down slightly overnight when my arm was raised and supported that is no longer the case. They are looking at recommending a night garment to reduce the swelling.
My measurements were last taken about 6 weeks ago and there was a 50cm difference. I know it has gone up in that time as there are some items of clothing (short sleeves that are not overly tight) that I wore only 2 weeks ago & simply do not fit as the swelling is greatest now in my forearm and in my armpit. A few people have jokingly called me Pinocchio !!
I would really appreciate the info re: massaging to see if yours are different to mine. Although I must admit that there are some days that I struggle to do the middle of the day lymphatic system exercises with work !
Kudos to you @"Soldier Crab" and @mum2jj - am committed to doing the hard yards to get the results :)
Sheryl xx - Yep stay on it and never let it swell nasty like that again. <3
- Excellent, @"Soldier Crab". You must be doing all the right things :)
- That's fantastic and well done on sticking with the sleeve etc through those disgustingly hot days. My lymphodema is down slightly but hoping with the sleeve, massaging etc it can come down a bit more xx
