Forum Discussion
Lymphedema you are not my friend.
I have battled with lymphedema since my second diagnosis over 5 years ago. I was very diligent as I had a very swollen hand and it took 7 weeks of daily bandaging to get rid of the fluid. Since then I have daily massaged and now until this week only wear a short garment most of the time. I was at the stage where I could go to work (I am a nurse and not wear the garment. I had been stable like this for a very long time. However in the last few weeks since I had an arthroscopy on my knee I noticed a swelling in a small area of my forearm. I started to wear a long garment some of the time, one I had not worn much but it seemed to make it worse. Anyway on Friday my worst fears were confirmed and my aldex measure has gone from zero 6 months ago to 14. My arm measruements are stable except for that area around my forearm that has increased by around 1cm.
It is so frustrating, the lymphedema occupational therapist and me are a bit stumped. Did I get a bite...not that I remember. Maybe I just got too complacent and my massages were not as long as they used to be and I probably didn't put my garment on as soon as I should after work...who knows....
I really hope I don't end up in the long garment again as the short one to my elbow is so much easier to wear. She has measured and ordered me a new short one and we are going to try some kineisio tape on my arm at work. I will be religiously massaging and wearing my garment again. It is so frustrating after all this time.
I feel a bit down about it, but it is what it is.
I sometimes feel that the "gift" of lymphedema is almost like the forgotten side effect of all our treatment. Nobldy even talks about it much on here. However if you live with it, it is a constant reminder of the cancer and all the treatment.
Anyway now I have that off my chest I will try and be positive about it and get on with things,, I know there are many in a much worse place than I am.
Hugs to you all.
Paula xxx
14 Replies
Thanks Brenda,
yes I am busy massaging like mad!!!!
so frustrating after being stable for so long.
Hope yours is behaving.
Paula xxxx
Hi Deanne,
yes it can be sooo frustrating. It s great though that I have a good lymphedema therapist to work with and do know all he right things to do. I could be living in a third world country with no health care facilities and a huge arm.
I hope yours is behaving itself.
Hugs back to you.
Paula xxx
Thanks Christine, yes it's the sheer frustration of the gift that keeps on giving.....
nice to know others are thinking of me.
Hope you are doing well.
Paula xxx
It can be challenging Paula yes. Sometimes something as simple as helping my husband down the stairs with a lounge chair was enough to have swelling back into my hand. It was quite worrying at the time and I wore a sleeve and a gauntlet until it subsided. I also did full body lymph massages to my groin, neck and underarms which I think helps a lot. It's settled down for now so no garments but I do many times a day do massage mostly under my arm, the lower front of my shoulder and across my chest, just to keep things moving along.
Hi Paula,
So sorry to hear that the lymphoedema is giving you grief at the moment. I wish they really knew more about this. It is frustrating and scarey because despite doing everything we should it just seems to come and go at random for so many people.
Hope you get on top of it quickly. Knowing all the right things to do will speed things along as best as possible. Sending hugs.
Deanne xxx
Hi Paula I can sense your frustration at lymphedema that it just keeps giving. Can't offer any meaningful advice bit to say I hope it's temporary and you'll find a better normal.
Take care from Christine xx ??
Oh Kath so frustrating. My initial diagnosis and I wasn't given a glove and the fluid went straight from my arm to my hand so I hear you. Could to wear stockings? Nothing about lymphedema is comfortable. Hope your settles.
Hugs.
Paula xxxx
Karen I see an occupation therapist who is a lymphedema therapist. Are you in Qld? Mine is through the hospital and so I don't pay for garments. They often try and recommend I go private, but I resist as the garments are $500 each custom made and I need two every 6 months. Every state is different. There is a great lymphedema alliance in NSW trying to get more attention to lymphedema. I will try and find link as they want as many people to register so that they can keep track of the issues. My therapist taught me self massage which should be part of your daily routine if yiu have lymphedema. A lymphedema trained Physio or OT can tach you and yes it really helps.
Paula xx
Thanks Jane, sorry your arm playing up too. It really is so frustrating and something that is really not talked about enough. These sleeves are a constant reminder... Not to mention really hard to wear when you live in the tropics. Glad it's "winter" at the moment, not that we really get a winter up here.
I am religiously massaging daily.
I will get over it, just a little set back.
Hope your massage helps.
I am very lucky to have access to a great lymphedema therapist.
Hugs
Paula xxxx
Yes I have done encore in the past. Guess I'm just frustrated that it's a flare up after being under control for so long.
Thanks for listening
Paula xxx
