Hi aroma
It’s a shame your clinic is so busy, but it sounds as tho’ you really need some intensive therapy, as lymphoedema doesn’t improve on it’s own, as we are all painfully aware. Can you make a polite, but firm, fuss next time you go?
(If your sleeves are too tight at the top, they might be making things worse, too - tourniquet effect).
X
S
Hi
Thanks for the advice about the bras
I wore my sleeve all day yesterday for the first time and when i took it off i could feel like a bubbling (throbbing) sensation around my wrist for an hour or so, is this a good sign!!!, hope so, i must admit i noticed the sleeve helped as i was at my daughters and she has 3 little darlings! 4yrs and under so im forever picking up,
cuddling etc and i noticed my arm didn’t seem as swollen by the end of the day, but god! isn’t it a relief to take it off, i would be interested to know if you ladies wear yours all the time or just when needed ie gardening, ironing etc…
Mizzy xxx
Hi Mizzy - glad you found the advice about bras helpful.
And it sounds like the sleeve helped at exactly the right time - when you were picking up and cuddling your grandchildren.
When do I wear mine? I’m not working at the moment (having a sort of adult ‘gap year’ and studying with the OU at the same time), so I tend to doss around without them first thing (I wear them on both arms). Once I’ve done the self massage and all that hoo-hah, I tend to put them on and keep them on after that, as I find it easier than continually taking them on and off (I’m not very good at planning my housework!) and I was told this doesn’t do the fabric any good. If I’m going out somewhere special, particularly in the evening, I’ll take them off.
I wear Haddenham’s Venex sleeves and these are lighter than normal, smoother and never roll down - much cooler to wear and generally less conspicuous. There were supposed to be becoming available on the drug tariff, so it may be worth asking about them. Even so, it’s nice to get the blighters off tho’, isn’t it?
Thinking of you
x
S
Hi girls. I had mastectomy and total lymph clearance , so was warned about Lymphoedema. I have developed it on my chest wall, under arm and back and now have swelling in the supaclavical area as well. I have been advised that as my lower arm and hands are fine, not to wear a sleeve uless I am doing really heavy work. The tournequet effect on my upper arm would make the swelling worse. I have seen a lymphoedema specialist (on NHS) and she is giving me weekly massage drainage sessions. I also have been taught to do home massage and that really helps. She also suggested to carry on with regularl arm exercises and as I swim regularly, she said this was one of the best exercises to do. I know it is a pain to do the exercises and massage, but if it means I can avoid wearing a sleeve, I’ll do anything! She has advised that I should wear a sleeve however when flying and/or travelling and sitting down for any length of time, so I take my sleeve with me when travelling. My GP also gives me a preacutionary script for antibiotics in case I get an infection when away from home. I am extremely careful with gardening etc. and if I have the slightest cut/graze or bite immediately apply antiseptic cream or Antisan (for bites). Obviously I don’t let anyone take blood or b/p on the bad side. I wear mastectomy bras and have found that Anita bras are the most comfortable, decent straps, full cups, not too high under arm and pretty styles too (but very expensive, I am afraid) and I also wear a light weight prothesis, which all helps.
Hi Birgit!
Sounds as though you and your lymphoedema are being looked after really well by your specialist and GP - that’s great.
hi just back from physio ,and as she cant manipulate my arm due to pain she cant do anything else for me ,now i have to contact my gp again to be referred to hospice for mld ,not all nurses are trained in this type of massage so could be a long wait ! oh well just have to put up with the pain i suppose ,cant still be a frozen shoulder after all this time !
Hi aroma
It’s good to hear that you should be getting some mld. It’s weird tho’, that you have to be referred somewhere else to get it! If I understand you correctly, your NHS lymphoedema clinic only has nurses with no training in mld(?) - yet it’s one of the mainstays of lymphoedema treatment.
X
S
yes only one of the nurses has had specialist mld training and she has not offered me it .clinic is so busy that it all feels a bit rushed .
hi.hope everyone os ok and coping well with the lymphodemia and all its brings .myself im just getting through the days ,waiting for the appointment to come through ,my gloves are too small so not wearing anything on hand at the moment and it shows i want to do my garden my am restricted to what i can do ,anyone know of a hunky gardener!!!l . lynn x
Hi!
I have moderate lymphodemia on my left side and really struggled to find a good bra i Oslo, where I live. In Febr I went to Manchester and in the local M&S I was measured by an very nice and understanding shop assistent. After having tried on a few different types, I ended up with a “total support” bra. It was only 15 £. I bought 3 in different colours and have worn them every day since that. To me they have been perfect.
I spent some days in Dublin a couple of weeks ago and stocked up with a few more of the same from M&S. The price in Dublin was 20€.
I hope some of you, who are lucky enough to live in a “M&S country” (Norway is not) will find a good bra there too.
Take care
Maia