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Lymphoedema newbie looking for help

20 REPLIES 20
katytc
Member

Re: Lymphoedema newbie looking for help

Just been diagnosed wearing sleeve and glove daily and doing my exercises, shoulder is painful and have an ache from below armpit down my side. Any advice for easing the pain in my shoulder?? Taking diclofenic for something else am sure you are not meant to take paracetamol or ibuprofen with diclo?
Have a review in a month, would be grateful for any help, many thanks xx

Guest user
Not applicable

Re: Lymphoedema newbie looking for help

Ladies
get your hubby /partner to masage the affected area with e 45 lotion it is very important to keep the area moist so that the skin dosnt crack ,if you do break the skin use an antiseptic wipe to clense it ,dont get sunburnt and use a high suncream .dont forget to do the arm excersises they dont take long I do it a couple of times a day and if doing anything repetative wear your sleeve and glove ,when in the garden wear gloves even when doing the dishes wear gloves ,dont forget that when the area is swollen its stagnent lymph fluid under the skin so if the skin breaks its a fast way for infection to travel through the body . oh almost forgot dont have hot baths and dont soak in the bath .

take care
lizzy c
sivam
Member

Re: Lymphoedema newbie looking for help

For the last few weeks I have had symptoms of lymphoedema and tried to ignore them.I started to use a cross trainer for 10 mins every hour in the hope of shedding this letrozole induced fat around my middle, pulling the handles of the machine of course means my arms are taking the weight (silly me).Today I contacted my BCN and am being referred to a lymph specialist the swelling is in my arm and underarm around to the back,36 nodes were removed so maybe I am lucky to have lasted this long since MX surgery Aug 2011 without the dreaded Lympho.Now frantically gathering info and all the above comments are very helpfull x Love and Light Mavis

GIJaneH
Member

Re: Lymphoedema newbie looking for help

ST - good to hear from your again! Do you sleep with your arm elevated? I used to use a v-shaped pillow, and my arm is always better first thing in the morning after that. Just bought an oblong, narrow cushion/pillow from a large store that sells knickers, at a discounted price. Seems to do the same thing, more comfortably.

I was fortunate to be referred to the lymphoedema nurse at the local hospice for a course of drainage, and he showed my OH how to do across the back. We do that every night and THAT makes a difference too. I'm not convinced MLD across the front does much good, but we have a lot of lymph nodes in our groin, so you can get those going the way you would do under the good armpit, and work upwards towards affected arm... What is VERY clear (for my arm) is that being over tired makes it worse. Stress makes it worse. Being chilled and not-overworked makes it improve...

Hang on in there ladies..

Jane

Guest user
Not applicable

Re: Lymphoedema newbie looking for help

omg my arm is just swollen and aching guys..and i was so fed up today when put shirt on and arm too tight as so swollen! But to be honest after diagnosis from secondary mets in spine liver and hip not so worried but reading some of your comments am not going to complain about this!!!! God luck with it everyone xx
supertrouper
Member

Re: Lymphoedema newbie looking for help

Been back to see the Lymphoedema nurse today. She has fitted me with a compression sleeve with glove to see if this helps. She has said that once my reconstruction has been done then once I lose some weight then the lymphoedema should improve.

Guest user
Not applicable

Re: Lymphoedema newbie looking for help

jaxmackenzie i hope you get sorted out i know how you feel i have lymphadema too in my breast, arm and back very paiful
jaxmackenzie
Member

Re: Lymphoedema newbie looking for help

I got lymphomdema 3 weeks ago, my right arm and hand/fingers are swollen. I had to wait 3 weeks to see a specialist and she had prescribed a gauntlet and a sleeve. Unfortunately the sleeves she had in stock did not fit so I am having a made to measure one. The sepcialist also said that they don;t really do the MLD so I would have to go private to have it, but she could show me some techniques to use one I finish radiotherapy?
Guest user
Not applicable

Re: Lymphoedema newbie looking for help

hi every one im new to this site i have lymphodema in my affected breast, back, and arm, i have been put on a 6 week course of taping to help re train the lymphatic system and also have massage exercises i have to do twicwe a day my breast is the worst so sore its wk 5 and i can only see slight improvement!!!! everythink is worse at night its really starting to get me down!!
supertrouper
Member

Re: Lymphoedema newbie looking for help

I've had my appointment at the lymphoedema clinic and she said it is mild. She showed me how to do manual lymphatic drainage massage but to be honest I cannot see much of an improvement. My arm seems to be bigger first thing in the morning and I spend a good 10 minutes massaging every morning as I was shown to do. I now have my reconstruction operation date through for March 22 and I am hoping that once some scar tissue has been removed that there will be an improvement.

didi62
Member

Re: Lymphoedema newbie looking for help

was told got some lymphoedema today at oncology check up.at least he listened to me unlike the person(not my surgeon)at the brest clinic check up a month ago.she was not interested but we know when something isnt right dont we?this is just something else we dont want to have to deal with but we will get through it as we are all braver than we ever thought we were.take care all Denise
Guest user
Not applicable

Re: Lymphoedema newbie looking for help

Hi all,
Just looking for anything on this to help. Just been confirmed with it by my consultant and saw a nurse yesterday. I can't believe how emotional its made me, its like someon opened a flood gate. I wouldn't mind but after all we've been through this is mild and after reading all your great post (thanks for the 1,2,3) I feel more in control again.
Thanks Ness x
moorcow
Member

Re: Lymphoedema newbie looking for help

HI there, sorry I haven't been around for a while - things I find most helpful are deep breathing and singing- amazingly. I also do the exercises on the lymphodema factsheet from the haven in leeds - it can be tricky to find on the website but it is there! So glad you asked as I'd never seen the my lynphodema training things so thats helped me too -
all the best
I start a six week course at the clinic next week - its all about massage and skin care etc so if i find out anything new i will post,
N
ps my new sleeves from chic compressions are wonderful

supertrouper
Member

Re: Lymphoedema newbie looking for help

Thanks lizzy - I will give that a go. I have received an appointment for the Lymphoedema clinic for 4th of February so that's not too long to wait.

Many thanks to all who have replied.

Debbie

Guest user
Not applicable

Re: Lymphoedema newbie looking for help

hi super trouper
start with some fist clenching and stretch the hand out appox 15 do it 3 or 4 times a day
do some rotating of the wrist (hard to explain )hand out in front hand down twist to right all the way round to left and back to in front oneway then the other again 15 times
then rest the arm and raise the wrist upward hold and release again 15 times as often as you can
when walking swing the arm
swim if you can
all this will help
i no longer wear a sleeve or glove but i know they are ther if needed and that is in 6 months
good luck lizzy
supertrouper
Member

Re: Lymphoedema newbie looking for help

Stressy-messy - thanks for those links, very helpful.
My fingers are quite swollen today - struggled to take of some of my rings - cannot get my wedding ring off. Hope the swelling goes down before I have to have the ring cut off. Also hope I get a referral appointment through soon.

Thanks for all the messages xx

stressy_messy
Member

Re: Lymphoedema newbie looking for help

Found the training part 2
My Lymphoedema Training - Part 2

Hope it helps xx

stressy_messy
Member

Re: Lymphoedema newbie looking for help

Hi I've had lymphoedema for nearly 5 years now. I started off with a sleeve and gauntlit for my hand, after about 6 months my hand was back to normal and I didn't have to wear the gauntlit anymore. over the last few years my arm has gone from being 21% bigger to 11% which it was today when measured. I still have to wear my sleeve but can leave it off for longer periods now if not doing any lifting.
A few years ago a lady on here called fizbix did some lymphoedema training and put information on here. There are 3 parts but I can only find part 1 and 3. here's the links.
My Lymphoedema Training - Part 1
My lymphoedema training - part 3

Also another lovely lady on here Bahons2 was very knowledgeable about lymphedema but is sadly no longer with us. If you put her name into the search engine you might find some of her posts on lymphoedema.
best wishes Melxx

Guest user
Not applicable

Re: Lymphoedema newbie looking for help

Hi Debbie,
Sorry to hear you have lymphoedema. Unfortunately I cant advise as I am in the same position, just been told myself but mine is to the chest wall. I have an appointment soon to also learn some massage techniques and I am being prescribed some low dose antibiotics for a year as I have previously had cellulitis. They can be linked apparently. I am sure there will be someone to give some good advice soon.
Take care xx
Lucy_BCC
Member

Re: Lymphoedema newbie looking for help

Hi Debbie

Whilst you await support from your fellow users I wanted to point you in the direction of the BCC information about lymphoedema in case you hadn't seen it, it's here:

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/living-lymphoedema-after-breast-cancer-bcc5

Our helpliners may also be able to put you in touch with others with similar experiences via our 'One to one' support servcie via email or telephone so please call if you feel this would be useful, 0808 800 6000, weekdays 905 and Sat 10-2

Take care

Lucy

supertrouper
Member

Lymphoedema newbie looking for help

Gutted to find I have now got Lymphoedema! I had radical mx in December 2011 and had thought I had got away with it. Woke up to find affected arm swollen, heavy and aching. Saw my BCN yesterday and she is referring me to a specialist.
What I am hoping for is for some guidance as to what I can do to help myself before I see this specialist. I have googled and found links to youtube videos on self massage techniques and they looked okay. However, I've had lots of help in the past from other users of this forum so thought I would ask here too.

Debbie