Hi Anyone,
I was today fitted with a sleeve to one arm & a sleeve with glove to other arm, dont really understand the whole Ld thing but the arm that is more swollen i was told 24 % can anyone tell me what this percentage means.
Also the sleeves are making my arms ache more than ever, is this normal when you first start wearing them ?
Thank You
Sarah.xx
Oh b*mmer Sarah, you aren’t having a good week 
There are many more people on here who will know more than I do, my mum had lymphodoema but I so far don’t (touches wood). As far as I understand it, if they control it early and do exercises/massage to help drainage, that can go some way to reducing/controlling it and the sleeve is to stop it from getting worse with a bit of compression.
Hope it is controlled for you and you are given help with it asap xxxx
Hi Mg,
has been a strange week but i know there are many worse off than me, just typical that all my appointments have come together in the same week.
Hugs
Sarah.xx
Hi Sarah,
I know there are people worse off but it still doesn’t make it any less horrible for you to have all of these things going on at once. Have they given you any indication what the next step is with the lymphodoema? I think both TSR and Peachez are in the same boat so may have some useful advice or tips over in the woodies group.
Hugs to you too xxx Wish I could do more to help xx Feel bad for feeling good (just booked flights to Scotland) when you are going through all of this crap xx
Hi Sarah,
I have an appointment tomorrow with the Lymphoedema specialist nurse. I am so worried that I will end up wearing a sleeve. My wrist is quite swollen and my arm is tingling constantly. I watched my mother suffer late on in her life with it, so much so that by the end she couldn’t even lift her arm. I am absolutely petrified this will happen to me. I know in the great scheme of things it is a small price to pay but I do wonder whatever next!
You had best take me to Scotland with you then MG 
lol
Hi Sunshine,
I was given a sleeve for each arm & some kind of tubi grip to wear on worse one in bed, have to say they are not the most flattering accessory but they beat having no hair & I keep reminding myself that if they do the job & make my arms a little less swollen it will be worth it.
Good luck tomorrow hope it goes well & they can get you sorted, let me know how you get on, i am back in 4 weeks.
Sarah.xx
Both arms Sarah, that really sucks
I hope that your sleeves will help get it under control. It is normal that your arms ache at first, but as the swelling reduces that should improve. They do look pretty awful I’m afraid. NHS skin colour, come on, who has skin that colour?? Try washing them with a red sweater for a more interesting hue?
24% means that your arms have a lot of excess fluid in them so no wonder you are sore. Do persevere with the exercises, they really help especially deep breathing, stretching and the arm, hand and finger waggling that you do with the sleeve on. If you have any excess weight (and who doesn’t) it’s one more reason to make a major effort to kick it goodbye.
Sunshine, Tingling is usually if the nerve is being compressed, either by the fluid or by the sleeves being too tight, although it can also be compressed higher up eg trapped nerve at the shoulder. Check your sleeves for wrinkles at the elbow. Hope it goes well at your clinic tomorrow.
I’m not sure how they get the figures if they are both swelled, my nurse measures the bad L arm against the good R arm and then says, Oh but you’re right handed so we expect a 4% (I think it’s 4) difference anyhow, so you’re only 11-4=7% swelled this month, you’re doing really well :)) …uhh, I might have got that sum the wrong way round, my brain has taken an early night. They are good at explaining it anyhow.
hi sarah
i wear sleeves & gloves both sides & a lovely corset for my torso - at least the summer is over
if the sleeves carry on aching go back & get them to try another type - there are so many, & in the year since i’ve been diagnosed with ld i’ve had umpteen different sleeves from 3 different manufacturers & we still haven’t got it quite right between us
& they’re all in different shades of nhs caucasian - altho some of them come in black on script & some only come in black if you pay, & they’re not cheap
it all takes some getting used to - they will hopefully offer you some manual lymphatic drainage (mld) which is really effective in getting the lymph flowing & the swelling down, then you can do simple lymphatic drainage (sld) yourself at home
i don’t know if you had your arms measured before your surgery? in best practice they’re the ones that count as baseline - ‘normal’ for you - that your measuremens now get measured against
if not, then they just hope one of them goes before the other so they can used the non-affected-for-now as baseline
in my experience, this forum & your lymphoedema specialist nurses (if you’ve got any) are your best ports of call for any questions, & nothing’s too stupid to ask
i’ve certainly learnt more from here - & had lovely support - than from gp, rheumatologist & other healthcare providers who really don’t know much about it at all
sorry you’ve got it but welcome to aa v supportive club
Hi norberte,
Thank you.
They are going to start mld in 4 weeks time, they had to delay it as needed to check if it was ok as i have had a blood clot in my neck which has now thankfully dispersed so instead of massaging across chest wall they are going to massage towards groin area (think this is what she said).
The aching has been much better today so i think it was just my arms getting used to the sleeves, have to say the Ld clinic were brill so am very pleased that i have the forum as well as them, am sure i will have all sorts of questions along the road.
Sarah.x
Hi Sarah,
Hope you are ok- it’s not been a good week has it? Just noticed your post.
Both arms is such bad luck. Poor you, it feels like such an uphill struggle doesn’t it? You turn a corner and face a wall. I have disgraced myself by crying in front of the BC and LN recently. I am not a ‘pretty’ crier!!
I would echo what Norberte said- there is a lot of well-meaning mis-information out there from a lot of healthcare professionals. My lymphoedema started as a result of a nurse deciding to treat me to a flu jab in my surgery side. She asked me if I was left or right handed, and before I had time to blink, stuck it in my left arm. And she is the same nurse who does my Zoladex injections, so is well aware of my history! The LN said she had come across cases of GPs prescribing water-retention tablets, as well as other weird and wonderful advice!
I have started wearing my glove, and it is not too bad- just an ugly reminder of something I am trying to move on from. I guess it will be more obvious in the summer.
Anyway, thinking of you,
Tracey
X
I had very good lymphoedema care at a clinic based at a local hospice. It started with swelling across the back of my hand and professed to my forearm. They gave me made to measure gloves initially (and a full glove & sleeve later). The crucial thing to make the glove work properly is having a pad on your palm to balance the pressure on the back of your hand. Without this the glove doesn’t work as well. They also taught me drainage techniques and I did try tape but my skin reacted so that wasn’t the answer for me. I prolong the life of the gloves by turning them inside out and always carry antibiotics with me as I’ve had four episodes of cellulitis. I’m ok now though. Swelling has stabilised and I don’t even bother with the clinic as I manage it ok by myself. Don’t often wear the glove or the full glove & sleeve unless I have abnormally great swelling.
Twinky68 x
Tracey I had the same as you, totally blubbered myself out with the lymphoedema nurses although I never cried once with the cancer thing, not in oncology clinic or surgery or all throughout rads. Wish I could cry pretty, but everything just dribbles. Ewww.
I think it goes to show these nurses are more holistic and listen to our feelings, not just treat our physcial bodies, they are the safe place where it’s ok to let go and say how awful it all is. They understand, They are very much seeing the aftermath of cancer where we have mostly finished the other treatment and this is the legacy that remains. Mine are just wonderful.
hi sarah
i’m glad you’ve got the mld sorted, & the clot in your neck’s sorted too - that sounds pretty horrible
i do my sld down to my groin - all they’re doing is enccourging the lymph to flow towards nodes that are still working, doesn’t really matter which ones
have you thought about blood tests & injections? i have bloods taken out of my foot - it was an absolute circus to begin with as freaked the nurses out, but i always see the same one now & we’ve developed a good routine so she usually gets in 1st or 2nd (sometimes 3rd!) time & i feed her chocolate every now & then to keep her calm & focussed!
if any of my hospital consultants want bloods, i get them to print off the bottle labels or write down what they want & book to see the same nurse at my gp’s - results go automatically to gp’s and hospital
& i had my flu jab in my thigh, & blood pressure cuff goes on my leg too although the numbers come out a bit higher than on arms so you have to remind whoever’s doing it to take that into account
i’ve had it put in all my notes that if it’s something life threatening they can inject or apply pressure wherever they want, but otherwise the have to avoid both arms & torso
it means a boring conversation every time you meet a new healthcare provider (“surely i can put a cuff on for less than a minute”, “i’m only getting straight into a vein - how can that affect your ld?” d’oh!) but it is manageable, honest, & just becomes normal after a while
but i still blub about it all every now & then, after a year, so if you get fed up & weepy you’re in good company
let us know how the mld goes, & how you’re coping in the meantime