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Hi, my lymphodema was 13% and to be honest since my hols arm hasnt ached or anythng and didnt really notice any difference. maybe worse my sleeve onece or twice a week and some exercise and massage albeit not every day. I had a really small area of puffyness, only slight just above wrist so when I went back for review theyve measure and my arm has almost doubled and its a generalisation up and down arm with two bigget patches. Its now 26%. However, its only when I wear the sleeve my arm feels heavy and achey but because of the puffy bit (which they couldnt see), they have given me a sleeve with a thumb in and up to knuckles and said if fingers swell then maybe a gloove (which Im sorry I really dont want), so Ive agreed to wear almost every day all day, however Im on day 2 and can already see that my first finger looks a bit swollen already, wondering if its worth it as its only when I wear the sleeve that I get the puffyness??? Know Im complaining but its getting to me now and seems since Ive seen them it gets worse but beforehand was okay. So im back to heavy achy arm and bliss for hour in evening when it comes off!!!

Phew, sorry!!

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Hi lisaf

Whilst you wait for the other users to reply with their advice and support you might find it useful to have a look at the BCC booklet, ‘living with lymphodema’. This includes information such as, how it can be treated and ways that the symptoms can be managed, including some exercises. If you would like a copy just go to the following link:-

breastcancercare.org.uk/upload/pdf/bcc_lymph06_lp_0.pdf

I hope you find this helpful.

Kind regards
Sam (BCC Facilitator)

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Hi Lisaf

Really sorry to hear you are having such a rubbish time with your arm (not to mention your sleeve). I don’t blame you for not wanting to wear a glove. I haven’t got any myself, but from reading others’ posts they seem to be the worst part of the whole tedious lymphoedema apparatus.

Have you actually got any swelling at all in your hand?

Did you have any swelling in your hand when your arm was only 13%?

Were you just wearing a sleeve and no handpiece at all before?

Do you think the sleeve(s) (old or new) could be the cause of the puffiness?

I’m asking all these questions because the answers might help you (and your lympho nurse) to get to the bottom of this problem and because it occurs to me that it MIGHT be that your arm is an awkward shape and that you would be better off with a custom made sleeve.

OR…Quality control isn’t perfect at compression garment manufacturers’ factories and again, it MIGHT just be that you have a duff sleeve. (Perhaps the size stated on the label doesn’t match the true size of the sleeve, it’s the wrong length or there is an incorrect, or uneven compression gradient)

As a rule, I always wash my sleeves by hand, but when I get new ones (which I usually find a bit too tight), I machine wash them a couple of times (cool wash, reasonably high spin speed) to ‘relax’ them a bit. This seems to help them to feel a bit more comfortable and slightly less of a trial to start wearing.

It is also possible, tho’ thankfully rare, that a sudden worsening of lymphoedema is a sign of other problems. Altho’ I imagine that if you haven’t been wearing your sleeve, etc (and let’s face it, they are the absolute PITS to contend with, especially on holiday, don’t blame you for wanting to get shot of the thing as much as possible) as much as advised that that is much more likely to be the reason.

Finally, you might really need that glove after all. I hope that’s not the case and that a different sleeve will be the solution.

These are just my suggestions/thought/ideas, nothing more. And I do think it would be a good idea to talk things over at an appt. with your lymphoedema clinic/nurse as soon as possible. IMHO, if your arm is now 26%, they should be thinking about some MLD to reduce it, not just a sleeve to contain it. 26% is too much.

I have also sent you a PM

X - really hope you start to feel a lot more comfortable soon.

S

(And yes!!! It’s ‘bliss’ alright when they come off at the end of the day!)

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Thanks very much. I had slight puffiness in forearm when wearing sleeve and went when taken off now ith new one my finger seems a big puffy when wearing it, albeit hate to admit is more comfie! I was amazed to find it had increased to 26% as to be honest I hadnt even noticed and hadnt bothered me at all, but due back in 6 months, if not better will go back earlier and thanks for message going to look into mld. I think a custom made one might be in order as my arm is a wierd shape but boy those things look even worse. Well off to take it off and have an hour of bliss!!!

Thanks again oh expert! x

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Hey Lis,
don’t forget your trip to the US recently might have made a difference and hopefully will wear off over time?
Lily x

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That’s a good point Lily.

Flying with lymphoedema/at risk arms can be tricky.

I would certainly go back earlier if you have problems, lisaf. Six months is a very long time to wait in between appointments, expecially if you have problems and haven’t been offered any MLD to try to get the swelling down.

And if your arm does settle and reduce in size before the six months is up, you’ll need smaller sleeves to help to maintain the improvement, too.

X to all

S

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Hi Lisaf

I’ve had a custom made sleeve for 18 months or so. The nurse couldn’t get an off the shelf one to fit, alot of my swelling is round elbow area. Nurse said because I had distortion I needed a made to measure one. When I first developed lymphoedema my are was measured at 20% because sleeve didn’t fit properly it went to 33%. We managed to reduce this to 25% but two bouts of cellulitis in past 6 months has seen my arm go up 31% and now currently at 28%.

In my area I can only have MLD if arm is 0% plus. Horse and bolted comes to mind.

I have a similar sleeve to yours as my hand started to swell, but so far fingers haven’t. Sounds like fluid pushing down, so sleeve may not be correct. I would go back to lymph clinic again, as it may gey worse.

Take care xxx

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Thanks for info -just thate the thing doing well so far wearing almost evweryday but hard work in this heat I tell you and waiting for longer one as just rests in bad place but do your arms ache when wearing? My arm only aches when I have it on - no pain without it at all xxx

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Hi Lisaf,
I have had lympho. for the past 18mths now, mine also was mild (10%)
Arm was measured for correct fitting sleeve, and must admit I did wear it all day every day to start with, did the excerises and made sure skin is kept in good condition, (don’t know what you’re weight is like) but I was/am overweight but have lost 1 stone,feel this has made a big difference, check up at clinic last week and am now discharged lympho down to 1.5%. I’m telling you all this is to say don’t give up I know it’s real PAIN (literally) and it isn’t the most beautiful thing to wear, but keep the faith, wear sleeve especially when driving and any kind of work, do the excerises and Im sure your arm will reduce. The long haul flight wouldn’t have helped, but bet the trip was worth it!!.

I know it’s not much but hope this has helped. one thing you will get from this link is plenty of support and encouragement, I know it’s helped me.

keep smiling
Nanna