Hi just become a member of the Lymp gang. Any advice would be great. Just off to put sequins on the horrible pink sleeve. Jellylegs 
Hi Jellylegs,
Just another group you never wanted to belong to, eh? But welcome, anyway. I was diagnosed with LE in March, cried all April, and have been slowly coming to terms ever since. After a bout of cellulitis in April (no wonder I was crying!), I got my GP to prescribe me ‘prophylactic antibiotics’, so that if it comes back on a Friday afternoon or when I’m on holiday I don’t have to go to A & E.
I joined the Lymphoedema support network on the advice of my Lymphoedema nurse; they send me a newsletter that is moderately informative, and I have looked at their website <<cite>http://www. lymphoedema.org/ that I found full of helpful advice, and the lymphedema section on the breastcancer.org forum <http: community.breastcancer.org=“” forum=“”> is brilliant–two women on the site are absolute pros, and answer every question no matter how stupid. I have learned a lot, even if there is a bit of “how will I pay for all this” talk that THANK GOD the NHS makes at least partially unnecessary.<br>
I bought myself a third sleeve from Daylong.co.uk so that I didn’t have to be quite so frazzled about washing one at the end of the day. It is nice to have one to wear, one almost dry and one that I wash sometime when I get a chance during the day. I suppose if you were more organised, that would be less important. <br>
Now I just need to loose weight, remember to drink tons of water (it’s supposed to help) and keep doing the exercises. WHAT a bore!<br>
On the other hand, sequins on the sleeve sound very flash! I may follow your lead! Which reminds me, have you seen the Lymphediva sleeves? I’ve not got one–they are expensive and have to come from the US–but they are calling to me as a change from this awful, awful Sigvaris sleeve. <br>
Quail </http:>
Hi Jellylegs
Welcome to the gang. We are quite a friendly bunch at heart. I was DX with the dreaded LD about a year ago now and initially it dominated my life. After dealing with BC it seemed so unfair. But now with the help, advice and laughs from this site I think I have it in proportion. I’m still here - yes I have to wear a sleeve and do the recommended massage and excercise and answer questions from nosey people as to why I have a sleeve, but I am alive and happy.
My sleeve is a sigvaris one with a mitten prescribed by the NHS. I found that they available in black as well as the awful beige, so my friendly chemist gets them for me instead. Although they are far more noticable my head copes better. They are not pretending to be my skin they are there to do a job just like a walking stick would be. I am interested in the sequin idea, I have heard of them being painted with fabric paint, but not sure how sucsessful that experiment was. I do have one of the lymphediva sleeves but I have quite short arms and they wrinkle up alarmingly. I am seriously considering chopping a lump off at the wrist but will run that past my LD nurse first.
Take Care
Andie
Thankyou you so much Quail. That was really helpful. I will check out the US site . Appreciate your time. x
Thankyou Andie. It was kind of you to reply. I must admit I dont come on this site often now,but it was a lifesaver when I needed it 3 years ago.It does seem unfair that after BC you have to deal with this too. I hate the sleeve and the question but It does feel so much better now. I had pain in my arm and was told it should only swell and not hurt I feel such a wimp. x
Hi Jellylegs,
Here are some tips you need to observe to make sure it does not flare up.
- Don’t carry anything heavy
- E45 twice a day.
- No getting sunburnt
- No insect bites
- If you have the slightest cut, use savlon or any antispetic cream to avoid infection.
- Carry antibiotics with you at all time, so if cellulitis shows its nasty head, you don’t have to wait until a doctor can see you to start taking them.
- Check antibiotcs used by dates o
- N a regular basis and get them replaced.
I was diagnosed four years ago and had 13% lymphodema, i am now down to 2%. this means that I don’t need to wear my sleeve and glove all the time any longer. It never used to bother me in the winter but in the summer, it was not nice with a short sleeve t-shirt…
Now I wear it when doing the housework, gardenning, driving over one hour, long train journey to remind myself not to carry my suitcase with the right hand. And all flights.
My NHS trust provides me with 4 sleeves and 4 gloves per year, two of each every 6 months. After 6 months they need to be binned as they would have stretched too much.
Good luck.
Thankyou Vercors for your time. I will have to see my doctor. …What is cellulitis?? I have only seen the lmph nurse once and she did not mentioned it. Nether did the lit that she gave me.Thanks again for your time. x
Hi Jellylegs
Cellulitis is an infection of the deeper layers of the skin and the underlying tissue. The main symptom of cellulitis is the affected area of skin suddenly turning red, painful swollen and hot,
Known risk factors for cellulitis include:
- having a weakened immune system (the body’s natural defence against infection and illness) as a result of health conditions such as HIV or diabetes, or as a side effect of a treatment such as chemotherapy
-
lymphoedema – a condition that causes swelling of the arms and legs, which can sometimes occur spontaneously or may develop after surgery for some types of cancer
I have had Lymphodema for 3 years but thankfully no cellulitis. Your nurse would have explained that you need to be very careful with your skin and protect it from infection. This would be the type of infection she would have been talking about.
I hope your lymphodema is not too severe. take care.
Hi
Another newbie to the LD gang here. I went to see nurse 2 weeks ago and was given a “flesh” coloured sleeve (Seriously not sure anyone has flesh this colour lol) and a black one (I have horses and she thought it would not show the dirt!) I went back today and the flesh coloured one has been taken off me as was causing rash at the top were the sillicone? strip is. Also hand has started to swell so given a glove. Nurse has ordered me 2 new sleeves and gloves to pick up next week.
Have been given the exercises and the MLD? to do every night. So not happy about getting dx with this as I was told I was low risk as only had SNB. Nurse said it was my lifestyle that gave me higher risk although no one told ME that!
Sorry to moan but was just begining to feel bit more “normal” after finishing treatment in Sept.
Jill
Hi all
Havent got L myself as didn’t get mx and apologies if I’m posting something you already know about. At a BCC event recently, I met Karen Friett who is chief exec of the lymph oedema support network at www.lymphoedema.org -just wanted to pass it on in case you hadn’t come across it.
Thanks Alesta, I did not know this site.
Tolliebelle, depending on the % of Lymphoedema, i.e how much bigger your affected arm is compared to your good arm, you might find that it is extremely manageable. Just make sure you look after your arm ( see my earliest post)
Hi Vercors
Yes have read your post thanks for the info it is only mild I think she said 15% so not bad, just disappointed I think as was told I was low risk although as with anything I know that is not a definite that you wont get something!!!
Am doing exercises as shown so hopefully all will be well!!!
Jill
Dear Jill,
Isn’t it frustrating how much mis-information/conflicting information/odd information that is out there about Lymphoedema? I struggle with what to do and who to believe, especially since the lymphoedema nurse in my area is so fabulously busy that she can’t see me very often.
I was so shocked when I realised that I hade it, and so unwilling to have to cope with it. I really did spend days crying, and it was made worse by the fact that nobody seemed to have much sympathy for me. A lot of “so what, at least you’re alive” vibes. Maybe because of that, in some respects it was worse than the BC diagnosis. Forever. Incurable. We can make it a bit better but… It felt like no news was good news for awhile. I am still feeling my way with this sleeve business. My Sigvaris sleeves are o.k. but the gauntlet on the black ones disintigrates within weeks of starting to wear it, which is a shame. I can’t imagine having a sleeve for six months. And I keep thinking perhaps a sleeve/glove combo might make more sense than the one piece gauntlet.
I know just what you mean about thinking you could at least try to put the whole nightmare behind you and make life “Normal” again–and then this. I will say that, for me at least, it has got much much easier in the six months since diagnosis. And I refuse to be a complete nervous nellie about every little thing. On the other hand, I HAVE had cellulitis, and I have heard that each attack makes the lymphoedema that much worse, which scares the heck out of me, so I am trying to be much more careful about doing the exercises, breathing, drinking water, and wearing the sleeve.
Hang in there, life is going on…
Quail
Quail
Thankyou for that! Yes I have found a lack of sympathy from people and I can understand to a point but this sleeve/glove is just so ugly!!! I know that sounds really silly but after being bald for so long and just getting decent hair style now this! Well I will stop moaning and try and get on with it at least you seem to be getting there 6 months on so there is hope for me lol. Have not had cellulitis
Am getting new sleeves next week that go down onto my hand and you stick thumb in? Is that a gauntlet? Also getting gloves? Do I wear both? I am sure it will be explained when I get there.
Went to work today with glove on I work in customer services so could see customers looking at it but obviously not wanting to ask and I really didn’t know what to do but kept quiet no one seemed to notice when it was just the sleeve ah well another thing to get used to!
There is an absolutely hilarious thread on the North American breast cancer dot org website in the “lymphedema” section titled “I was bitten by a shark”. All the comments the woment there wish they had said (or sometimes did say 
) when people asked them what was wrong with their arm. “Skydiving…” “Tango lessons” etc. One woman wrote that she said to some guy, “you should see the other fellow” and he replied, “he can’t look much worse than you!” So much for the clever riposte.
Meanwhile to add a sad note: wait till you see how dirty the glove/gauntlet gets. I have been wondering if a glove would be better 'cause I could replace just it. But the time I wore the sleeve alone, my fingers swelled up alarmingly. Sometimes it feels like I am overwhelmed by the “uglification” of breast cancer. I keep buying new clothes to try to spruce myself up! I envy you your long-enough-to-have a style hair, I’m still looking at about 1/2 inch–not good.
Quail
I got my first sleeve today …havent worn it yet have washed it and will wait til I see my physio on Thursday. No way am I going it to wear it all day every day! The sun is shining I’m in sleeveless stuff and I go swimming every day if it isnt actually raining…might wear it to go shopping or while I’m gardening or like now on the computer but if I’m just pottering outside I’m going to let the sun get to my skin…
Mary
Hi All
I got new sleeve today and have worn it all day in work with new glove. BUT it was really tight she did say it was tighter than my other one as that wasn’t tight enough but this is really making me feel like I am in a vice!!! Have come home and taken it off and all my elbow on the insode is really red and sore!
Is this right has anyone else had this I really do not want to wear it again! But she took the other one off me so I wasnt tempted!
Any advise greatly appreciated
THanks
Jill xx
Hi Jill,
I think that this is normal. Some of the websites I have read even suggest that you are supposed to build up slowly to wearing it all day, starting with a couple of hours, then gradually adding more. When I first began to wear mine, my “inner elbow” and between my thumb and index finger were red and almost raw. Now I’ve been wearing it for three months, it is much better, even when I’ve bought new ones they are not as uncomfortable. But I know some women never get used to it, and I know that different brands of sleeves work better or worse for different women (it’s that awful old saw: “everybody’s different” that they keep telling me). If you google “stepup stepout” or “arm sleeve proper fit” the “Step-up Step-out” lymphoedema site has pictures of properly fitting sleeves, so that you can see what a well-fitting sleeve looks like.
Anyway, you maybe should try to keep wearing it over the weekend and see if it gets better. One of the things I read (somewhere?) was that if the redness faded by morning, not to worry, but that if it persisted red or painful even when you weren’t wearing the sleeve to stop. But these sleeves are not supposed to be wildly painful, so it is reasonable if you have any questions about the fit you should phone the nurse and ask her to look at it. It strikes me that best practice would be for everyone to be fitted (and that means more than measured!) by a trained lymphoedema specialist, but clearly that’s a dream rather than reality.
Good luck, and let us know how you get on,
Quail
The inside of my elbow gets sore too, and i’ve been wearing them on and off for a year now. We only get 2 a year, I seem to remember, which isn’t much. At least they were fitted by a lymph nurse (expert). The Haven website have a brilliant exercise video for lymph which not just tells you what to do but WHY… which I find SO helpful…
I’ve been being “religious” about the SLD (before I get out of bed in the morning) and the exercises (usually before i leav the bedroom, but hey! I haven’t done them today yet!) and my arm’s getting worse, which is depressing. I think I might have upset it collecting 4 wheelchairs from the multi-story car park on Sunday (not one at a time!) and taking a patient out for a smoke in her chair… I had my sleeve on, so I thought I’d be OK. Like you, Vercors, I wear mine when gardening, ironing, driving far, when it’s swollen… and it WAS better in between, but I can’t get it down since I’ve gone back to work. I walk along the corridors (having breathed and shrugged shoulders) swinging the arms, but nothing much seems to help. I find that my hand swells if I’ve had the sleeve on too long in the day… almost as if the fluid can’t stay in the arm and it’s got to go somewher…
sigh…
Jane
Thanks Quail and Jane for your replies will persevere over the weekend and see how it goes. Oh the joys!!! I too have been doing the exercises and am not seeing any change maybe thats why they have given me tighter sleeve. Jane I got given a glove because my hand was swelling in just the sleeve and it is just as tight!!
OMG I am sooooo not liking this LD!!
Will have a look at those sites re fit - thanks
Will keep you updated
Jill x x x