lymph odema has got worse

Public Archive
21

Hi All especially S

I hear what you say about the sleeve and exercise & mozis. All I can say is I wore it at night in hot weather in Greece and had one small bite above sleeve. They didnt touch other arm at all. Too dried up I guess!!! But legs were covered! I did try DEET. I asked OH to put on arm. Unfortunately he decided to apply to sleeve! Effect, partly melted sleeve!

I didnt notice much swelling on holiday only when it hotted up here later. I still cannot see how sleeve can be worn effectively if the sweat drips off you. It seems like a sure fire recipe for cellutis. It must be a breeding ground for infection under an elastic sleeve in hot weather. At least with it off you can cool it down with showers and cool flannels.

I HATE the sleeve. I cannot see how physios who say wear it can really think most people will. Indeed I have met on holiday quite a few people who have been dx with lymphoedema and are not wearing one. Even those I have met with huge arms do not think it makes much difference. No one has ever commented or stared at my HUGE arm but they have the sleeve. As I am 3 stone overweight they probably think I have a fat arm anyway! I am trying to lose weight as I was told that not being overweight makes it easier to control. Is this so? For myself I find the SLD the most effective coupled with the exercises. The swelling increased when I thought I was ok and stopped massage and exercises! Oh and being careful what I do. I do not do vacuuming anymore. A Dyson is out of the question. Unfortunately when he retired OH decided to buy an upright Dyson. I couldnt lift it then, let alone after BC so he does all the vacuuming now. Otherwise I use a lighter cylinder vacuum. I look at the weight of all appliances before I buy now. It seems to me the same thing must apply to those with arthritis as well as bc.

22

Hi all,

I just wear my sleeve and try to forget it is there. I am going on holiday next week and i am going to have to go in a swimming pool either commando head or with a hat and pop my falsie in cozzie. I am not going to worry about it. I must say although i am getting hot flashes from tamoxofen, sleeve seems to stay dry. I think i look revolting nowadays but so what, i am me, my kids love me, my OH says he does, (BC really testing the in sickness and in health part of vows, I look a site and have absolutely no libido). This sounds like a bit of a whinge but really its just a grudging acceptance of the awfulness of this situation.

Would be nice if they did more research into lymphoedema and came up with something a bit more aesthetically pleasing than the stocking…
Bahons, Do you know if there are there any petitions or like that we can put our names to?

All the best
Linda

23

Hi there all

Sleeve wearing is total c**p, isn’t it???

Starfish, if your arm is really sweaty with a sleeve, can your clinic get you one with a higher cotton content? I’m sure there are some available. There is a tendency to issue people with the cheapest off-the-shelf sleeves available, which aren’t always the most suitable.

I think you’re right about a sweaty arm under a sleeve having skin problems - prickly heat could be a concern…

It is possible to get MUCH nicer sleeves than those available on the NHS. Softer, lighter fabric, attractive colours. I’ve got some Haddenhams Venex sleeves - a black pair and a white pair (as well as poo-coloured, aka ‘skintone’) and they are featherlight compared to, say, a standard Medi. They look more like the things you see professional sportsmen and women wearing, too - and attract FAR less attention.

You’re right about being overweight not helping. It means more mass through which the lymph fluid has to try to drain…

My OH bought me an upright Dyson, too, a few years ago. Unmanageable as far as I was concerned and, unless you live in a ballroom, impractical too, I imagine. Like you, I have lightweight cylinder one now.

Going back to sleeves…IMHO, if sleeve wearing is being vaunted as a way to reduce arms, it is cruel and misleading, particularly if an arm is really swollen.

Sleeves are really only good for stopping an arm getting worse or maintaining an improved arm that has been reduced in size by some other means, such as CDT or intensive MLD from a trained lymphoedema therapist. SLD and exercises can only help up to a point; after that active, trained intervention is essential.

What should happen with a first lymphoedema diagnosis is not only the issue of a sleeve plus demonstration of SLD and exercises, but also the planning and instigation of a concentrated programme of treatment to get that particular arm reduced as far as possible as soon as possible. The sooner it is tackled by qualified professionals, the more likely it is a significant (and more permanent) reduction will take place. After the course of treatment, the arm should be remeasured for a new sleeve, the SLD and exercises continued by the patient and regular follow-up appointments scheduled.

Now, hands-up those of us who got that? (Mine are down, btw! :-))

Linda - I started a lymphoedema petition myself last year and got over a 1,000 signatures (it covered both primary and secondary lymphoedema) before it closed. I think there is currently another one, for bc lymphoedema only, on the Downing St website. It’s a very unglamorous condition and doesn’t attract much interest, publicity or money compared to may other much less serious complaints.

It’s worth joining the Lymphoedema Support Network - the (only) UK charity dedicated to helping sufferers, as they sometimes have details of research, trials, etc. I do have a little bit of info’ on new techniques of treating lymphoedema if you or anyone else is interested (you’ll need to pm me with your e-mail address again).

Just checking the rant index for the above, no, pretty low, this morning, that’s good.

Take care all

X

S

24

Hi S

Your right. I too was not given a plan. Seen in December. Sleeve issued. Photocopy of SLD. Told special exercises of little benefit. Heard nothing further and at the moment i have no inclination to go back. If no better by end of year considering paying privately to see someone. I have been told there is a very good lady at Basingstoke Hospital who specialises in it. Does or has anyone had any knowledge of her?

25

Hi

Starfish, it’s interesting that you were told that special exercises were of little benefit. I’m not a great one for doing them myself (in fact, I don’t do them - always feel a bit of a twit), but there there are plenty of posts on here testifying to their effectiveness…I do SLD, I go swimming a lot, I’ve got a low level laser, an LSN stress ball and I’m good about wearing sleeves. For me, that’s enough time and effort (not to mention money) devoted to this beastly condition.

Your lymphoedema service should have told you that you will need new sleeves after 6 months; some of them rely on patients remembering for themselves and ringing up to chase them.

I haven’t heard about the lady from at Basingstoke, but - are you anywhere near Winchester? There is a private lymphoedema therapist there called Michael Villemin. (Can’t post the link to his website, but if you google simply ‘michael + winchester + mld’, his website with contact details is about the third or fourth return on the first page). I’ve not met him myself, but I believe a number of users of this site have been treated by him.

X

S

26

Hi Bahons and starfish

I too got a leaflet but it had written instructions for sld rather than visual. I think you need visual in order to do it correctly. The mld specialist i paid for myself showed me how to do it although i will get her to show me again when i go next week as i have forgotten some.

I might have to look at different sleeves. Although mine reaches to the top of my arm, it has cut in under and there are welts, which i cannot feel because i have lost feeling there. I too need to lose some weight but cannot until i have finished rads. Also, it may be difficult now i am on tamoxofen.

I will look at the downing street site and sign it and will pm u with my email again.

Linda

27

Hi

I got a photocopied leaflet once, many moons ago - the woman in the sketches (to use the word ‘picture’ would convey a quality of illustration that simply wasn’t there) had a beehive hairdo, as far as I could tell.

No-one ever showed me how to do them…

Linda, you might be doing what I sometimes do and trying to pull the top of the sleeve up too far. If I do, I get welts and then blisters if I’m not careful, as I too don’t have much feeling up there. Altho’ it seems a bit weird, I try to keep them just a fraction lower than feels natural…

X

S

28

Well girls if losing weight is good, I’m doing ok as been so ill for 3 days (?swine flu?), I have lost a load of weight! Hope this passes soon though as only 4 days till hol. Still not got my new sleeve and glove, very cross about this, but felt too ill to phone or call in today, lets hope they’re in by tue!

Thanks for help girls, really appreciate this.

Irene

29

Hi girls,

Last posting before i go on hols. Bahons,i signed the petition on downing st site. Re sld i just prefer to see things (kinesthetic learner - i am a teacher) to make sure i get them spot on.

You might be right about the sleeve, after checking out that website you told us about, decided my sleeve was too low so i had been pulling right up to top. Now need to go back a bit.

Irene, How has your doctor treated you? Have they given you tami flu? I was wondering as there was a suspected case at school i teach at and my gp said if i had a temp to go straight there.

Anyway off on hols tomorrow. Will be wearing my sexy sleeve at the disco (not).

All the best
Linda

30

Hi all

Irene - I do hope you’re feeling a lot better before you go on your holidays and that the sleeve turns up soon - it’s not a custom made is it?

Linda - hope you have a great time, too. Now I’m off to look up what kinesthetic learner means…

X

S

31

Hi Bahons etc,

Hope you are all well. I wanted to ask you a question. If i wanted to purchase the haddenham sleeves you mention, is there a site i can buy it from using my measurements? I was given a prescription for arm sleeves by the lymphoedema clinic which i duly passed to doctor who gave me one to take to chemist. Anyway, the new sleeves i have been given have no hand attached, ie end at wrist. I have tried wearing them but they cause my hand to swell up. I still have the original sleeve which i wear mostly. I thought i might get some nicer ones anyway, but cant seem to find a site that sells them.

I hope you can help me.

All the best
Linda

32

Hi elljaydee

Sorry to take a while to get back to you - work and visitors!

Sorry too to hear that your new sleeves are duff. Wonder which bit of ‘glove’ they didn’t understand…

You cannot order sleeves through the Haddenham site (but it’s worth googling ‘Haddenham Healthcare’ and finding it, because it does give contact details there - don’t think I can post them here). They WILL take telephone orders, but may need to speak to your lymphoedema nurse first to confirm the size and compression class required.

As for other sites for sleeves, try this thread:

community.breastcancer.org/forum/64/topic/736556

and/or

www dot stepup-speakout dot org

Both of these have links to sites (mostly in America) where you can buy nicer sleeves.

Hope this helps…

X

S

33

Hi

Thanks Bahons, your help and knowledge as usual appreciated and i have just read your comments on the gym thread, well said. I still go to the gym but use light weights and wear my sleeve and follow the exercises given to me by a physio a while back.

All the best
Linda

34

Hi Elljaydee

Sounds as tho’ you’ve approached the whole gym/weights business brilliantly!

Good luck with the sleeves - this time of year, especially, I think we definitely need something just a little bit less ugly. (Good for morale).

X to all

S