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Lymphoedema Questions

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Re: Lymphoedema Questions

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elinda45
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Re: Lymphoedema Questions

Hi Queen

The forum can be a great support and the lymphodema gang certainly is.

It might be worth having a look at The Haven to see if they can offer you anything:

http://www.thehaven.org.uk/

If I lived in London I'd definitely go - if not for lymphodema advice then just for general support. It looks wonderful.

I don't have regular massage as it's not on NHS and my lymphodema is very mild and well controlled. I simply can't afford to pay for it myself on a regular basis. I take it it's not offer to you either on the NHS?

Sometimes charities do offer massage as part of their service. I'm afraid I don't actually know of any but you could ring the helpline. Others here may be able to help more. Elinda x

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Re: Lymphoedema Questions

I have lymphodema on both arms. I had my second mastectomy last year. One arm is a lot worse than the other. I have just joined the forums, and do feel better reading that others have problems with ill fitting sleeves. In the last year I have had 6 sleeves prescribed all too tight. I am so very frustrated. I live in London. Any ideas please? Do you have regular massage?

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Re: Lymphoedema Questions

It is interesting how we all seem to have been given different advice and treatment etc. Seems to be very dependant on the area you live in and your particular lymphoedema nurse etc.

I have mildish lymphoedema , but the problem is that it is from elbow upwards and onto chest and neck, so wearing any sleeve pushes the fluid even further up. My nurse told me that there are corsets available, but thinks that at the moment I could do without as long as I do the regular exercises. I also swim regularly and find that really brings the swelling down, particularly back stroke and apparently it is very good exercise for this conditon as it uses all the muscles and distributes the fluid evenly around the body. As I had a mastectomay, I have also developed quite severe problems with scar adhesions and lymph cannot travel across scar tissue, so self massage technics are important. My nurse visits once a month and in between my husband or I do the massage that she showed us. When walking I use a pole as well, as my hands swells up otherwise.

I recently developed tennis elbow on the affected side and had to have a steroid injection, much to my GP's reluctance, but it was the better of two evils, and thankfully I have not developed any infection.

By the way I always travel with antibiotics and antihistamine and always wear the sleeve for travelling by air or in the car.

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elinda45
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Re: Lymphoedema Questions

Good tips, thanks Norberte. All great for at home but hard when you're out for the day isn't it? Must get some of the cold gel packs - that is a good idea. Elinda x

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elinda45
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Re: Lymphoedema Questions

Great thanks Hymil

Anyone been having problems in the hot weather? I had to remove my sleeve for some of the time last week as it was digging in badly. Now it's cooler the sleeve seems fine. I am the sort of person that swells up with heat anyway (one reason I've never worn rings) and on top of the weather have been having terrible hot flushes. Elinda x

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Re: Lymphoedema Questions

Another UK online Mediven sleeve supplier: http://www.cozmedix.co.uk/index.php?route=product/product&path=38_127&product_id=101

Lindisfarne, I am jealous! When is it warm but not midge-ridden?

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Re: Lymphoedema Questions

Chinook wrote "Best thing I do is use a walking pole when out for a walk. If you keep the poles quite high, the hand doesn't hang down and therefore doesn't swell. Ive tried using just one pole on bad arm and the good arm actually swells more because its without the pole."

Thanks for this advice. This week I went to Lindisfarne and walked all round the Island. We were walking continuously for about 5 hours and I used a walking pole. No swelling at all. Just wish I had used it again the next day whilst having a gentle stroll around Whitby as after only an hour my arm and hand was feeling really tight. Still, at least I know an answer to the problem.

I should be getting my first sleeve next week, once Boots ring me to tell me it is in stock.

Caroline

elinda45
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Re: Lymphoedema Questions

Thanks very much, that's helpful. I'll try my nurse first but good to know that I can buy a mediven sleeve in the UK if needs be. Elinda x

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Re: Lymphoedema Questions

Mediven: "John Bell & Croyden" in Wigmore St central London. They are very helpful and have an LE fitter but she only works part-time so phone first. phone 0207 935 5555. The lady in the Nicola-Jane mastectomy shop in Clerkenwell told me about them. website is http://www.johnbellcroyden.co.uk The LE sleeves don't seem to be in their online shop, but they had them on the shelf when i was there in January and can order other sizes, so i would go the phone route if you are sure about the size.

There was another UK site i found for mediven but they would only sell to NHS suppliers LE nurses/GP practice nurses etc. I forget their name, sorry. I think it may have been Haddenham who also do the kinesio=tape? In principle you can order from anywhere in the world, although i personally would be wary sending my bank details abroad. Other people here have ordered the pretty lymphediva sleeves from the USA and had them arrive within a week. Next time you are in Germany....

I think we are supposed to be entitled on the NHS to two sleeves every six months, they don't last for ever as they are elastic and need to be washed daily. And if you have lost or gained a lot of weight they would need to be replaced before then due to sizing.

elinda45
Member

Re: Lymphoedema Questions

Thanks very much Mel and Sarah - I didn't know about the 6 month life of the sleeve but looking at my sleeve now that seems right.

I'm going to ring my nurse to see if I can get a couple more. At least I know now that my request is not unreasonable. Elinda x

sarah68
Member

Re: Lymphoedema Questions

Hi Elinda,

I've got 4 "heavy duty" sleeves as my LO is quite bad and I get them sent through my lymphoedema clinic. I've been having the heavier ones now for about 16 months, I'd guess,and before that, various other combinations. I think that each would need replacing after 6 months,( though I just add to my collection!) as they probably lose their effectiveness. I'm sure Mediven is a German company, though don't quote me on that! Maybe you could get them from a kind of general surgical supplies kind of website. Perhaps give your bc nurse a ring or contact your lymphoedema clinic if you have one ? I would guess they are quite expensive to buy yourself. Sorry if this isn't much help;hope you get some answers.

All the best, Sarahx

stressy_messy
Member

Re: Lymphoedema Questions

Hi elinda, I have appointments every six months with my lymphoedema nurse and get two new sleeves each time.She said that the sleeves only have a life of about six months then need new ones.

Melxx

elinda45
Member

Re: Lymphoedema Questions

Can I ask how many compression sleeves others have been given on the NHS?

I've got two but one needs replacing even though it's only about 6 months old. I wear that one the most and keep the other one for best. Problem is it's not fitting so tightly now and the colour has faded.

I don't even know if i can buy this myself as it's made by Mediven and I can't find a site where they have them for sale in the UK.

Elinda x

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Re: Lymphoedema Questions

hymil...your "entry level swelling" I like the wording very much. I will be using that phrase myself.

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Re: Lymphoedema Questions

What a great idea chinook, i will dig out my sewing box and my specs and see what I can come up with. I had a similar thought about ribboning my LE sleeve. I love to visit Scotland too, but o-boy do they have super-beasties.

Yes i have seen some awfully swollen LE limbs too. I feel sorry for the ambulance staff in these situations as well as the patients. Its really scary and actually that is why i am so keen to get my entry-level swelling dealt with, even if it means putting up with big changes for little symptoms.

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Re: Lymphoedema Questions

Hi Hymil
I made myself 2 half tops. One was the sleeve and neck from a t shirt to stop midge bits in scotland and Norway. The other a polo neck fleece again leaving sleeve conected to the neck. This was to keep my arm and shoulder warm as it was sensitive to cold after the surgery and radiotherapy. I wore a pink ribbon on each to give those people who thought I was a bit mad a bit of a clue. I know these are not compression garments but just reiterating that sometimes we have to invent stuff ourselves to solve our problems.
I was feeling sorry for myself till I saw program last night about the new ambulances for morbidly obese people and saw a women with horrific lymphadema in her legs.
Regards Chinook

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Re: Lymphoedema Questions

Yes my sleeve is also anchored at the top by velcro that folds over the bra strap. Before that I had one that kept sliding down my arm and also the swelling was mostly upper arm so the shorter sleeve wasn't doing a lot. Unfortunately this method of stopping it slipping down, somtimes results in pulling the said bra-strap off my shoulder, :oops!: taking false boob with it :aaarrrgh: so have to have it tighter than i would like.

Ideally i would like a thing like a diagonal-half of a long-sleeved teeshirt, coming down to my knuckles on the LE arm, up over the shoulder, flat and compressive over my mastectomy scar area, chestwall, axilla and shoulder region, then with cut out for the boob i still have and possibly off that shoulder, no sleeve on the good arm but fitting round my waist at the lower level. Hmmm, i must work on that idea.....

elinda45
Member

Re: Lymphoedema Questions

Hi all

This article really helped me to understand more about exercise and lymphodema. It relates specifically to weight training but answers some of the questions that I couldn't understand. Hope this might be helpful.

http://lymphnet.org/d/?q=node/2

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Re: Lymphoedema Questions

Caroline...well done on your success at the comp plus meeting that lady must have inspired to continue in your hobby.
Things seem sooo conflicting, I am so confused, I dont think the experts really know. Dragon boating "has proved to have benefits for women with lymphedema" and yet it looks a strenuous pulling action and repetitive!! I think i will continue my aerobics (seems boring and safe compared to most on here..lol) I think the trick is dont do anything you previously couldn't do and avoid injury.
On the one hand excercise increases the lymph into the arm and thats not good. On the other hand, it helps the muscle push the lymph back up the arm back into the system and that is good!!!
It is always interesting to read what people do, it is only us that really know, and we learn from each other.
good luck all x

sarah68
Member

Re: Lymphoedema Questions

Thanks for replies and PMs re: bandaging. It is really good to know it causes good reductions in the arm - I didn't realise you couldn't bend your arm with it on though, Aroma. That's useful info.! GYWN59 -great that exercise has helped you - I'm going on hols to Cornwall next week and we will be swimming in pool at park most days - I'll see if that helps and will continue it definitely. One question - what is Dragon boating?? - it sounds like something Viking-ish!

Thanks again, Sarahx

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Re: Lymphoedema Questions

My lymphodema is mild mainly around elbow and upper arm. Ihave to say exercise is the one thing that helps whether because the arm is working or the fact that weight is being lost!! Dragon boating is a repitive action but has been proven to really benefit women with lymphodema in decreasing effects. I started it a few years ago and was hoping to get a group together for women in south/london area who have had breast cancer but not much interest. I had noticed my arm had reduced whilst doing that sport. Swimming is also great for me as well

aroma
Member

Re: Lymphoedema Questions

re bandaging ,i have had that with massage and i can say i found the bandages a bit uncomfortable to wear as i couldnt bend my arm but it reduced the swelling and my arm is still doing ok 4 months later ,only drawback is not being able to wash the arm !! smelt a bit when i had it removed !

aroma
Member

Re: Lymphoedema Questions

re sleeve rolling down ,ive been prescribed ones that attach to the bra straps ,this helps as it dosnt roll down maybe your nurse can get you some ? its worth asking .
cant say i like the colours of them though ,but have got a black one which has a grip top again worth asking for .x

elinda45
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Re: Lymphoedema Questions

Caroline - that's fantastic well done!!!! You're an inspiration. How encouraging to also meet someone who wears a sleeve and can continue with Taekwondo. Elinda x

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Re: Lymphoedema Questions

I have lymphoedema in my right arm and hand. This is a result of breast cancer a year ago. I also had breast cancer 14 years ago and had lymphoedema in my left arm that time. I have had two sessions of MLD and my medical insurance will pay for six more. I have had my arm bandaged both times. The bandaging is way better than the sleeves. It is firm but comfortable and makes a lot of difference. This time I only kept it on for a day or so and then used the sleeve. I hate the sleeve with a vengenance. It rolls down at the top of my arm constantly. It does seem to reduce the swelling in my arm but not in my hand which is hard and solid.

I must admit I feel fed up with it. You get over the surgery, chemo and radiotherapy and then have to put up with this which is miserable. Can anyone help about the sleeve rolling down, please? Also my hair has come back curly and I don't like that either!!!

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Re: Lymphoedema Questions

Sarah & Andie

Thanks 🙂

Sarah, don't worry about joining this thread. I was concerned that you didn't seem to be getting any answers. Hope you get help from others.

Caroline

sarah68
Member

Re: Lymphoedema Questions

Hi Caroline!

Congrats on your win today - so good! Yes, I'll start another thread - sorry to jump on yours with both feet! I didn't read it all properly and thought it was a kind of general lymphoedema thread. Thanks,

Sarahx

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Re: Lymphoedema Questions

Hi caroline

Just jumping in to say hearty congratulations on todays acheivement.

Andie

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Re: Lymphoedema Questions

I have been to a Taekwondo competition today. I managed to win a Gold and Silver in the English Championships, which is great. But even better I met someone there who has had lymphoedema for 6 years and she still trains, instructs and competes. She wears a sleeve much of the time, but she says it doesn't cause her much problem. It has definitely given me the boost I needed.

Sarah, it may be worth starting a new thread with bandaging in the subject. Others may notice it then. Sorry I can't help you.

Caroline

sarah68
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Re: Lymphoedema Questions

Thanks, Elinda!

Anybody there???? (have exp. of bandaging) - knock 3 times on the table! Not looking forward to it as I have a bit of a hand-washing fetish!

Sarahx

elinda45
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Re: Lymphoedema Questions

CMW - there are different types of sleeves. I had to try a few before I found one that worked for me. I have an all in one sleeve/glove as my swelling was mainly around wrist area. I found when I wore just a sleeve it made my hand go a bit puffy so I switched to the all in one sleeve/glove.
You can also have a sleeve with a separate gauntlett.

Bandaging - Sorry Sarah no experience of this but I'm sure i've seen this mentioned before. Hopefully one of the others can help with this.

Elinda x

sarah68
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Re: Lymphoedema Questions

Hi all!

Anyone had experience re:bandaging? - see my previous post.
Thanks,

Sarahx

elinda45
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Re: Lymphoedema Questions

Your very welcome - hope it will help. Elinda x

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Re: Lymphoedema Questions

Elinda

I decided to give my bcn a ring. She has agreed that I should have a sleeve fitted for taekwondo. Thanks for suggesting it.

Caroline

sarah68
Member

Re: Lymphoedema Questions

Hi all!

Saw the lymph. nurse at hospital clinic yesterday and my lymph. is getting worse very quickly - 62% bigger on lower arm and, I think, 30% on upper one - quite bad IMO! She thinks it's to do with damage from rads (2nd lot) last year causing a lymph blockage. Anyway, I've been given some deep, firm (and painful!) massage to do on the affected areas - what with exercises, SLD and the compression sleeve, this is starting to be like a daily part-time job! She is also very keen to do bandaging, which I'm having done over a week (3x) after the half term hols.
My questions are to everyone out there - has anyone else had this done and did you get a permanent reduction after the 24-hour sleeve wearing period, which she said was for 6 weeks ? And, has anyone else had this rads. damage and what were you advised to do? Feeling a bit cheesed off with it all TBH!

All the best, Sarah.

elinda45
Member

Re: Lymphoedema Questions

I think the fact that you do Taekwondo would be another good reason to have a sleeve, if only to wear during that. Did you tell your BCN about it?
Completely understand about wanting to achieve your goals. The physical problems are one thing but it's easy to forget the psychological impact of BC. Good for you! Elinda x

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Re: Lymphoedema Questions

Thanks for all your replies.

I have spoken to my taekwondo instructor tonight and she thinks I can adapt things so that I don't overdo things on my left arm. I don't want to think about giving it up completely as I am due to take my black belt in October, and it is the goal I set myself whilst I was having chemo.
Thanks for the tips. I will give the walking poles a try or try to remember to put my hand in my pocket.

Caroline

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Re: Lymphoedema Questions

Ive got lymphodema mildly too. I wear a sleeve if I'm having a hard day ie. alot of arm work such as washing down tiles in bathroom or putting up displays at school (although I no longer have to do this) Best thing I do is use a walking pole when out for a walk. If you keep the poles quite high, the hand doesn't hang down and therefore doesn't swell. Ive tried using just one pole on bad arm and the good arm actually swells more because its without the pole. My rings always did feel tight on long walks. (4hrs) even when young and thin. Best thing to help it if it does swell is lying down with hand on a pillow. These days after about 10k I need a lie down anyway.
You learn what to avoid.
Regards
Chinook

elinda45
Member

Re: Lymphoedema Questions

HI Positivethinker - hopefully that might make a difference. It was my lymphodema nurse who told me no more than ten minutes.

I've learned so much from this forum, it's fantastic. Elinda x

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Re: Lymphoedema Questions

Hi Elinda
I used to do 40 mins a day, then reduced it to 20 for that very reason. Thankyou for mentioning that about the 10 minutes only, I will do just the LD excercises for now and give the other stuff a break. That is the very reason I appreciate this forum.
Cheers x

elinda45
Member

Re: Lymphoedema Questions

I would echo what Norberte says in that you would benefit from seeing a specialist lymphodema nurse.

I have to say I'm surprised she hasn't given you a sleeve or more information. My lymphodema is very mild but the nurse said it was about getting it under control before trying to go without the sleeve and just self lymph drainage (something else you need to be shown) and exercises.

It may be worth you getting the DVD produced by the Lymphodema Support Network: http://www.lymphoedema.org/

The other place that has some great information is The Haven in London. I don't know where you live but if that's viable you could try there. They have a good fact sheet, although it's about risk the same applies:
http://www.thehaven.org.uk/sites/default/files/EJ%20Lymph%20at%20Risk1.pdf

Personally I wouldn't do anything like taekwondo until I'd seen a specialist.

Positivethinker - as I understand it, any exercise using the arms will increase lymph and could exacerbate the problem. That's why they recommend only 10 minutes of lymph drainage exercises.

Elinda x

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Re: Lymphoedema Questions

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Re: Lymphoedema Questions

Hiya
Sorry you have to join in on this. I too have it mild, but it is in the wrist and hand, which is more noticeable and as far as i am concerned, harder to shift (it has been 3 months, no change)
The puppet above your head wont do any harm at all.
It may be that you notice the swelling when walking because you have your hands hanging by your side. perhaps try walking with your hands in your coat pockets.
Punching and hitting is a definate no-no. Surprised you werent told to avoid that by your BCN in the first place after your op!! I do combat/ boxing style aerobics, which is quite dancey and am punching nothing but air and that is not sudden, quick or jerky or repetitive.
Be kind to yourself and do the excercises the nurse recommended. I wouldn't have thought they were enough. I have sleeve and massage too.
Good luck x

Louise_BCC
Member

Re: Lymphoedema Questions

Hi there Caroline

I'm sure others will be along soon to offer information and advice for you, but in the meantime, we have a couple of publications which you might find helpful to read. I've given the links below, they can be either downloaded or ordered through the site:

Living with Lymphoedema

http://www.breastcancercare.org.uk/upload/pdf/bcc5_lymphoedema_booklet_largeprint.pdf

Reducing the risk of Lymphoedema

http://www.breastcancercare.org.uk/upload/pdf/Web_Reducing_risk_lymphoedema.pdf

Hope you find this information useful.

Best wishes

Louise
Facilitator

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Lymphoedema Questions

Can anyone answer some questions for me?

I was diagnosed with Lymphoedema yesterday. It is only mild and the bcn is confident it can be controlled with the exercises she has given me. She has said I don't need a sleeve as it is not too bad. I have been noticing swelling when I have been out for walks.

I know that I shouldn't carry heavy weights on the effected side but other than that I don't know much else.

I am part of a small puppet group. Is it ok to carry on with this? They are hand puppets and I have to hold my arm up above my head for the length of each song. I can't use the other arm as I have a shoulder problem.

I do taekwon do, which involves a lot of punching and hitting pads. Is it ok to carry on with this?

Is there anything else I should know?

I know it's not life threatening but I am feeling really down again today and maybe knowing if life can go on as before it will help.

Caroline