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Positve results from manual lymph drainage?

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Re: Positve results from manual lymph drainage?

Just popping in to say hello!!
Have been wearing sleeve and gauntlet all of the time and after the first few times of "baring" arm, find that I don't care any longer and have even wore a sleeveless top! Self concious at first then just thought what the hang, have got it so must deal with it!
Hope you are all enjoying the sunshine, take care and have fab holidays xx

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Re: Positve results from manual lymph drainage?

I was disappointed by the clothing section in Vita magazine. Although it showed loose kaftans, they don't suit all body shapes, and I often find the neckline too low (having had double mx). Also expensive if you need something to wear every day of your holiday. I was hoping they would show more on how to keep cool and keep arms covered.

I went away at the end of June for a city break and it was about 33 degrees the whole time and very sunny. I managed surprisingly well. I took a water mist spray from Boots (not the cooling one just the saline aerosol as I wasn't sure how the other one would affect the sleeve) and I regularly sprayed this on my arm. It did really help to cool it down. I decided to brave it wearing t-shirts which I find more comfortable but had to get ones I didn't particularly like for a slightly longer sleeve ie. not a cap sleeve. I hate that gap between the top of my compression sleeve and a cap sleeve. I then put factor 30 on my good arm so it didn't get too tanned.

I struggled to find t-shirts with a longer short sleeve that didn't have a wide gaping neck - who knows what M & S are doing with their t-shirts. Would love to see some campaigning on clothing. I came across a lupus site where they have issues with keeping out of the sun and the same discussions on where to find clothes in the summer. There is clearly a market.

My hand on my compression sleeve arm looks hilarious because I have very brown fingers and then pale from knuckles upwards. Very difficult for those of us who only have to look at the sun to tan to actually prevent tanning. Oh well, life's never simple with lymphoedema.

I have to say that while in Italy not one single person stared at my arm in the sleeve - well, that is except one English tourist sitting near us in a restaurant. She couldn't take her eyes off it as I passed. Not one Italian did that - amazing! I saw one young guy glance at it in passing that's all. How refreshing!

the flight and hot weather seemed to have a minimal impact on the swelling which was a relief. I did take antibiotics with me just in case but had to explain to the GP about why. He told me I was at no greater of infection having lymphoedema so I had to point out this was wrong and had printed off some info also about which antibiotics I needed. After that, there was no argument.

Elinda x

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Re: Positve results from manual lymph drainage?

Very useful information especially about the islamic sleeves on eBay. I have ordered some tonight as I am very concious of my bandage coloured sleeved arm compared to my slim bronzed arm at the moment! I am seeing my Lymphoedema nurse this month and will be asking if they have a "Lymph-assist" machine available to try. A facebook friend has had great results using one of these. Anyone else used one? I believe that they cost £400 to buy - well worth the money if it brings lasting results.
Reconstruction surgery at the end of March resulted in my hand swelling up like an inflated rubber glove. Flying to Spain last month affected my arm and hand even though I wore my sleeve during the flight. Flying again in September to Greece - hope it doesn't affect my arm for the entire holiday!

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Re: Positve results from manual lymph drainage?

Hi Quail

Glad the breathing info was helpful.

You're right in terms of lymphodema about swinging the arm but, its a weigh up as always. The pain I had in my shoulder was so severe that it was badly affecting my quality of life. My nurse also recommends putting your hand in your pocket but it tends to 'freeze' the shoulder in place again and quite honestly I don't have pockets as such in my summer clothes. Strangely though, when I having all the physio - massage, acupuncture, swinging my arms, joint manipulation etc - my lymphodema reduced dramatically to zero.

For longer walks or hikes my nurse recommends those nordic walking sticks . I'm going to try that.

Not sure how I'll cope in the tremendous heat of our city break abroad - it will be a test to say the least. Next time, no city breaks and just somewhere with the beach or a pool. We booked it when it was so cold that we'd forgotten what it was like to feel warm let alone hot!

Elinda x

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Re: Positve results from manual lymph drainage?

Elinda your advice about the breathing was EXCELLENT. I feel like I know what I'm doing now. Thank you, thank you.
My bcn told me NOT to swing my arms, but to keep my hand in my pocket. Now she may not know what she's talking about--she is not always a fount of all knowlege, but just something to ask your own bcn/physio.
Yesterday's heat here in Manchester was not too good for me--my arm was fat as a pig, but today it seems to be better. And it's one thing to wear the arm sleeve in the winter--yesterday I had it on with short sleeves and felt VERY self-conscious. I wish I had a white one, although I can imagine what the mitten would look like : (
Floaty cardys sound pretty!

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Re: Positve results from manual lymph drainage?

Smiled elinda, as people being helpful is a positive!
The sleeve may have been short for you as it just reaches the top with me and I'm 5' 4.
Am waiting for follow up appoint with Mac physio but will see BCN next week so may ask her to see if I can be seen sooner. You just keep thinking it will ease or go away.
Your advice is very helpful, I do feel kinda rigid, shoulders tight etc, will try your tips, many thanks!
Have a lovely holiday xx

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Re: Positve results from manual lymph drainage?

Hi Katy

Thanks for asking. Yes, I have got the courage to show my sleeve and will be doing so when I go on holiday. Yesterday, I went out with my arm fully bandaged. It's amazing how helpful people suddenly become!

I decided against those sleeves (religious) because I have very long arms as I'm tall and the main issue for me is that bit at the top of the arm where the sleeve stops and I get a bit of a bulge effect going on. I've put some T-shirts that don't have cap sleeves. In the evenings when I'm away, I will still wear my lovely floaty cardigans.

Re shoulder pain - I think it would be a good idea to get a physio referral and you can do this through your GP. The sooner the better in fact as I let mine go on for too long. If you have the money, then you could go privately and get an appointment straight away - I had mine through the Nuffield hospital (after having NHS treatment first). It was expensive but it drastically improved the pain for me so was worth every penny and they took more time to look at the cause at the problem than the NHS physios who were all about 'treating my shoulder' not looking at me as a person, the causes, how I was walking etc. I also had acupuncture in my shoulder by the NHS physio as my pain was so bad. For some people, that can be incredibly effective.
Make sure that you aren't holding your arm in when you sit or stand - actively relax it. Swing your arm when you walk. Try not to hold any rigid postures such as thinking you must hold your shoulders back - this causes strain. I get my husband to massage around the shoulder blade at the back and massage any lumps and bumps out. This can really help relieve the pain for me.

Elinda xx

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Re: Positve results from manual lymph drainage?

elinda, how did you get on?
Have the courage now to wear sleeve and gauntlet out and about! Had to convince myself constantly to stop hiding, it's not going away and it is what it is.............
Still having shoulder pain, it's a constant ache, can I ease it in anyway? xx

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Re: Positve results from manual lymph drainage?

Thanks katy, I think I'll give them a go. Hope they'll be long enough as my compression sleeves are longer length - I'll have to measure my arm length!

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Re: Positve results from manual lymph drainage?

It's elasticated at top so it went right up to the elasticated bit on my sleeve so wrist to top of sleeve am sure it says it can stretch to 17 inches, doesn't cover gauntlet though. It's like wearing a stocking on your arm! xx

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Re: Positve results from manual lymph drainage?

Thanks for the link - those are really pretty. But how far up to they go and how do they keep up? For example, can I wear a very short-sleeved t-shirt with them?

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Re: Positve results from manual lymph drainage?

Am right handed so use arm all the time, not for carrying things etc, it may well be that even though I use arm I am still being a bit guarded therefore the pain.Thought it maybe the arm feeling so heavy drags the shoulder in some way? Also have a bit of ache rib area, down the outside, am assuming all related in some way. Had a lumpectomy and am almost 2 years down the line. Sound like a right hypochondriac!
The site is ebay uk and the seller is

Ladies Women Full Arm Prayer Cover Fancy Sleeve Opera dress Evening Fun





xx

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Re: Positve results from manual lymph drainage?

Forgot to say thanks for that about MLD - I forgot about the retraining the lymph to drain elsewhere.

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Re: Positve results from manual lymph drainage?

Katy - the deep breathing. Don't do it in the morning if it makes you feel like but make sure you do it on an empty stomach!
This is how I do it. Lie down and put your hands on your stomach. Exhale completely so that your stomach goes right in. Now slowly breathe in through your nose for the count of 7 filling your stomach with air so that your belly pushes out but your chest doesn't. Then slowly exhale to the count of 11 so that your stomach goes right in again. Try to do this about 20 times or as much as you want. By putting your hands on your stomach you can check that your stomach is pulling in on the exhale and pushing out on the inhale. The idea is to completely focus on the breathing. It can take a bit of practice. Let me know how you get on!

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Re: Positve results from manual lymph drainage?

I have found this link to research that is going to be conducted to look at the effectiveness of MLD. Very interesting background to all this if you'd like to read:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065438/

I have e-mailed the lead author to see if they have any results yet. Will let you know if I hear anything.
Elinda x

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Re: Positve results from manual lymph drainage?

That is really helpful, Elinda about the shoulder and how you held your arm--that's what I DO!!!! So I'll work at relaxing it. Now, I can't figure out how to do the deep breathing--or, more to the point--how do you tell if you're doing it right? Plus, I try to do it in the morning and it makes me fall back asleep after about three breaths, which is, I know, NOT the point.
When I first got lymphoedema I thought I would only wear the sleeve occasionally, but if I go very long at all I can feel it start to swell and I have to put the sleeve on right away. Makes me sad if and when I think about it.
About mld--supposedly the point is to "re-train" the lymph, so it is going to your other lymph nodes rather than trying to get out of the ones under your arm, and when it can't giving up. It feels like hocus-pocus, but then all these things do a bit.
x

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Re: Positve results from manual lymph drainage?

Shoulder pain - I've never found that meds have helped. I had a lot of NHS physio for shoulder pain which helped temporarily including acupuncture (by physio in hospital) and then it came back. Then I paid privately and saw a physio that specialised in chronic pain (I was 2.5years post op by that point and had had pain since then).
She really helped me and one of the key things was by watching how I moved rather than just treating me as a 'shoulder'. She saw that I was holding my arm in all the time and also not swinging it as I walked. What I was actually doing without me noticing at all was slightly raising my shoulder. She said that this caused a huge strain on the muscles in my shoulder. So rather than trying to hold what might be considered a good posture she wanted to me to keep relaxing the shoulder and making sure I didn't hold my arm in when walking, standing or sitting and to actively swing it as I walk. She also stopped me doing most of the exercises for shoulders because it was making matters worse by stressing the muscles. I had a massive improvement in pain level as a result of all those things. She said I will always have some problem because of the surgery (if you've had a mx they remove so much muscle in the chest) but that I should be able to self manage which I do now. She also encouraged the deep belly breathing because it calms the nervous system and this in turn helps reduce pain - try 20 per day.

Quail - thanks for asking - I don't know if the MLD has helped. I think the arm looks a little better at the top but below the elbow is still swollen. I'm still not sure of the point of MLD. Is it supposed to reduce swelling or keep the tissue soft?
Have an appointment in a couple of weeks for my husband to be shown the bandaging. Can't wait to start that. My arm is uncomfortable and feels tight when I take off the sleeve.

Katy - could you put a link up to the sleeves you mentioned please - i can't find the one in colours. Thanks.

Elinda xx

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Re: Positve results from manual lymph drainage?

Thank you Quail, am doing exersises and wearing sleeve and glove nearly all day, until bedtime, do notice that ache lessens when wearing sleeve etc but it doesn't go away. I don't think my arm looks that swollen but I do have patches where it's obviously swollen and noticeable. Still feel so very new to all of this..........do you have meds for shoulder pain? I take diclofenac for something else but it doesn't help the shoulder.
Also if you have obvious areas would that benefit from MLD?
Will now carry plasters and antiseptic, thank you for your help, to a newbie the advice is invaluable xx

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Re: Positve results from manual lymph drainage?

Hi Katy, about shoulder pain: 1) if my shoulder is swollen it aches, so getting the swelling down (and keeping it down) is really important to me. My arm always looks 'fat', but most of them time it doesn't feel fat; if for some reason I get a flare-up, it looks REALLY fat and aches. I do think the sld that I do helps, although it doesn't feel like it. I have also found that the Haven excercises help me to keep movement in my shoulder. It hasn't been "right" since radiotherapy, but it usually doesn't pain me these days unless I am really waving it about.
Elinda, did the MLD help?
Glad the sleeves are nice, I keep meaning to go on-line to look for them. Now it's getting (supposedly!) warmer, it is more important to have a way to look less like I've broken my arm. My OH pointed out that I now hold it as if it were broken or injured--I try to remember not to, but it seems to be the default. Curses.
I too carry antiseptic and plasters with me--I first realised I had lymphoedema when I developed cellulitis, and it is scary and unpleasant--and often makes you feel a bit like you have flu. I hadn't thought about those wipes, I think I'll get some for when I go on holiday.
x

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Re: Positve results from manual lymph drainage?

The sleeve covers arrived yesterday, really pleased, covers all of arm but not hand, looks pretty and the best part is will now be able to co ordinate because lots of different colours on offer!
Anyone have any advice on shoulder pain?? Would be so grateful xx

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Re: Positve results from manual lymph drainage?

Hi All
re. the massage ball- you literally roll it up and down and around your hand, arm etc. I was advised to use a gentle pressure only, but to be honest, when I see the back of my hand is going firm (do you know what I mean, less puffy and liquidy and more firm), I do apply it quite firmly!!
I have just bought 50 per cent DEET insect repellant from Boots, but not sure about the DEET..........no more natural alternatives?
I havent opened the link. But just to say I have a 2-week supply for antibiotics. My consultant said this would be the minimum required.
In terms of swelling, I don't know what grade I was, but do know I lost 1,000 mls of fluid after the treatment, and have lost a bit more than that.
Rattles

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Re: Positve results from manual lymph drainage?

Rattles - you mentioned the spikey massage ball. I've got one of those but don't know what to do with it. Can you advise? I'm getting a bit of a problem in my hand but it's not bad and I'd like to keep it that way.

Katy - this is info on cellulitis:
http://www.nhs.uk/Conditions/Cellulitis/Pages/Introduction.aspx
Basically, it's a nasty infection so that's why we have to be ultra careful about cuts, insect bites etc. Because our lymph isn't draining properly, we are more at risk of developing than other people. That's why it's advised to take antibiotics with you on holiday so that if you see any signs of infection you can nip it in the bud very quickly before it develops into cellulitis. If you're at home obviously don't wait if you see signs of infection and get an urgent appointment wiht your GP. Also always wash any cuts/bites - use an antiseptic spray or cream and keep the wound/bite covered. I always carry an antiseptic wipe and a plaster with me wherever I go. You can buy the wipes in the first aid section of Boots, Superdrug etc.

Elinda x

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Re: Positve results from manual lymph drainage?

I have been diagnosed with grade 2 lymph, it seems in the uk you are graded 0,1,2,3,4. I thought I may have it as had two small patches one on my hand and the other below my elbow joint. After being measured it was only then that I found out it was my whole arm, so that was a shock. I also had a sore shoulder and heavy feeling arm.
The coloured sleeves, I found them on ebay! Was looking for arm sleeves/covers etc and up popped these islamic modesty sleeves, liked them because they are plain and you could mix and match. Not expensive. Will order a couple today.
Cellulitis what is it and why would you get it? xx

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Re: Positve results from manual lymph drainage?

Sunburn!!! Avoid sunburn--theoretically (who would know who hasn't left the country) you can burn through your sleeve, and I think (someone confirm?) that the lymphoedema arm burns more easily--so you want to wear sunscreen during the day, and if you are sweating don't forget to reapply it. I know that sunburn can easily lead to cellulitis. I wonder, but have never put it to the test, whether baby powder would help you put your sleeve on if you were damp from the heat. When I went caravanning last summer I got a mosquito bite the first night in the crook of my arm. I FREAKED out (as you can tell, Katytc, I haven't had it long enough to be calm about it--just long enough to be well and truly sick of it!) sprayed it with my spray antiseptic, put a bandaid on it and put my sleeve on. I was scared I was going to scratch it, but it really didn't bother me too much. After that I was religious with the application of spray-on bug repellant.
My gp gave me a week's supply of antibiotics without a peep although I preference my request with "my lymphoedema nurse suggested that it would be wise to..." so he didn't think I was making it up. I had also had cellulitis, so that may have helped to convince him I knew what I was about. It is important to know the symptoms, it needs immediate treatment since if you ignore it you wind up in the hospital with iv antibiotics--happened to a friend of mine!
How much are your arms swollen? I keep wondering if I should get someone to teach me (and OH!) to bandage my arms, and if that would reduce the swelling. You can wear the bandaging all night can't you?
Meanwhile, what are these coloured sleeves you are talking about Katy? They sound nice.
Q. xx

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Re: Positve results from manual lymph drainage?

Thanks Moya, that's so helpful and great I can have something to show my GP

Katy - i've had lymphodema for 2.5 years now. It was so mild to start with that I didn't need to know that much (or rather thought I didn't!). I wish I had known more from the start. There is so much to learn and pick up and you'll get loads of information from other women in the same situation. Don't be afraid to ask if there's anything you want to know. I'm sure one of us will be able to help.
Elinda x

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Re: Positve results from manual lymph drainage?

The recommended "just in case" antibiotics are:
Amoxicillin 500mg tds or, for those allergic to penicillin, erythromycin 500mg qds or clarithromycin 500mg bd.
http://www.thebls.com/consensus.php - you could show this to your GP if they are reluctant to prescribe. Cellulitis can progress like lightning so I think it is well worth keeping antibiotics on hand, and especially for holidays.
Moya xx

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Re: Positve results from manual lymph drainage?

You all sound so experienced regarding lymphoedema, have you had yours for a long time?
I have been looking at sleeves (religious) and they do different colours, they are lightweight so you could mix and match is it ok to pop them on over your sleeve? They are a bit like the fake tattoo sleeves. xx

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Re: Positve results from manual lymph drainage?

Rattles - my lymphodema nurse suggests putting the sleeve in the fridge first (if you have one where you're staying on holiday). The other tip she gave was to carry one of the Evian mister sprays and you can spray that over your sleeve as well as on you. Also one of those mini fans you put in your handbag or pocket to carry around.

I'm also going away soon and dreading the heat for this reason! I'm hoping that these tips help because I'm also having terrible hot flushes at the moment.

Re mosquitos - that's more tricky if you're like me and obviously nectar to a mozzie. I went somewhere with lots of mosquitos last year and managed to avoid getting bitten on that arm. I made sure I always had it covered when I went out in the evening and, if you wear your sleeve that helps but I have been bitten through it once. Insect repellant only works to some extent and I find if I miss the tiniest spot on my body I'll get bitten there. If you do get bitten, put some antiseptic on it and keep it covered so it doesn't get infected - that's what you're trying to avoid most.

Also take some antibiotics away with you in case of infection. This was recommended by my nurse. I've got to ask my GP so will be interesting to see response. I'm not sure what antibiotics to get so will have to ring the nurse. obviously you only take them if you see any sign of infection in your arm such as redness, heat, or additional swelling.

The problem with having a glove on the sleeve is that the sleeve is too light in colour for me so I've already got tanned fingers and it makes the glove even more noticeable. The sleeve I used to wear was a great caramel colour which was ideal in the summer as it matched my own skin colour. This year, it's going to be much more obvious. I wish they did sleeves in a range of colours like they do foundation!

Re the bandaging, I'm selling to my husband on the cost issue. I've said it will mean less massages at £35 a time and that's encouraged him! it will be a chore and he's very good so I do think I'm lucky.

Elinda x

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Re: Positve results from manual lymph drainage?

Hi Quail, That's a good tip re. the wool. What I hate is when you get bobbling on the sleeve itself as well as the compression sleeve. Like you, I can find clothes tight in the arm.
Elinda, my partner learned how to bandage my hand. To be honest, it had upsides and downsides- on a good day, it helps him to understand and to feel he can do something. We also have a giggle and a chat while he does it. On bad days, he resents it and wants to wtach the sport and then I get cross. I remind him its cheaper if he does it and threaten him with the cost!!
The cardigans are a good idea, and I also wear them, with sleeves that stop at the elbow, its hard in the summer though. We are going on holiday next week and I have no idea how to cope.
Another tip if you wear a beige sleeve which stops at the wrist- wear a large cuff type bracelet- I met a young woman who did this and I swear you did not notice the compression sleeve It also looked stylish. Not so, for those with gloves who need Trinny and Susannah or Gok Wan!
Any tips for managing the heat and to avoid mosquito bites?
Rattles

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Re: Positve results from manual lymph drainage?

I think keeping in touch is good although I'm going to try just to stick to the lymphodema threads as I get side-tracked and end up spending too much time on the forums - I had weaned myself off!

Quail - it is a real issue getting things with sleeves big enough to cover the compression sleeve and also that don't catch.
I bought a lovely Indian shirt from East about 3 years back - very feminine, white cotton with an embroidered white pattern (ethnic) and lovely style - it's great to wear over things in the summer as it's so cool. I haven't been able to find anything like it since. Most white cotton shirts are so plain and not feminine or too fussy and lots don't have full length sleeves or aren't fitted to wear not tucked in.
The other thing I do use is very fine, light white or cream cardigans but the flowing summer type. I've got one that is perfect as it has a loose weave and is very cool to wear. I'm going to get one or two in other colours this summer as I use them all the time.

There is such a market for clothes for us women. I also think there are loads of women out there who don't like their arms and also loads who want to keep out of the sun.

Saw my MLD therapist today who thinks that MLD isn't going to reduce the volume much and has suggested bandaging but every day for 10 days. She said she'd train my husband up to do it. Can't say he's too keen but then I don't blame him!

Elinda x

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Re: Positve results from manual lymph drainage?

Count me in. Although I have grown used to wearing the sleeve/mitten, and most of the time don't think about it, when it matters, when I need to look "nice" or feel really self confident at work or some event I just HATE it. I reach out to shake someone's hand and there's that freaking mitten. Or I put on a cute jacket or sweater that I've always loved and the cursed thing is tight on my right arm and looks ridiculous. I bought (at great expense, although it was on sale) a lymphediva sleeve and glove, but I can't decide if that's worse--I fear that it just looks silly and not "brave and chic". Black is my default colour for looking nice--the beige looks so bandage-y.
Meanwhile, something I've learned: wool knits are more stretchy than acrylic or cotton. I discovered a company called woolover that sells wool jumpers in all sorts of weights, and I am slowly switching all my jumpers to wool (yes, I know they are a bit of a pain to wash). The fat-arm sleeve stretches out and then back without becoming unpleasantly mis-shapen. I have to be careful with those peasant tops--I bought one, and like it, but the sleeve gets stuck on my armsleeve and is a bit trouble-making. Don't you HATE how the armsleeves catch on your clothes as you try to put them on?
xx

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Re: Positve results from manual lymph drainage?

I would really like to be part of a group keeping in touch. Between us I am sure we have loads of useful information to share.
xx

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Re: Positve results from manual lymph drainage?

Would def like to keep in touch, as this is such a new issue for me any advice is an advantage.
I wore kaftan style tops when I was on holiday recently and only one person commented, funnily enough they had a relative who had bc so they knew what it was. My summer wardrobe is all short sleeve tops so will have to have a total rethink or build up the confidence just to show my arm, hand.
Do any of you have the sleeve and gauntlet on display?
Rattles your tips are great, thank you xx

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Re: Positve results from manual lymph drainage?

I wondered if those on this thread are interested in keeping in touch? I used the forums regulalrly through my chemo but the lymphodema thread is much quieter.
Katy- I tell people who ask its to manage swelling, and for those that go further, say its post op swelling. Most are shocked to hear its a permanent issue. I always feel it is a sign of the fact that I have had breast cancer.
I know what the best clothes to wear are! There was an article in the LSN magazine- they are those peasant-style tops- loose cotton, slightly billowing at the arm, stop at the elbow, round neck. However, bit trickier when you also have to factor in a mastecomy on the opposite side! Saltwater do t-shirts that come to the elbow (this was a tip from the last Vista magazine), though not cheap. Also, there is a bag for backs (again a Vista tip) a firm who produce ruck sack type bags.
I have black sleeves with gauntlets. You can only get the black ones (I think), if you have made-to-measure. But, black is not so good for summer. I can't use Sigvaris Elinda. I have JOBST, class 1 aand a class 2 sleeve. I have a sigvaris for my other arm which has mild lymphodema- its so soft. As far as I can tell, I can't use Chic Compressions as I need a sleeve and glove incorporated, but I think they do some interesting designs.I suspect that all of us will have differences in where our swelling is and how it responds which is why the sleeve issue is so much about trial and error.
I've said it before, but will say it again- using a massgae ball on my hand really makes a huge difference to the swelling on the back of my hand where the swelling in the knuckle and fingers restricts my movement.
All the above should be in one place, together with some of the tips in other threads. Come on BCC if you are reading- we will work with you on this issue!!!
Rattles

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Re: Positve results from manual lymph drainage?

Hear, hear! I had a sentinel node biopsy followed by an axillary clearance so was at high risk of developing lymphoedema anyway, but how I wish I had known that you shouldn't lift your arm above your shoulder for 7 - 10 days after surgery. Like Quail, I was very proud of my movement straight after surgery and showed the physiotherapist (on the day after surgery) how I could get my arm straight up next to my ear, and she said "well done"!
I pay for MLD privately every two weeks as I battle to wear a sleeve as my skin reacts to the silicone grip (also a Sigvaris). I don't really see any difference but guess it can only be a good thing to shift the lymphatic fluid regularly so it doesn't get too stagnant. I had cellulitis three weeks after my second surgery which put me in hospital for a week so am very anxious to avoid a repeat.
I think it would be an excellent idea if BCC could provide separate sessions for people who have developed lymphoedema and agree the current focus everywhere is on prevention (great, but people still get it and it is a huge thing to learn to live with). SLD can easily be taught in groups (the Marsden run very occasional sessions) and although there are leaflets available which explain the technique, it is useful to have someone show you what pressure to use (it's very gentle).
There's no money in lymphoedema research but it is, I think, the worst side effect of primary breast cancer treatment and perhaps we should shout a little louder for better care.
Moya xx

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Re: Positve results from manual lymph drainage?

Hi everyone - glad it's not just me missing something about lymphodema services. I can't believe the gap there is in this field. I suppose in the scheme of things we're not a big number - I've seen estimates of around 100,000 people with lymphodema secondary to surgery which is a very small percentage of the general population overall.

Hi Supertrouper - I know where you can get a black sleeve and that's from a company called Sigvaris. I have their beige ones on prescription but I've just ordered two privately as I need some spares and it's been no problem. Make sure though that you ask for a VAT exemption form (chronic lymphoedema) otherwise you'll get charged VAT.

The prices vary depending on what you need - not cheap - mine work out to about £37 each without VAT. You can get with and without all in one glove (or mitten as they call it)
http://www.sigvaris.co.uk/en/products/advance-armsleeve

the only thing is making sure you get the right measurement and I wonder if you could get this via your lymphodema nurse specialist? My nurse says its better not to just order over the internet without getting measured by her first because it could do more harm than good.

Perhaps you could ask for this for your next prescription and then, if you like it, get another privately.

Elinda x

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Re: Positve results from manual lymph drainage?

I am glad this thread has started - I had full node clearance at the same time as my mx in December 2011. I too had lots of info on how to avoid Lymphoedema and have no idea why I suddenly started with it at the beginning of this year. Now it seems that it is all a bit vague about how to control it. I have seen a specialist nurse twice who has shown me how to do MLD - and on the second visit fitted me with a compression sleeve with mitten. Why are there no choices with colours - I was give one in beige that gets dirty very quickly. I am told there are black ones available but only on prescription - so I am on a mission to get one. I've seen fancy ones on the internet, but they are expensive.

I too am getting weary of people asking what I have done to my arm/hand - I need to get inventive with how I respond. As for the summer and what to wear.....I have bought a tattoo sleeve that will fit over my compression sleeve - maybe this is the way forward!

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Re: Positve results from manual lymph drainage?

This is a very interesting and informative thread, have just very recently been diagnosed and at the moment am not feeling confident enough to walk around showing off my sleeve and gauntlet in a t shirt etc. I too feel awkward with people's comments "What's happened to you?" etc etc, yesterday I just said "Oh it's a long standing injury" the person had only noticed the gauntlet. Feel very self concious at the moment.
Have next appointment in 3-4 weeks was referred through bcn to a Macmillan Physio so feel lucky it's NHS.
Also in agreement regarding information most are about how to prevent so what does happen afterwards when you have a diagnosis? It would be great to have more info and would love advice on what to wear. xx

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Re: Positve results from manual lymph drainage?

thank you Leah for listening to what we are saying and forwarding on our views - that's what we love about BCC.

The body image issue - this is so very important. In many ways it's far more important to me than the two long scars I have in replace of breasts. With my prostheses no-one knows but with lymphodema everyone can see it and if you're wearing a sleeve you keep getting asked 'what did you do to your arm' which I always struggle to deal with. If you're going to see people for a long time then you can't pretend it's an accident and I hate having to explain it all. Then there's the whole issue of covering up the other arm too in summer as I tan so quickly and I could end up with one very brown arm and one pale one. Oh for the days when I could just put on a T-shirt and not worry!!

Look forward to seeing the article in Vita Voices on what to wear in the summer!

Thanks again and excuse my rant too - glad I'm not the only one who needs to let off steam on this!
Elinda xx

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Re: Positve results from manual lymph drainage?

Leah, the forum feedback is one of the BEST things about bcc--the fact that you really are listening, even if we tend to get a little shouty. And hooray for Vita, which I think is a really great magazine that I *look* for when I'm at the breast unit, and have occasionally searched out online just 'cause the articles seem so good. I got great swim-suit advice last year.
About the lymphoedema publications: can you pass on my wish that they give a prominent place to that 2008[?] Leeds Hospital Lymphoedema Service study that recommends "a regimen of post-operative exercise that restricts arm movements to below shoulder level (< 90° abduction and flexion) for the first seven days after axillary node dissection". I was so proud of myself that I could raise my arm almost the first day after surgery! I had clearance, so lymphoedema probably would have happened anyway, but ever since I heard about that study I have had a little "what if" niggle.

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Re: Positve results from manual lymph drainage?

No apologies necessary, Rattles!

Apparently our lymphoedema publications (both prevention and for people with lymphoedema) are coming up for review in the next few months and I've highlighted this thread to the team so they can take your feedback into account when reviewing them.

Also, the next issue of Vita magazine is featuring lymphoedema and what to wear for the summer, so keep an eye out for that.

Keep giving us feedback and I'll make sure it gets to the right people.

Leah

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Re: Positve results from manual lymph drainage?

Sorry guys, rant warning!
Hang on while I get my soap box out.............
I have done the session at the Haven. I have the DVD. I also went to the Younger Women's Forum (excellent) this weekend and saw the materials that were given.
ALL THE SESSIONS AND MATERIAL RELATE TO PREVENTION OF LYMPHOEMA AND MINIMISING RISK!!
BCC is a fabulous organisation and it has been a huge support to me, and others but I felt a bit patronised by the repsonse given. I gather from the Haven that they stopped their services for lymphodema as they felt that this should be provided by NHS and as a charity they had to prioritise their services. I can completely see this and that lymphodema is very personal to the individual and it also requires as intensive approach- I think this is the challenge for NHS services.
It is not difficult to locate therapists, but the real challenge is COST. There is also no way of knowing whether the therapist you have located is able to provide quality services. The LSN recognise this, and campaign on it.
But, it would not be difficult to run information-sessions for people with lymphodema, or even set up a more formal support network. I could almost do it myself. I have had to be proactive and find information and try out ideas. Its very isolating.
Come on BCC- rise to the challenge!
Rattles
ps sorry for the rant

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Re: Positve results from manual lymph drainage?

Thanks guys, I'll definitely pass that feedback on again. It's really useful to hear exactly what you'd find most helpful and see if we might be able to address that. I know we are doing some specific work on body image coming up, so I'll see if we've included elements related to lymphoedema in that. I'll also pass it on to our publications team, so they can take it into account when reviewing the information we produce.

I'll also let the nursing team know how helpful you found your Ask the Nurse response, Elinda - I'm sure they'll be really pleased to hear it.

Don't worry about giving us your feedback - it's the only way we'll know if we're meeting people's needs, which is obviously what we want to do!

Best wishes

Leah

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Re: Positve results from manual lymph drainage?

Once again let me add "hear! hear! to Elinda's response.
It is worth noting that no matter what bc-lymphoedema-related forum you read, many of the comments are the same: a sort of bewildered uncertainty combined with a strong feeling of a lack of support and knowledge coming from well-informed experts. BCC and Haven seem much the same, a lot of REALLY good and practical information about preventing lymphoedema, explaining why you might get lymphoedema, excercises, care tips. There seems to be a lot of help right up to the point where you are diagnosed with lymphoedema, and after that it all gets a little fuzzy and out of focus. I know that "everybody's different" but that's true with BC too, and it hasn't stopped me from feeling like there's a whole support network of experts to help me--to answer questions I don't even know I have. LSN is great too, and maybe they are who we should be looking toward, but their remit is so much broader--lots of primary and leg le people as well, and they too don't seem to offer any practical hands-on, in-person advice. I don't feel like there is anything like what we've started talking about here.
Anyway, I also agree with Elinda that this isn't a criticism of BCC--it's just a, oh, maybe request is the word, a request for you to consider a 'lymphoedema-sufferers' course. In the same way that the information about breast awareness and what it means to have bc is quite different for a woman before and a woman after diagnosis, or why the secondary bc women often feel that the primary bc women don't quite get it, I feel like women who have lymphoedema have a list of needs, concerns and questions that could be addressed in a specialised group session. From how to do sld to how to cope with the day-to-day trials. And as much as I appreciate the peer-to-peer support I get on here, it would be amazing to have someone who really, really knew what they were talking about talk to us.
I know money's short for classes, so maybe it's not even possible, but if you're sitting about thinking "is there anything else we could be doing?", this might fit the bill.
Quail xxx

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Re: Positve results from manual lymph drainage?

Thanks so much Leah for passing this on.

To clarify, I don't think any of us were hoping for MLD training sessions from BCC but more information on how best to perform SLD. I expect that most of us have been shown this, albeit very quickly, and it would be nice to know this in more detail. For example, info on deep breathing exercises, and how to do total body lymph drainage. It would be much nicer to have guidance on this in person that via a DVD (as from LSN) and have more time than many of our nurse specialists have. Not everyone is in a position to pay a manual lymph drainage therapist to show them SLD techniques and there are many areas in the country without a free service available.

But it is more than that, the other thing is to know more about treatment options such as how effective things are and what new research is available. another huge apsect is body image - how to deal with the changes, how to keep cool in the summer, what to wear to cover the arm etc

Personally I think it would be good to have these sessions solely for women who actually have lymphodema rather than as ways to help minimise risk - I think our needs are very different especially when it comes to body image and needing practical advice that quite frankly is really hard to come by in any sort of real detail. I've learnt more about lymphodema from the forums than anywhere else and also from an extremely knowledgeable nurse who responded to a question I posted on the 'ask the nurse'. Someone like her running a day would be absolutely wonderful!
Please don't think that the above is any criticism at all about BCC or what is currently offered (because what you offer is great and far better than most other things out there) but rather a request for something rather different. Us lymphodema ladies are thankfully a minority but a pretty substantial one nevertheless.

I don't know what others think?

Elinda xx

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Re: Positve results from manual lymph drainage?

Hi everyone, and especially Rattles, Elinda and Quail, who asked about the BCC lymphoedema sessions

I had a chat to Suzi Copland, our Head of Services for the South, and here is her response:

"As has rightly been pointed out on this thread Breast Cancer Care runs Information Sessions on lymphoedema. The aim of these sessions however is to provide information and guidance about lymphoedema (including reducing the risk and outlining the variety of treatments) rather than teaching people how to perform manual lymphatic drainage, which is a very specialised form of massage not undertaken until therapists have had intensive training.

"Our Information Sessions usually have 15-25 people present and it could be hard to teach this size of group the techniques involved in manual lymphatic drainage because of differing individual needs and circumstances. This doesn’t mean that we would never provide an alternative type of service to address these needs in the future and I’ll certainly discuss this with the services team. Self lymphatic drainage methods are taught by MLD practitioners, once the client has been assessed and shown how to perform this safely.

"Our Helpline and Ask the Nurse email service are also able to provide information and support to people on a whole range of issues associated with breast cancer including how to manage lymphoedema. They would also be able to signpost to local specialist lymphoedema services where available for callers. The Helpline is a Freephone number – 0808 800 6000.

"Also just to say that The Haven runs lymphoedema classes and the Lymphoedema Support Network has produced self management DVDs and can help people to identify local therapists."


I hope that's helpful.


Best wishes

Leah

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Re: Positve results from manual lymph drainage?

The term 'postcode lottery' springs to mind when talking about lymphoedema care--that sounds really great Sarahlousie, and nice to hear that it does make a difference.

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Re: Positve results from manual lymph drainage?

Hi all,
I go for MLD once a fortnight with a specialist lymph nurse at my local hospice, it was mild to start with but I definately notice a difference when I've been for a session, I don't pay for this service its free, my onc referred me back last year. Hope you get some results soon xxxx
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Re: Positve results from manual lymph drainage?

Hi Rattles, Elinda and Quail

Just to let you know that your queries have been passed on to the relevant teams at BCC

Best wishes

Lucy

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Re: Positve results from manual lymph drainage?

Thanks for all the information!

Have you been told about deep, belly breathing which helps to circulate the lymph? My lymphodema nurse specialist said that 'they' have been saying this is really important. Basically, the best way is to lie down and exhale to the count of 11 and then breathe in for the count of 7 but rather than filling the chest you push up your belly as you breathe. This pushes up the thoracic diaphragm and that affects the lymph. It is also a technique for calming the nervous system and helping with pain.

I'd like to echo the hear hear for workshops!!! Would love BCC to run workshops on managing lymphodema - going through the best techniques for SLD, how to bandage our own arms, taping and generally how to manage the lymphodema including body image, best clothes etc. Wouldn't that be just wonderful! I'd love the opportunity to meet up with others at a workshop so we could all share ideas and ask questions and maybe even develop another publication.