My Lymphoedema Training - Part 1

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1

Hi all,

I have just done some really good lymphoedema training which I thought I’d write up - in 3 sections. This may be different to what you get in the UK.

This one - what it is and the 5 golden rules.
Number 2 - the exercises!
Number 3 - massage

I may alter in a bit over the next couple of days as things come back to me …

If you think this is useful to you or anyone else please let us all know by bumping it up.

By the way - if you have had any lymph nodes removed then you could get it - no-one told me that!!! … which is part of the reason I am posting - as you may not have been told either.

WHAT IS LYMPHOEDEMA?
It is not inflamation - it is an inability of your arm to drain properly.

Imagine your arm is an indoor patio with 35 drains in it. It rains. The water goes down the drain.

Take some or all of the drains away - it will be harder to cope wthout help.

The help is the exercises - they are essential and should be done daily.

If you change your habits then you will avoid “rain” and espeially “storms” which your body will no longer be able to cope with.

HOW TO AVOID LYMPHOEDEMA

  1. No injuries to arm. e.g. cuts, burns, injections etc. This acivates the mending of the arm - in patio terms - causes a storm. Not good when drain problems.

  2. No pressure on arm - avoid tight clothing, no rings, no watched, nothing that will block the drainage system.

  3. Work with gravity - when resting elevate arm - to help the lymph drain out round your shoulder.

  4. Avoid extremes in temperature - hot and cold - especialy hot - and also avoid the sun. Avoid getting your body too hot.

  5. Never tire your arm . Lots of waste products build up and drainage system can’t cope.

WHAT DOES THIS MEAN IN PRACTICE
examples :
IRONING
Doing a pile of ironing is a no-no. Why? Tired the arm and you get hot. If there is a lot of ironing then there are a lot of people so get help. Iron less. 10 mins per day maximum.

BATHS
No hot baths, no saunas,no turkish baths. Body gets too hot - having a hot bath with arm out is not a good idea - very very occaisionally but have to be quick. Best avoided.

DRYING HAIR
Do not let your shoulders get too hot - put 2 or 3 towels on your shoulders to insulate from heat from hairdryer. Especially if long hair.

LYING N BED
Do NOT rest on “bad side”. Lots of pressure. Sleep on back or other side. Difficult habit to break. Might help to swap sides with partner if used to backto-bck or face-to-face.

BLOOD PRESSURE
Other arm - pressure

INJECTIONS
Other arm.

SUNBATHING - HOT COUNTRIES
Beach before 11 or after 7

NO HEAVY LIFTING
Tires the arm

ON FEET FOR LONG PERIODS
Not good if arms are hanging at sides for hours - gravity will win

AVOIDING DAMAGE
Wet tasks - rubber gloves, other tasks cloth gloves

BRA STRAPS
The wider the better - less pressure on the shoulder

HAIR REMOVAL
Nothing is good.
Shaving damages the skin.
Waxing is bad due to lots of little oles being left for infections.
Creams are the best - but not too often. MAKE SURE YOU TEST ON GOOD ARMPIT FIRST.

MASSAGE
General massges are OK but NOT ON THE BAD ARM. Also, NOT ON THAT SHOULDER OR SHOULDER BLADE - if they “pop” nasties in the shoulder it can end up in your arm. Otherwise OK.

Most importantly - DO THE EXERCISES.

I was told that applying the rules and doing the exercises can reduce the risk of lymphoedema from 25% to 1%. They have over 300 people at the clinic.

If this is useful - then bump it up.

2

This is very useful. Looking forward to seeing the rest of it. Good about the ironing !

Anthi x

3

Hi Fizbix - nice to see you posting in our brand new category. I think you have summarized the lymphoedema advice really well.

One thing I would mention is that there are certain events known to increase the risk of developing lymphoedema - for instance radiotherapy is generally reckoned to increase this risk sixfold, I understand. I feel that there are no exercises in the world that can keep at bay the damage done to an irradiated lymph train - if and how that damage manifests itself is going to depend to a large extent on an individual’s lymphatic make-up, I reckon. Also, I know a sample of 1 is no statistic at all, but having had lymphoedema in one arm already, I bust an absolute gut trying to make sure the other didn’t get it - exercises, SLD, the works - all to no avail. I’m not saying that the exercises don’t work or don’t help - I think they do - but that there’s an awful lot more to lymphoedema and to assessing an individual’s susceptibility to it.

Another well-known trigger for lymphoedema is flying. I read of people on this site jetting off for much longed for and greatly needed holidays after treatment. It seems that they are given very good advice about exposure to sun, but none about the damage that reduced cabin pressure can do to an already compromised lymphatic system. This particular risk is one that COULD be easily eliminated by lymphoedema clinics giving everyone at risk a sleeve to wear prophylactically on the flight - this would definitely bring the incidence of lymphoedema down, although I think the figure of 1% you have been quoted is, frankly, unachievable. I understand that the incidence of lymphoedema is around 5% without radiotherapy and 30% with it. A lot of scientists/researchers think that it is even higher, with very mild cases going unreported/unnoticed.

Best wishes

S

4

Thanks S

good of you to share all your practical experince - sounds like a b/dy nightmare for you - very sorry to hear tha despite all your efforts you got it in the other one - what a b*mmer

i was worried about puting the quoted figure on … even if 1% is unacheiveable … if it was 10% it would still be worth doing don’t you think? I know that at this clinic they have over 300 people and they are making sure that we all get 6 month referesher courses and then yearly.

very useful about the flying … so you are saying that we should all have a compression sleeve before flying ? I’ll have to see how I can get one of those … as you say I have the “planned trip” at the end of this. Thanks for that.

good luck with the petition - I haven’t signed it as i don;t live in the UK anymore and didn’t want to muck it up for you - but I think it’s a very good thing to do

keep going
love FB xxxxxxxxxxx

5

I, too, wonder about the 1% figure - I did everything I could to prevent it, exercised everyday, read all the advice I could find, scoured the internet, and I still have it.

6

Just been diagnosed and awaiting my appointment with breast care nurses so this is so so useful thank you.

Regards Judy

7

Thanks for that, FB. Some very helpful info there. Can’t wait for the rest of it.

We flew long-haul last Oct. Prior to that I hadn’t been able to wear the compression sleeve because I was awaiting surgery to have a pin inserted in the bad arm and both me and the medical people were concerned that the bone may fracture with the pressure of putting the sleeve on. I also had extensive radiotherapy to both sides, and length of, the humerus. However, I was strongly advised to wear the sleeve for the flight, which I did. I suppose with all that going on, it’s no wonder I’m now 28% lympho in that arm.

I do the exercises but not every day, but find my arm aches quite a bit after I’ve done them.

Good luck to us all.
Maureen xx

8

Hi All

The flying…yes, the ideal scenario is to be fitted for a sleeve BEFORE you get any problems and then wear it when the lymphatic system is under additional load - ie flying, exercising, shopping, ironing hoovering, using a PC, thus giving the lymphatics the support they need when they need it most and avoiding lymphoedema in the first place! I understand this is the way they are going in the States, ie identifying the triggers and recommending a sleeve is worn at those times.

By the way, Fizbix, you can still sign the petition if you live abroad - you just need to check the ‘expat box’. The important thing is that you are British citizen;doesn’t matter where you are in the world.

Maureen - do you get any treatment from your lymphoedema clinic - manual lymphatic drainage, compression bandaging, kinesio taping to help you? At 28%, your arm sounds as tho’ it needs a bit more help than just exercises.

X to all

S

9

Bahons, no, I get no treatment. I need to phone the nurse anyway so I’ll do that and ask about any treatment going. Thanks for the encouragement.

Good luck to us all.
xx

10

Hi FizBix,

thanks for the tips. Its the bloody ironing that did it for me a few weeks ago. Have got an appointment with the clinic on the 10th to discuss lymphodema. A bit of a long wait.

sukes

11

Hi Fizbix,

This is really good, thanks.

I’m a bit confused by what is meant by heavy though? I am supposed to lift my children (4 and 2, both well within the normal weight ranges for their ages) or not?

I have 7 nodes removed and 5 were infected, so obviously I am worried that there are more. I’ve seen that loads of ladies on here have gone on to have the rest removed/clearance but only radiotherapy to the area (after I’ve finished the chemo) is recommended for me. Think I’ll ask the onc about this when I see him next week, but wondered whether your classes had covered anything on which method carries least risk of lymphodema?

Thanks
Kinden
x

12

Hi Kinden

The children is a difficult one isn’t it ? I wuld guess that would be too heavy - but what can you do ? Also, if you do it too one-sided then you will put your back out. Perhaps somoene else can help.

Sorry - don;t know wbout the seocnd question but Bharons2 knows all about lymphoedema so homefully she can help - or someone else …

good luck with it all
love FB xx

13

Hi Kinden,
I had 8 nodes removed and work in a nursery class.
Initially I was told by the bcn that my arm would never be normal again and I would not be able to lift heavy weights.
However when saw a physio, due to cording, she said although I ought to take greater care of the arm in the way FB suggests there was no reason why I shouldn’t use it in the way I had before. Just build up to it gradually and I should be able to pick up children / bikes at school but just don’t overdo it or perform repetitive tasks.
Part of the exercises she gave me involved using wieghts to build up the muscle again.
So I do lift children and then carry them on my hip but do try to vary sides.
I don’t have lyphoedema and certainly want to avoid it if possible and so i have found FB’s posting and tips really useful. I was already following most but some are new so THANK YOU
M x

14

Thanks girls. I have been lifting my girls on to my lap but not carrying them around, and this seems to be working ok, so I’ll carry on doing it.
FizBix - look forward to episode 2.

Kinden
x

15

Hi Kinden

Lifting children is a tricky one, isn’t it? Sounds as tho’ you are doing a good thing by just lifting them onto your lap.

The only thing I can add to others’ suggestions is to try to obtain a sleeve for prophylactic use - and wear it when you are at your busiest with your children - much the same idea as wearing one as a preventative when flying. Trouble is, you are unlikely to be prescribed one by the NHS unless you present with symptoms of lymphoedema (the words ‘horse’, ‘stable door’ and ‘bolted’ come to mind here). You might however be able to get one thro’ a visit to a private lymphoedema specialist, if your budget runs to that.

Other than that, you could treat your arm as tho it already HAS lymphoedema ie, following Fizbix’s excellent exercises and massage descriptions, supporting your arm (especially the elbow) on a cushion or similar when sitting down, not sleeping on that side at night, etc. If you like swimming, it’s worth doing more of it as it is very good for lymph drainage.

I’m sure there’s stuff I’ve missed out! Anyone else got any suggestions?

X

S

16

Thanks. I will ask for a sleeve when I see the onc and bcn next week.

I’d love to go swimming, but I have a PICC line in my arm which I can’t get wet, so that’s not possible until after chemo. We used to go every Saturday as a family and I miss it.

Hope you’re having a good day

Kinden
x

17

You see some good can come from bad, no ironing! Plus my LO nurse said no heavy carrying i.e. coal bucket! Great. OH usually does it but has to be reminded alot, still it’s a job I hate and he doesn’t do much else around the house!

Irene

18

just upated hair removal and massage … cheers FB xxx

19

FWIW, I was told that the heavy lifting/carrying was more to prevent you carrying stuff like heavy shopping bags (or the coal bucket!) - you tend to carry stuff like that on a narrow strap across your fingers/palm, or on a shoulder strap, and the pressure on such a narrow area isn’t good.

Lyn

20

thanks FB
this is wonderful

going off to read the remainder

hugs
Em
xx