I’ve bee n reading the posts about alert bracelets and am just contemplating whether to get one. I know we can’t have injections or blood pressure on affected arm but I can’t remember why! Is it because it could cause an infection or further damage to the arm?
Hi Hatts, the medic bracelets are to let people know that your affected arm is at high risk of Lymphoedema. This is a risk with node sampling & especially node clearance & i think radiotherapy as well. Im definatly going to get one in the new lilac shade that Anielav has sorted for us (thanks Angie)
The risk is from injections to that arm, taking of blood, taking of blood pressure. Infections can get in the skin through the tiniest break so if u cut yourself get some antiseptic spray on it. The lymph system is a drainage & filter system so if it’s not working properly due to node removal etc then lymphoedema may occur.
Hope this helps x
Hi Hatts,I hope you don’t mind, I’ve editted you title to try to attract the ‘experts’ along on this one.
It is something to do with the fact that if the skin is broken there is an increased risk of infection, however tiny, and that the body sends more lymph fluid to fight the infection. If you have had lumph nodes removed, their function as mini-pumps to pump out the lymph fluid is lost and so it can get stuck in your arm (and/or breast).
Taking blood pressure involves squeezing tight which can cause minor internal damage which we wouldn’t see but could again prompt the lymph system to set out to fix it. The same is true with muscle strains/sprains which is why we have to be careful not to lift anything too heavy (and best not to do what I did recently and sprain my ‘good’ wrist by overcompensating! At the moment I have two debilitated arms.)
A few people have bilateral lymph node removal, in which case needles and BP tests are done at their feet.
At the end of the day, if it was an emergency and a doctor stuck a needle in my at risk arm, and if I then developed lymphoedema well that’d be disappointinhg having been careful thus far to avoid it, but it wouldn’t be the end of the world.
There are lots of good threads on here with advice to minimise hte risk of lymphoedema in the first place and/or to control it if it occurs.
Hope this helps a teeny bit.
Thanks for your comments. I do already have lymphoedema and am battling a minor infection at the moment. I guess I just wondered if there was a specific risk from an injection, other than just a small break in the skin. Similarly with the blood pressure. Just how dangerous is it?
Hatts, sorry to hear you’ve already got lymphoedema.
I think the problem is that things that normally wouldn’t cause problems such as an injection or BP will put you more at risk now because your lymphatic system isn’t working anywhere near as efficiently as it should.
Having your nodes removed disrupts the lymph system so it can’t circulate. Anything that causes an increase in the lymphatic fluid in your bad arm needs to be avoided because the fluid can’t drain properly once it’s built up.
the lymph system helps your body to fight infection so now it can’t do it as well as it should in that arm. A break in the skin such as an injection or small cut is now more likely to get infected than it would before, which is why you need to avoid them. The lymph vessels are very close to the surface of your skin which is why a BP cuff / a tight wristwatch / bumps etc. might also cause problems.
So, an infection can lead to lymphoedema and lymphoedema can lead to more infections (cellulitis etc). It’s a vicious circle so better to do your best not to start it off in the first place!
Jane xxx
Hatts, that’s a good question.
There is surprisingly little research evidence on this subject so much of it does seem to be conjecture - at least as far as I’ve been able to find.
As Jane and others have said, the big risk is infection. I can’t add much more to what Jane has said on that.
As the lymph fluid can’t drain properly, things like a BP cuff could cause the lymph to be build up on either side of it, and then because we can’t drain the fluid so effectively it might be difficult to get rid of.
Again with things like hot baths or saunas I think the risk is from the heat causing an increase in lymph which we don’t drain so well.
Elinda x
I don’t think there is a more specific risk from an injection which in theory could be lower risk of infection than say a scratch because it should be done with an aseptic technique. On the otherhand, I guess that injecting any fluid into the area is probably not a good thing. When I asked my lymphodema nurse about the risk from injection she said it was the infection risk ie just having a break in the skin.
Blood pressure - from what I’ve read, because of the reason I gave above.
Hatts, sorry you have lymphoedema, and sorry if anything I wrote came across as patronising given that you probably know far about it that I do. Intriguing that so much seems to be conjecture.
Not patronising at all RevCat. I appreciate your comments. It is interesting that it seems to be conjecture. I wonder what the solid evidence is. I am pretty laid back about my lymphoedema as I never wanted cancer/lymph oedema to rule my life. Having said that, I think I have perhaps been a little too laid back, hence me now having an infection caused by a cat scratch that I did nothing about! A little lesson for me.
I still find it hard to believe that a tiny injection hole could be that significant, but perhaps I should take it seriously to avoid being taught another lesson!!
It’s a hard balance isn’t it? I remember the first time I cut myself I was utterly paranoid. Now many insect bites and cuts later I don’t get myself into a state.
I like gardening, playing with the cat, cooking (almost dangerous activities for those of us with lymphodema!) and I live in the country next to water so insect bites are a given. I’m not complacent in that I always clean and spray cuts etc with savlon and cover if required but I refuse to let lymphodema dominate my life. My lymphodema nurse was very clear to me that I shouldn’t let lymphodema rule my life and she’s right.
I was curious about the same questions as you which is why I tried to find some research evidence and couldn’t really find anything. From what I understand, lymphodema research is very poorly funded so not much has actually been done. There could well be more out there than I’ve find, I’ll try and have a look next week.
Elida x
That’s really wise advice Elida.
I love hill walking so midges/gnats to bite, brambles to scratch, nettles to sting
I have a cat - so scratches and bites
I cook meals - so risk of burns and cuts
I go outside so sun to burn (ha ha, not in west of Scotland!)
I work in an office environment so risk of paper cuts
etc.
Finding the balance of paranoia and pragmatism, trying to remain merely ‘at risk’ but thinking well it’s not the end of the world if…
Maybe we could start a new ‘dangerous sports club’
… lifting a heavy bag of shopping
… playing with a cat/dog
etc, etc.
I know it’s a serious topic and it gives some people real misery, but humour is helpful too, I find.
Yes, some properly funded research rather than conjecture would be good wouldn’t it.
hi
i think i committed the ultimate sin last week and slipped in the kitchen and broke my lymphodema arm. i had my sleeve on at the time and rightly or wrongly i wouldnt let my husband take it off- i wrapped my arm on a wet towel a tried to keep it up as much as possible. when the triage nurse had to take off the sleeve the arm started to swell immediately. as the break wasnt a bad one they didnt want to operate as i have lympho. they also put the cast on more loosely- but i had to go back the next day as it wasnt tight enough. Anyway, my bcn says it will prob make my lympho worse when the cast comes off, but we will see. I am a bit gutted because i had only been to the clinic the week before and was told that after a year the way I was managing my lympho- which had minimum impact on my life, was working and to keep on keeping on. now am just waiting to see if i have blown it. 
Oh no midge. That is such bad luck. Poor you. Let’s hope it doesn’t cause too much long term damage.
I was just the same as you Elida when I was first diagnosed. Followed all the rules to the last letter. I think, however, you find a happy medium that works for you. One does get the occasional wake up call though when something goes wrong but maybe it’s good to be reminded every now and again. As my lymphoma nurse said, my infection is a reminder of how delicate my arm is. I’m seeing her again in a couple of weeks so will ask about injections etc
So many dangerous sports RevCat. Where to start?!
Midge - sorry to hear that and I hope you’ll have no worsening of the lymphodema when the cast comes off.
Hatts - be interesting to hear what your nurse says about injections, would you please let us know.
Revcat, yes, let’s list them as dangerous sports as it gives them the air of something exciting rather and that’s got to be better than being depressed about our puffy bits:
Making crab apple jelly. I pulled off a tough stalk and it gave me a cut on the thumb.
Elinda x