Parts 1 and 2 are more important to folow to avoid it.
Massage helps a lot if you get it.
I missed the day that covered massage and measuring. But we had a recap on massge so here goes. Perhaps someone else can help with measuring.
If I were you I’d get a paper and draw the following.
Draw a picture of your arm and shoulder.
Chop it up into sections and label.
Neck to top of shoulder.
shoulder
top of arm near shoulder - half
rest of top of arm - above elbow.
bottom of arm next to elbow
bottom of arm next to wrist
hand
the massge is VERY SOFT . Do not use any massage oil. If you are very sweaty and stick a lot then use talcum powder. You always stroke towards the armpit.
You masage each section 4 times all the way round with gentle stokes.
Think about the fact that you have to drain the arm. So you have to start at the top and drain that. Then you have to move a section at at time BUT YOUHAVE TO KEEP DRAINING WHAT YOU’VE JUST DONE TO GET IT UP THROUGHTHE SHOULDER - as follows.
section 1 first
then 1 followed by 2
then 3 followed by 2
then 4 then 3 then 2
then 5 then 4 then 3 then 2
then 6 then 5 the 4 then 3 then 2
then 7 then 6 then 5 then 4 then 3 then 2
then1 again at the end
if you think this is useful then bump it up
don;t forget - whilst this is helpful the maximum benefit is achieved by following parts 1 and 2 i.e. avoiding it.
if this is useful then bump it it up
good luck
measuring the arm is good to moitor progress - if someone else can add aontehr section ?
Thanks for all of your postings on lymphodoema FB.
They are very helpful.
I have also printed them out.
Mine seemed to be brought on by being advised by GP to do regular gardening which would help my newly diagnosed diabetes (but seemed not consider that this might cause lymphodoema after having nodes removed!)
I hate wearing my sleeve and only wear it when I really have to because I live on my own. So I wear it when I do hoovering, do the garden, go grocery shopping, ironing.
But the medics don’t always know about the subject. I was in my local A&E two weeks ago and when I said that they couldn’t take bloods or blood pressure or put in a canula on that arm, I was told that I was wrong. However I showed them my little card and I was told that this advice wasn’t right. But they used the healthy arm instead.
But in the healthy arm, I ended up with bruises all over it because my veins seemed to have collapsed. Oh well!
Good for you, Lambkin, making sure that they left your lymphoedema arm alone.
Medical people know so little about it, it’s scary. I am sure they are only given 20 mins on the subject last thing on the Friday before the end-of term ball. And that’s it!
Just a scan through some reputable lymphoedema websites and reading round the subject for a day will probably guarantee that you will know more about the subject than most of the health care professionals you are ever likely to encounter.
I think Westside Sue’s(?) suggestion of a signed piece of paper stating that legal action will be taken if the ‘wrong’ arm is used is a very good one.
I’ve got lymphoedema alert cards and bracelets and attitude, but it’s b***** hard to stop some of these people from playing fast and loose with your health when you’re not at your peak…
At my clinic I had conflicting advice from 2 dif nurses, the second one said don’t bother with the arm, just do neck to armpit then across chest to other armpit. I am affraid I haven’t done this much but think the first nurses explanation was similar to this one which seemed to work and make my forearm softer.
Do any of you have problems with your hand? I’ve got some swelling in my lower arm but my hand is like a bunch of sausages and is getting very sore. I have a sleeve and glove. Wondered if anyone had hand swelling and had managed to get it down.
I don’t have swelling in my hand, but, and this is just a thought, has anyone checked your sleeve (and possibly your glove) to make sure that they has the pressure gradient going the right way, ie the compression is greater at the wrist than at the top of your arm, and also that where the sleeve and glove overlap there is no constriction? Sleeve manufacturers can sometimes have quality control issues. I think they can do an all in one glove and sleeve, too - have you tried one of those?
Finally, I’ve read about a glove specifically designed for hand swelling and I’m trying to track down more info’. If I can find some, I’ll post again.
Thanks Bahons2 so much for this. I think that there is a problem where the glove and sleeve overlap and as is making rings round my wrist and I was wondering whether they do an all in one version. Any information greatly received. I’m worried about my hand as it is getting so painful with little pockets of swelling on and above my palm and my index finger is very sore. What a nuisance it is! She is going to start massage on my next visit so I’m hoping that might help.
Also, think legal action idea excellent. I know one woman who has had terrible problems after staff insisting that her affected arm was used for chemo.
Yes, I’m sure you can get an all in one sleeve and glove. Some people don’t like them because you cannot easily wash your hands with these, but this type might suit you and your hand swelling.
This has been very useful thank you so much. I have it under my left arm and around my scar, it is like having my boob in the wrong place under my arm instead of on my chest. It is really uncomfortable and wobbles when i move, i wear a compression bra and a foam pad to drain it both of which are very uncomfortable and cut into me. My husband does simple lymphatic drainage at night which he has been trained to do by our nurse and that is uncomfortable too, poor man he hates hurting me!
I do different exercises as so far my arm is ok, though you never know if it will spread down there. I was lso told no injections, blood pressure etc on that arm and wear a medic alert bracelet and have a medic alert notice in my purse. The medic altert has a number that can be phoned to check on all my medication in an emergency and also states i have had a left breast mastectomy (my friend thinks this is hilarious as as soon as they undress me they can tell) but it also states no i.v. or injection or blood pressure on that arm.
You can get a Medic Alert bracelet from the Lymphoedema Support Network (www.lymphoedema.org/lsn). I think you can get them even if you don’t have lymphoedema, as a preventative measure.
I also think that if you actually join the LSN, you get a card to which you can add more details about your lymphoedema and who should be contacted about it.
Hi Pauline i just googled medic alert, they do bracelets, necklaces etc., My son used to have one for an antibiotic allergy so thats how i knew about them. I had mine prior to developing lymphoedema but it has been added for me at no extra charge.