Hi All
I am going to Bulgaria on Sat and just wandered if anyone has developed lymphoedema after getting sunburn - and if so does it only happen if you get the affected arm burned.
Met with bc nurse today and she told me to be very careful so just wandering everyone elses experiences?
Your help and advice is greatly appreciated.
Love
F
xxx
I have just come back from two very sunny weeks in France. It wasn’t a beach holiday, I wasn’t sunbathing, but I was outside a lot, cycling, playing tennis (left-handed - very interesting), and general sight seeing. I used factor 50 suncream, and had a long sleeved linen shirt that I put on as a cover-up a couple of times over mid-day when I was out for a long period. I had no problems at all, and I never burnt or even went slightly pink. I made sure I had suncream with me at all times so I could reapply it regularly. I found one of those small pouches of suncream very useful to carry with me.
Hi sparkler
Just had a rummage in my lymphoedema bible for this one.
We all know that getting sunburnt is bad for us, but it is particularly bad for people with lymphoedema or at risk of getting it, because, apparently, when we get hot (ie when sunbathing) our circulation (blood) tries to cool us down by directing more blood to the capillaries on our skin’s surface - these are normally closed. With more capillaries open, the more lymph fluid and proteins will get into the tissues and that means more work for the now compromised lymphatic system in trying to shift it.
The ‘bible’ also recommends exactly what the canny Roadrunner did - high SPF suncream and/or protective, long sleeved clothing.
It’s a drag, ain’t it? I love the sun, but I’ve had to settle for nice brown legs - and that’s all!
Hi ladies
Hope you dont mind me barging in…Bahons2 can you share with us the title of your bible? Newly diagnosed and feel like totally bewildered and alone with this. My GP knows almost nothing of the disease and the help from BCN is very limited.
Would be grateful for all the information that will help I can get hold of.
Best wishes to all Judy x
Hi Bahons
Thanks for the advice. I know I will be doing sunbathing but will hopefully be ok - . Had only bought factor 15 (used to be bad and use lower then oil), so was just thinking I should buy higher - altho after reading your advice perhaps its the actual heat rather than the sun if you get my drift ??(I do have factor 40 for underarm and rads area that is not covered by tankini top. Kind of worried now but certainly wont be sight seeing etc.
Any other advice/experience gratefully received.
Judy - sorry you have been dx - please use this site and all the different threads - theres always great advice from everyone on here - and whos better to advise than people who have been through it. Really sorry your not getting much infor from bcn - they are usually excellent in my experience.
What stage are you at with dx, treatment etc?
Love to all
F
xx
Hi Sparkler - yes, you could be right about heat rather than sunshine being the problem…after all, hot spas and baths are not recommended, either.
Hi Judy - you are not barging in - you are very welcome! The name of my ‘bible’ is ‘Recognition, Treatment and Management of a Lymphoedema Arm’. The headline author is Professor Neil Piller of the Lymphoedema Assessment Unit, Flinders Surgical Oncology, Flinders Medical Centre in Australia (it has no ISBN number, but it has their own ref number of 0-9579226-0-X). I ended up with a copy of this little booklet because I have been to Oz (thanks to a couple of small windfalls and some help from my partner, now my husband) for low level laser treatment for my lymphoedema - I was that desperate, I’m afraid!
Neil Piller is one of the foremost research scientists in the world on lymphoedema and a very interesting man - he knows so much about lymphoedema! He assessed my arm (I only had it in the right, then!) in the above mentioned Lymphoedema Assessment Unit, which has bioimpedance and tonometry devices, as being suitable for the laser therapy. He gave his time free and I made a donation to the unit. After that, because, as a UK resident, I wasn’t eligible for treatment in the Aussie health service, I went a private physio clinic in Adelaide which had a Class IIIB scanning laser, the most effective kind, do far, for treating lymphoedema. I have to say the results were fantastic - I went in 2002 and have a right arm that looks (but doesn’t always feel) quite normal. I am just as careful with it as I am with the much worse left, tho’, as it it now has to do a load more work because the left is much more badly affected!
Back to the booklet - I suggest googling some of the info I’ve given you to see if you can track it down - good luck, I don’t imagine it’s available over here.
Have you joined the Lymphoedema Support Network (UK charity for suffererers of lymphoedema)? Their web web address is below and they could also be a good starting point for more info.
You could also try googling ‘Lymphoedema Association of Australia’ for general info, too. Their web site is very good, with lots of detailed information.
Goodness, I’ve gone on! Hope some of this is of use…
X to all
S