Hi All
Hope you’re OK? I’m having a bit of a flare up with my arm. It was mostly under control but then my dad died and the doc told me I need to go onto zoladex and I think the combination of stress/grief has made my arm and hand flare up. (hand has never really swelled before).
Woke up today and my arm feels weirdly solid below the elbow. Have gone back to my lymphoedema nurse and am upping body brushing and gentle self massage but any tips that have worked for you would be much appreciated 
Hi Goldie,
I’ve no tips but I’ve had a similar problem. I seem to have a bite on my hand and it’s covered in red itchy marks and the swelling has increased dramatically. Like you, not sure what to do??
Rattles
Thanks Jo,
I’ve phoned the Helpline and they are great but I honestly am not sure they will know. I’ve worked really hard to manage my swelling with exercise, keeping my weight down. My swelling had improved and stabilized but its increasing before my eyes at the moment. I don’t think its cellulitis as there is no heat but its all sore and feels bruised. My GP won’t know and the lymphodema clinic will advise elevatation and watch and wait. Its one of these times when you feel completely isolated and have to self-manage. It makes me sad there is such little support.
Rattles
Hi Rattles
What a complete pain. I think it’s worth seeing the Gp anyway might be that you need a dose of anti biotics. Do you have a pack on standby you could start on? It’s horrible feeling alone but I completely understand what you’re going through. It’s so utterly demoralising. Im sending you a big one armed hug. I know you’re probably doing this but elevate it higher than usual, do lots of deep breathing and keep your fluids up. Have you taken a painkiller or anything? The painfullness is concerning but I think it comes on as the arm gets bigger. Xxxx
Hi Goldie, been looking out for you as I know this is a quiet part of the forum. I appreciate your support and like you, I know to elevate my arm - it makes the swelling go down (in fact if I could live my life in a horizontal position, lymphodema would not be a problem!) I think the redness is being caused by the compression sleeve being too tight and that its being caused by a reaction to insect bite so been dosing up on piriton. How are you? I can only give you the same advice - go back to basics, elevate, do the exercises and breathing and hold on to the fact that you got it under control before and will again. Easy to give advice - not so easy to follow! Rattles x
Thanks Rattles - I appreciate it
I guess we both know we’re sitting here with our arms elevated lol!! Hopefully the Pirton will work. If it doesn’t I think you might need antibiotics. But you know your own arm. I thinking newer sleeves are too tight and it’s causing my hand to swell. It’s not an exact science is it? xxxxxxxx
Yep, that about sums it up!
I think you are right, sleeves can push swelling into hand. I get swelling in lower arm, hand and fingers but my hand swells if I only wear a sleeve. I didn’t make any sense to me til I had an iodine scan and I could see the damage vessels. Its been trial and error and you are spot-on, its not a science. Let me know how you get on. Rattles, x
Oh an iodine scan? I haven’t heard of those? Sounds interesting. My lymphoedema nurse thinks that it’s the old sleeves that aren’t working so maybe I’m wrong lol. Have been going on the lymph assist and she wants me to have four sessions then a measure so will see if it goes down. Nothing so far.
Let me know how you get on too xx
Hi Goldie, that sounds disappointing news but good to have a plan. I’m a bit better - still more swelling and sore underarm but nowhere near as bad as last week. The lesson learned is not too become alarmed by severe swelling as a result of insect bites. Keep going with all the hard work and don’t get disheartened!
Sending much love, Tamsin x
armaid.com/page/2-1315/lymphedema
It’s the one above. There is only one place that sells them in the UK. No I’m not in Lsn will have a look. My lymphoedema nurse puts me on a lymph assist which pumps the arms up and down but apparently these are 2-3 thousand pounds. She said the hormones in my zoladex may be affecting my lymphoedema. I haven’t tried any alternative therapies yet either so thinking about reflexology which may be some good. My sleeves have been good so far but I’m not sure if that will continue now I’m trying to get a different one. Sorry you’ve had trouble Rattles x
Hi,
Is the reflexology with a specialised reflexology lymph drainage trained therapist? This method has been developed by a lady called Sally Kay, she has completed a
medical trial with very promising results (not officially published yet I don’t think). Definitely worth a look.
Hi All
Just to let you know I found a practitioner in reflexology who has been trained by Sally Kay. I’ve had two treatments so far and the arm has gone down a few points each time. It’s not the same as normal reflexology (not quite as relaxing as it’s mostly on the top of the feet) but I’m going to keep going for a bit and see if it makes any inroads. Hope you’re all doing ok in the heat! G xxx
Hello! To be honest. I did and I haven’t taken time to do it properly!
So that’s no help.
Sorry. It’s in a cupboard. But that says more about me than the arm aid. However I didn’t see any immediate results and also I found it a bit awkward so that probably didn’t help!!
Yes it’s so disheartening isn’t it? I saw my nurse on Friday which said I should probably just accept it’s this big now ans we just have to maintain it to ensure its not any bigger. I’ve had a couple of reflexology treatments and they’ve reduced the fluid in a small way. I’ve also just started acupuncture but the therapist said that her experience for people with lymphoedema has been that the only thing which I really worked was lymphatic drainage massage…
Xx