lymphodema in BOTH arms

[quarteter]

Hi ladies, a quick update..my lymphodema suddenly worsened in my good arm last month and I now have to wear a sleeve permanently  I was just getting used to it then two weeks ago had a wasp sting on my other side (where I have no nodes). This weekend the dreaded swelling has started...only in upper arm for now.

My nurse thinks the hot summer is to blame for my good arm. I am dreading the thought of two sleeves. Also, as a violinist this could have huge implications on my playing. Just wanted a rant!! 

[quarteter]

Hi..I have lymphoedema in my "good arm"! It came on after having a PICC line removed back in 2008. The PICC line was not a success from the outset, as I couldn't straighten my arm after it was inserted, and after one chemo it had to be removed as it would not flush. My arm lymphoedema is mild but it did flare up after my last flight. It has gone down since. I also have it in two fingers on my good side, and that came on three years ago during the summer, not sure why...
It is worth knowing that when I asked the same question as you as to why it had come in my good side at clinic, the nurse said that half of her patients had never had cancer, and often there was not an explanation for it, sadly.
Liz x

[bulldogbyrne]

I really feel for you. I developed lymphoedema in my 'affected' side last year, after an infection in my arm. I had mastectomy in 2010, at the time I had implant which developed cellulitis several times having to be drained on several occassions. I had reconstruction in 2011 and lymphoedema 'only' developed last year. I have sleeve and glove on right side only at the mo but it not doing much.......tho if I leave it of my arm does swell more. So I have got to wear sleeve for work and it is so hot at the mo. I have appoit at lymphoedema service next month but I not sure they doing much for me.....I had a sleeve, glove and exercises which helped for a short time but the gloves fall to bits after about a week !! and the glove sticks under my arm so I will be telling them all this but not sure anything more can be done. I would be overly concerned if I developed it on my 'good' side and would demand further test as to why...........cause I only understand it effects my 'bad' side as they removed my lymph nodes......so if it effected my other side I would want to know what was wrong with them then........Good luck !!!

[FizBix]

that is just not fair !!!!!
hi morwenna - i think i remember you from years ago
i have just popped on here as i had a scare but so far so good i seem to be ok
i can remeber writing out some arm exercises that they taught me here in spain
i will see if they are still here and bump themfornyou littlemrs
good luck

[Lynberi]

Just thinking about you. Sorry I don't have much to say that helps. I have Lymphoedema in my left arm after total clearance and was worried it would happen in my other arm when I had an elected 2nd. Mastectomy but as there was no Lymph node involvement all seems ok so far. Hope you get to the bottom of why it has happened. It's a horrible thing and a real pain wearing the compression garments so winge and whine away. Hope it gets sorted for you x

[Rattles]

Hello littlemrs,
I posted a while a go and my post has disappeared!! So frustrating!!
I am sorry you are having to deal with lymphoedema in both arms. And, also tests which I can understand is probabaly just too much to think about. I can also understand why the prospect of two sleeves is so daunting.
I have lymphoemea in both arms- in right arm, its in my fingers, hand and lower arm and I wear a long fingered sleeve to the elbow. In the left arm, its confined to upper arm and atm I only use a sleeve if I am flying.
I have had bilateral breast cancer- 2 years between diagnoses and both times had lymph clearance. My consultant just told me he is surprised left-side is holding up as it had multiple surgeries (cheers, for that I thought!) and to be careful.
I will stop here in case my old post comes back but just wanted you to at least know you are not alone.
Take care and good luck, Rattles x

[littlemrs]

thanks morwenna. The sun is shining so heres to a good day.

[Morwenna]

You do not sound whiney! My goodness, you have perfect reason to be anxious and upset about this, whatever the cause is, and how it is affecting you. I am worried enough about my one arm, which puffs up from time to time after activity, especially since I got mosquito bites on my wrist!

I have no words that I feel particularly helpful but am sending you all the positive thoughts in the world that it will turn out to be something not too serious, and hopefully reversible! xxx

[littlemrs]

Hi ladies,

I normally manage to stay positive and have lived with lymphodema in my "cancer treatment" side arm and hand for 5 years without too many difficulties. I've now developed it in my right arm and hand. I'm having scans etc to find the cause. Weirdly I'm not stressing about the cause but about the impact of lymphodema in both limbs. I can't have any treatment until the cause is found.
Yesterday it suddenly dawned on me that I'm changed forever. It's one thing to wear my compression sleeve with pride but on both arms .......? Is anyone out there who has this? I'm feeling really low and don't want to talk to my family as I'm playing down the other issue of WHY the lymph is blocked in my right arm.

sorry to sound whiney. I should be grasteful I'm having investigations, had good cancer treatment on diagnosis 5 years ago etc etc.