Help Please

[fretty123]

i am a 44 year old female with lymphodema after breat cancer. im currently suffering alot with swelling and pain in my arm. i wear a compression stocking. ive got my first appointment on thursday with the specialist nurse. what can i expect from this? im feeling quite desperate about the whole situation.

[clown]

I do feel for you. Try not to feel desperate - Try and find the best way to live with your condition. I have it on both arms following cancer so I really know a bit about it! e.g I sleep with small pillows under my arms which really helps me. I have a chair with arm rests - not to say this is what you need you need to try and find what helps you. Hopefully the massage you will get will give you some relief - KEEP SMILING -It helps.

[karieAnn in reply to clown]

Clown, it is not massage and rather manual lymphatic drainage. This is part of complete decongestive therapy. I am a lymphedema therapist. Fretty your trained therapist or nurse will guide you accordingly. Have no fear all will be well. Please remember management is key as lymphedema is a life long condition.

[Taffia]

I also have Lymphoedema in my arm after a mastectomy. At my first

app with the breast care nurse she measured both my arms and fitted me with a compression sleeve. She showed me how to do SLD which is a massage I do every morning. I haven't seen a specialist nurse,perhaps you'll be offered MLD which is a massage they do to reduce the swelling. I'd all depends on how much bigger your swollen arm is. Mine was 25% bigger and is now down to 8-5% after 18 months. Don't worry,it does take a while to come to terms with it.

[fretty123]

Thanks ladies it's good to know others understand. It can be so isolating. My arm has got much bigger over the last six months and I'm not sure why or how to stop it x

[Taffia]

I know,- it can be very flustrating. My swelling goes down when I rest it( on holiday) but you can't spend your life not using your arm. The heat does make it swell and ache a lot!! Good luck on Thutsday.

[lovesradio]

I am another lymphie after mastectomy and lymph node removal under left arm, diagnosed in 2007 after realised that achy/bruised feeling in forearm and slightly puffy back of hand could be lymphoedema. Measurement by specialist physio showed a 17% difference! But over the years have practised sld every night more or less religiously while listening to music (helps with rhythm!), continued to practise yoga, swim and wear compression sleeve and glove, all keeps it at manageable level with occasional ups and downs, aches and weird pains. When you see specialist ask to get your sleeve checked for correct size/fit, as a wrongly fitting one can exacerbate rather than help.

[linda6]

I also have swelling under my arm pit and sometimes the fluid can cause pain. I wear a compression sleeve and glove I started off with just a sleeve but I found that the fluid accumulated in my hand. Everyday I excercise with small arm weights (with my sleeve on) and I find that this tends to keep the swelling down but if I miss a day without exercising my swelling gets worse. When i see the lymphoedema nurse both arms are measured and both arms are compared it is only then that I realise how swollen my affected arm actually is. I yearn for the nice slim arm that I once had and being able to wear short sleeve t shirts without being self conscious but until then I live in hope that one day they might find a 'cure.'. Best of luck for Thursday.

[fretty123]

we are all suffering ladies arnt we. its so unfair after everything you have all been through !!!! the truth is, i am nearly 5 years post surgery and this has only really posed a problem for me in the last six months. before that the arm was bigger, but only noticable to me, and im not really bothered what it looks like, its how it feels. the swell is getting so bad it is moving across to my chest wall. all i do is wear a stocking and the exercises from the leaflet. im hoping the specialist nurse will do more and teach me more to at least bring it back to where it was. in desperation i have been reading up about super micro surgery ????? anybody have any experience of this ? ps, your comments do mean alot to me xxx

[Lizziejane in reply to fretty123]

I too am investigating Supermicrosurgery and just this evening had a chat with surgeon based in Oxford whom I will be going to see in next few months! I had breast cancer 20yrs ago but lymphoedema only started 10yrs later. Been through range of treatments MLD various sleeves bandaging which only on 2days&had to be cut off due to hand swelling to alarming size!! I am right handed&arm is 25percent bigger which goes up&down depending on useage but you can't not use it especially living alone-you don't have choice!! I now have to speak very very nicely to my GP about funding.......needless to say I'm NOT hopeful and. Very very expensive to have done privately.....I do have private health insurance so will also try to beat them into submission as this is a very unpleasant condition with not enough funding..!!

[JackieMc]

Hi Ladies!!! I too am suffering from Lymphodema have been for 2 years following Breast Cancer and treatment etc....

i understand the pain the frustration and the sadness behind it all!!!

I have just had a Lymph Node Transfer after reading about it int he The Daily Mail Last year!!!

3 weeks into my recovery and already its visibly come down, is softer and less painfull!!! im yet to have it measured but it was 37% bigger than my right arm!!!! I live in hope!!

throughout i have found exercise controls it but STRESS increases it.

[fretty123 in reply to JackieMc]

oh my god jackie, how did you arrange this, where did you start ?

xx

[62carolo in reply to JackieMc]

Hello Jackie did you get this treatment through the NHS or did you have to self fund?

[Gem272 in reply to JackieMc]

Hi Jackie, I too have had lymph node transfer and was just wondering how your arm is now? Have you had any other surgery to assist the progress? I have been recommended lymph lipo but feeling a bit reluctant! Xx

[naominorthenellis]

hi Fretty, if you could let me know where you are in the UK i will arrange for you to try the lympha press. please email me and we can talk about it:[e-mail]

look forward to hearing from you.

Naomi

[JackieMc]

Hi Fretty

i emailed the surgeon who is in the process of trying to obtain NHS funding!!! fortunately when i recently contacted for any further progression, she had just had it approved by BMI hospitals and BUPA cover.

I had it done privately but i think there is hope for everyone on NHS but seems to be taking a long time.

I live in London, the surgeon in based in Birmingham. Ms Anne Dancey - check her out!!!!

I had my surgery in Birmingham and will have my check in 3 weeks time there to see how much it has come down

XXX

[fretty123 in reply to JackieMc]

hi jackie, ive got a few questions i would like to as you. i hope you dont mind. it its ok can you email me at [e-mail] . no worries if you prefer not to.

thanks

wendy

[Lizziejane in reply to JackieMc]

Wow......I also read the same article but was dismissed as not being tried&tested enough yet when I discussed it with my consultant in Cornwall.....!!! I then read about another Plastic Surgeon again in the daily mail who is based at the Nuffield Orthopaedicic Centre in Oxford and he said its having promising results!! His name is Dominic Furniss and he said he saw 6 women in clinic today with same problem.....so a lot of us out there&about time the NHS did more to help us......!!!

[fretty123]

that sounds amazing !!!! you have given me so much hope i want to cry. im in agony 5today, im normally a really cheerful person and this is bringing me rock bottom. its like a nagging tooth ache that wont go away !!!!

xxx

[JackieMc in reply to fretty123]

Ahhh bless you fretty!! After all we have been through too!!! Stay strong and I wish you well.

Have you tried the kinesiology taping? I bought some from amazon and this site can send you the instructions to use it!!! Just trying to think what else I did for relief.

Exercise also helped me. Light resistance training I.e. small hand weights or resistance machines at the gym...

[clown]

Just a word of warning: I used kinesiology tape under lymphedema therapist and came out in spots. I was obviously allergic to it - try a small area first. Good Luck.

[norberte]

hi fretty

if you're anything like me, and lots of other people, you will be fretting for a bit while you get your head round the whole thing - it's called being normal!

but it does get easier, i promise - you develop a routine, & start fretting less

the lymphoedema nurse will be able to show you different sleeves & gloves to try, how to do simple lymphatic drainage (sld), how to apply kinesiotape, how to moisturise, what to do if you get a cut ....

but not all at once - they know that a really important part of all this is having time to get your head round the whole idea, & they're there for that too - have a good sob, they also provide tissues

& you've found this site really early, which is great - no question's too stupid, & no whinge is too pathetic for us lot, we've all been there!

dunno if it helps, but i try to remind myself that i've got lymphoedema as a swapsie for the tumour - it is a chore to manage, but tumours don't respond to sleeves & sld so i reckon i'm still quids in (but it took me quite a while to be able to think like that, & 3 years later i still can't manage to do that all the time)