Hiya

Thanks for the welcome - I am on the Facebook group. I am in Birmingham UK and finding these networks really helpful.

Shaz

Hi

I am new on here. I see my consultant next Tuesday 2nd October. I know nothing about lymphoedema except I have it in my leg and ankle.

SUSIE2012

It has taken me 4 years to be diagnosed. The doctor kept telling me it was water retention but you don't get pain with that. I lost my temper one day and said I wanted a second opinion, and here I am diagnosed and waiting to find out what happens next! From what I have heard it is not very pleasant.

Bye for now

SUSIE

Hi Susie,

Everyones case is different depending on the cause and the location of it. It is incurable so the best we can hope to do is keep it well maintained and stop it from progressing. The main ways are with constant care and vigilance. Once you are assessed as to what stage you are- Stage 1 through to 3, you should be bandaged, and measured, then issued with compression garments. You must wear them all day, keep fit and healthy and get checked often. Then you need to start with MLD - the therapist will start you off, then you should learn to do it yourself, daily if possible.

The secret is to accept it - often takes a while - be patient and know that there others who got it much worse. Hope this helps abit. Keeping in touch with others is very helpful whenever you might feel depressed or frustrated. Lol!

Cheers

Christo

Hi all it is great indeed to be able to share with others on FB and on here. I also had a fab day with fellow lympho folk courtesy of the Macmillan funded and Long Term Conditions Alliance Scotland supported project here in Scotland. It was held so that real people with lymphoedema could contribute to a 'top tips' publication for managing with the condition. There was lots of really good discussion and it was sooooo nice to be in room with so many armsleeves, stockings, gauntlets and no one asking 'what is wrong with your arm?'.

Hi everyone Im from Hull and have been lucky I was diagnosed at 16 and didnt really have much support until I was referred to the Leed lymphodema team which are absolutely fantastic. They have tried several courses of massage and bandaging which although helped me feel better did nothing to reduce the size of my leg which is nearly a metre round at thigh on a size 14 body so I am now waiting for liposuction to try to reduce the size.

Nice to hear from everyone with all our varied experiences of lymphoedema and the support available. I live in Wiltshire and apart from being measured for compression tights, which it takes two to get on, there is no NHS support locally. This I have discovered is because the local vascular consultant who 'diagnoses' lymphoedema doesn't believe in MLD or bandaging as treatment. The local lymphoedema clinic is at a Hospice and my doctor had to make a real fuss for me to be referred there as my lymphoedema isn't directly attributable to cancer but they don't do the massaging there either. I have recently had to give up working as my walking has been affected by the size of my legs and the muscles don't seem to want to work much!

Good luck to everyone and thanks for the Facebook link Christo.

Hello everyone. I'm from Manchester and a Breast Cancer lymphoedema sufferer. It is funny but not in a good way that the lymphoedema service is so erratic and underfunded. That's one of the reasons that a community like this is helpful--we really can share information.Kerrikins, there are devices that help put compression garments on.

Do some of you pay for a MLD trained therapist for awhile? And, more to the point, does it make a difference?

Hi all, I am from West Lothian in central Scotland. Having had problems for many months and making a real nuisance of myself at my local surgery and insisting on every test that was available I recently got a diagnosis of lymphoedema which I had only heard of once before and had no idea what it actually was. I consider myself very lucky as there is a lymphoedema clinic with a specialist nurse not too far away, to which I have been referred but I am struggling with the waiting time. I am currently off work recovering from surgery after a bad bout of cellulitis and the removal of an abscess from my leg. I am desperate to get back to work but am struggling with shoes and still cannot drive due to the pain in my affected ankle. Any advice would be very welcome.

kerrikins, your post struck a chord

as far as my breast surgeon is concerned, no-one he operates on gets lymphoedema & he takes it as a personal insult if you go to an appt wearing compression garments

i'm ok cos i don't need to see him again until i want some revision work done, but i'm seriously considering transferring to someone else so i don't have to put up with remarks like 'if you lost some weight all that [swelling] would go'

i wish i could have mld all over - it shifts the 'fat' in my arms & torso like no-one's business!!

Hi Norberte,

That is so hurtful of your Consultant to say that to you.

Yes I agree the weight does not help our condition.

But losing weight will not cure or reduce the Lymphoedma.

By losing weight we are easing the pressure on our joints and muscles and limbs and make us feel a bit healthier.

By losing weight we are focusing on something else to take our mind off our problems.

thanks ninewells & alfie

i know i should have complained - i used to work in the department! - but didn't have any spare energy to act on behalf of other people cos i was too unwell, just did what i had to to not see him again

i usually do speak up - if you get yourself a bit of a reputation for it, people are more likely to remind themselves you expect to be treated like a human being when they see your name on the clinic list - but was just completely gobsmacked that someone i thought i knew & thought i respected could be so abusive of his power

meanwhile i have had the scars revised & the stretched tissue removed by another surgeon &, 2 weeks later, all healing really well

& that's another 4 1/2 lb of weight off all in one go, too! altho i'm also losing weight slowly but steadily without relying on having bits chopped off to get the scales moving!

thanks for your concern & support both of you - ninewells, your body really does give you enough grief without needing any help from nasty nurses, glad you had a friend with you