LSN

4,957 members • 2,298 posts

Welcome to everybody from a Newbie!

Want to say Hi to other members of this community and hope that it is a place where we can benefit from each others experiences.

Everyone has their own problems in coping with Lymphodema and different experiences.

Unfortunately treatment is patchy here in the UK and some sufferers go undiagnosed for too long.

I recently joined another excellent site - Lymphodema people on Facebook which is mainly used by USA but has members from all over the world.

It is an excellent source of information and support.

I hope this network will develop into a real community where we can all share and care in a friendly community.

Have a good day folks

Christo

Staffs UK

21 Replies

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Hiya

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

Shaz

Thanks for the shout! Looked for you on FB but don't see you.

Agree that these networks really help us cope with this little known disease.

Take care.

Christo

Its the ' Lymphoedema is part of who I Am ' - group I am on Christo

Shaz

Oh ok! I thought you were on the Lympodema People FB . . .

here is the link - it is really useful and friendly too -

facebook.com/groups/2824159...

If you need an invite, let me know.

Cheers

Christo

Morning Christo brilliant link thanks just what we all needed something to help us pull together gins

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

Hiya back to you,

Good luck with your consultant. Hope you have a good one - at least you have been diagnosed. It took me over 5 years before I knew what it was!

it is important to keep networking and researching everything you can.

This site is very helpful and friendly . . .

facebook.com/groups/2824159...

All the best

Christo

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.

kerrikins - it is indeed frustrating when you have a doctor who is ignorant about lymphodema. There is plenty of info out there if they would only take the trouble to find out. Treatment in UK is pretty patchy and it is a postcodes lottery as to what help you find in your area. One really does have to make a fuss and not be pushed around - it sounds like you really do need a course of bandaging to reduce the limbs before getting fitted with correct size of compression stockings or tights. The MLD is an important aspect in management of this debilitating disease. keep the courage and glad you find the FB network helpful.

Cheers

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.

Hi Lruk

Ask your GP or Lymphoedma Nurse, Clinic or Hospital for you to be referred to the Orthotics Dept.

They measure your feet for a pair of Boots or Shoes to be made for you.

The styles are not that brilliant but who cares if it helps you to walk.

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,

I would have put in an official complaint about him, you can ask to be seen by someone else. I had to do this with my Alopeciat Consultant who did not believe in treating patients with steroid treatment, well why was he in this dept? He felt there was no written evidence that sterroid treatment worked. Excuse me who's hair returned when getting the treatment. His nurse also didn't beileve in it, she went out her way to hurt me by using the largest needle possible, the scalp is very sensative and the smaller the needle the better, my friend was with me and witnessed it all. She passed by all the small needles and even left the room to get a larger one so i would feel it worse. I did complain and the Hospital did act quickly, no longer have to go near him.

He would take it as an insult that you would need to wear a sleeve/ garment, i would take it as an insult that he didn't give me proper after care, in his case i wouldn't go back to him i would defo change Doctors. Glad that you no longer need his help at the momentand have recoverd from your op. Have a look at who else can do reconstruction for you. Keep your pride don't let him take away your confidence like that.

I had a nurse who was scanning my legs during a diplo scan, who told me if i wasnt so fat maybe she would get a better reading, i was in tears, she never blinked an eyelid. People can be so nasty, sometimes you wished they could just have a little taste of what we all cope with. In my case diet doesn't help much as i have Lipoedema also, my body produces fat in both my arms and legs no matter how hard i diet, (Genetic problem.) But like everyone else i do watch what i eat and stay on top of my food as much as possible, it can be a little sole destroying at times.very small body and large limbs, but having had Lipo now the limbs are looking so much better.

All the best for the future.

ninewells.

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