Lymphadema help : can anyone tell me if this... - Lipoedema UK

Lipoedema UK

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Lymphadema help

lizmurphy61 profile image
7 Replies

can anyone tell me if this ever goes away Thanks

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lizmurphy61 profile image
lizmurphy61
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7 Replies

I have been told no cure they can only control it.

LadyL07 profile image
LadyL07

Hi Liz

Unfortunately there isn't a cure for Lymphoedema, however with the help of your Lymphedema Clinic/Nurse and compression garments it is manageable. I'm not about you tell you it's an easy road to travel but I will say that once you've learned to accept that you have it and have your compression garments it does become easier to live with. You can get plenty of support from the Lymphedema support network (LSN) and if you're on Facebook there are also lots of groups of people who support each other....it somehow feels much easier 'talking' to others who really do know exactly what you're going through.

Good luck on your journey 💐

Raven345 profile image
Raven345

As far as I know the best that can be done, is for you to get and wear the tights along with a massage technique, in order to contain the condition, on the NHS. Outside of this there is the private sector that does a form of lymphatic drainage. This is costly but with good results should it work for you. The downside being from what I read before in this regards, is that it may not be permanent at times. If I could afford it, I would do it. Liz there is more information in regards to this, keep researching. I have had this condition since childhood and only recently have been recognised by my present doctor to having the need to be referred to seeing a specialist. I have been asking why my legs are so big and heavy, for over 40 years and as I have moved home and area's on several occasions, previously I was fobbed of on asking different GPS. I went privately to an MLD massage therapist and got my condition recognised, then went to my GP and explained what I'd done and the results, it was only then she referred me, I go this week for an evaluation. Two months previously the same doctor said I had arthritis in my legs. ? Good luck for the future.

disabledby profile image
disabledby

No this does not go away. It tends to progress, with the rogue fat cells increasing and also with an increase in ridges and bumps in the affected parts, with collections of what feel like small marbles under the skin. It is like wearing a painful fat suit. It is disgraceful that medics and others get very little training in this and many sufferers find that they are told they are just fat, and need to eat less, exercise more or ar offered inappropriate gastric surgery, which does not work. Ordinary dieting will help to reduce ordinary fat, but will not reduce the parts affected by lipoedema, which can also turn into lipo-lymphoedema with other swelling and the lymph system gets damaged. There are a couple of specialist types of liposuction which is very effective and this is done not for cosmetic reasons, but to reduce pain and swelling and improve mobility. Specially trained nurses can measure you for compression garments and do lymphatic massage to relieve pain and swelling. The travel socks and ordinary compression socks are not the same.

lizmurphy61 profile image
lizmurphy61

Thank you for answering my question about this I have to be honest it scares the life out of me as I have so many other health issues does anyone else suffer from other medical issues and does this go.right up your legs or just to your knees sorry for all The questions about this x

in reply to lizmurphy61

Hi, only got diagnosed a couple of months ago and mine is full legs to the top.

Bijingo profile image
Bijingo in reply to lizmurphy61

Hi Liz, everyone's bodies are different, as is the progression of lymphoedema. Some people manage it really well, and sometimes the lymphoedema looks like it's gone away (but it can return with age and the onset of other conditions). A lymphoedema therapist should be able to help you with self-management and trying to improve your condition. If you are carrying excess weight, lymphoedema often improves with weight loss. I have met a lady with lymphoedema in just one toe (ankle trauma). I have met people with lymphoedema in all limbs and torso. There is often no predicting how the lymphoedema will progress, but there is so much you can do to try to keep it at bay. Knowledge is power - keep asking questions and finding solutions.