New to the site

Hi I have recently been diagnosed with lymphoedema. I'm experiencing swollen legs which ache and just generally look unattractive. Have had first appointment with nurse and issued support garments but find them really uncomfortable. Came across this site and thought it would be nice to join to chat with others in my position.

15 Replies

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  • Hi HazieC - what has caused your Lymphoedema? Have you had cancer treatment? Other than giving you compression garments, did your lymphoedema clinic teach you self lymphatic drainage? Advise you on skin care? Gives you tips about exercise? You can contact the LSN - if you call between 10 and 3 on weekdays, you could talk to a real human - they are very helpful.

  • Hi Lynora. thank you for you reply. I am lucky in that I have ended up with it due to severe keloid scars after an accident some years ago that have damaged my lymph glands at the tops of my legs. I must admit that I have noticed a difference if I do 30 mins a day on the treadmill, so I try to do this daily. This week however things have been up in the air and I have not been able to so have noticed the difference. Thanks for the advice on the LSN I will give them a call.

  • Hi Hazie, yes, follow Lenora's advice - call LSN for more info. You probably have been given ready-to-wear garments/stockings, which are not always the best fit or solution. Ideally, you have the extra fluid moved out of your legs before going into garments. Also, being in the healthy weight range is great for helping to reduce swelling. And then there is the importance of skin care - keep skin clean and moisturise daily. Lots you can do. Welcome, and ask questions anytime - the more info you give, the better advice we can give. All the best.

  • Hi Clare thank you for your reply. yes I need to get into some good habits and moisturise a lot more a big push is on the way to get my weight down, Ive got about 8lb to go to get to a slimmer and healthier me.

  • Hi HaziC. Did you have MLD and bandaging on your legs to push out some of the swelling prior to putting on garments. When your leg is full and you try putting garments it dies hurt. Should always have some MLD first to reduce swelling some. Just my opinion. Best of luck to you

  • Hi Snaomi no I don't have any bandaging. thank you for your advice I will ask about that at my next appointment. Its really good to find a site where people share advice etc

  • I developed lymphoedema in my left leg six years ago. Occasionally, the leg would hurt when I put on my tights. Now I've developed it in my right leg. I was interested in Snaomi's comment that her legs ache when leg is full and then puts her tights on. This would happen to me too but was misled years ago by lymphoedema nurse telling me this disorder doesn't hurt - it can and does but thankfully not all the time. Need to do SLD again but stopped on medical advice.

  • Lymphedema manifests itself and progresses in many ways. Many people who have it in the legs do eventually have pain. People who say it doesn't hurt probably don't have the disease. First the fluid pushes on everything in the leg. 2. It is a toxin. That in itself wreaks havoc. It does hurthat. Putting on a garment without reducing the leg is painful.

  • Hi Caroline, mine started in the left leg but is now in both. I only found out I had it recently but think its been around for a while. I sit down a lot at work which I don't think helps too much, and yet putting my feet up at the end of the day can help. Its all a bit trial and error for me at the moment.

  • It's really to bad that more people with this disease cannot get together with each other to help each other give the massages and wraps. Especially when there are so few therapist.

  • Snaomi

    I like your idea of each individual learning a new skill and giving each other MLD.

    Perhaps if you belong to a local LE club (meeting) this could be suggested I for one would be willing to learn and give help to someone else who in return could do the same for me. It would not cost anything except petrol money but you would need to live within a certain radius to make it cost effective.

    My local hospital is 40miles away is I need to visit my LE nurse.

    But anyone can contact LSN for their local group meeting. there you could make the suggestion and swap addresses who would welcome the treatment.

  • Look on MLDUK website for properly qualified MLD therapists throughout the UK - getting regular MLD for Lymphie limbs makes a huge positive difference in managing the oedema and discomfort/pain. It's a misnomer that LE isn't painful. For some it's not painful but many of us have tremendously debilitating pain. I have primary LE in both legs and some days it's awful pain. It's also a disease (medically classified as a disease) that is progressive i.e. Cellular changes resulting in deterioration and changes to the skin and tissue due to the stagnant/trapped lymph. Therefore drainage through manual means (by onesself SLD and from a therapist MLD) is essential to slow progression of the disease to the next stage (4 stages), and to manage symptoms and reduce pain.

  • I take Amitriptyline 10mg nightly for painful for LE without these tablets I could not sleep.

    If the pain is so unbearable then I can take 20mg. As they make you really drowsey I take Codeine during the day for LE and back pain.

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