Experiences with

Lymphoedema

I have lymphoedema in my left leg and wear full length compression. My GP wants to prescribe Amlodipine for mild hypertension. I note that a side effect is swollen ankles and this does concern me greatly. Any advice please. Thank you

Out of interest, has anyone with arm lymphoedema tried lino cutting (I'm talking about the crafting activity, not laying flooring!)? I'd really like to give it a go, but it also strikes me as precisely the kind of thing that might aggravate my lymphoedema. (Repetitive, carving action.)

I have Primary Lymphoedema. The last 2 years developed severe bulbous painful varicose veins to right leg and now starting on left. GP won’t refer me due to the Lymphoedema. I often get sharp pains, flutters. I have had DVT excluded. Could it be the blanket making things worse?

The LSN has worked with Kendal Lymphology to produce 4 videos showing SLD sequences that you can do at home to help manage your lymphoedema. There are 4 titles depending on wher you have your swelling and are available free on our YouTube channel. Copy and paste the links below into your browser.

Lymphoedema in pregnancy, young children and teenagers has also been included.

Has anybody completed a course of laser hair removal that could share whether it has affected their lymphoedema?

hi there, I have leg lymphoedema from Cx treatment and wear compression 24/7. I’m looking to move to London from New Zealand and wondered if anyone knew what the ‘good’ catchment areas are for access to lymphoedema clinic eg via St George’s hospital (or any others)?

My lymphoedema is worse in my left leg. Should I refuse?

Anita Wallace chats to Maxine Skepple about her life living with lymphoedema of the leg. https://youtu.be/SFq4n-hCatQ

Hi everyone :-) I wear Class 3 Compression stockings below the knee. When the weather warms up, so do my legs and I end up with a rash on both legs. I'm then unable to wear the stockings to keep the swelling down. The rash can take sometimes four days or longer to settle. Does anyone else have the same

The LSN has been working with the ILF/ Lymphoedema Wales and Pocket medic to produce a further video to add to the ILF collection on self management, "Preparing to look after myself independently". It has now been published on the ILF website worth a view. https://medic.video/ilf-lymph

hi everyone Is anyone considering joining the uk action re use of Johnson & Johnson talcum powder and the link to certain ovarian cancers? I’m in my sixties and I remember using their talc throughout the 1970’s it was very common in my peer group. Action has been taken in the states and I heard a radio

I was diagnosed with lymphoedema more than 10 years ago. Made to measure compression stockings have been working well. Now due to other health concerns I believe I have lost weight (my clothes are looser). My leg pains are increasing so much so it is difficult to walk.

i have Lymphedema currently in left arm and hand...... so i have questions for others also have frozen shoulder and more questions

Hi I have lymphoedema in my whole left leg and the doctors I have seen believe it is a post thrombotic condition following a DVT I had in that leg in 2021. Otherwise I am very fit and healthy.

Has anyone tried infared sauna? It’s meant to be good for circulation and there seems to be lots of places that have infared saunas cropping up lately for sports related recovery. It works at lower temperatures than the standard sauna.

I have lymphoedema in my whole left leg and the doctors I have seen believe it is a post thrombotic condition following a DVT I had in that leg in 2021. Otherwise I am very fit and healthy.

I know my lymphoedema swelling is mainly fatty tissue now so not sure what to expect, at the minute the bandage looks as it has a few ridges, undulating, I have had it refreshed once and second time will be tomorrow, given that this is such a commitment to go through to get it done, not able to drive

I have lymphoedema in both legs and 4 weeks ago the feelings in my legs have changed . I still have tingling feelings . But now they are really really cold . Anyone have this

I now have Lymphoedema on both legs, after having surgery for Cancer and the Lymph nodes removed from both sides of my pelvis, and wear compressions. The itching is really bothering me. I have to remove my compressions and I just want to scratch my legs so badly but try very hard not to.