Help !

[Doglover1014]

I have Lymphoedema in the top of my foot (right foot) and toes . It took a few years to finally find out what exactly it was . I played soccer for years then after I graduated HS the swelling became more noticeable and much more noticeable after two pregnancy back to back . I have to find an actual Lymphoedema specialist only thing i do is wear compressions & honestly don’t see much of a difference for they are knee highs . I was going to therapy and the OT was wrapping my leg and toes but it literally had me in pain and exhausted of going twice a week . I would tell him about the pain and how I couldn’t even sleep with my leg wrapped he told me to suck it up !! I got irritated and stopped going ! I see a vascular doctor now who diagnosed me. Any tips or suggestions ? I’m 27 and just want to manage it .

[Lynora]

I see from your profile you are in the US. This site is based in the UK - with many international contributors.

If possible, find an MLD practitioner. The OT really sounds a bit brutal. Bandaging can be awkward and cumbersome but must NOT cause pain.

There are a number of sites you could access on your side of The Pond, to find resources and support:

lymphnet.org

clt-lana.org

lymphaticnetwork.org

inspire.com

lymphedemapeople.com

lymphedematreatmentact.org

[veriterc]

I know exactly how you feel. The sooner the Govt. stops spouting the mantra "NHS is the envy of the world" and we get real, the better. Early on I went off to Europe for cancer treatment, found out how good they were over the Channel, and listened when a Hungarian explained exactly why my Lymphoedema wasn't responding to compression garments. And she was right - she recommended Manual Lymphatic Drainage (MLD). Don't know if this would work for you, but suggest you do some serious Googling and find out if any Lymphoedema clinics in your area have European trained staff - then get a referral.

Inidentally I used to take parties of Foreign Doctors around NHS hospitals. They paid our Foreign Office for study trips to take them round and show off NHS. Not one of these countries has copied the NHS.

[Chocolate-e-clare]

Hi Doglover. Lynora has given you some useful links. Find a better therapist (CLT) near you. They will give you the strategies you need to improve your condition. The bandaging/wrapping will be done differently by each therapist - hopefully more comfortably next time. The wrapping is to help reduce the size of your leg/legs - and then you can be measured for compression stockings (knee high or thigh high - depends on what you need) that are both comfortable and effective. Lymphedema is a lifelong condition which can be managed well with a daily routine of self care, compression and exercise/good nutrition. I'm in Texas. Message me (friend me first) and I can give you more info if you are struggling. Also, there are many Lymphedema Facebook groups - thousands of people out there willing to help and advise you. Some advice is extremely helpful, some not helpful at all.

[MsGem]

Hi Doglover. CT lymphoid here. I also have lymphedema in both feet and toes. My right side is much worse. InitiallyI was treated by an OT that specialized in lymphedema and I also couldn’t tolerate the wrapping. It especially caused painful pressure on my pinkie toes. We decided to go to compression garments which were much more comfortable and I was able to reduce the size of my legs and feet with daily use of the compression garments during the day and Tribute night compression boots at night. Good luck!