Mild lymphodema and lipodermotosclerosis: I was... - LSN

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Mild lymphodema and lipodermotosclerosis

sbridges
sbridges

I was diagnosed with Lipodermatosclorosis and mild lymphdema several years back. All the doctors I had seen previously imidiately said it was a vascular problem. I had every test known to man and never had anything wrong with my veins. I also have severe osteo arthritis. In 2000 I had a hysterectomy and after that I started getting a brown patch on my left ankle. It kept on until it completely surrounded my ankle and then it started on my right ankle the same way. They started turning red and blue thus the uninformed diagnosis of veinus problems. They weren't painful just ugly. Then my legs started swelling. It started with just my right leg and eventually my left all the way to my hip. My doctor advised a pump after diuretics didn't touch it. It took them down in 30 minutes. Having severe arthritis and being in tremendous pain my doctor started giving me depomedrol shots once a month. Guess what? I took my swelling down. I have done this for several years but if I go over the 30 days the swelling comes back. I had knee replacement surgery on both knees and I feel great and would like to get off the shots but when I try the swelling comes back. I don't think there is another person in the world with this kind of problem. It is just crazy.

5 Replies
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Are you in the US?

sbridges
sbridges
in reply to Lynora

Yes

Lynora
Lynora
in reply to sbridges

Thought so, when you mentioned the depomedrol shots. Steroids are magic, but not for the long term management of lymphoedema.

This forum is based in the UK, with members from other countries.

You may already be aware of US support groups, who have information about lymphoedema ‘aware’ physicians, but if not, the following may be useful for you:

lymphnet.org

lymphedemapeople.com

lymphaticnetwork.org

sbridges
sbridges
in reply to Lynora

No I don't know any around here and all the doctor that diagnosed me said was wear support hose and walked out. I was in tears. So I have just settled for what works for me. I have severe arthritis in my hands and cannot pull up the compression stockings. I have small ankles and large calves and what helps one place don't help in the other. I really don't know what to do. I will check out the sites you recommended. Thanks

I think you would be wise to get off the Depmedrol if you can. If you can control the swelling with standard LE treatments you could go with that. It would definitely be more labor intensive than just taking the shots but you wouldn’t have the risks associated with long term steroid use. You might want to get a prescription with a high quality lymphedema therapist to start getting expert help managing the swelling as you wean off the steroid medication.

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