Lipodermatosclerosis is an inflammatory disorder that is caused by venous reflux. Essentially, what happens is that your leg veins contain valves that are incompetent for some reason OR you are unable to walk and so your blood pools in your legs for substantial amounts of time. This causes blood to leak out of your veins and capillaries.
Over time, this blood that leaks out forms scar tissues. Just like when you cut your hand, the body deals with these scar tissues with an inflammation (the red and sore feeling around the cut as it heals!)
The problem is that with long standing venous reflux, the legs never do heal completely. It's almost as if you got a small rubber hammer and lightly tapped your legs fifty times a day. At first there would be no damage, but soon enough... pain city :(
Instead, the inflammation stays for a substantial amount of time until the fat layer under the skin starts to die off, and you get a strange brown or red mark on the skin just above your ankle (often on the inside of your leg). This will slowly grow over time.
Complications
The main complication of lipodermatosclerosis is pain. You can get injections or topical painkillers that can reduce this to an extent. The leg becomes increasingly ugly took, but the pain can be disabling for some people.
Over time, your skin can break down until you get venous ulcers. So if you have LDS it is important to treat it. Ulcers often don’t heal easily, and can become painful and infected. Once you have an ulcer on your leg you have a higher risk of getting another. This is a reason why it is important to use moisturizers on your leg, and protect it from damage.
What can you do about Lipodermatosclerosis?
The main treatment are topical steroids to reduce flairs, and compression with walking. On its own compression isn’t very useful: the compression allows blood to go back up your leg when you walk.
Some people find that compression is very painful when combined with LDS. They may require injections of local painkillers, but in people with a lot of edema or with obesity the cause of the pain may be that the stockings don’t fit properly. It might be good to get the doctor to check the fit, and see whether pneumatic compression devices, dry wraps (ace elastic bandages) or wet wraps (Unna boots) are less painful.
Several people report good results when they take common compression stockings and ask for it to me increased by an inch from the measurement at rest.
Also, a consultation with a vascular surgeon can establish whether it is possible to do something about any venous reflux.
Finally, I hate to say this but losing weight can help since it allows the heart to pump the blood around your veins more easily!
Experimental techniques
Research has shown that stanazol can help reduce inflammation and induration (i.e. make your leg go back to the right shape). Also ultrasound therapy has been shown to improve healing when combined with compression.
Unfortunately, as a rare disease LDS does not have a huge amount of research or clinical trials compared with other diseases, but compression plus pain medication if necessary will prevent your leg being damaged further.
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