Type 1 Necrobiosis Lipoidica Diabeticum (nld)

[Grace2059]

I've been type 1 diabetic for 20 years, I'm now 24. I also have NLD, for about 6 years now. It used to be bad and ulcerated however none of them have broken down for about 2 years now.
I was just wondering if anyone else gets a horrific pain in the shin and ankle scars? I get really bad shooting and 'tearing pains when I've been on my feet all day, my legs, feet and ankles also swell up quite a bit.

Has anyone else experienced this with there's? If so, is there a solution? Like I said they're not ulcerated or broken down but it's the pain that effecting me. Any advise would be greatly appreciated. Thank you!

 

[SiobhanR]

Hi Grace. Am so sorry to hear you have NLD. I was diagnosed at 23 with type 1 and at 25 went on to develop NLD. As a woman in her 20s i found that more upsetting than the diagnosis itself tbh. It really bothered me for about 2 yrs. It was also hard as there was nothing the doctors coould offer as a solution. At the time there wasnt too many practioners of chinese medicine in Ireland so found a guy off oxford street that was recommended online for NLD. I took this god awful Chinese herbal tea. My flat mates used to gag and got acupuncture on and off for a few years. After a while i just stopped focusing on it and gradually over the years its all but disappeared. That was 20 yrs ago and it hasnt returned. I do think the accupuncture helped. I found the images on the internet also the worse case scenario. Dr google is not always the best. I didnt have ulcerating and was never in too much pain though. Hang in there because it can go on its own. I really feel for you as i know as a young woman how upsetting it was especially becuase I had good control and it has nothing to do with that. Be strong x

 

[SiobhanR]

ps my scars went eventually. you would have to squint to see them now

 

[enzina]

I have read somewhere 20% of NLD cases just disappear. I so much hope for that!

 

[KileNewman]

Hoping someone can help but I’ve got NLD and have done for about 5 years now, I’m male and have been T1 since 2012. I’m absolutely fine with them now as I’ve just learned to live with it as I know there is nothing that can really be done about it. I just want to know if anyone has any suggestions when it comes to being in the sun? Obviously I will wear sun cream but I’m going to the Maldives soon and just hoping for some suggestions. Thank you x

 

[Grace2059]

Every time I have exposed my scars to the sun on holiday, I have had a bad ulceration episode from it and the skin has thinned, even with SPF50 on. My advice would be to cover them when you can. When sun bathing I would wear a small bandage on my leg scars to prevent sun damage and when it isn't possible to cover, slap as much sun cream on as possible and moisturise as much as possible at night. Have a nice time in the Maldives!x

 

[KileNewman]

Thank you for the reply, definitely not gonna let them be exposed as never ulcerated yet so don’t look in starting by a holiday. Tracksuit bottoms and plenty of shade looks like the way to go.