Diagnosis

Hello Jane. I'm so sorry you have joined this forum. I have knowingly had LS for eight years after being misdiagnosed for many more. There is light at the end of the tunnel. However give yourself time to get used to the idea and don't be too hard on yourself. I think I cried for about two years, and felt so alone. And then I found this forum. We have all got your back as much as we can, virtually. And we all look after each other. Now I'm in a place where my routines fit into my life and I can forget for days at a time that I have it. I have a spray bottle and some moisturiser next to the toilet and that's all I need.

I have steroid in my arsenal too, use it to get things stable. Don't be afraid of it, it is your friend. They say steroid thins the skin, but LS thickens the skin, so it will help. It won't cause remission but it will stop it progressing. Then, when you are feeling a bit more under control physically, start experimenting. There is a wealth of knowledge on here and what we have learned is that we all react differently, what suits one person, doesn't suit another - just keep on experimenting until you find your balance. Even when you know what works for you, keep going, new ideas get posted all the time.

Read the thread 'An Experiment with Borax,' after three years of using it I am seeing un-fusing happen, and I was in a bad way to start with. The itching stopped instantly, after the first application, and there was some un-fusing, but the big changes have happened very gradually over a long time. I am seeing bits of myself appear that I thought were gone for ever.

Find three things that work and rotate them, a month each. If you only use one thing it will get less effective, you need to keep surprising LS. For example I don't use steroid now, but every 6 months or so I'll use it every day for a month and no borax. After every toilet visit I use a dilute spray of borax followed by a moisturiser - I rotate one month of avocado oil with calendula matricaria essential oil in, when my bottle is empty I'm going to try pure olive oil with which someone here has had good results, and maybe give the borax a rest for a few weeks. I overused coconut oil and got sensitive to it, but hope to be able to go back to it.

I limit sugar, but not gluten, but I do only eat sourdough which has a different chemical composition from processed bread. I found cutting it out had no effect at all on me. Nor did dairy, and now I've been diagnosed with osteoporosis, I'm not going to. I think the biggest positive change with diet is cutting out processed food, it's cheaper to cook from fresh, and tastier too. Processed food is full of things we really shouldn't be putting in our bodies. Beware, this goes for processed 'free from' foods too. Get in the habit of reading labels and if the lists are too long, chose something else. Bread shouldn't have a paragraph of ingredients - only flour, water, yeast and salt. Everything else is there to increase their profit, not your health.

So; read the threads, take advice, try out things people suggest, use steroid and eat less processed stuff. You WILL get there, It's a shock I know, but you WILL find your balance.

Good Luck

Bridge

Just scroll through this thread and read. It will make you feel a lot better.

 Every day a new person posts their first “just diagnosed and panicking” post ... I did it six months ago.  You are not alone. 

Tons of great advice on here. Many people are able to manage it just fine with the prescribed topical treatment. Other home remedies are recommended based on personal experience for some. 

Sorry you had to join this club. <3

You’re going to be ok. 

Hi Jane, thanks for asking the question re borax, I'm in the UK and been following this site for a while now and would also like to know where you can source borax and if the stuff in the UK is the same pharmaceutical composition as in USA, hopefully someone will be able to help us.

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