sleepless nights

Have you tried CMO cream? I have LS and have been using it for 2 months and this has made a massive difference......

I haven't used CMO cream, but in fact have been using emu oil and am finally getting relief, although I wake Up lots of time in the night, so that problem has yet to be resolved. sleepless nights! Am I the only person with itchy ears? if there is anyone else out there with this problem, please tell me what to do! Take care!

Can anyone tell me what is a good lubricant when having sex, as this is an unbearable problem and I haven't found the right cream yet! Emu oil is brilliant for moisturising, but not satisfactory as a lubricant! I would be very grateful for some ideas.

In honesty I think the pain is caused by the inflammation and hence even using a lubricant is not going to make it a painless activity...

Hi KEP,

I tend to agree with you, but live in the hope that someone will come up with a miracle solution!

I think the Silk lubricant is nice to use in between the steroid applications whatever activities are or aren't planned...

I also think my condition is better if I wear nightshirts without underwear at night and try to generally wear cooler clothes.

Have you stopped using all soaps any anything that might irritate?

Yes, I use Aqueous Cream for washing and, as I also have an itchy head, I use Oilatum shampoo, which was recommended by the dermatologist. I have some Silk lubricant at the ready, but not had the courage to use it yet! I had a hysterectomy in my thirties and, later, another operation for rectal prolapse, so as a result am slightly incontinent. I love nightshirts, but stick to pj's in winter!

Perhaps Spring will eventually bring some nice weather, as I would love to wear cooler clothes again!

Hello Horses!

I realised that you posted your initial message ages ago, but I just wanted to say that I am following the low oxylate diet and I think it's working for me. I feel a great deal better, am sleeping through the night at last and am not sore or itchy anymore. I've only been on it for about 2 and a half weeks so far, so this is a massive turnaround in a very short space of time. I almost feel normal! I have to say that the first couple of days on the diet I thought it was getting worse and then it settled and has got better and better each day. I would highly recommend anyone to give it a go to see if it works - I realise we are all so different, probably with different triggers, but it is worth investigating.

Sam x

Hi Sam,

Thanks for your message. I must admit I bought a cookery book for low oxylate diet, but have not properly started using it yet. However, I will definitely take it more seriously, if it means I can sleep properly!! Do you follow it rigidly, or do you treat yourself every so often? I like a glass of wine at the weekend, is this allowed? Thanks again for the advice and keep in touch!

Horses

This is interesting! I have found avoiding tomatoes and Earl Grey Tea seem to be advantageous. Something I have found which sort of anaesthetises things is Salcura Intensive Skin spray. i first bought it in Boots but have ordered it from the internet since. It doesn't seem to cure anything, but it does stop the unbearable inching at night. When you first spray it on it can be quite alarmingly hot feeling and just in case you have an adverse reaction try spraying it on your hand or wrist to make sure.

Mistakenly I thought it it was curing the problem last year and so stopped the Dermovate and also stopped inspecting myself because I was so worried, which seemed always to make it worse. I went to the doctor for a checkup who said that I had no infection and not much scarring (which surprised her considering the extent of the white parches), and the condition was not going away without the steroid cream - damn!

love and best wishes to everyone dealing with this annoying condition!

Margaret

Thanks for the tip about tomatoes (I ate two today!), so will try to keep off them in future! I always seem to get the intense itching at night as well and dermovate seems to help this more than anything else!

Take care,

Horses

Yes, when I am warm.. With night sweats , my LS wakes me up ??it's awful !