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Complete despair - LS taking over entire upper body, arms and legs

Posted , 7 users are following.

andrew2527
andrew2527

Hi again,

I've been away for a while trying to deal with this, but over the last 6 months this LS has started to take over my enire upper body, it's now spreading down my arms and legs.  I have many large patches (e.g. 6-7 inches) of LS on my chest, back etc.  And lots of small patches that are growing in size every day.  

I have tried to cut out as much sugar as possible over the last several months.  It doesn't seem to have helped.  I take strong 180mg antihistamines for the itching, sometimes they take the edge off. I put steroid cream on but there are so many areas and it covers so much of my skin I'm worried about using too much.

The LS areas feel hot to the touch, I don't feel hot, but my skin is hot, in the areas that have LS. 

I am so stressed out coninually with my neighbours (screaming kids etc), job etc.  I'm moving house to try and ease the stress in the long term as I am convinced it doesn't help.  I've gone part time at work to try and ease the stress too.

I am so depressed that this is spreading, seemingly non-stop all over my body.

Just came back on here to check in, and update.  No improvement, just worsening every day.  And I don't know what to do!!!

Andrew

0 likes, 28 replies

28 Replies

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  • Chrisy
    Chrisy andrew2527

    Posted

    Hi Andrew, that sounds awful and you sound like you could do with some help. Have you thought of trying a holistic therapist of some kind. They can help greatly with stress and many types of skin conditions. They may be able to help you calm things down. All the best
    • andrew2527
      andrew2527 Chrisy

      Posted

      Thanks Chrissy, I think that may be the next step.
  • Guppy007
    Guppy007 andrew2527

    Posted

    Hi, It does sound like it is getting worse, and so I agree with the other post regarding finding a holistic doctor.  I believe it is your body possibly telling you it is unhappy with something that you are eating..I think I would seriously think about embarking on some kind of detox diet,  but I think you would need help for this from a qualified dietician...thats what I would do in your shoes.
    • andrew2527
      andrew2527 Guppy007

      Posted

      Thank you, I tried cutting out the sugar, I lost quite a bit of weight - well enough that people were starting to notice, and it wasn't really making any difference, so I've let that slip.  I think I'm going to try and find a holistic doctor next.
  • AnneMarie4321
    AnneMarie4321 andrew2527

    Posted

    Give up ALL wheat -- everything! No bread, no breaded chicken, etc. Even gluten free is bad because of all the other additives that are also bad. Protein and vegetables are what you should eat. Bathe in baking soda baths until it starts to clear up.
    • andrew2527
      andrew2527 AnneMarie4321

      Posted

      Thanks Anne Marie. I tried baking soda baths but it really started stinging after a few minutes!  I think, because I have so many areas of LS on my body.  Next step then may be to cut out bread.  I'll give it a go!
  • rockin_R
    rockin_R andrew2527

    Posted

    Bless your little heart. How did it get so out of hand I wish I could give you a hug right now but it would probably hurt you. I just started on this forum with a recent diagnosis did you not medicate your patches in the first place or did it come on my crazy what happened
    • andrew2527
      andrew2527 rockin_R

      Posted

      I've had it for a while, but it started coming on worse in 2013, a patch on my groin, then on my chest, then back, and now I have patches all over my back, tops of legs, arms, chest, sides.  It's horrible, it's come on suddenly over the last 6 months or so.  Dermatologist not really interested.  Has prescribed protopic, with no effect, and dermovate which I use but never really been told how much to use etc.  It's tough!
  • Neldog
    Neldog andrew2527

    Posted

    Has anyone on here been prescribed low dose naltexone?   I've been to my doctor and she thought it might be a good idea when i showed her the information....    Its supposed to help calm the immune system and helps with auto immune problems....    My doc isnt allowed to prescribe it. (Orange label?).  So has referred me to a dermatologist, to see if we can get them to prescribe.      Might be worth you giving it a try?   Or a least look it up and see what you think.......

    x..

    • Neldog
      Neldog

      Posted

      Sorry, i spelled it wrong... It's naltrexone.

       

    • Neldog
      Neldog

      Posted

      The reason for my suggesting the Low dose naltrexone is because the lichen sclerosus is thought to be auto immune.....
    • andrew2527
      andrew2527 Neldog

      Posted

      Thank you - I haven't heard of naltrexone, I'll check it out.
  • annewin
    annewin andrew2527

    Posted

    Feel so sorry for you.   I know what its like to suffer terrible itching. Some have suggested that it could be something in your diet that is affecting you, but it could also be something external. Everthing we touch today conatins so many chemicals that nothing is safe any more.   I'm not suggesting that this is an allergy,  I'm no doctor, but I've had many serious allergy issues and ultimately I found out it was due to some chemical.   Whne they changed the formula in the toothpaste I used, I suffered terrible urticaria all over.  Washing and dish washing detergents,  soaps, cosmetics etc. the list is endless.  Try just using natural products, always run extra rinse cycles in machines. Try to avoid using a cleaning products, often plain water with salt or lemon juice will do the job.  look on the internet for natural alternatives for everything.  We lived without all this stuff in the old days.   Hope this helps.
    • andrew2527
      andrew2527 annewin

      Posted

      Interesting thoughts, thank you.  I am pretty convinced this is an autoimmune condition, so I'm not sure how chemicals/cleaning products would come into plany, but it occurs that if the skin is irritated by something, it might stimulate a response from the immunse system..... maybe the chemicals on the skin?  

      I'll have a look at what I can change in regards to cleaning/washing etc.  Thank you.

    • AnneMarie4321
      AnneMarie4321 andrew2527

      Posted

      Yes, it's autoimmune. Topical treatments aren't getting to the root of the problem, because it's continually ignited by what you put in your mouth -- it's what you're eating. Your body is crying out through your skin. The fact that it's getting worse says your immune system is taking a beating. My LS has gone into remission by giving up wheat in all forms.
    • rockin_R
      rockin_R AnneMarie4321

      Posted

      Awesome girlfriend this is just beginning for me within the last 5 years maybe period only on my genitals but I would have liked to have used them if you know what I mean I'm only 53 LOL but with the hysterectomy and no hormones the inside can't be used anyway. So I'm interested to know in a nutshell what we products did you give up besides wheat bread thank you and I'm so glad you're doing well
    • AnneMarie4321
      AnneMarie4321 rockin_R

      Posted

      I'm a young 53 as well! LOL. Had never heard of such a thing as LS until my first outbreak last October (2015). Had no clue what it was until I found this site during a second outbreak in March. I saw where someone else put themselves into remission by giving up wheat. Don't fall for the gluten free trap, either. There are so many additives as to make it just as bad.

      Stop eating wheat based bread, bread crumbs, croutons, crackers, pasta, beer, breaded chicken, etc etc. ANYTHING containing any form of wheat.

      I've been in remission ever since -- losing weight, too, simply by giving it up.

    • AnneMarie4321
      AnneMarie4321 rockin_R

      Posted

      Oh, in further answer to your question -- gave up sugar, too. Occasionally will have plain Greek yogurt with honey drizzled over it for a sweet. By and large, I've noticed giving up wheat and sugar has eliminated all cravings for those foods anyway!
    • rockin_R
      rockin_R AnneMarie4321

      Posted

      I had written you this whole paragraph and disappeared anyway I don't know anything about this stuff still totally at a loss. Gynecologist and dermatology it but I've never seen it because I can't get you know. Do you have pictures of yours since there are other parts of your bod affected. What did you take pictures of it when you had it I'd like to see it if you don't mind
    • rockin_R
      rockin_R AnneMarie4321

      Posted

      That's cool I have a scar on my left leg and my dermatologist asked me if that was lichen sclerosus. There was a forum that I'm on and people are showing pictures of their stuff that way it helps people identify because you're scared to death they're actually asking people instead of doctors
    • AnneMarie4321
      AnneMarie4321 rockin_R

      Posted

      Well let's see what strategies work so we can get you healed up and in remission! 😃
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