The mind boggles!

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Over the past couple of days I have been reading so many different theories and ideas on LS and how to manage and treat this disease.  To be honest, it is overwhelming.  There are so many things that seem to work for certain people, but I also know everyone is different, so it is difficult to know what might work for me. Also, there is the fear of trying something that doesn't work, this could just serve to depress me further and cause me more stress. This of course is no good for LS.  It is just so frustrating and confusing.  I have never been good at making decisions! Haha

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  • Posted

    Sorry that it is so confusing g30.  I think that Goldstein's lecture outlines a great starting place.  Morrell also has had a number of great posts for getting started, including moisturizing, steroid recommendations, warm soaks, lowering stress, and cutting out sugar, etc.  And for those who would like to dig deeper, there are a number of people who are trying natural treatments (which can be used with the clob steroid), and others trying to understand how to quench the inflammation in our bodies that can be associated with or underlying the autoimmune issues, including LS and the  thyroid issues can often go along with LS.  Others are also exploring the possible links to rough handling of the tissues (such as overwashing) and for a number of women, reflecting on their prior histories that include sexual abuse and trauma.  I think that as you think about these branches on the tree of LS, you will find your way and be able to conceptualize where you are.  It can be overwhelming at first, but that's likely a normal part of exploring all of this and coming to terms with it.  I think that we need to grieve and cry, too--this can be a discouraging disorder, but it is not without hope.  Wishing you the best of luck to you on this journey.   --Suzanne
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    • Posted

      Well said, Suzanne – 'branches on the tree of LS'.

      Georgie, it's been a long year for me since diagnosis and I have also felt overwhelmed by a number of things I needed time to absorb and then begin to act on. And always there's a layer of regret that I spent years hiding and ignoring LS.

      I tend to post a set of clear points repeatedly, because the structure of this sort of forum drives slightly dormant topics to the bottom and keeps busy conversations – even if they're mostly social and emotional support – to the top, and newcomers tend to post a fresh discussion without combing through several pages of topics.

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  • Posted

    I can relate G.  At first there is a lot of 'organizing the self' needed before a person can be open to learing more.  

    My way has been to take in the amount of info I could hold and leave the rest for another time.  Another time I used what sparked my interest and what seemed to connect with my problem at that particular time.

    As far as the various supplements like emu-oil and coconut oil concerns, since there is no risk using them, I simply tried one and then another. And my experience is that sometimes one thing works and another time the other. Does that make sense?  Not to me either. 

    One moment I shrug my shoulders, another time I find myself plane desperate, especially when I don't seem to find the right soothing thing that makes it liveable.

    Grrr. 

    Other than glob kind of meds, there is nothing much that turns things around. CMO has helped with de-fusing, but stop using it and you're back to where you started.

    In spite of - my art has been to find a path that makes life possible. And I admit - it took some time.     

     

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  • Posted

    Ha ha...thats the bit i like best about your post...and from the replies ...well being on a branch from the tree of Lichen is inspired.

    Sorry its a complex disease.

    To add to the suggestions...whilst really sore maybe try organic or manuka honey..that comes from sky23. Also there's a fast starting on tues that we're all invited to join. xx

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    • Posted

      Hey Mary I'm going to do a one day fast since I've never fasted before.  I am going to fast in next couple of weeks whilst I have a few days off work.  I think it may be unsafe to fast while in work as I spend a lot of hours on my feet.
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    • Posted

      That's brilliant g,

      you'll really enjoy it...would you tell sky as well on her post 'about to try a little experiment' it was her idea! Its something I used to do from time to time and its great ...very cleansing. If you let us know the date we'll think of you and send support x some of us starting this tues so check out the thread!! xxxxxxxxxxxx great you're seeming more positive xxxxxxxxxxxxx

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    • Posted

      g and hanny 

      the thread about fasting is on sky23's thread entitled "Hi about to try a little experiment"...it on the LS site and is quite old now as its been going on for a while. 

      if you go into the home menu and follow topics to LS it will hopefully be listed. you'll see commentary of todays date.

      You're doing great g! hope you can find it. Will also ask moderators to guide you tho no-one will be there til tomo x

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    • Posted

      how are you getting on now g?

      have you decided on a date to start your own fast?

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    • Posted

      Hi marey.  I have decided since I've managed to arrange time off work I am going to do my fast tomorrow.  I will not be eating after 8.30 this evening until Wednesday morning.  I know that will only be a 36 hour fast, but since it will be my first time fasting, I figure it will be safer to start more slowly.  My symptoms seem to be pretty much calm at the moment, thank you for asking marey.  Had a couple of difficult days during my recent period, but I put that down to having to use sanitary towels
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    • Posted

      oh brilliant g

      I am so pleased and excited! The spritual energy that we are raising between us in this little corner is amazing!!!!!!!!!!!!

      that is great news to hear things are calmer for you. Have you cut something out...maybe wheat and gluten...that did it for me! Was so grateful to the woman on this site who mentioned it.

      well we'll all be thinking of each other after 8pm tonight. that in itself is a powerful thing! xxxxxxxxxxxxxxxxxxxxxxxxxxx

      sorry about the sanitary towels...cotton rags a possibilty?

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    • Posted

      I have thought about that marey.  It would probably take some adaptation on the idea.  I think I would have to make some kind of belt and make the cotton towels with loops on the end.  I have to know they will stay in place whilst at work.  It would be very embarrassing if they didnt
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    • Posted

      well thats what we used to wear in the 'olden days'...wonder if you could get a belt still from somewhere? Maybe on line ..or fix up something for your self...good thinking! could be nice and comfy x
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    • Posted

      I remember as a kid, my mum used to wear sanitary towels with loops and she had a belt for it.  That's what made me think about it.  Or maybe specific pants made for time of the month with velcro strips and handmade cotton towels also with velcro
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    • Posted

      I found a seller online.  Belt is ordered, now I just need to make the cotton pads woohoo a project!
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    • Posted

      great well done! hope organic cotton can be sourced...can even be rinsed and recycled. you'll set a trend!
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