Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 I get a tiny bump that turns into more bumps etc and this can take about 6 weeks to get to the point where I am in so much pain I am bed ridden too. I have a question. I just recently got one nodule on my left shin and nothing else has appeared. I was thinking today that maybe this is all it's going to be, but then I read this thread. How probable is it that this is a "warning" for me, too? EEK! I can't fathom another major flare up. ::sigh:: LorriWith hurricanes, tornadoes, floods, fires, severe thunderstorms and earthquakes tearing up the country from one end to another, the quote of the year is:Jay Leno: "Are we sure this is a good time to take God out of the Pledge of Allegiance?"//\\\......///\\(/^;^\).....C^;^D.()).(()....__|v|__(¯)¯\_/¯(¯)./...:...\.(_( :X: (_)/ |..:..| \.\\):X:(//.\ (__:__) /./....')ss1\|====|')/(¯)¸¸¸¸\...(¯)| |..\.\.|......\.\.|.(¯)|.......(¯)|..|.|........|_|..(¯)...ss1..(_)Chloe ~~~Casey 5/10/1999~~~~~3/12/1996The Lord's blessed me with2 Irish Dancers and 3 Hockey players...what a mix!Brenden & Braden (11/24/1993) & Caleb (10/18/2001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 Dear Steph, Interestingly my EN seems to be nearly opposite to yours! My EN, now, hits quickly and leaves slowly! I used to get 2 nodules (I thought of them as my 'warning') that would last for a week or so and then 2 weeks later I'd get the full blown episode. I sued to think that if I could reduce my activity sufficiently that I could avoid the full blown episode completely but my success rate was not good! In the past 3 or 4 years my episodes have completely changed. I no longer have any 'warning' lumps and the entire process evolves in a much short and much, much more intense period. I'm not sure which way is better! The old way took longer but if I curtailed my activates I could still manage my life. these days it knocks me around with the high temps, pain, number of nodules and all the rest that I am utterly confined to bed - often for a couple of weeks. SSKI hasn't every given me any relief; in the old days I usually did without any meds and now I use NSAIDs to help with pain and swelling. My current specialist (the one who has me on this incredibly restricted diet) believes that anti-inflammatories do nasty things to our immune systems - now how about THAT for an idea? I'm glad to hear that you are back on your feet again! I hope your recovery continues - quickly!! Bobby -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.362 / Virus Database: 267.12.8/162 - Release Date: 5/11/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 Hi Bobby, Glad to hear from you I definately get a " warning " . I'm usually in the shower and my hand automatically reaches to the lump. Even if it isn't even an actually lump yet, I just know whats coming. I get a tiny bump that turns into more bumps etc and this can take about 6 weeks to get to the point where I am in so much pain I am bed ridden too. This time I was in bed for about a week and the fevers were the worst. I took the SSKI for a week and then the day I stopped taking it my EN started going down. Don't get me wrong, I still have the lumps and dents but the pain just subsided over night! I really don't know if it is the SSKI or just the fact that the EN has run its course! I'm still having trouble with my energy levels and finding it hard to get motivated. Have also been craving sugar which isn't me? Probably to get the energy I guess. Anyway, I was thinking that one day we might be able to meet as I know you're in Sydney. I've never actually met anyone that has this condition and would love to compare! Sometimes it's easy to feel so alone with this condition. Take care, Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 Hi Lorri,I think I actually answered your question in my last post although I don't tend to bemaking much sense to myself today! I actually just read it. But thanks for responding again. At least with this group we have the support that we desperately need! AMEN!! LorriWith hurricanes, tornadoes, floods, fires, severe thunderstorms and earthquakes tearing up the country from one end to another, the quote of the year is:Jay Leno: "Are we sure this is a good time to take God out of the Pledge of Allegiance?"//\\\......///\\(/^;^\).....C^;^D.()).(()....__|v|__(¯)¯\_/¯(¯)./...:...\.(_( :X: (_)/ |..:..| \.\\):X:(//.\ (__:__) /./....')ss1\|====|')/(¯)¸¸¸¸\...(¯)| |..\.\.|......\.\.|.(¯)|.......(¯)|..|.|........|_|..(¯)...ss1..(_)Chloe ~~~Casey 5/10/1999~~~~~3/12/1996The Lord's blessed me with2 Irish Dancers and 3 Hockey players...what a mix!Brenden & Braden (11/24/1993) & Caleb (10/18/2001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 Hi Lorri, I think I actually answered your question in my last post although I don't tend to bemaking much sense to myself today! Don't panic as sometimes the tiny ones don't come to anything. In the past when I get a " warning bump " I have tried both bed rest and carrying on as normal and there doesn't seem to be a pattern for me. It just has a mind of its own. Once I even went two years without a flare up! I was so upset to find a lump one morning so I know how you feel. It is so frustrating but try and stay positive At least with this group we have the support that we desperately need! x steph Quote Link to comment Share on other sites More sharing options...
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