Guest guest Posted October 29, 2005 Report Share Posted October 29, 2005 I wanted to write you all and tell you about my EN progress. I have idiopathic EN. It started out with severe headache for a few days then I began running a fever on August 30, 2005. I remember feeling pain in my kidney/back area and my head felt like it was going to explode. Any movement caused tremendous pain....I felt like I was going to die. (tests, etc are in my member file) The fever & pain lasted about a week and a half and ended up at 103 before it finally broke for good. The nodules continued erupting for about 4 weeks. Since the beginning of October I have been "new" nodule free and all that is left are some very faint bruise like marks that are not tender. I've been taking prednisone daily since the first week of September. At first he started me on it 2x daily, then upped it to 3x daily and now I am back down to 2x daily. This will continue for the next few weeks until mid-November when I go in for another SED rate check, etc. I'm also on a non-steroid drug...though I can't remember the name of it at this late hour, and ibuprofen or lortab when needed. My face is very swollen, I'm tired of the excess sweating, the acne just won't go away, I've had lots of sleeping problems and my mood swings and depression are TERRIBLE! I'm ready to be off the steroids. Score one point for Miss Lorri....I've only gained 1 lb since being on prednisone. Hallelujah!!! As for my update: I am hopeful that I will have nothing but good news to tell my Dr. next month. It has been raining here since Friday and I have only felt minor knee and ankle tenderness. This is big for me...the last storm I could barely move!! I do know that at any point my joints may hurt again, but I guess I'm just at the point where I am tired of feeling negative about this. I'm tired of it controlling my life. I pray the debilitating pain doesn't return, especially when I begin decreasing the steroid. The hardest part is not knowing what to expect....we are all different and being idiopathic there isn't anything treatable that might take away the EN. I am subject to its non-discriminating whim, which if I am correct, thrives on a stressful environment. Boy am I screwed!!! LOL I'm still plagued with questions....ones I may never get an answer to. Will I go into remission (or is this considered remission) and stay there? Will I have joint pain for years w/o nodules? Will I erupt in painful nodules again in the near future? If I do erupt with nodules, will I have the headaches and fever again? The one where I felt like I was going to die??!! I have learned so much from this support group and I am truly grateful that there is a place where EN sufferers can go to be encouraged and get good solid EN information. I guess I'll just have to take every day as it comes and pray for a comfortable day......Today. 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 October 30, 2005 Report Share Posted October 30, 2005 Dear Lorri, Glad you are feeling so much better! You are right that the course of EN is impossible to predict, at least that this point, given how little research has been done. I too am idiopathic and I can tell you my first bout was by far the worse. I had the flu-like symptoms and body aches and fever. I have never experienced that again. I do get the lumps, sometimes a very mild temperature elevation, and sometimes a sensation of not breathing as well as usual. Usually I just a get a lump or two on the left in the " usual " location. I used to get lumps on both shins, but the right has not had EN for a couple decades now. :-) I hope things continue to improve for you and that you have a " non-eventful " prednisone taper. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2005 Report Share Posted October 30, 2005 Dear Lorri, Glad you are feeling so much better! You are right that the course of EN is impossible to predict, at least that this point, given how little research has been done. I too am idiopathic and I can tell you my first bout was by far the worse. I had the flu-like symptoms and body aches and fever. I have never experienced that again. I do get the lumps, sometimes a very mild temperature elevation, and sometimes a sensation of not breathing as well as usual. Usually I just a get a lump or two on the left in the " usual " location. I used to get lumps on both shins, but the right has not had EN for a couple decades now. :-) I hope things continue to improve for you and that you have a " non-eventful " prednisone taper. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2005 Report Share Posted October 30, 2005 Dear Lorri, Glad you are feeling so much better! You are right that the course of EN is impossible to predict, at least that this point, given how little research has been done. I too am idiopathic and I can tell you my first bout was by far the worse. I had the flu-like symptoms and body aches and fever. I have never experienced that again. I do get the lumps, sometimes a very mild temperature elevation, and sometimes a sensation of not breathing as well as usual. Usually I just a get a lump or two on the left in the " usual " location. I used to get lumps on both shins, but the right has not had EN for a couple decades now. :-) I hope things continue to improve for you and that you have a " non-eventful " prednisone taper. Love, Quote Link to comment Share on other sites More sharing options...
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