Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Hi ,Thanks for sending in your detailed observations, and I am so sorry you have such a severe case of EN. You did say:"the fever will start with nausea and diarehrea"Have you been checked to see if you have Inflammatory Bowel Disease: Ulcerative Colitis or Crohn's Disease? What about Yersinia infections, and Salmonella enteritidis enterocolitis ?Love,idiopathic EN '68 How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 This sounds exactly like my breakouts except that I learned a long time ago, the hospital does nothing for me. I stay in bed and take a melantonin and sleep it off. I too have bills to pay and can't stop working. Its difficult. I only found one pattern recently and its a bacteria. I 'm going to an infectious disease doctor to follow up on the what my rheumatologist has done to see if they've missed anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 , While I don't have such a severe case of EN as you describe having, I have lived with this condition for 12 years now. My first EN flair up was the worst I've experienced and I had a bump here or there several times a year from 1994 - 2002. There's very little that I can say for certain about my EN, except that looking back now, I believe my fear of having an episode seemed to cause an episode and that when I was feeling anxious or experiencing stress from something, I'd have a flairup. I do know that this last case I had in March was probably due to the antibiotics (Azithromycin & Omnicef) that I took for pnuemonia. I'm not a doctor and I can't give you medical advice, but if I were you I think I'd try yoga and the relaxation and meditation that goes along with it. I used to worry all the time about myself and then I got really healthy by cutting out refined sugar and simple carbs from my diet, getting regular excerise and I stopped worrying about the EN and mine went into remission for almost 3 years. My heart just goes out to you when I read how much pain you live with. I've had terrible pain with my EN too and it was so bizarre because I'd only have one little bump or knot as I used to call them. In essense, I believe that for *some* of us there is a HUGE body/mind connection with our EN when no underlying medical condition can be found. Joni EN of unknown origin since 6/94 ---- wrote: > Well well everyone, I have been a part of this group for quite some > time now, I have just been observing what you guys all say about > this disease. I have had EN since 04'. The doctors didnt have a > clue what was going on since I was so young when getting it. They > did a 3cm biopsy to make sure that it was for in fact EN on the top > of my shin back in 04' (still have a bad scar). They said that me > being on birth control for so many years gave me EN. I had been on > birth control for 9 yrs. I have since stopped birth control but > still get out breaks just about every 3 months, that puts me into > the hospital for 3-5 days at a time. I only used to get the > outbreaks maybe twice a year and now iam on my 3rd outbreak this > year. It also used to take weeks to progress, now it takes > minutes...One minute I'll start feeling sick to my stomach and then > notice a spot on my leg and then about 20 mins later a fever will > start with nausea and diarehrea and entire top of shin is red, then > I will take tylenol and a cold shower and put ice packs all over my > body to try to get my fever down, the highest its gotten is 104.7. > When I cant get it below 102 on my own within 12 hrs I go to the ER, > the pain is umbearable, My entire calf and shin of my leg is > inflammaed red blisters and turn purple. Entire leg joints hurt and > hurts like hell to walk. Eyes burn and very very dehydrated. By > the time I get to the hospital they rush me in and try to get an IV > which they never can because Iam so dehydrated. They keep me until > my fever stops spiking and the redness goes down. They normally > give me IV sodium water, Pregnosione and Keflex. And take potassium > idoide by mouth. And bed rest normally gets me within a safe range > to go home. I feel like crap for about 3 to 4 weeks after, tired, > drained....although they say that I should be staying home and not > working for the week after, but they dont pay the bills. Everytime > its about the same pattern and situations. Iam a 23 yr old female > and from Upstate NY and now live in Tampa, FL...Iam trying to find > patterns and try to see what causes these outbreaks, the doctors > havent got a clue they have ruled out everything. Diabetes, > Saracodis, Lymphnoma, Lopus, STDS, Pregnancy....you name it... > Please help! Iam due for another outbreak soon and there is nothing > I can do to prevent it. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2006 Report Share Posted June 24, 2006 jessica, my middle daughter's name is jessica btw. you mention the upset stomach and the " d " . have they ruled out ibd, i.e. crohns disease or ulcerative colitus? jeff > > Well well everyone, I have been a part of this group for quite some > > time now, I have just been observing what you guys all say about > > this disease. I have had EN since 04'. The doctors didnt have a > > clue what was going on since I was so young when getting it. They > > did a 3cm biopsy to make sure that it was for in fact EN on the top > > of my shin back in 04' (still have a bad scar). They said that me > > being on birth control for so many years gave me EN. I had been on > > birth control for 9 yrs. I have since stopped birth control but > > still get out breaks just about every 3 months, that puts me into > > the hospital for 3-5 days at a time. I only used to get the > > outbreaks maybe twice a year and now iam on my 3rd outbreak this > > year. It also used to take weeks to progress, now it takes > > minutes...One minute I'll start feeling sick to my stomach and then > > notice a spot on my leg and then about 20 mins later a fever will > > start with nausea and diarehrea and entire top of shin is red, then > > I will take tylenol and a cold shower and put ice packs all over my > > body to try to get my fever down, the highest its gotten is 104.7. > > When I cant get it below 102 on my own within 12 hrs I go to the ER, > > the pain is umbearable, My entire calf and shin of my leg is > > inflammaed red blisters and turn purple. Entire leg joints hurt and > > hurts like hell to walk. Eyes burn and very very dehydrated. By > > the time I get to the hospital they rush me in and try to get an IV > > which they never can because Iam so dehydrated. They keep me until > > my fever stops spiking and the redness goes down. They normally > > give me IV sodium water, Pregnosione and Keflex. And take potassium > > idoide by mouth. And bed rest normally gets me within a safe range > > to go home. I feel like crap for about 3 to 4 weeks after, tired, > > drained....although they say that I should be staying home and not > > working for the week after, but they dont pay the bills. Everytime > > its about the same pattern and situations. Iam a 23 yr old female > > and from Upstate NY and now live in Tampa, FL...Iam trying to find > > patterns and try to see what causes these outbreaks, the doctors > > havent got a clue they have ruled out everything. Diabetes, > > Saracodis, Lymphnoma, Lopus, STDS, Pregnancy....you name it... > > Please help! Iam due for another outbreak soon and there is nothing > > I can do to prevent it. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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