Re: Re: New Memeber Experience for from Faith

[Guest guest]

Dear Jeremey,

Just want to let you know that you are not alone. my name is Faith from Zambia. I had my first attack about eleven years ago. and iv had attacks since that time. the only time i remember going into remission was about 7 or 8 years ago.

im 34 years old now and can you imagine im a television journalist and have to cope with all the pressures of work and my social life.

having to expalin to a boyfriend or someone who seems to like you about en and why my legs have got all the strange marks that they have plus the swelling feet and all that goes with it

.. its not easy. But what i can tell you is that be happy for the day you have sorrow be glad for then you live my dear. one day just one day it will be okay ...i dont know when but there will be an answer and you will be the one to give to people who maybe going through something similar that we are going through.

sorry for such a long email.

as rebecca would say shins up

by the way im in japan for the moment doing a short course in tv documentary production.

flew for about 25 hours just to get to tokyo about three weeks ago. my poor feet....i still have a big smile on my face.

bye for nowFaith

Subject: Re: New Memeber Experience / QuestionsTo: erythema_nodosum_Group Date: Thursday, February 4, 2010, 6:00 AM

Hi ,I'm sorry you have EN, but I'm glad you found the group! Having someone who actually understands what we are suffering is wonderful. Welcome to our group!It is my opinion that there are no drugs that really help. I was treated with Prednisone, which did seem to take the edge off a bit, but was not worth it for the side effects. It has been my experience that EN simply "takes its course". There are things that ease the pain ( will describe her support stockings and ice water dips; Louise will tell you about Bragg's Apple Cider Vinegar; and others have found varied means of relief), but I don't believe there is anything that shortens the course or makes an attack "lighter". Others may differ in their thoughts about this issue, but I am relying upon my own experience.Flying?? I could not have done so during my active phases - but I would have had trouble simply getting dressed and going to the airport,

never mind the long walks to gates, etc., etc. If you feel up to it, I don't know of any reason not to. However, you might want to get a medical opinion on that.Best wishes for good health, and a good trip (is it business or pleasure?).Pat EN since 2/2009 (in three days it will be the anniversary of my first lump), in remission right now.>> Hi> I've just found the group and thought I would start by passing on my experience with EN in the hope of helping us all to unravel what starts and stops our condition.> The first time I noticeably encountered EN was in 1995 when I was a fit and healthy 35 year old (uk. male). Before that I remember

some soreness behind my knees but ignored it. The first proper attack as I remember was on my inner thigh which is unusual because since then it has always appeared below the knee on either leg.> The doctor said it was a skin infection and dealt accordingly but eventually it got so bad that I ended up in hospital with a suspected Deep Vain Thrombosis.> Since that time I have been plagued intermittently with this recurrent complaint that pops up on average every year or so usually in the winter months. > After about five years visiting various specialists and having loads of invasive tests, I was diagnosed with EN caused by an unidentifiable auto immune issue. My Doctor wasn't impressed saying that this is a vague blanket term meaning "lumpy legs"! Since then I've struggled to find anything that controls it. Metronidazole which is an antibiotic seemed to help but now I appear to have built up a horrible reaction that means it's a no

go for me.> I really have no idea what the trigger may be. It is possibly stress or throat infections but nothing conclusive has been discovered over the last fifteen years. One of my thoughts is that I had glandular fever as a teenager and was really bad for several months. Could this have damaged or corrupted my immune system in some way? Have any of you had Glandular fever? > I feel for you all who suffer from this debilitating and cruel complaint. Whilst some of us have an identifiable cause many do not which is extremely frustrating. It occurs to me that as there are many hundreds of us in the "don't know" category we may be able to pool our experiences in a structured survey of some kind to try and reveal what common history allergies or triggers we may have had. I would also love to come up with a top ten list of medication that helps us. I'm not sure how to organise this. Any suggestions would be gratefully received.> I'm 50

now and worry about how much this will affect me as I get older. Every time it happens I feel a little more tired. I'm sure we've all got stuff we want to do without being pinned down by EN. One final question – I'm in the middle of an attack now and am meant to take a short flight next week. Is flying ok? My doctor says it is. I hate EN stopping me from doing anything so really want to go>