What's Erythema Nodosum (EN), you ask? It's basically slightly reddish, very tender nodules, occurring just under the skin, usually occurring on the lower legs. I've got them. This is new to me, and is occurring at a time overlapping some other new and troubling symptoms, specifically, intermittent mild to severe abdominal pain with nausea and fatigue. I've spent many couchant days with Wellington, just hurting and trying to feel better. I've had several days when sudden onset of pain and/or nausea hit me just before or at work.
The most recent episode occurred in the office last Wednesday around 1:45pm. My belly was wrenched with cramping pain, so I headed right to the rest room, hoping for relief. I broke out in a cold, dripping sweat while a terrible nausea came over me, all the while, still doubled over in pain. I had a meeting scheduled with my boss for 2pm, but ended up having to reschedule it, due to my unavailability. I had to text him about my emergency. I was stuck in that stall for about an hour before I felt stable enough to get my purse to leave work and drive home. My pain continued for several hours until it slowly began to dissipate to a milder version that would continue for about two more days. The heating pad on my belly helped with the discomfort as I watched episodes of Dr. G: Medical Examiner and Mystery Diagnosis, my newest favorite sick day shows.
There are several causes indicated for the occurrence of EN, including various infections and Inflammatory Bowel Diseases like Ulcerative Colitis or Crohn's Disease. The last visit to the doctor for the abdominal pain was on Aug. 27th with a new gastroenterologist, who suggested I try stopping the daily probiotics, in case my guts have too many bacteria in them. I have been off the probiotics since late August now, yet I still continue to have the episodes. All blood and urine tests done thus far have been "normal" so I'm not sure what is behind all this. I just know the abdominal pains and EN are linked. It's too coincidental for these to occur for independent reasons, right?
I have had a few days of a mild sore throat in mid-August, before all of this started, but I find it hard to believe that I could have had strep, a common cause of EN. Strep also doesn't explain the abdominal stuff going on.
At any rate, my research on this is definitely continuing until I can at least determine my next plan of action. With the way my last few doctor visits went, I feel like I need to present them with plausible ideas. The lack of thoroughness is very disheartening to me. My dermatologist was actually the one who diagnosed the EN, with just a quick glance and touch. He prescribed a topical steroid that I've been applying religiously since my diagnosis on Sep. 24th. He also gave me no reason to dig deeper for an underlying cause, which makes me a bit sad. Thus far, all the info I've dug up on EN has been on my own. He didn't even write the name down - I had to find it based on something that sounded like what he said, which I remembered as "ereth-- something".
On the bright side, last Saturday and Sunday were a breath of fresh air. I felt lots better than I had been lately, even as recently as Friday. I got outside, did some walking, and enjoyed some quality time with Don. I don't want to speak too soon, but today is going pretty well so far, too. However, both Don and I noticed that I've been having sick time on Wednesdays lately. We are wondering if there is something in the air or water in my work building (the water is not great, but we have a filter for drinking water which I use), or if there is some other thing in my routine, perhaps, that is contributing to my deterioration after a couple of days of the work week.
Over the next few weeks, I'm going to see if I can find out what helps. The first thing I'm trying is not taking my morning vitamins and supplements, since I noticed that I forgot to take them both Saturday and Sunday. I skipped them purposely this morning, to see if I can make it to Wednesday a little more easily this week. If that doesn't work, perhaps I'll try avoiding drinking the building's water and bring in my own. If that doesn't help, maybe I can try to get more sleep, like I definitely did last weekend.
I'm thinking something in my genetic makeup or somewhere in my body is at odds with something I'm exposing to it. Maybe I can narrow it down and avoid it. Wish me luck!
Bonnie, do you eat much soy?
ReplyDeleteNo, not much, but I do have some. I usually have almond milk with my cereal, but my husband has regular soymilk with his, so when I run out, I use the soymilk. I am not lactose intolerant or anything, just prefer not to drink milk for various reasons.
ReplyDeleteAlso, please, call me Benia. :)
Do you work every day?
ReplyDeleteYes, Monday through Friday, as I can. I have been taking a lot of sick time lately, but I work a full time job.
ReplyDeleteGood luck I've been back and forth with EN you have no IDEA how lucky you are to be diagnosed that quickly, I went through months of agonising pain and legs 3x their normal size my friends said it looked like I had elephantitis lol.
ReplyDeleteI have had EN for almost a year now, I've have an uncountable amount of blood tests, still no cure or cause found.
I was put recently and finally on a short 2 week course of steroids... this hasn't helped.
Gp's & Doctors just seem to be guessing.. I guess as you said it's up to us to work it out, meanwhile the EN has spread to my thighs and arms, and honestly appears to be scarring.
But the main thing is to keep your hopes up, and not let it ruin your life.
Thanks for writing, bbyyen. I'm so sorry you had to deal with such a mess for this condition. I really didn't know EN could progress so drastically as to increase your legs to such a size! I do feel lucky!
ReplyDeleteI have a great dermatologist and doing some digging online before my visit helped prepare me for the diagnosis. Had I not already been seeing the derm for the moles, I am sure I would be living with mysterious lumps and leaving my internist scratching his head at me (as usual). Plus, who knows how much it would have progressed without proper treatment?
I do appreciate my early diagnosis, but I still feel there is more to it that has yet to be discovered. Stay tuned and hopefully my journey will lead me to answers! I hope you find answers for your case, too. Best of luck to you!
Have your doctor rule out sarcoidosis..
ReplyDeleteAnonymous person, I think you may be on to something with the Sarcoidosis. My voice is increasingly hoarse over the past few years now. Although I have had x-rays and scans of my chest a few years back, perhaps there is something there that was too small to detect at the time.
ReplyDeleteI am due for a check-up with my allergy/asthma doctor soon. If I survive the current bout of abdominal stuff, I'll be going there next and will ask about Sarcoidosis.
Thanks.
Is it definitely a Gastro thing?
ReplyDeleteThe most nauseous I ever felt in my life was when I had ovarian cysts. For moths I felt nauseous But the cramping would be below my stomach and travel up my body. As for EN I get it every time my hormones shift drastically, go off birth control, change birth control. It can also be caused by lots of prescription drugs, i.e Accutane, birth control, all sulfa-drugs.
Well, I have considered non-digestive causes for my recent digestive problems, but so far all the testing has focused on the digestive tract. Now that a digestive treatment is actually helping me, I'm thinking it is more digestive, though anything's possible:
ReplyDeletehttp://xsarenkax.blogspot.com/2011/02/belly-update-colonoscopy-canceled.html
I go to my gynecologist for check-ups yearly and have been on steady birth control pills for many years now with no break. The only abnormality found there thus far is a small uterine fibroid and it's not growing much.
I'll definitely keep an open mind about causes, but as of today, the EN is actually much better and so are my digestive problems. Of course I'll write about any new developments here in my blog.
try progesterone treatment. it works every time for my EN
ReplyDeleteI am already on birth control meds that contain progesterone. My EN has currently subsided, and I've only had that one bout thus far, but the shadow of it still remains on my leg as a reminder. Whatever causes this, I'm not sure, but I wouldn't be surprised if it returned.
ReplyDelete