EN + other symptoms...anyone else?

[Guest guest]

Hello everyone, I'd like to say I've been greatly consoled by this forum, it's

so so reassuring to know I'm not the only sufferer of EN, as my GP keeps

reiterating, " such a rare condition " .

I've been enduring (and recently diagnosed with) EN for about a year now,

started off as painful red golfball-sized lumps on my right shin, moving to my

left shin.

Over the past month or so, I've developed Rheumatoid Arthritis in my knees,

ankles and feet. I thought it was fluid retention, but was confirmed as RA by my

GP.

In addition to this, I've terrible sinus trouble; stuffy nose, post-nasal drip,

sinus pain, which my GP is having a hard time relating this to anything other

than EN.

Do any of you suffer from either/or of these symptoms, in addition to EN? And if

so, have you been medicated accordingly/succesfully??

I was prescribed Indometacin for the EN, but had to stop taking this as it gave

me terrible nausea/dizzyness/stomach ache.

My GP is at present unable to pin-down the reason for my EN, I've been tested

for TB, Sarcoidosis, Strep virus (Strep came back borderline positive) and so

far it seems to be idiopathic!

I would be greatly appreciative if anyone could offer advice on coping with this

day to day, as this has probably been the most difficult year of my life, I'm

constantly fatigued, despite eating a healthy diet, getting good sleep, regular

gentle exercise (as much as I can manage) and my conditions seem to be

worsening!

Thankyou in advance, Hannah. X

[Guest guest]

Hello,

Thank you for posting; I find comfort in this group too. Since the age of 12, I have had EN/chronic panniculitis- for a total of 24 years now. I was Diagnosed with RA and OsteoRA and a low immune system in general. No matter what my 'trigger' is, whether it is RA or something else, it doesn't compare to dealing with the EN itself. For me, it shows up under ANY type of major stress: mentally or physically. Additionally, I believe that hormones can play a factor in my flares.

Although my EN flares are symptomatic, they are far worse than any of my triggers- I would take "just RA" any day of the week". In general, I am usually 'bed stricken' with EN at least twice a year, with nodules ranging in size from dimes to Nerf balls. In the past, a common solution for my heavier flares would be steroids. This seemed like a reasonable solution, until I had a bone density test! My results showed that my bones were of a 80 year old women, and I am one fall away from a broken hip. My doctor said the damage was indeed caused by the years of steroid

treatments. Which brings me to today.As I become older, it seems to take longer for me to bounce back from my EN flares. In early September I broke out with a few bumps on my shins. I took to bed and hit the pain meds, as this is the best method to recovery. After 10 days or so, my nodules increased. I had 15 of them covering my legs and thighs- I even had a nodule on my arm!Last week I could hardly get down my stairs; the pain was so bad. I called my Dr who had me come into her office. She put me on the Steroids and feels its the only option for me right now. So, 8 days into the 60mg steroid treatment, I am walking around. I still have the bumps, but they are breaking down. I still have 3 weeks left in my steroid

treatment. I have to say I am already moody, cant sleep, swollen, hot/cold, and did I mention moody? What a mess, but I am walking. Love and Hugs,AJ

Anjanette Viviano