I have been suffering with erythema nodosum for 5 months now, accompanied by depression and anxiety

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Hi everyone,

Just before Xmas 2016 I noticed these painful red lumps on the bottom of my feet, they didn't worry me as at first I thought they were a spider bite, then they got worse and I was hobbling around work but again putting up with it, not too worried because the doctor had told me it was planturfacsitis, the pain got worse and I could barely walk, also I had to sleep with my feet hanging off the bed as they were so sensitive to touch, then 23rd December I woke up in the night feeet throbbing with pain, my left knee felt so painful it was completely stiff I could not bend or straighten it without extreme pain, also my ankle my hip and both my elbows. I was in agony, I woke my boyfriend up crying and he had to carry me to the toilet at 4am as I couldn't walk at all. i also have Crohn's disease so I assumed I was experiencing some crohns arthropathy even though my crohns is completely in remission, the best it's been in years, I am currently on humira injections and have been for four years.

Xmas day I noticed I had lots of little lumps up my legs, I had no idea what they were, then over the next couple of weeks they just got bigger and more of them. Some of them very painful, I went to the doctors and she said she thinks it erythema nodosum, gave me some steroids and within a week they were gone, but the minute I finished the steroids the lumps and pains in joints came back, this time my ankle had swollen very puffy, I was signed off work and told to rest, so I did but the lumps just kept coming up then going down but coming up in a different area, always from the knee down on the shins and the bottoms of my feet. Then in Feb 2017 I got one large lump right on the front of my right ankle in the joint, when they come on a joint area they feel like a knot under the skin, This was so painful and my ankle just kept swelling and swelling. Burning throbbing pain, I ended up in hospital for 5 days, I had a chest X-ray to check for sarcoidosis loads of bloods taken and loads of student doctors wanting to talk to me because it was so rare, I was clear of sarcoidosis and the docs were all a bit baffled but said it's more than likely because of the crohns even though my crohns is totally in remission, my inflammation levels are pretty much that of a normal healthy person, they put me on a steroid drip as I was in so much pain I couldn't walk at all and was in a wheel chair it was horrific I'm 27 and I felt like my life had completely fallen apart, I was thinking about death everyday, they sent me home from the hospital after the steroid drip and the lumps and swelling had got sooooo much better. But they gave me a low dose of prednisolone tablets to take for 5 weeks.

Within a few days at home the lumps started to come back, and I kept getting pains in my joints usually knees, elbows and ankles but sometimes toes fingers or shooting pains in the thy bone or fore arm. The steroids were giving me insomnia and my depression was getting worse, I wouldn't leave the house, I was getting anxiety, scared to even see my own family, i then started to feel really ill, constantly sick, dizzy, weak, I couldn't eat my appetite had gone completely, the pounds were dropping daily and I thought I had cancer. Weeks went by, another trip to the hospital and loads more bloods taken with no signs of anything too out of the ordinary, I stopped the steroids and my sleeping got a little better the lumps had all gone down I was just left with the bruising and still feeling fairly unwell most days but getting better I thought. It's now mid march and my biggest concern now is my state of mind as my depression has got really bad, not surprisingly when you have felt constantly ill or in pain since before Xmas, but I wanted to try and make myself feel a bit better about myself as I'd really let myself go so I got eyelash extension, which iv had so many times before but had had a two month break from them where I had been ill. The next day I started a new anti depressant which also made me feel better 3 or 4 days later I woke up and my eyes were so puffy I mean I looked rediculous, the next day they were worse, the next again even worse it was awful painful itchy I couldn't see. Turns out I had an allergic reaction could have been to the eyelashes or the meds but iv never had an allergy reaction ever, same day my eyes came up the lumps came back along with extremely painful thys, at first they felt like a pulled muscle but now they are more like deeply seized up muscle/bone, hurts to stand sit lay, I'm pretty sure it's because the erythema is back and it's on the bottoms of my feet again.

Any way I am so sorry about this huge essay but I'm desperate for help, advice, some good news ? Please can anyone share with me their stories, what helped you, doctors advice, please no bad news I need possitivity I can't take any more negatives. I just want my life back, to enjoy this lovely weather, have a drink smile be happy.

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  • Posted

    http://www.pneumonologia.gr/articlefiles/Erythema%20Nodosum%20Review.pdf Unfortunatly there are so many causes it's hard to pinpoint as 35-55% are unknown. The article attached shows the list of causes, it's quite daunting but if you have additional symptoms it might pinpoint you in a direction. I have it too my rashes are gone but my whole body hurts everyday and I can barely run or bike anymore, my was caused by an infection via international travel. Stick to specialist doctors as the ER won't be able to help. I would recommend a rhematory doc, osteo, or neurologist as they deal with problems of the skin/muscles. Also if the doc your going to isn't helping see another one. I have been to too many. I found some that really listen and care; some unfortunatly are so overworked they don't have time for patient care anymore. Take care and do something nice for yourself everyday, think positive, I know it's hard but your not alone.

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    • Posted

      Hi Jenny

      Thank you for getting back to me. Thank fully all my symptoms have now cleared thank god and it's been about 2 months now. Hoping they stay away, I hope you feel better soon xxx

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    • Posted

      My son has this awful inflammation, his is mostly swelling and pain, but also has the lumps. He is on and off steroids, that seems to be the only temporary relief, I am heart broken that I can't help him. We are going to another rheumatologist in 2 weeks, I pray for everyone's healing

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  • Posted

    My sons symptons are almost identical to yours! We are also searching continuosly for help & answers... it is exhausting and I feel desparate to find help.... but I will not give up !  

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