ERYTHEMA NODOSUM

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My daughter is 19 years old and about 2 years ago was diagnosed with Glandular Fever. Since then she has experienced bouts of extreme fatigue, swollen glands (particulary behind her ears) and high temperature. Visits to our GP have proved fruitless, it's always 'come back in a couple of weeks'. My daughter would recover for a couple of months and then become ill again. About three weeks ago our GP relented and took a blood test and chest x-ray, this was clear but a couple of the blood results were high. Again the GP said come back if you don't feel better. Two weeks ago my daughter had what looked like insect bites on her legs, these became red and warm. The out of hours GP diagnosed infected insect bites and prescribed cream. Within a few days the lumps had flattened out, got larger, hot, red and walking was painful. Last Wednesday daughter returned to our GP who diagnosed cellulitis and prescribed antibiotics. On Saturday she was crying in pain, her legs were swollen, the rash worse and was spreading up above her knees. Back to the out of hours doctor and luckily this one spotted the EN, although she said she hadn't seen it for several years. We were sent to a local hospital infectious diseases ward (although the doc wasn't sure if this was the best place to go, she thought it was a start). The hospital doctor was excellent, she listened and understood the problem, and also appreciated how much pain my daughter was in. She thought the EN could be a result of a strep. throat my daughter had a few months ago, and could be linked back to the glandular fever. She took blood for various tests. As EN is not an infectious disease she could have turned us away, but thankfully she didn't. Painkillers (paracetemol and ibuprofen) and bed rest were prescribed. Today the rash has progressed to the bruised-look stage and the lower legs are still quite swollen, but my daughter is looking a bit better, with less pain. We are back at the hospital tomorrow for blood results and hopefully more information and advice. I hope we can find the underlying cause of the EN and my daughter can get better. From reading other sufferers accounts I realise my daughter has been very lucky by chance getting a GP who recognised the illness and then another doctor who was willing to help.

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  • Posted

    Hi, I can completely sympathise with your situation. I had an extremely similar experience 11 years ago at the age of 19 - I had glandular fever previously and continually suffered from fatigue. Lumps appeared on my legs similar to insect bites, following a mild sore throat and the lumps rapidly progressed to the hot, swollen inflamed areas symptomatic of erythema nodosum. My doctor reluctantly took blood tests after my mum insisted that something was quite seriously wrong but nothing sinister showed in the results. After a couple of weeks I was unable to walk due to the immense pain in my legs. I had painkillers prescribed by the doctor followed by a diagnosis of systemic inflammatory infection which told me nothing useful about my condition. After around 6 weeks the lumps had subsided and left me with the bruising which eventually cleared up but I was left wondering what had caused the condition.

    The condition did not recur again until last week (11 years later) when a red lump appeared on my knee followed by 2 more lumps on my shins the following day and a 4th lump on my thigh. These have developed into the inflamed, swollen areas I experienced before. I am currently 12 weeks pregnant with my first child and have visited the doctor today and she promptly diagnosed erythema nodosum which she suspects is triggered by the hormonal changes related to pregancy. 11 years ago I was taking the contraceptive pill and she thinks the hormones in the pill potentially triggered the condition then.

    I have still to have blood tests to ensure there is not an underlying strep infection causing the problem but I'm confident this will run it's course as before.

    This is an extremely scary condition for your daughter and I know how painful it is and I wish her all the best.

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  • Posted

    Yes you have been lucky to get a diagnosis (at last!) and the treatment they suggested is about all you can do. I had it when I was around 18 several times and have just had it again now 10 years later (a bit like the other lady who replied to you). Mine is strep. conc related from the toncilittis I get. Its a horrible painful thing which is very hard to describe to anyone. My family remember me trying to walk around the house, gasping with every step, although the pain sometimes gets better when you have been walking a while.

    Keep on the painkillers and hopefully now they are changing colour signifys that it is ending. Hopefully it will never happen again but at least if it does, you will know what it is. Don't let anyone treat your daughter like they are just bad bruises!

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  • Posted

    Following my comments on 12 August, my daughter returned to the hospital and luckily saw the same doctor. The doctor could see an improvement in my daughter just by looking at her face, because she was actually smiling this time, even though the walk from the car park to the ward had taken its toll! The blood results from Saturday were still high and more blood was taken, but doctor hoped these would show things were getting back to normal. The doctor confirmed her thoughts that the EN was a result of a previous strep throat but that things were on the mend. She said it was unlikely there would be a reccurence but we could return to the hospital if anything similar occurs in the future. She also advised my daughter not to ignore the signs of tiredness and rest as much as possible. My daughter had a few more days of rest and then returned to work. It was quite hard going for her but now she looks and feels alot better. So thank you to the doctor on the John Warin Ward at the Churchill Hospital in Oxford.

    Also thank you to LibbyP (and best wishes with your pregnancy) and melsuggett for their kind comments.

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  • Posted

    I too was diagnosed with Erythema Nodosum, at 9weeks pregnant. I have never experienced such pain, and the pain increases with the weeks.

    I am now 10 1/2 weeks pregnant, and the lesions are starting to appear on my arms, and wrists... I am worried about returning to school next week because of the extreme tiredness. But, I wil have to wait and see what happens.

    It was a relief to read about other people's experiences, of this horrible ailment; and the fact that there is very little that can be done.

    I would love to know how long other people have had the pain and lesions for, before it really began to disappear.

    My poor 18month old daughter, is not getting the best of me this week, as it is very difficult to walk now, and I am SO tired.

    But, you have to keep going and do your best.

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  • Posted

    I was recently diagnosed with EN as well by my dermatologist. I've been on the Yaz pill for 5 months and it was great b/c the previous pill was making me a psycho crazy lady (of course the docotrs never seem to believe you though, like us ladies would lie about this!). The EN started as an extremely painful bruise on my leg and I asked my gyn about it and he said it was the wrong leg to be the pill, regarding blood clots. It spread so I went to an MD and he took a blood test for sarcoidosis, negative... so I went to my dermatologist and they said it looked very much like EN and to stop taking the birth control pill I was on. After seven days of being off the birth control pill it was still increasingly worse and my left leg was swelling at the ankle, very painful. I also started getting blotches on my cheeks. The md had prescribed steroids to see if it was allergic related so I started taking them and 3 days later the pain and swelling is going away quickly.
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