Nodules re-inflamed and painful, similar experience anyone?

Hello all, 

Hoping someone might let me know if they have had a similar experience to mine.  

I've had erythema nodosum for 12 years..I'm 37 years old, general dodgy health, suspected fibromyalgia, possible sarcoid with no evidence to support.. chronic long time asthmatic with a nearlifetime of steroid use..  My daughter was born in September 2004.  I had been hospitalized more or less continuously for the last 3 months of the pregnancy with my lungs and was on massive doses of IV steroids for the duration. When she was 4 weeks old I woke one morning with my legs covered in huge roaring red nodules, the heat from my legs was unelievable and I was in agonising pain. Because I could barely move my arms or legs my husband dressed me and carried me to the emergency on call doctor where I was told it was a rare virus and it would clear up.. needless to say it did not! My GP the following morning diagnosed erythema nodosum.  That flare up lasted approx. 6 months and was the most severe I've ever had, I remember I was still unable to walk in December of that year.. No further episodes then until 2009 or so when it flared up again, the pattern since then tends to be feeling dreadful for the week prior to the nodules appearing, a whole system shut down, like a really bad flu.. a nodule or two appear, things slowly improve, another two or three appear and so on and so forth for anything from a month to 6 months.  This happens around 4 times a year..sometimes very mild, sometimes the joint pain and fatigue leave me housebound and needing sleep from morning to night.   

This current flare up started about 2 months ago, just two nodules, one on each ankle, much larger than the more recent episodes and the usual horrible fatigue, the joint pain was not as severe as usual.. the odd thing this time is that they seem to have re-inflamed (for want of a better description) four times now.. they fade a little, I feel marginally better, and within a couple of days they are even larger and more painful.. No further lumps just the same ones that seem to improve but then return for no obvoius reason.  I would be grateful if anyone who has experienced somethign similar could let me know their experience please.  My GP is lovely but sick of me, and I can no longer take the steroids so it seems there is little else he can suggest other than to suck it up!  Getting weary of feeling like this now! Thanks! 

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