I’ve been having another one of Those Times TM with my health. Basically, on the 15th of July, I started getting red bumps on my legs that looked like bites, and I gained about 10 or so every day for the next 5 days, mostly on my lower legs but also some around elbows and wrists. Weird thing was, they weren’t itchy like they usually are but I didn’t really notice that… it was on the 17th when I started getting the absolute worst pain I’ve ever had in my legs. It would come up the top of my foot, the outside ankles and outside of the calf muscles or up the shin. I rated this an 8 out of 10 on the pain scale commonly used within the NHS, and I have chronic pain. It’s often thought that people with chronic pain have a warped sense of pain after living with it constantly, so if that’s an 8 to me? Would it be a 10 to someone else??
I mentioned this pain to my podiatrist (who I conveniently had a phone appointment with that afternoon) but he didn’t seem too fussed. Was this an extreme allergic reaction to the number of bites I had? So I started frantically Googling, which people aren’t supposed to do but here me out… being chronically ill and disabled, I do need to google new symptoms in case it’s related to medication (either just a normal side effect or an allergy), something related to my current illnesses, or if it’s something entirely new. I couldn’t find anything that fit… at all. I would have some symptoms but not others.
Gout, tendonitis, diabetes, rubella, measles, mumps, chicken pox, co-codamol overdose, bug bite allergy… anything I could think of. As the week went on the pain got worse and harder to control with the medication I had. None of my painkillers touched the pain for more that 2 hours at its worst.
I went to my chiropractor on the 18th. He didn’t know either, and by this point I thought it was bed bites and we swapped my mattress out for a new one after trying to exterminate anything that might be there. Then the pain was back again and I had to cancel an event I was really excited to go to. I couldn’t walk with this pain and definitely not to and around London.
We couldn’t get a doctor’s appointment at all this week so I had to put up with it. I also had to cancel seeing a friend on the 20th because the pain kept coming back regardless of rest or no rest… The lumps also started to go a bit purple like a bruise. My bites do bruise so I still didn’t think anything much of a connection between the bumps and my pain. Standing and Walking would bring a different pain, like sharp needles and tight skin, and my knees were really weak and I would keep knocking them back and hurting myself.
Saturday evening was the worst for my legs. I was genuinely screaming and crying. I make a lot of weird noises when I’m in pain but I don’t normally scream. I ended up taking all my painkillers in one go around 11pm and slowly passing out.
Rinse and repeat for another few days until I saw my GP on Tuesday 23rd July. I start telling him about it all and he started asking me questions related to symptoms, now, clever me in a pain induced state had written up all my symptoms I’d been having in case they were all connected.
He said the lumps look like erythema nodosum. This is often linked to an infection or a reaction to new medication (he said) and guess who had just gotten to three weeks on Mercaptopurine for Crohn’s? You got it, hun. So he added some extra tests to the bloods I’d just had taken and sent me for a chest x-ray, so off I went for the x-ray at the hospital. Short version, I waited over an hour coz it was hella packed and eventually found out later they were clear. Then went to have a massage.
My GP had written down erythema nodosum because I am too dyslexic to even try to spell it, he also said it doesn’t sound how it’s spelt thanks to the fun Latin or Greek derivatives of medical language. So, I had a Google by doctor’s advice.
Erythema nodosum is basically swollen fat under the skin that causes red bumps (ew) but it usually goes away around the two week mark. It can be a sign of something serious. It usually affects the lower legs (check) but can spread to other parts of the body, (check, elbows and wrists), the bumps can feel hard and warm and painful. You can also have flu-like symptoms! High temp of 38* or above (I don’t think mine ever got quite that high but it was close), tiredness, joint and muscle pain. The tips to help ease the pain weren’t super helpful because they were pretty obvious: take painkillers, particularly ibuprofen (I can’t take that because of Crohn’s…), rest with feet raised (done), apply cool wet compress (we were using ice packs and hot water bottles before wet cloths)… and that was it?
Common causes? As usual, no one really knows.
I got a call from my GP at around 7pm telling me the results of my bloods were back and very worrying. My inflammation markers were over 200 (the highest I’d had before was 94) so I had to be checked for infection. The hospital staff were kind enough to test the previous sample from earlier in the day instead of making me have another blood test and found I did not have any infections (WOO) but they believed it was linked to my Crohn’s not my medication or anything else. They think it’s a Crohn’s flare! Whilst I was in hospital, it was explained to me that it’s actually quite rare to see erythema nodosum and the doctor I had, said she had only ever seen it once before.
I had to come back in the morning to see the Gastro team of the hospital. She also wanted bloods, but again were nice enough to just go by the ones from yesterday. She wanted me to go on IV steroids for a couple of days and stay in hospital. This really shocked me because I really did feel fine except for my legs! I didn’t feel like I was having a stomach flare at all, everything was working normally. I went through my history with her and all my medication. She brought in a rheumatologist, because Crohn’s and joint pain/problems are often linked and he wants lots of scans and some bloods to be done. The Gastro lady ended up okay-ing me for pill steroids and to go home because I did seem well and that I would probably be less stressed at home. She wants our local hospital to take over my care and start from the beginning with my illness and what that means for me, because my previous care clearly hadn’t gone into any detail with me.
Now I’m writing this two days later, two days on steroids and feel much better. All this could have been avoided/quicker to deal with if I’d been properly informed about my disease and the possibilities of other things happening to my body. That’s why I’m writing this post, to show off this weird reaction that isn’t super common, but is far more common for people with IBDs. I want to be the blog post I needed when I was frantically Googling for my life, thinking I had a blood clot and that I would die. It’ll be okay, I know it’s the worst pain ever and you can’t continue normal life right now, but once you get the right medication and care, it’ll get better and it will go away. But it was really scary going through this and very emotional. I hope this can help someone out there, or just better inform some people about IBDs.
EDIT: I’m writing this roughly a year after this happened to me. I wanted to share that thankfully I have not experienced this since last year, I have also read it is possible to get Erythema Nodosum with types of Vasculitis (of which I have one type, but my rheumatologist says it’s unlikely it was linked to my vasculitis and was most likely my Crohn’s). I have also pretty successfully completely gotten rid of the dark discoloured marks on my legs, there’s super minimal evidence of it on my body and this was mostly due to using a mixture of caster oil and lavender oil on them, it is meant to have lightening properties so I also use it on dark patches from healing spots too. I was told i would never get rid of the marks so shove it! I just wanted to give an update to this post for anyone who finds this and is wondering what happened!
You can watch the video here if that’s more your thing of you want to hear more about it.
I have numerous other videos about my health conditions you can find them all in this playlist, please check it out and share.
Feel free to leave questions!