The battle with Erythromelalgia

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The battle with Erythromelalgia began at the beginning of April, one morning I woke up with this horrific burning pain in my feet and because of covid I couldn’t go in to see my doctor I had to telehealth which was so hard because he couldn’t see my feet so he wanted me to start off my going to a podiatrist she did a little ultrasound on my foot and my pulse in my foot was beating very fast she was very worried about that, so sent me to have an x-ray and ultrasound which both came back clear and healthy, so she said if she couldn’t help me there would be 3 type of specialists that could possibly help me either a Rheumatologist, Neurologist or Pain Specialist, Couple of days later we had another Telehealth phone call with my doctor and he prescribed be ibuprofen and tramadol and both of those medications did nothing, He didn’t want to prescribed me too many pain medications because I’m under 18 and he didn’t want to get rid of the pain and not find out what was causing it, I was up all night I couldn’t sleep the only way I got to sleep was to put a foot bath next to my bed on a chair and lay diagonally on the bed with my feet in a foot bath with freezing cold fridge water and ice cubes otherwise I would be up all night, I was depressed, when I went to sleep at night I would dread waking up the next morning because I knew I would wake up with this horrific burning pain
And after 10 horrible weeks my doctor on the 7th on June admitted me into hospital through emergency and the emergency doctor diagnosed me with Erythromelalgia the pain was a number 9/10 and it took ibuprofen, Panadeine forte, endone and morphine to get the pain down to 1, my blood pressure was and still gets up to 180 because of the pain my heart was and still gets up to 130 which is beating too fast and very dangerous, after they got my pain down and I went up into my ward my doctor gave me strong medication to get rid of the burning and the pain & I had to see a heart specialist and have a echo done to check if there was anything wrong with my heart which all came back clear, my doctor was so worried about my blood pressure she sent me up to ICU for one night and I had medication going in through the cannula to get my blood pressure & my heart stable, the next day I saw a neurologist he examined my feet and had no idea what to do he said he would have to google this, once my blood pressure was stable I went back down into my ward and my doctor called a pain specialist and my doctor explained everything it was such a miracle that he said that he had studied Erythromelalgia when he was at university studying to be a pain specialist so he said to try nerve patches but that made it worse so he said  would be in the next day and because of my medication when he came in I was asleep so he said he would come back in the next day and when he did I was still asleep, 4 days later I was discharged on the 20th of June, I take 6 very strong medications every day and on the 9th of July I had a Telehealth appointment with my pain specialist and he offered to do a lignocaine infusion and I said yes, so he got approval from my hospital and my doctor and on the 18th of July I had the lignocaine infusion which went into my sodium channels to block the nerves to reduce my pain and 2 weeks after my infusion I had another appointment with my doctor and she did a blood test to check my adrenaline and it came back a bit high so she sent me for a 2nd blood test to check my adrenaline and she asked me to have a full body CT scan and kidney ultrasound to check if there may have been a cyst she said she didn’t think anything would be there but she said she has been a doctor way to long not to check and they both came back clear and the blood test came back normal so the medication made my adrenaline come back high on my first blood test, she also sent me to have a blood test to check my thyroid because it was little bit high, on the 2nd of September I had a appointment with my pain specialist and he was so happy that the lignocaine infusion had been successful and that I was smiling for the first time in 9 months and we are now starting to back away from all my medications one at a time and slowly because the medication I’m on is very strong and I take 6 everyday, We are catching up every 4 weeks so he can keep track on my medication regimen, and if the pain increases we can keep doing lignocaine infusions in the future if we have the need to, on the 21st of September I see my doctor and will get my thyroid blood test results and she will keep sending me for all type of tests because she is trying to figure out what has caused my Erythromelalgia, my feet still go very red some days and some days they even go dark purple I still get pain but luckily it’s never higher then a number 5, and I’m now getting pain again in my feet again and also now my hands have started to get pain too so I’m having another lignocaine infusion done in January, my pain specialist also said I will have to have lignocaine infusions every 6 months he is more than happy to do so.

Thank you for listening.