I’ve been doing really well. Most days go by without any serious flares other than occasional heat or jolts of pain. I’m walking around my house again, and am planning to attempt journeys downstairs for extended periods much more often (I still sleep with my window open, fan on and my feet on an ice pack placed inside a pillow holder). Lyrica and B12 seem to be helping, but I definitely am planning to search for a neurologist to get my nerves tested, as I’m now at point where I’m not in so much distress that an electrical shock test would add to significant pain. My last semester of college has started, and against all odds, I passed the previous semester. I’m cautiously optimistic, I must admit, since I don’t know what spring and summer will lead to in regards to my flares. I feel, that between some remaining edema wounds and the still reoccurring odd sensations, I’m not out of the woods yet. Lyrica seems to help a lot, but I’m scared to wean off it, which will lead to future problems. Hopefully, I’m in a place where my pernicious anemia has healed enough that secondary EM won’t be a problem, and instead I’ll just have some bearable odd nerve pains, and walking outside instead of in a wheelchair will be possible when 2022 comes around (I’m also feeling optimistic but mildly skeptical at the idea of the vaccinations leading to a return to normality, what with the issues of production and of course, anti-vaxxers). I’m sleeping through every night as soon as I hit the pillow. I haven’t looked at the bucket since early October and I’ve ridden the waves of flares by breathing through it as they’ve lessened. I’ve come very far in six months. The only problem is weaning off the Lyrica. I hope I can find another medication that works for me, because I’ve definitely experienced brain fogs and I’ve gained about sixty pounds (the hunger is insane, and weight seems to pile on no matter how much or what type of food I eat). I’m still trying to find my next steps, but I definitely believe I’ll be able to look back at this point in my life as a challenge I eventually overcame. You all left such nice replies, including a few I missed since late September, and I felt that I should poke my head back in to let you know what happened to me.
My experience with erythromelalgia is minimal at best. I experience temperature issues but for a totally differing reason BUT I have had experience with Lyrica and the brain fog etc for me is just nasty. Although I could do with gaining 60lb
I have been trialled on all sorts of meds, but am yet to find my key. I found that some meds may be good for some symptoms, but some of the side effects can be awful. It truly can be a case of weighing up the benefits vs the side effects and if those side effects can be managed OK, then the benefits maybe greater. When it comes to some of the medications what may be considered a miracle cure for some can be a curse for others. This certainly is not a one size fits all scenario, so I’d recommend (with medical supervision, of course) a ‘trial and error’ approach to establish what may best meet your needs.
I’m glad to read you’ve made progress! Weaning off Lyrica seems a smart move, since a 60 pound weight gain is significant. You don’t want to trade one problem for another. There are other prescriptions community members have found beneficial. Do you have a doctor willing to trial you on other options? You should be careful with ice application. Repeated ice applications for extended durations may worsen EM symptoms. You might want to consider weaning off ice, as well.
Glad to hear you’re making progress, finding a supplement/medication that actually helps EM is a huge step forward although the side effect is unfortunate.
Not sure if you’re aware but the erythromelalgia association has a physician directory for doctors that have seen EM before. Since you eventually want to see a neurologist, maybe you’ll find one that has also seen EM.
I was in college when I was diagnosed with EM. I am sorry you are dealing with this at this time in your life. When I graduated, I felt I’d not only earned my degree but also a doctorate in EM. It is a grand accomplishment to complete a semester! Hats off to you. I am a nurse practitioner with a diagnosis of EM. I was seen at Mayo and tried on many prescription drugs. The side effects never outweighed the minimal results for me. When my EM was at its worse, I saw a functional medicine provider who had me stop eating gluten and dairy. He also started me on Gaia Curcuma NF-kB liquid phyto caps (its a curcumin supplement) 2 tabs 2x daily and high dose fish oil- OmegaGenics EPA-DHA 720 2 softgels 2x daily (this is very anti-inflammatory). Within 48 hours my flares went from constant to intermittent and have continued to improve. I am assuming this occurred due to lessened inflammation in my body. I have my life back. I sleep under piles of covers and take hot showers. I wanted to share since these things were so very helpful for me and had no unwanted side effects. Once my inflammation was way down, I did some gentle heat conditioning. I flare maybe once a month now and only for maybe 10 minutes or so.
Yours in hope and finishing semesters(!),