Hi all- I have been lurking for years after determining that the strange phenomenon in my hands and feet was EM (and after being ignored by my Rhuematologist when I mentioned my symptoms).I have been diagnosed with primary undifferentiated Spondylitis, so my EM is secondary and symptoms have been relatively manageable except for some discomfort at night and painful feet in the dead of summer, so i’ve mostly been silently observing and getting a sense of comfort that I’m not alone and I’m not crazy. But I had covid in november and have, since January, experienced pain and flaring like never before. topical lidocaine helps me numb my feet enough to fall asleep along with some cold packs, but it’s become almost unbearable. In fact, the EM flaring along with fatigue and symptoms that made me think I was having a heart attack (!) sent me to the ER. No heart attack, but massive inflammation. I’m currently on steroids and praying that helps to calm it all down. Has anyone had luck with steroids for EM symptoms??? Anyone else have experience with post-covid EM symptoms?
Hi Karyn,
Gosh! This sounds so challenging. I am sorry you are dealing with this on top of COVID fatigue and other health challenges. I am a nurse practitioner with a diagnosis of EM. It makes sense to me you’d see increase flares. Interestingly one COVID long hauler symptom in addition to fatigue is temperature dysregulation. We just don’t understand much about why this happens yet. When my EM was at its worse due to inflammation due to Chronic Inflammatory Response Syndrome, the things that helped the most were not prescription meds suprisingly. 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 do hope you see improvement one way or another.
Yours in hope,
Lauren Sparks
Lauren- Thank you so much for your kind response. I’ve done elimination diets and dairy is a huge trigger for me. I am weening off the good stuff as we speak (crying emoji)…but I know it will help. I will definitely look into the curcuma and fish oil! I honestly feel like steroids are not a viable long term solution for me so I am thrilled with the functional medicine suggestions. There’s also the rest component which as a full time media producer feels like a joke…It’s kind of this awful cycle of low sleep because of the inflammation which also increases inflammation because of the lack of sleep. It’s just so nice to know that others are in the ring with me.
Warmly,
KaRyn Lay
this article corroborates what you said. VERY INTERESTING: Patients, clinicians seek answers to the mystery of 'Long COVID' | CIDRAP
Bonjour,
Avez-vous esayé du LAROXYL? pour ma part mes douleurs sont moindres
Cordialement
Of course! One other thing I thought of in regard to rest that’s hard to come by… I’ve really enjoyed Wim Hoff breathing. He does a specific type of breathing for inflammation. He has a free mini class you can try. (Natural anti-inflammatory | Wimhofmethod.com) I only do the breathing as I feel cold conditioning could be detrimental with EM. Interestingly for me the breathing is restful but then also energizing. I slip it in when I can- sometimes between clients. On a side note, I feel you (crying emoji) weaning off the good stuff. It’s hard. When I fall off the wagon, more with dairy than with gluten, I feel so crappy that I hop right back on. Knowing that gluten lurks in your system for 3 months after you take it in has helped me stay “clean”. I have had some luck with buffalo cheese on a GF pizza crust to satisfy pizza cravings. I don’t tolerate cow or goat cheese. We are all in this crazy “ring” together.
In solidarity and hope.
Lauren
Sylvie- Thanks for sharing. You said, “Hello,
Have you tried LAROXYL? for my part my pains are less
cordially”
This IS an international community, but English is the preferred language here. I happen to be a huge fan of Google translate. Even if it’s not perfect, it does a decent enough job.
C’est une communauté internationale, mais l’anglais est la langue préférée ici. Je suis un grand fan de Google Translate. Même si ce n’est pas parfait, il fait un travail assez décent.
Sharon from ModSupport
Hi Karen,
See my post about COVID- for me it was the start of my symptoms, also secondary to another disease like yours. In my case it was likely secondary to chilblains you can in the toes. I read you were icing to cool things down in your bio - be careful with, as it can cause a lot of injury. Consider room temperature water baths.
By biopsy, I had a large number of inflammatory cells in my toes - the steroids for me did not do anything to the EM symptoms I Had, and did not really help the inflammation in toe- to the surprise of my rheumatologists. The Mayo report suggests if treated in the first year of symptoms, some people have improved, but its unclear who would respond or why.
But if the COVID triggered your arthritis - perhaps calming things down with steroids will work.
Best wishes!!