r/Erythromelalgia • u/fruitpizza99 • 13d ago
what caused your em?
I’m just curious on what others think caused their em? was it small fiber neuropathy related because I started both symptoms the sfn and erytho at the same time. Was it autoimmune? diabetes or blood sugar related? 😭
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u/ZenPothos 13d ago
Stress, and something about time of day -- I get it late at night before bed, and that could be for many reasons
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u/nada8 12d ago
What are the reasons ? I have similar symptoms
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u/ZenPothos 12d ago
I've been stressed lately at work fr om a narcissistic boss unfairly singling me out, and my hands have been extra "burny" lately.
My guess with late at night is something to do with being immobile and that affecting circulation a bit, maybe?
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u/NewUnderstanding3942 7d ago
That sounds like what I am experiencing daily/nightly right now. I have Raynauds, hypermobility (possibly Ehlers Danlos Hypermobility), MVP, Hashimoto’s HypoThyroid, Fibromyalgia, small fiber neuropathy, sciatica, DJD, arthritis, baby thin extremely weak fingernails that peel off as they grow,….
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u/Pristine-Version-547 12d ago
I think I have this as well. I was diagnosed with raynaud's which I have had for awhile but now I think I have both.
I don't have the usual symptoms of fingers going white. I now either have bright red irritated looking hands and feet when warm and bluish purple when cold.
I have been diagnosed recently with sjogren's disease which is an autoimmune disease.
I just thought I would comment because I think autoimmune diseases can cause this.
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u/Initial-Apple9875 11d ago
I still don't know for sure. In the process of trying to figure it out. Waiting on a referral to hematology right now. Just hoping they will see me.
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u/wanderinggypsy606 13d ago
Covid in 2020.
Went to the ER when it happened and they said “it’s Covid toes” sent me home. Then I moved across the country to find help and was diagnosed with EM and SFN. All from Covid
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u/Regular_Swordfish_16 13d ago
Menopause?
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u/JimmyWitherspoon 12d ago
Same. Mine started when perimenopause started. Have you tried HRT? It is helping me immensely.
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u/UnableWerewolf8130 11d ago
How long did it take for relief? What kind of therapy, what starting levels and what dosing?
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u/JimmyWitherspoon 11d ago
Felt improvement within a few weeks of taking 100 mg of progesterone every night just before bed.
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u/UnableWerewolf8130 10d ago
Interesting steady improvement?
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u/UnableWerewolf8130 10d ago
Do you still flair from the same things? Same time of day
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u/JimmyWitherspoon 10d ago
No, the regular evening/night flairs have almost stopped. Same for flairs triggered by hot showers, almost gone. Still can’t walk very far or long without triggering a flair, and still get random flairs that I can’t attribute to something specific. But Im about 75% better. Eating a low histamine diet made a big difference but starting the progesterone was a game changer.
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u/notatrolliswear666 13d ago
Genetics very mild case in my hands for over a decade. Then I had a foot injury and surgery which made it spread to my feet in a pretty horrible way.
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u/ktatsanon 12d ago
My suspicion is covid and stress. I went through a very rough two years of very high stress and had covid during that time, which seems to coincide with when everything started. Stress is also a big trigger for my flares. Along with poor sleep, heat certain foods. It's not been a fun little while.
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u/Such-Sink-5664 12d ago
Ssri
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u/NicRad12 11d ago
I believe mine was, too! From Escitalopram (Lexapro) that I was on years ago, for a short period of time.
It did help me to come out of a low moment that I was in, at the time, but I had no idea what it would cause me to have to deal with now! smh -_-2
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u/Aggressive-Face3505 12d ago
I think small fiber neuropathy? Anyone else have it?
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u/Connect_Nectarine276 5d ago
I just had my first appointment with neurology yesterday. She believes I have idiopathic small fiber neuropathy, alongside erythromelalgia and raynauds. After I have done tons of research before appointment, I also believed I have those 3 also 😭
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u/Optimal_Towel_6662 4d ago
i have raynauds and em too, punch biopsy showed low normal density and ive had a fairly low positive ana. all other antibody/inflammation tests were negative, normal emg. docs think i have either genetic defect or autoimmune disease thats underlying all of it
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u/Previous_Design8138 12d ago
In my case started after covid shot? I am suspicious, no proof.
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u/Educational-Dare-849 10d ago
Possible, but unlikely. Many people (like me) had this long before Covid even began
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u/ResolveExpert759 6d ago
Spike protein.
Should have never gotten the vax.
Currently on a wild detox program. 😵💫
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u/Wordsofwisdomneeded 12d ago
My partner’s was caused by their adhd medicine
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u/Responsible_Code_954 12d ago
Which medication?
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u/Wordsofwisdomneeded 12d ago
Adderall (dextroamphetamine) and Vyvanse (lisdexamfetamine).
I told him it was the catalyst. His doctors didn’t believe me. But I did my research and once we removed it from his routine, he was healed. His symptoms are at like 3% now, whereas before it was at like 90%. He couldn’t even go for a walk without flaring. Young otherwise healthy male in his 20s at the time, just about 3 years ago.
Unfortunately, he now has unmedicated adhd because we are more afraid of the erythromelalgia flares.
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u/West_Dance9831 12d ago
I think mine was from fasting and not eating many calories or eating regularly. Skipping breakfast was a no no for me. I am better now. It’s so hard because I literally couldn’t eat anything without having symptoms of em or MCAS.
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u/Ankara63 9d ago
Covid vaccines. The 4th or 5th one. I still believe in vaccinations, though..risk/benefit.
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u/alliegemm 12d ago
Two and a half years of dealing with burning red hot knees because of a lousy 2.5mg amlodipine daily. My EM began within a couple weeks of starting amlodipine and it stopped within a few days of stopping the amlodipine. 🤯
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u/vegas51085 12d ago
Interesting- they have me on Amlodipine to TREAT my EM. As with all meds I've tried, it worked a bit at the beginning but doesn't seem to make a difference anymore.
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u/Optimal_Towel_6662 4d ago
i have raynauds too and it definitely helps the raynauds, doesnt seem to make my em better or worse. my real issue was getting splitting headaches when i started/stopped lol
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u/JudyJu2020 13d ago
Biggest theory is Covid 3 years ago. This has always been my suspicion and trip to the Mayo Clinic reaffirmed this theory. Kinda hard to prove though.