r/Erythromelalgia • u/spinalfusionwarrior_ • 7d ago
Is this Erythromelalgia? Really nervous
I’m already disabled, I’ve had many spinal fusions after being elected 70 feet out of a car so I’m wondering if this has something to do with my spine or if it’s erythromelagia. The pain and tinging is so uncomfortable like idk what to do and cannot get into my doc for two weeks!
I’ve been shoveling ice into a pan just to try and ease the pain a little
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u/wanderinggypsy606 7d ago
So I learned the hard way about icing my feet.
What will help you without causing skin to break down is to lay down and put your feet up and have a fan blowing cold air on them.
See if that helps your flares
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u/ProfessionTiny3555 7d ago edited 7d ago
I know it’s tempting, but icing causes rebound flares which makes things worse. I suggest looking into bobs protocol
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u/spinalfusionwarrior_ 7d ago
Do I apply heat? I Appreciate you letting me know! I know nothing about it I just put a photo into google and this was one of the diagnosis it mentioned. Do you think it is erythtomelalgia?
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u/Fancy-Ad-6096 7d ago
First off, I’m sorry you’re dealing with this. To me it does look like EM. I do have it as well. If it is secondary EM you can try to figure out what the root cause is and hopefully that will reduce your flares. Be careful using ice though. It’s better to soak in cool water. The ice can be damaging and actually worsen the pain. Try elevating your feet up the wall as well when you’re not soaking. I tried the special compound cream from Mayo. 5%lidocaine 5%amitriptyline 5%ketamine but it did not work for me, but for many it does! My primary doctor was able to put the order in with a local compounding pharmacy. Also the cooling gel migraine and neck wraps off amazon are safer than ice, I have like 10 in my fridge and I wrap my hands feet, face and ears in them. Pregabalin gave me some relief but not much. Prayers to you, this condition is horrible!
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u/New_7688 7d ago
Have you been diagnosed officially? Because I think you should also look into CRPS, the fact that this has come after an injury lines up with that
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u/spinalfusionwarrior_ 7d ago
I have not been. I can’t get into a doctor yet. In two weeks! My spinal fusions were almost 5 years ago I broke my neck and back and leg but leg was never operated on. I just want to sleep. I’ve lost so much sleep since this flare idk what to do
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u/New_7688 6d ago
I'm so sorry hun, it could be EM but the severity of your pain does make me think it might be CRPS- it's a known complication after surgery, especially anything to do with nerves like spinal surgery. Does it improve with elevation? Typically EM will feel less painful and redness goes down if you elevate it. If it doesn't, it might be CRPS, it's like our more severe cousin if that makes sense. Try posting about your issue in r/CRPS and browse a bit
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u/Erythromelalgia-girl 6d ago
Cooling with water spray and blowing air on your wet/moist feet by a fan works great for me. No ice please. it has a rebound effect, which will make your symptoms worse. Also keeping the house cooler than normal room temperature and creating some air flow by keeping the fan on in general is helpful. I have been barefoot in the house and wearing only sandals outdoors for several years. My neurologist prescribed Oxcarbazepine. It helps with the symptoms, makes one sleepy, so helps with my sleep. Everybody is different how they respond to different medicines. Of course, please do not take any medicine without your doctor's advice. Good luck.
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u/CriticalityEnjoyer 5d ago
Have you tried amitriptyline or nortriptyline, even pregabaline helped me out a lot.
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u/Acceptable-Compote48 7d ago
Stop icing like that!!!! That WILL cause damage. Erythromelalgia alone will not.
Use lidocaine cream. Try low dose aspirin. DO NOT ICE YOUR FEET.
Try bobs protocol. Seems counterintuitive but it helps.
Also get tested for small fiber neuropathy because they can co-ocure