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Erythromelalgia

Feb 11, 2017 7:04 AM

I've been diagnosed with Erythromelalgia, small fibre neuropathy and restless leg syndrome. Does anyone else on here have Erythromelalgia, what's your treatment plan for pain?

Feb 11, 2017 5:10 PM

Hi Xahara, I don't battle Erthromelalgia or small fibre neuropathy, my battle is with trigeminal neuralgia, anxiety, depression and PTSD, I'm also having joint and muscle pain elsewhere along fogginess and my fatigue has got worse to the stage where it is seriously ridiculous and almost debilitating. I've got an appointment with rhaumatology mid March so I'm hoping I'll get answers that some of that (I'm not holding my breath tho!).
I do have muscle twitches, not just in my legs so I can't really say restless leg syndrome....I get it in both arms, both legs and even in my sides! I could be sitting or laying down trying to relax or go to sleep and get it in one or all places. Sometimes I could be typing a post here and my arms jerk making me drop my phone (my next phone needs to be more durable than this one!!!) Or I'll be sitting talking to family or watching a movie and in one side the muscles contract pulling the top of my body to that side (awkward when someone is sitting next to you!).
Laying in bed is the worst time because all of them will go at one point or another or I start to fall to sleep and my whole body jerks me awake again!
I've started to take some vitamins and minerals to help with my general wellbeing and one of the supplements I'm taking is magnesium. I take 100mg at night and I take a multi vitamin and mineral tablet which also has 100mg magnesium which I take in the morning I could take another 100mg in the day but I don't because sometimes if I'm able I like to soak in a bath with a cup or two of Epsom bath salts and if I'm feeling unsteady about getting in and out of the bath I soak my feet in a large bowl with a cup or two of Epsom bath salts in hot water. You need to soak for at least 20 minutes to get the benefit from the bath salts as well.
It took me about 6 weeks to notice that the muscle twitches weren't as severe or as frequent. It might be worth a try for you?
Magnesium is also meant to help relax your muscles so it can reduce your pain a bit and it's also meant to help with nerve functioning so again a little less nerve pain altho I have to say where it's helped my muscle twitches I haven't noticed any decrease in my trigeminal neuralgia pain (it's nerve pain of the trigeminal nerve which serves 3 branches in each side of the face....I have it in all 3 branches on my left side).

We are all different and react differently to different meds, treatments and supplements so it's trial and error to find something that will suit you but till then keep battling and stay positive, all of us here have got your back xx

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