Tell us what you have been up to lately.
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Hey everyone
It’s been awhile since I’ve posted. Hope everyone has been doing ok.
I definitely have not - I am certain I am living in hell.
I have never in my life had such horrific pain. I have had EM since 2017 but it is the worst it’s ever been. It’s close to unbearable.
The nerve pain makes me literally scream. I’m screaming so loud that my neighbor actually phoned me to see if I was ok. It actually feels like someone is peeling the skin away from the bones on my toes and then pouring acid inside. I have huge sores on almost all my right toes and deep wounds at the base of all my left toes. They are so sensitive that even a light sheet grazing them is painful, and I am once again developing blisters on the tops of my feet.
I pretty much live with my feet inside plastic bags in a cool water bucket all my waking hours. Which has now caused fungal infections in all my toe nails.
I only get about 3 or 4 hours of sleep a night so I am completely exhausted.
The EM moved into my legs hands and face awhile ago but thankfully I have no nerve pain in those areas.
I also have Raynaud’s so the cooling process can be very tricky - too cold and a Raynauds flare starts.
I was recently diagnosed with Lupus (April2021) and also have Fibromyalgia (diagnosed 2004) and Ménière’s disease (diagnosed 2007 - caused deafness on left)
The Lupus has caused a lot of damage to my lungs and some to my kidneys. The doctor figures it’s also what caused the 11 brain lesions I have.
I am at my wits end for finding pain relief for the nerve pain and feel like I have no purpose anymore…I’m just so done and I just turned 55 so I can’t imagine another 20+ years like this.
Currently on 300mg gabapentin 1000 mg/day and tramadol hydrochloride 50mg 4X/day taken with OTC extra strength Tylenol for the EM.
Some relief for about 2 to 2.5 hours and then the pain starts again. Heat gets so intense it melts lotion off my feet and swelling is so significant that I have no movement in my toes and walk like I’m peg legged. I am completely shut in cannot go anywhere as I require the cool water bucket at all times plus I’m unable to wear any form of footwear.
My Doc wants to try either lidocaine or ketamine infusions but after reading about people’s experiences with it in here I’m not feeling too good about it. I can’t take cymbalta (caused suicidal thoughts - which I beginning to suspect gabapentin is doing to me) I also can’t use any topicals because of all the open wounds.
I am open to and desperately need to hear from anyone that this can get better. I had a complete and total breakdown today of frustration, anger, pain and exhaustion and now I’m dealing with a fibromyalgia flare because of it.
Holding on by a thread