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Is anyone on Gabapentin for EM? The nausea is real. What works for you? I've tried dry toast, crackers, flat soda etc nothing works.
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I'm new here!
Hi, my name is Nonnyamy. I’m new to The Mighty and look forward to sharing my story.
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#Erythromelalgia #ChronicPain #ChronicIllness #Fibromyalgia #raynauds #CRPS #Erythromelalgia
Started with a flare up on Wednesday on my face.. Which got worse over the days. Come Friday my face was so red, swollen and my skin had hardened like cracked sand.. As if I was burnt from inside out.. Ended up in hospital and that was a nightmare. Hadn't dealt with #EM and put me on a steroid to stop my Airways closing even though it wasn't an anaphylactic reaction. Then was told nothing we can do for your condition and sent home.. My face is still really bad and nothing is helping 😢. Told to contact my pain consultant Monday and that's it. Its not fair that this condition is pushed aside because no one wants to take ownership and research more into it in the medical field. It angers me that if I hadn't been of sound mind they would have treated me like an anaphylactic shock reaction which would have made it worse. I know what anaphylaxis is and the fact they don't listen is frightening.. Sorry for the rant but no one understands
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Confirmation #EM Confirmation
It has been almost 2 months today that I have lived with EM. I have had a terrible time with the original Rheumatologist whom I consulted with and three weeks ago I made an appointment with another Rheumatologist. She was my first choice, but everyone told me to go this other one I went to in the first place. If only I had listened to my instincts I would not be an inpatient now in hospital.
I’ve been in and out of hospital at least four times in the past 2 months; almost died during this last admission all due to him making a mistake and him not communicating with me.
Living with EM is literally like being in hell with the devil - the idea of a never ending burning territory filled with horrors and always on fire. He let me go through this pain without any help. All he told me to do when I left his consulting rooms was to use ice packs, put my feet and hands in a bowl of cold water and /or elevate the legs. That was it! I was gobsmacked as the consult also cost me close to $400 and I came out of that office knowing exactly what I knew before going in there to consult with him.
It is fantastic that I have come across a group of EM sufferers as I thought that the disease was sooo rare that people asked me how I was, I thought they must be thinking that I am crazy describing my extremities as being “on fire” and the rest. I was so happy (in the EM sense) to know that I was not imagining it. That the redness, the fire, the itch, the excruciating pain was for real and I wasn’t making it up.
Thank you for being there - your existence has confirmed mine and I’m hoping that together we will be able to live through this destructible, excruciating painful disease.
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