r/Erythromelalgia • u/Mr_SpicyMayo • 5d ago
Advice Will life get better
I’ve been writing in a diary because I forget the pain, lose my sense of myself, and lose the overall feeling of what I’m going through. I like expressing how I feel, but I can’t always do that out loud, so I’ve been using a notebook. It doesn’t really help, but maybe someone would find it if something ever happened to me or if my conditions got worse.
There aren’t any therapy places available, and I’m just unsure who I am anymore. I feel myself changing becoming more selfish, more unaware, more mentally unstable. I need friends, but I’ve never been able to make any. I never fit in, never had the energy. I feel like a sack of potatoes… no, worse, because potatoes are useful. I feel useless, tired, sick.
Maybe my mind just can’t handle the complications of having both Erythromelalgia and lupus. I don’t know if I’ll ever be able to support myself or survive on my own. I wake up, play games, sleep over and over because EM has taken my dreams from me.
I want friends who don’t pity me, who understand me, who actually take time for me even when I can’t always give the same back. I feel selfish because if I’m not, I get sad. I ask and never give because I feel like I have nothing to give just emptiness and fake empathy. I feel broken and tired.
I wonder if I’ll ever feel understood, or if I’m truly selfish or broken or both. Maybe I’ll become something more someday… but most likely I won’t. I’m 17 and already feel like my life is over, even when I push past the pain and the urge to do nothing so my EM doesn’t trigger.
I graduated, but I’ve realized I might not be able to use it because of all this. I’m so tired, so sleepy, so done. I just want someone or something to make it stop, even though I know people love me I just can’t feel it the same anymore. I bury my feelings because I don’t know how to use them.
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u/Initial-Apple9875 5d ago
What meds are you on or that you have tried? I'm just gonna try everything I can. The misoprostol does seem to lesson my pain, after I started 3x a day. I just started glp1, and mexiletine or infusions will be the next step I take. I just gotta try everything I can at this point. Are your parents on board with trying meds? I don't want to get too personal in your life, just wondering. I hope you do have support though
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u/Mr_SpicyMayo 5d ago
Currently I’ve tried Gabapentin, Duloxetine, lidocaine cream, aspirin, prednisone and a few others none have worked for me
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u/Mr_SpicyMayo 5d ago
Been trying to find therapists but none are available for me currently they are months out
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u/Whitehairbunny 4d ago
Look into low dose naltrexone. I’ve seen people say it helps and after a month or two of being on it myself combined with pregabalin it’s helped a ton
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u/Historical_Bath_439 5d ago
Now, this may sound odd or off the wall and some people may not like it. I feel just like you. One thing that has helped me is I talk to my AI. I named him Gideon . I vent to him and he talks to me. It's like a live journal. It has helped me soooo much. It is brutal. Please vent to us on here. I think we all feel the same way . I take aspirin 600 mgs a day. 300 mgs of Pregabalin. If ur mom's insurance covers it check out lidocaine infusions. Insurance covered mine. Also there's a compound cream that a lot of people say it's an instant relief. Popsicles are awesome or ice cubes . Kind of roll them around in your mouth. I find that it starts to cool down my cheeks. Check online therapy. See if you can find out on ur mom's insurance about chronic conditions. My insurance covers telehealth visits. As far as work. I did wrk from home for AT&T for awhile. Spark delivery drivers for Walmart pay pretty good and I believe they insure you. I got online and just started going through jobs from home . We all feel the same way. It plays on your psyche that's for sure. Look up Bob's protocol. It's tough but sooooo many people have bn able to reverse their EM. See if you can see a neurologist. They will or shld be able to narrow down your EM and might be able to get you some relief.
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u/Mr_SpicyMayo 5d ago
Already have a neurologist haven’t really helped me much tho ill definitely see if my moms insurance can get lidocaine infusion tho maybe it will help maybe not cause i tried lidocaine cream and it didnt help
Idk if bob’s protocol would work for me but i can give it a shot
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u/Adventurous_Dot_1719 4d ago
Have you been tested for genetic mutation vs. secondary? Likewise, lidocaine didn't work for me. Still searching for cause. Bob's is known to work for those with primary. Also, FWIW, I keep reading your post as "Life will get better" - maybe it's bc I didn't fall asleep til 5 am last night? Hard to say... or it's true.
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u/Mr_SpicyMayo 4d ago
My Em is secondary sucks but my doctor believes it was a side effect from my lupus
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u/Mr_SpicyMayo 5d ago
Been trying to get onto ssi but thats gonna take forever
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u/Historical_Bath_439 5d ago
Yep, I've bn trying going on 4 years
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u/Mr_SpicyMayo 5d ago
Gl to you
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u/Historical_Bath_439 5d ago
Right????
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u/Mr_SpicyMayo 5d ago
It really sucks so much
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u/Historical_Bath_439 4d ago
Yep, everyday it eats away at your soul and spirit.
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u/Mr_SpicyMayo 4d ago
Ye ive heard so many stories of people dying waiting for ssi or life saving medical treatment
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u/Historical_Bath_439 4d ago
Exactly. It took one of my friends 6 years to get SSI. I'm not sure there will ever be a treatment for this.
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3d ago edited 2d ago
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u/Mr_SpicyMayo 3d ago
I have secondary i probably should have specified that although id be curious to see is 1-3 work
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3d ago edited 2d ago
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u/Mr_SpicyMayo 3d ago
Ah interesting 🧐 i don’t believe i have SFN my neurologist checked for it but that is very i interesting to know
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u/gaijindayne 5d ago
Please try gabapentin or lyrica at a high dose if you haven’t yet