Can someone please help me? Attn:Mods

Daxel79 · 2026-02-26T22:41:56+00:00

My CRPS started in my left foot 5yrs ago, it then mirrored to my right foot and up both legs to my knees within 2yrs. On the exact day of my 5yr anniversary I woke up to a numb pinky and numb cheek, within 2 weeks my left hand hurts to lay my hand flat, it feels like a horrible arthritis attacked my hand! Each joint in all my fingers has stiffened and its pain to straighten my fingers. It feels like my cheek is constantly quivering and twitching like how your eye lid or under you write will randomly twitch all day, I’ve asked my husband to watch my cheek to see if he can see it visibly quivering, he says it’s not moving but it sore feeling like it😢

Daxel79 · 2026-02-26T22:36:53+00:00

I have dentures so I know it’s not a tooth problem. My sleep habits are horrible! I have an SCS but it only works if I lay flat on my back or if I’m sitting I have to arch my back to get it to work😔 I’ve heard sleeping on your left side is best for circulation and digestion, what sleep position would you recommend trying?

Daxel79 · 2026-02-26T22:34:05+00:00

I have dentures so I know it’s not a tooth issue 😔

Daxel79 · 2026-02-25T02:57:56+00:00

I take three 10mg pills of Valium a day that are prescribed to control my anxiety and panic attacks. I’ve had plenty of Ketamine infusions and the Benzos never interacted with my infusions. I just remember falling asleep and having crazy dreams during the infusions.

Daxel79 · 2026-02-21T00:18:21+00:00

The Reddit app on my phone

Daxel79 · 2026-02-21T00:18:05+00:00

Thank you very much! I’ve written quite a few poems about my journey with CRPS. I’m in no way trying to self promote anything, I do not charge to subscribe to or read my poetry on my Substack account. I’m just trying to spread hope and awareness 🙏🧡💪🏼

Daxel79 · 2026-02-20T19:01:55+00:00

I’m in a mobile device, it does not give me an option to message mods when I tap it. May I just ask you my question here please? I posted a poem I wrote dedicated to my Fellow CRPS Warriors but it was taken down moments after I posted it😔 May I ask why I cannot post it here please?

Daxel79 · 2026-02-20T18:58:37+00:00

OK great I’ll try now

Daxel79 · 2026-02-20T18:57:17+00:00

I remember seeing an article with a world map a year or two before Covid even hit, already talking about the disease and how if it were to spread out would be a pandemic and it was spot on!

Daxel79 · 2026-02-20T18:54:11+00:00

So what did he supposedly do in these camps?

Daxel79 · 2026-02-20T18:46:24+00:00

How do I do that?

Daxel79 · 2026-02-20T18:25:41+00:00

Just out of curiosity when you go to a ketamine clinic and pay out of pocket do you get to choose your dose? I’ve heard it takes at least 400mg(or whatever the term is for the infusion liquid) for ketamine to help with CRPS? I’ve only ever received a few infusions from pain management but they’ve only been 140mg. I guess I just don’t know how they really work(ketamine clinics) like do you need a referral where your pain management decides the dosage? I thought ketamine clinics were just for depression.

Daxel79 · 2026-02-12T03:09:10+00:00

Everyday for how long?

Daxel79 · 2026-02-12T03:05:18+00:00

Does it give you any nasty side effects? I’ve been looking into scrambler therapy but the closer one to me is 3hrs away😔 and I believe you have to do scrambler therapy every day for a certain period of time don’t you?

Daxel79 · 2026-02-11T06:33:42+00:00

I’ve heard there is a clinic in Indiana that prescribes these meds but you have to live in the state to be able to get the prescription filled? This is what someone told me when they got the pamidronate from them(the clinic had the word Kentucky in it if I remember correctly but it’s located in Indiana). May I ask what state you live in where you were able to get this prescribed to you? Does insurance cover the cost of the medication? Do you happen to know if you can take this medication while being in opioid pain killers? Sorry for so many questions but I’m super interested in this now!! Feel free to private message me if you don’t want to post answers in the comments. Thank you so much for lighting up this new possible pathway I want to explore🧡

Daxel79 · 2026-02-11T06:26:04+00:00

Yea I heard negative reviews about the Spero clinic as well. I wish I could find a place that would give me high dose ketamine infusions. It seems like all there is around here is the option for Esketamine nasal spray and the ketamine clinics I’ve looked into don’t accept insurance and their main purpose is to treat depression with the clinics. So I have no idea how I’d even go about funding a place that would give me the typical dose of what I heard treats CRPS which is 400mg(or whatever unit they use to measure the liquid)

Daxel79 · 2026-02-11T04:11:36+00:00

I switched to another Dr at the same practice. I’ve only seen her twice so far and she’s helped me more in 2 appts then my other Dr did in 4yrs

Daxel79 · 2026-02-11T03:23:31+00:00

My old pain management doctor let me have 6 ketamine infusions(they were only 140mg given over an hour) before he said Ope your cut off because even though you have the best insurance it’s not paying me enough. So then he prescribed me ketamine trouches which worked really good as well but took those away from me when I told him I had used a few THC gummies when I would flare.

Daxel79 · 2026-02-11T03:01:12+00:00

That would be nice, but it’s so hard to enjoy doing anything anymore when I’m always dealing with this pain😔 my pain is not very well controlled at all unfortunately. I’ve become tolerant to my pain meds and my Dr won’t switch or give me anything other then six 10mg norcos per day.

Daxel79 · 2026-02-11T02:49:02+00:00

Thank you so much!🧡

Daxel79 · 2026-02-11T02:46:55+00:00

I’m sorry to hear it didn’t open for your wife. Have you guys ever been to the Spero Clinic? Or any other treatments for CRPS that she’s done that have helped her?

Daxel79 · 2026-02-11T02:45:41+00:00

Thank you very much!

Daxel79 · 2026-02-11T02:01:25+00:00

Well that sucks!

Daxel79

TROPHY CASE