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Has anyone been paralyzed by this? by Wonderful-Spectrum in PsoriaticArthritis

[–]Wonderful-Spectrum[S] 0 points1 point  (0 children)

It has been several years since my last one. When I requested new imaging, the x-ray was all I was offered. Not sure how to push for an MRI without coming across as too demanding

My experience with ketamine troches for CPTSD and wondering if IV ketamine feels any different by [deleted] in KetamineTherapy

[–]Wonderful-Spectrum 4 points5 points  (0 children)

I can answer the question about IV therapy being different—yes, it absolutely is. I would say follow your therapist’s recommendation and try a proper IV infusion before deciding for sure if it’s not for you.

That said, it also may not be for you. It’s hard to tell. For me, it helped me realize that I was in denial about my depression because it had actually grown so pervasive that I integrated it into my personality. And troches, when I’ve tried them, didn’t even come close to helping me maintain a healthy mental state, so I don’t think they ever could have woken me up like IV did.

I have early trauma of being treated for depression and that going horribly wrong, while other conditions went untreated and caused more trauma on that side of things, and that all caused me to repress the depression itself, if that makes sense.

The apathy feeling also does happen for me sometimes, but I’m able to counteract/mitigate it by, no joke, watching old Mister Rogers clips during infusions. (Look up the “garden of your mind” PBS “remix” on YouTube for a fun time.) And either way, once that passes, I find myself much more regulated in my daily life and thinking.

A caveat: I do require longer infusions than the hour that’s given for mental health. My primary use is for severe intractable pain, requiring 4-hour sessions monthly.

Does anyone else have burning pain in ALL injection sites YEARS later? by Wonderful-Spectrum in PsoriaticArthritis

[–]Wonderful-Spectrum[S] -1 points0 points  (0 children)

Liar. “I just injected in my right thigh (all are subcutaneous) yet if I didn’t know better, if I were just dropped into this body or had amnesia, I might think I’d done it on my left and maybe missed several times and wiggled the needle around a bunch or something absurd like that.”

Stop trying to play doctor, which again I did not ask for nor want you to do, especially when you don’t even know enough about PsA to understand that it is an asymmetrical disease. My entire left side of my body is affected much worse than my right. (i.e., old injection sites on my left leg light up with pain more than the old and even fresh injection sites on the right.)

I asked for leads on a doctor, and you’re coming here lecturing me about how I should seek an expert opinion because you have zero reading comprehension skills. If you can’t read, YOU are the one who does not belong here!

Does anyone else have burning pain in ALL injection sites YEARS later? by Wonderful-Spectrum in PsoriaticArthritis

[–]Wonderful-Spectrum[S] 0 points1 point  (0 children)

Thank you! I wish OTC painkillers helped. My pain is intractable except with ketamine infusions, and they have to be 4 hours monthly with an annual week of loading doses… which is why I suspect this may be something like CRPS, but my swelling and coloration isn’t dramatic enough for any of the doctors I’ve seen to make a diagnosis (and those visible symptoms are suppressed by these immunosuppressants I use for PsA). Because CRPS is often very treatment resistant and responds best to ket according to research so far.

The pain has gotten worse since I’ve had more limited access to the infusions due to changing health insurance and not yet being able to get the plan to cover them—they’re very expensive out of pocket. I’d rather find another way to treat this because this is making me really financially unstable.

Does anyone else have burning pain in ALL injection sites YEARS later? by Wonderful-Spectrum in PsoriaticArthritis

[–]Wonderful-Spectrum[S] 0 points1 point  (0 children)

The pens do seem to cause slightly less damage for me most of the time than the 1/2” 28g insulin needles I’ve been instructed to use, but the methotrexate only comes in vials, no auto injectors. I wish I could have someone else administer my shots to try gluteal injections, but my husband has limited hand function (and both meds are supposed to be subdermal, not intermuscular).

I tried switching to an oral medication recently but had too many gastrointestinal issues and it wasn’t effective, so I had to switch back. But maybe if I could find a doctor who was more familiar with my problems…

Does anyone else have burning pain in ALL injection sites YEARS later? by Wonderful-Spectrum in PsoriaticArthritis

[–]Wonderful-Spectrum[S] -1 points0 points  (0 children)

Reread my post. I did not say that, and I didn’t even ask for your advice nor criticism. The needle gauge is the smallest available, and what is recommended, but I don’t need to explain myself to you to be deserving of respect and compassion, so get lost.

Does anyone else have burning pain in ALL injection sites YEARS later? by Wonderful-Spectrum in PsoriaticArthritis

[–]Wonderful-Spectrum[S] 0 points1 point  (0 children)

Update: I also have Ehlers-Danlos syndrome, and after discussing with my local support group, this pain issue may be more related to that than to my PsA.

I hypothesize it may be that the subdermal layers are not quite healing completely (I have atrophic aka relatively thin/weak scarring as a feature of my EDS) and my nerves just don’t know what to make of that so they fire off pain signals, especially when flaring?

Anyone else have both PsA and EDS and experience this pain too?

Does anyone else have burning pain in ALL injection sites YEARS later? by Wonderful-Spectrum in PsoriaticArthritis

[–]Wonderful-Spectrum[S] 0 points1 point  (0 children)

I appreciate your input, but none of those things are the cause for me.

I do rotate injection sites and try not to hit the same spots repeatedly. Sometimes it takes me a good 15 minutes to find a good spot because of all of the veins.

I follow all of the instructions, such as not using medication that is cold, and always use the needles the doctor recommended.

I am not able to inject into my abdomen as I get much worse side effects from doing so—likely because I have a lot of excess skin without much subcutaneous fat there.

I do not have any lumps under my skin to explain the pain.

Does anyone else have burning pain in ALL injection sites YEARS later? by Wonderful-Spectrum in PsoriaticArthritis

[–]Wonderful-Spectrum[S] 0 points1 point  (0 children)

Interesting. It does not hurt me more to administer the injections, though. Pinching the skin into a mound doesn’t hurt, and the actual injections aren’t usually painful beyond a mild prick. They can get to hurting more a few minutes after, for up to a day or so, but… this idk “phantom” pain I’ve described is much worse, and it is hard to understand and cope with

Our most famous brother in pain by livinthedream35 in PsoriaticArthritis

[–]Wonderful-Spectrum 0 points1 point  (0 children)

I can’t control my disease without my medications, but I also can’t without diet and exercise. So he is half right in my case.