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Lying about pain, but not how you’d think
I’m really bad at advocating for pain management and I’ve had some traumatic experiences because of it. For example, once I was sent to the ER for a flare of 10/10 abdominal/nerve pain from MALS and them just giving me a high dose sedative that made me suicidal and unable to move or communicate without any pain meds, so I was just in excruciating pain for hours when they thought I was unconscious. They finally gave me meds when they realized I was conscious but it was just 10 of oxy which did literally nothing, and then after they gave me another 10 and it still did nothing I just lied and said my pain was better since I realized they weren’t going to help me. Anyone else struggle with doing this kind of thing, lying instead of advocating?
The only med I’m on now is 600mg TID of gabapentin, which does help some with the less severe constant pain, bringing it down from a 6-7 to a 4-6, but I still get spikes in the 8-9 range almost daily which nothing has ever helped with, besides fent and oxy a tiny bit at 20mg+ doses, both of which I’ve only really had after surgeries, which feels silly since my surgical pain is so much less severe than my normal, daily pain. I just don’t know how to talk to my doctors about this stuff. I’m trying all the non-medication stuff, doing lots of PT, exercise, CBT, heating pads, ice packs, TENS, lidocaine, CBD, menthol, and even a wheelchair. All of which help to improve my baseline level of pain, but still barely help for those big spikes. Any advice would be much appreciated
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Hopefully someone will respond with helpful suggestions. I am in a similar struggle. I hope you (we) can fine comfort and the right doctor to put all the pieces together.
I've spent 17 yrs in horrendous pain due medical neglect. It took me many, many years to fully understand my condition which went from a small injury to a very serious , debilitating situation. I was terrible at advocating for myself, but im now so traumatized, I sometimes go the other way and am " snotty" with Drs if they dont listen, or tell me something i know is incorrect.
Yes, i've lied because like you in ER multiple times could see there was no help, so I said im fine, I wasnt, and went home devastated.
My best advice learn all you can about your condition and be very educated. Knowledge is power and it makes advocating easier. If you have Mals, have you nit been offered surgery. I have a similar pain which is due damage to Celiac Plexus nerve bundle. I suspected Mals, it was ruled out but yes this type of pain is unbearable to live with. I get the biggest relief from Xanex, fir me very effective for nerve pain but its not designed for that, increasingly hard to get and does carry physical dependency. Im not an addict, if my pain subsided, I could easily stop, but my damage is so long term its now in my spine so that's not happening. Has anyone ever mentioned Celiac Plexus pain, it carries similar symptoms to Mals as I said.
Thanks for the post. We need to know the good, bad and disgusting, but NOT the hard way. If you stink at something, find another path. Ok, nobody's perfect, but do not proclaim to be something/somebody you are not. Can you imagine a piano player that hits the wrong notes in a concert? Do we say they tried? Can we excuse the Doc? Ya, I know it's not the same. Then EVERYBODY KNOWS! But, IF you are NOT good at medical diagnosing when you decided to be a Doctor, please QUIT! Own it! Some things work out by themselves, not Medical intrusion! ( true, if this sounds like a "me too", it is)
Ya know, if anyone is a lousy farmer, they might go a little hungry or they have to find another J-O-B! If we purchase something and it does not work, we RETURN it! You are probably thinking I too had some bad medical advise? Even worse, my pain is worse now than what I went to the Doctor for, just a different place. I had a stiff neck, went to the Doctor who did not even ask me until one second before I got the shot, lying on my stomach, naked to the waist so gave me an injection that has crippled me ever since! Both my hands are crippled and in pain. It's been almost a year and nothing has helped so far! They say "misery loves company," but in this case, I do "get it" & am so sorry that happened to you! I keep asking for something that works, helps reduce the pain, but I have a super careful Pharmacist that tells me the side effects of all the strong stuff are bad and advises me. I understand and love the guy, but of course I think my pain is WORSE than side effects and I admit I DO NOT KNOW! I really do respect the guy though! I am just complaining, cause the big problem now is multiple bad stuff. I have Neuropathy and Sciatica too and with this, I am losing my sense of humor! That is really BAD! Best wishes to you!