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Life With Lupus

Cns lupus PAIN MEDS


#1

I started oxycodone best thing ive ever tried especially for a flare or attack with Tylenol. I think because my cns is over reactive. I called 10 diff pain specialtists and none of them prescribe oxycodone. I live in pa. THIS IS JUST WRONG. I don’t no how long I have on this earth its my body I should be able to take as much as I need. Itylenol only need a high does for a couple months. My plan is to get off. I cry every night in so much pain. But this combo
clozapam
prednisone
oxycodone
Tylenol
tumerick26.
Cellcept

IS WORKING I just need higher does of pain meds because im going through a hard time and cellcept takes 3 months to kick in And honestly this pai med hoax that’s a lie from hell that they make things worse.NO LUPIE SHOULD BE LAYING AROUND!!! THERES A BALANCE. As long as you eventually get off and you need them to push through something. ITS FINE JESUS SAYS HELL take care of you and we need not be worried. His plan is not chronic suffering. Why would we have opiod receptors? This medicine is for ppl like US. To have a life back.Even if I have to suffer from withdraw for ten days that’s better than sick everyday, I need like 15mg 7 times a day and id be good. All I wanna do is finish this album and do shows while im still 26 WHERE DO I FIND A PA PAIN SPECIALTISTS THAT DOES PAIN MEDS???


#2

The opioid crisis in our nation has caused another crisis for those of us who legitimately need it for pain relief! Sometimes my pain is excruciating and is not helped by over the counter pain relievers. Also, I’ve taken opioids on and off over the years whenever necessary and I’ve NEVER been addicted to them. It’s a common misconception that it’s addictive for everyone. It’s an amazing pain reliever, and I feel your frustration!! There IS a place for opioids with patients in severe chronic pain. I see a PA as my primary care physician and she agrees with my philosophy and prescribed them for me. Keep searching for the right doctor. Good luck to you. Hugs


#3

Hey Janelle, I understand what you r saying! I truly do. There is an issue with narcotics as meds all together. By that I mean there are opiods, non-opiods (such as Methadone) & Benzodiazapines (Clonazapam). There are many other narcotics, but I can only speak for myself. I take Methadone for pain and Clonazapam for anxiety and sleeplessness. The overall issue with any narcotic is, “Do you plan or need it prn or long-term?” the answer to that changes the outcome of your answer. It took me a very long time to come full circle with my meds, maintenance and pain meds. To be addicted and to be physically dependent are two different things which can easily be confused with one another. Please do some more research and if you want I am always willing to tell you what happened with my situation. I hope things are at least more stable for you now, but please beware of the oxys. Just like any other they will affect you differently as per your body make up and so to do all the narcotics have their own personal side effects. Either way…I truly hoped this helped and I wish you enough. Love and light to you Janelle!:smiley:


#4

I feel like I need it all the time. Then prn during nightly flares. I tried lyrica yesterday sand got massively sick? I ended up taking 30 mg of prednisone. This opiod epidemic makes me to scared to ask for morw, plus when I told doc ice the phone he said 10 mg ever 4 hrs should be enough. This natural med kratom works great but I just got a can scan and they found lesions and polyps and im afraid its from that…its actually stronger than oxy.


#5

Hey Janelle, I was curious about which type of Kratom did you use? Fast, medium or slow? Also, if you could prescribe to yourself, what and how much would you prescribe? Please know, I dont judge cuz I’ve been there! Hope all is well with you!:grinning::grinning:


#6

I would love to be my own doctor… I WOULD perscribe mobic, extended release morphine (because morphine is most natural) then a prn oxycodone equivalent 25mg 2 x at night time one at 5pm and one at 7pm because that’s when my flares are. Only one at 5 pm if I’m not singing.


#7

I used life force kratom 1/2 tbs 5 times a day max. But when I got a cat scan and had polyps on my liver but it could be to tylenol too…I’m nervous about that drug


#8

Hello Janelle, which Kratom though ? If you can’t remember, just try and remember what color it was. If not, no worries! Ihope all goes well and please keep me up to date on any progress with you! Love and light!!:smiley:


#9

Thanks fitz, color I always go with red strains. Seems as if now I’m sticking with kratom ditching the pain meds because kratom seems to be more consistent.


#10

Right on. I know Kratom has it’s own withdrawal characteristics, but much easier to deal with them any opioid I’ve run across. Lmk how things r working out for you. Hope it works great!:v:


#11

Thanks will do! Doctor just switched me to mobic and morphine and morphine makes me feel like my bp is dropping really low… It’s getting warmer out so I should need less meds anyway but not sure if uve had this experience I’m ok with it in the hospital but idk makes me feel really weird


#12

This is a list of all My meds

Citalopram 40mg 1x day
Lisinopril 40 mg 1x day
Hydrochlorothiazide 25mg 1x day
plaquail 600mg 1x day
Protonix 40 mg 1x day
keppra 500mg 2x day
Vitamin d 500 2x day
Trazodone 100mg 1x night
Gabapentin 300mg 3x night
Acthar 1 injection 2x week
Benlysta infusion 1210 1x month
800 mg Motrin as needed
Norco 1 3.325 as needed
Sivextro 200mg as needed
Lidoderm 5% as needed
Tramadol 100 mg As needed

I replaced the norco with tramadol but mainly take the 800mg Motrin I’ve stopped taking prednisone altogether and replaced it the Acthar gel it’s pricey but there are programs to help and the benlysta that is a drug for lupus and it helps a lot and that’s a monthly infusion show ur RA this Med list and ask what he thinks about any of those Meds but every lupus case is different your dr just have to find your right combo


#13

And the use of medical marijuana


#14

Yea does that help? I got cbd oil


#15

I believe it works been doing it now for 4 years and haven’t had any serious problems besides aches and pain here and there