This will be my first time seeing a pain specialist. I have advanced chronic pain from psoriatic arthritis, it's so bad I haven't been able to work for 2 years. The good news is when you reach this state of incapacitation the medical care my state is providing (united healthcare) has no copay and no bill. I don't even have a bank account presently, that's how grim things have become. I have a partner who helps me way more than he should.
Recently I fell and was injured in my shoulder, but that's the shoulder my immune system has been trying it's best to digest. So now I can't even lift my hand, the rotator cuff is going to get an MRI soon and I expect joint replacement. I'm 47M and not willing to just give up use of my right arm for the rest of my life.
Anyways, the pain. Oh, I would like to have skipped this part. Yes, indeed. The pain. I see it, it's that bad. When I move my arm the wrong way and there's bone on bone, there's a flash in my eyes and I can't help but flinch. It's happened while driving, and almost made me jerk the steering wheel. I'm slow to accepting what I can and can't do anymore, but what I need more than anything is something for the pain. My joints also hurt, my hands, my feet, my ankles, my knees, my hips. I take 4 hours to get out of bed some days. And all they've given me for it is tylenol.
In the past, I went to urgent care, they said they can't prescribe pain meds anymore or even give them to me when I'm there. They gave me a steroid shot and for my disease, that works wonders so much it makes me cry twice. The first time when I realize how bad it was, couldn't tell till it was gone. The second time is when it all comes back a few days later, and what was given to me is taken away. They said I need to go to the ER.
This time, I went to the ER. They did xrays and all that and gave me a two day supply of hydrocodone 5mg/325. they said they NEVER do this, normally. but they could see I was suffering. The pills didn't even move the needle. I had some codeine sitting around and consumed a bunch of that and a few of those pills they gave me. still did nothing. just does not do a damn thing for the breakthrough pain and the overall pain it's like ... it's like I took nothing. I don't even feel a buzz and that's not what I'm looking for, but I think I have so much adrenalin going or something that the pain just cuts through the buzz, makes it irrelevant.
Anyways, the ER said I need to talk to my PCP.
So I went to my PCP and they say they can't prescribe pain meds anymore and I should write my congressman because it's a real problem. I'll need to see a pain specialist.
I have an appointment, they were willing to see me in just two days, because my pain is severe. I need to know what to ask for or what to expect, as I can only list off the previous pain meds I've had and what they did. I'm very resistant to pain meds, which is to say I've always needed a lot. I have no history of abuse, and my veins are plump enough to hit from across the room. I have hemachromatosis so I donate blood every couple of weeks. I actually feel better after!! Probably the only person you'll meet who feels good after a blood donation, full 500mL too. They test me before and all that. Ok. so. pain meds. god I hate this shit. but this is the state I'm in. and I'm so freaking debilitated I just don't even want to begin. I will say I'm on a biologic, like humira, and it's working well. I take daily prednisone too, a low dose and it's been saving my ass big time. big time!! this stupid disease. if you don't know, it's RA's bigger brother. Yes, it makes rheumatoid arthritis look like a slap on the wrist. It's medically accepted to be SIGNIFICANTLY more painful. and all I can say is the mental impact also, the inflammation in the brain. It's bad.
ok so I've had some injuries and surgeries over the years, and this is what they ended up giving me:
dilauded by injection, I remember that. had that a bunch. the morphine they gave me just didn't work, it was for a gall bladder surgery. they had to cut me open during the laproscopy and ugh. woke up with a zipper. had to have hernia mesh repair done three times before it took. so four chest surgeries in all. I got familiar with the pain med regemin there.
also had oxycodone, they gave me 80 pills for 10 days. it was for jaw surgery. it barely worked. I really hear so much crap about it but don't understand because the stuff just comes on and is gone in 4 hours and I hated it. they had me taking it every 3 hours I think. something to do with it's halflife. anyways, no addiction from it, believe it or not. they just had me take half for a day and the next day I just quit. they offered me more in case I needed it, so I wouldn't be pressured. but other than that. things were fine, but the pain releif was ... not ... great. at all. in any way shape or form
morphine sulfate ER 30mg? those worked. all day. I don't understand why they don't prescribe it more. will I be able to ask for that? It was for a different surgery, and it's just what they gave me. it worked. I wish I had that so bad right now.
anyways. I just have no idea what to expect, or to ask for, or what not to say. I feel like a drug addict at this point. but unlike most times in my past, I'm not really concerned with addiction or even really ... long term health, lets just say. I will be in a wheel chair and bed bound eventually. it will be really ugly. and lets just say I looked at when my 401k vested and called them up and cashed it out. penalties and all. I mean, wtf. I want to spend it now while I can actually move. But based on whats gone on with my right shoulder, man ... you just wouldn't believe what it's used for, and how. in so many things, we take it for granted. until its gone.
so yeah, hi BL. been reading this site for years. first time posting. just need to know what to expect. hydocodone didn't do shit, did not move the needle. do I tell them that? will they react bad? I just have no idea and so much is hinging on this, I've had a really, really, really, really hard time leading up to this.
I'll just add I'm horrible to be around when it hurts the worst. like, if I move my arm the wrong way swatting at a fly even, I cannot help but swear and yell and I'm a screaming-on-the-inside type of person. so for me to vocalize is huge, like, beyond huge. I'm not even experienced with it, I usually just keep my words to myself. but with how this is. like. I don't know what everyone else's 10/10 looks like. mine is ugly. a Very Bad Day.
Oh, and on the whole I'm resistant to pain meds thing? One time for a surgery I just ... I was in a lot of pain and didn't even want them to operate. and the doctor told me, I will make sure your pain is at 0 before you leave here. is that good enough? and I said sure. well. after the surgery, my pain was significant. and they shot me up. and asked how it was after checking my BP. I told them, and they shot me up again. We did this a few times and finally the doctor leaned over and said "You should be dead right now. But I told you I'd get you to zero, so here comes more." ... they finally got me to zero. they really did. but what's up with the you should be dead now? am I screwed? I've never needed pain meds really, in my life. I just .. grin and bare it. so when I'm finally asking, it's bad. and to top it off I've got some weird body chemistry-- I mean my freaking immune system is happily munching away at my body and then my body has to heal itself. when I get sick, it stops, because my immune system is tasked with more important things to do. I can take codeine so I know it's not that weird CYP452 or whatever the hell deficiency. my body converts it to morphine fine. at least, it did, back when I took it forever ago. like I said I took a handful of the stuff with the hydrocodone and it did nothing. I felt scammed. it was that bad.
tldr, when I'm asking for pain relief, its frequently with tunnel vision and hearing loss, it's that bad when it gets bad.
Recently I fell and was injured in my shoulder, but that's the shoulder my immune system has been trying it's best to digest. So now I can't even lift my hand, the rotator cuff is going to get an MRI soon and I expect joint replacement. I'm 47M and not willing to just give up use of my right arm for the rest of my life.
Anyways, the pain. Oh, I would like to have skipped this part. Yes, indeed. The pain. I see it, it's that bad. When I move my arm the wrong way and there's bone on bone, there's a flash in my eyes and I can't help but flinch. It's happened while driving, and almost made me jerk the steering wheel. I'm slow to accepting what I can and can't do anymore, but what I need more than anything is something for the pain. My joints also hurt, my hands, my feet, my ankles, my knees, my hips. I take 4 hours to get out of bed some days. And all they've given me for it is tylenol.
In the past, I went to urgent care, they said they can't prescribe pain meds anymore or even give them to me when I'm there. They gave me a steroid shot and for my disease, that works wonders so much it makes me cry twice. The first time when I realize how bad it was, couldn't tell till it was gone. The second time is when it all comes back a few days later, and what was given to me is taken away. They said I need to go to the ER.
This time, I went to the ER. They did xrays and all that and gave me a two day supply of hydrocodone 5mg/325. they said they NEVER do this, normally. but they could see I was suffering. The pills didn't even move the needle. I had some codeine sitting around and consumed a bunch of that and a few of those pills they gave me. still did nothing. just does not do a damn thing for the breakthrough pain and the overall pain it's like ... it's like I took nothing. I don't even feel a buzz and that's not what I'm looking for, but I think I have so much adrenalin going or something that the pain just cuts through the buzz, makes it irrelevant.
Anyways, the ER said I need to talk to my PCP.
So I went to my PCP and they say they can't prescribe pain meds anymore and I should write my congressman because it's a real problem. I'll need to see a pain specialist.
I have an appointment, they were willing to see me in just two days, because my pain is severe. I need to know what to ask for or what to expect, as I can only list off the previous pain meds I've had and what they did. I'm very resistant to pain meds, which is to say I've always needed a lot. I have no history of abuse, and my veins are plump enough to hit from across the room. I have hemachromatosis so I donate blood every couple of weeks. I actually feel better after!! Probably the only person you'll meet who feels good after a blood donation, full 500mL too. They test me before and all that. Ok. so. pain meds. god I hate this shit. but this is the state I'm in. and I'm so freaking debilitated I just don't even want to begin. I will say I'm on a biologic, like humira, and it's working well. I take daily prednisone too, a low dose and it's been saving my ass big time. big time!! this stupid disease. if you don't know, it's RA's bigger brother. Yes, it makes rheumatoid arthritis look like a slap on the wrist. It's medically accepted to be SIGNIFICANTLY more painful. and all I can say is the mental impact also, the inflammation in the brain. It's bad.
ok so I've had some injuries and surgeries over the years, and this is what they ended up giving me:
dilauded by injection, I remember that. had that a bunch. the morphine they gave me just didn't work, it was for a gall bladder surgery. they had to cut me open during the laproscopy and ugh. woke up with a zipper. had to have hernia mesh repair done three times before it took. so four chest surgeries in all. I got familiar with the pain med regemin there.
also had oxycodone, they gave me 80 pills for 10 days. it was for jaw surgery. it barely worked. I really hear so much crap about it but don't understand because the stuff just comes on and is gone in 4 hours and I hated it. they had me taking it every 3 hours I think. something to do with it's halflife. anyways, no addiction from it, believe it or not. they just had me take half for a day and the next day I just quit. they offered me more in case I needed it, so I wouldn't be pressured. but other than that. things were fine, but the pain releif was ... not ... great. at all. in any way shape or form
morphine sulfate ER 30mg? those worked. all day. I don't understand why they don't prescribe it more. will I be able to ask for that? It was for a different surgery, and it's just what they gave me. it worked. I wish I had that so bad right now.
anyways. I just have no idea what to expect, or to ask for, or what not to say. I feel like a drug addict at this point. but unlike most times in my past, I'm not really concerned with addiction or even really ... long term health, lets just say. I will be in a wheel chair and bed bound eventually. it will be really ugly. and lets just say I looked at when my 401k vested and called them up and cashed it out. penalties and all. I mean, wtf. I want to spend it now while I can actually move. But based on whats gone on with my right shoulder, man ... you just wouldn't believe what it's used for, and how. in so many things, we take it for granted. until its gone.
so yeah, hi BL. been reading this site for years. first time posting. just need to know what to expect. hydocodone didn't do shit, did not move the needle. do I tell them that? will they react bad? I just have no idea and so much is hinging on this, I've had a really, really, really, really hard time leading up to this.
I'll just add I'm horrible to be around when it hurts the worst. like, if I move my arm the wrong way swatting at a fly even, I cannot help but swear and yell and I'm a screaming-on-the-inside type of person. so for me to vocalize is huge, like, beyond huge. I'm not even experienced with it, I usually just keep my words to myself. but with how this is. like. I don't know what everyone else's 10/10 looks like. mine is ugly. a Very Bad Day.
Oh, and on the whole I'm resistant to pain meds thing? One time for a surgery I just ... I was in a lot of pain and didn't even want them to operate. and the doctor told me, I will make sure your pain is at 0 before you leave here. is that good enough? and I said sure. well. after the surgery, my pain was significant. and they shot me up. and asked how it was after checking my BP. I told them, and they shot me up again. We did this a few times and finally the doctor leaned over and said "You should be dead right now. But I told you I'd get you to zero, so here comes more." ... they finally got me to zero. they really did. but what's up with the you should be dead now? am I screwed? I've never needed pain meds really, in my life. I just .. grin and bare it. so when I'm finally asking, it's bad. and to top it off I've got some weird body chemistry-- I mean my freaking immune system is happily munching away at my body and then my body has to heal itself. when I get sick, it stops, because my immune system is tasked with more important things to do. I can take codeine so I know it's not that weird CYP452 or whatever the hell deficiency. my body converts it to morphine fine. at least, it did, back when I took it forever ago. like I said I took a handful of the stuff with the hydrocodone and it did nothing. I felt scammed. it was that bad.
tldr, when I'm asking for pain relief, its frequently with tunnel vision and hearing loss, it's that bad when it gets bad.
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