Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hi all. I've been off awhile but I can't sleep and I have a question for you all.
In case you're new or don't recall, I have had RSD of the left foot/leg since 1997. My PM died 4 years ago and I came here, scared to death. Someone here was kind and gave me the name of a PM doc about 45 minutes from here. I went, he adjusted my dose to a higher long-acting and WAY less quick acting morphine. It worked well and I never had a complaint.
Last year I was taken by ambulance to the ER b/c I THOUGHT I was dying. It turned out to be a bigger kidney stone than I'd been used to. I had another last October- 2 at the same time, one chasing the other. I was referred after 20 years of stones to a Urologist and she is amazing. She says my CT shows approximately 20 or more stones in each kidney. She did lithotripsy on my right kidney last March and damn, was that a harsh surgery recuperation! But she got 2 of the biggest stones in my right kidney.
For years I'd been complaining of back pain but it wasn't like the spondolothysis I'd had as a teen/20's. She explained that having your kidneys chock full of stones can cause pain. I just had my 6 month check up and she said there was blood in the urine, which didn't shock me as I'd been having slight flank pain all day. But the CT scan wasn't done until 4 days later and they didn't see anything in the ureter. Doesn't mean it isn't there, b/c the 2 that I passed at once never showed up either.
So I saw my pain doc last week and we spoke about the stones. When I told him how many were in each kidney, he asked, "What do you want to do to deal with the pain?" I wasn't sure what he meant as I get relief from a non-opiod called torredol when it is passing. But he asked if my pain levels were up b/c of this and I said, well, my back hurts but it always does. He asked again if I wanted to try something stronger, something new. But I REALLY don't want to mess with it. Oddly, my regimen has worked for years and I'm still able to have a life. I work, am a mom, and a wife.
The idea of getting used to another medication makes me crazy. So I said, "Please don't change a thing. If it gets bad, I'll call you." He was very kind about it and I've never asked for any changes. My question is, was I stupid for not trying something new that could possibly kill the RSD pain AND the kidney pain? At this point I feel like there's nothing that works for the stones anyway. Torradol works but can only be taken for 5 days. I just don't want to have to ask after I've said no, but I'm worried about it since the stones aren't going away. I always thought my pain was just back pain but where both docs knocked and examined is where my kidneys are. We do know that there are some huge stones in there and if they tried to pass, they'd cause a lot of problems.
I feel like I can handle the pain that is there now, but I'm afraid of the unknown. I have atypical RSD in that it never spread to another limb or needed stronger meds. When I was 1st titrated I took less long-acting and more quick acting, but it's the only change I've made. Yes, I have harsh days in the cold Winter, and when I walk too much, etc. But I've learned to live with that.
I guess I'm worried that they're both bringing this up b/c the pain WILL get worse? I don't want to mess with a good thing. The meds I take work well most of the year. If I have a bad day I usually am able to take the day to myself and rest. I just don't want to get all tired again and deal with side effects.
Does ANY of this make sense?
In case you're new or don't recall, I have had RSD of the left foot/leg since 1997. My PM died 4 years ago and I came here, scared to death. Someone here was kind and gave me the name of a PM doc about 45 minutes from here. I went, he adjusted my dose to a higher long-acting and WAY less quick acting morphine. It worked well and I never had a complaint.
Last year I was taken by ambulance to the ER b/c I THOUGHT I was dying. It turned out to be a bigger kidney stone than I'd been used to. I had another last October- 2 at the same time, one chasing the other. I was referred after 20 years of stones to a Urologist and she is amazing. She says my CT shows approximately 20 or more stones in each kidney. She did lithotripsy on my right kidney last March and damn, was that a harsh surgery recuperation! But she got 2 of the biggest stones in my right kidney.
For years I'd been complaining of back pain but it wasn't like the spondolothysis I'd had as a teen/20's. She explained that having your kidneys chock full of stones can cause pain. I just had my 6 month check up and she said there was blood in the urine, which didn't shock me as I'd been having slight flank pain all day. But the CT scan wasn't done until 4 days later and they didn't see anything in the ureter. Doesn't mean it isn't there, b/c the 2 that I passed at once never showed up either.
So I saw my pain doc last week and we spoke about the stones. When I told him how many were in each kidney, he asked, "What do you want to do to deal with the pain?" I wasn't sure what he meant as I get relief from a non-opiod called torredol when it is passing. But he asked if my pain levels were up b/c of this and I said, well, my back hurts but it always does. He asked again if I wanted to try something stronger, something new. But I REALLY don't want to mess with it. Oddly, my regimen has worked for years and I'm still able to have a life. I work, am a mom, and a wife.
The idea of getting used to another medication makes me crazy. So I said, "Please don't change a thing. If it gets bad, I'll call you." He was very kind about it and I've never asked for any changes. My question is, was I stupid for not trying something new that could possibly kill the RSD pain AND the kidney pain? At this point I feel like there's nothing that works for the stones anyway. Torradol works but can only be taken for 5 days. I just don't want to have to ask after I've said no, but I'm worried about it since the stones aren't going away. I always thought my pain was just back pain but where both docs knocked and examined is where my kidneys are. We do know that there are some huge stones in there and if they tried to pass, they'd cause a lot of problems.
I feel like I can handle the pain that is there now, but I'm afraid of the unknown. I have atypical RSD in that it never spread to another limb or needed stronger meds. When I was 1st titrated I took less long-acting and more quick acting, but it's the only change I've made. Yes, I have harsh days in the cold Winter, and when I walk too much, etc. But I've learned to live with that.
I guess I'm worried that they're both bringing this up b/c the pain WILL get worse? I don't want to mess with a good thing. The meds I take work well most of the year. If I have a bad day I usually am able to take the day to myself and rest. I just don't want to get all tired again and deal with side effects.
Does ANY of this make sense?
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thalijen it all makes sense....you did fine by not asking them to change anything....it could be much better than you think because 1)he did not tell you which med he wanted to try *at least you did not mention one here 2)you could have had all kinds of adverse reactions that could have tossed your whole system and well
being into question,
I think if you get a bad pain I would ask for something...I would however check back with the doctor about the blood in urine....you do not want that to continue and if it does it means something is not right.....
About a year later, I came back to that same Dr and told him I was ready to move up - and he was totally fine with that. Now, it turned out that it did not work out for me so we went back to hydrocodone. Keeping a good rapport with your doctor allows you to later change your mind - but not until YOU need it.
Also, by turning down meds, you have probably made kudos with your doc as proof that you are not drug seeking.