IZZY'SMOM
05-21-2008, 05:30 PM
Hi everyone...
A while back, Steve or someone wrote a really great paragraph on how to ask your doc for a new plan without sounding pushy and also thanking him for wonderful PM care.
Does anyone have any thoughts on how to talk to my doc? I put a call in to him today, and most likely he will catch me when i have kids in the car or cant talk. If so Ill call him back.
But I want to try the compound oxy instead of the patches this summer, but I dont want him to tell me the old.."well then maybe we need to stop your meds for awhile, ect."
I dont think he will say that at all, but Im always terrified it could happen.
Usually I have no problem asking him for what I want, maybe Im reading into too much of the posts lately, and being sfraid that my doc thinks Im pushy or one of those pts who think they know it all.
Any help would be greatly appreciated.
If anyone can find the paragraph Steve wrote, that would even be better!
It was about 3 weeks ago. Ive been looking, too.
xoxoxoxo,
IZZY'SMOM
I am currently on LA hydro 15 mg
SA hydro 10 mg for b/t
12 mg patch 2-3 days usually 2
A while back, Steve or someone wrote a really great paragraph on how to ask your doc for a new plan without sounding pushy and also thanking him for wonderful PM care.
Does anyone have any thoughts on how to talk to my doc? I put a call in to him today, and most likely he will catch me when i have kids in the car or cant talk. If so Ill call him back.
But I want to try the compound oxy instead of the patches this summer, but I dont want him to tell me the old.."well then maybe we need to stop your meds for awhile, ect."
I dont think he will say that at all, but Im always terrified it could happen.
Usually I have no problem asking him for what I want, maybe Im reading into too much of the posts lately, and being sfraid that my doc thinks Im pushy or one of those pts who think they know it all.
Any help would be greatly appreciated.
If anyone can find the paragraph Steve wrote, that would even be better!
It was about 3 weeks ago. Ive been looking, too.
xoxoxoxo,
IZZY'SMOM
I am currently on LA hydro 15 mg
SA hydro 10 mg for b/t
12 mg patch 2-3 days usually 2
Sponsor
forginon
05-21-2008, 06:00 PM
"Hey doc,"
"I can't tell you how much I've appreciated the pain coverage you've given me this winter, and how much I appreciate how understanding you are when we talk.
Summer's coming and I'm already experiencing perspiration and small difficulties with keeping the patch on. Plus I hear heating up while on the patch can drain it too fast.
You know my preference for the compounding meds. Do you mind if I offer an idea? How about we discontinue the patch for the summer and use compounding for my main LA med? I find that the compounded hydrocodone isn't a one-for-one substitute for the patch, but maybe something else. Something that will have the strength of the fentanyl but compounded - I've done real well on the medicine called oxycodone before, could they compound that for me in a LA form like with the hydrocodone? I'm willing to do a brief trial and see how it goes. After you select the dose we could do trial and error with dosing until it covers my pain like the patch did. If it works, then maybe that could be my hot weather solution.
I'd really like to try this if you think it's an OK idea."
steve
"I can't tell you how much I've appreciated the pain coverage you've given me this winter, and how much I appreciate how understanding you are when we talk.
Summer's coming and I'm already experiencing perspiration and small difficulties with keeping the patch on. Plus I hear heating up while on the patch can drain it too fast.
You know my preference for the compounding meds. Do you mind if I offer an idea? How about we discontinue the patch for the summer and use compounding for my main LA med? I find that the compounded hydrocodone isn't a one-for-one substitute for the patch, but maybe something else. Something that will have the strength of the fentanyl but compounded - I've done real well on the medicine called oxycodone before, could they compound that for me in a LA form like with the hydrocodone? I'm willing to do a brief trial and see how it goes. After you select the dose we could do trial and error with dosing until it covers my pain like the patch did. If it works, then maybe that could be my hot weather solution.
I'd really like to try this if you think it's an OK idea."
steve
Torry590
05-21-2008, 06:07 PM
Wow, I have always wondered the same thing. I never know how to address things with these doctors. I usually pile it all on and I know thats not a good thing to do.
speciality
05-21-2008, 07:31 PM
Hi IZzy, all Dr's are diffeent, I have always been very open and direct with my Dr. and he with me. He has even gotten a bit fired up with me at times, but I think he respects me. Usually, he has an idea, I listen to it, then I add whatever I think, or any suggestions. Then we work it from there. Because I do not have insurance, he went out on a limb treating me with only xrays and no MRI for many years. I did finally pay for an MRI, and he seemed to realize his instinct was correct in treating me. I had/have 5 heniated disks, 2 nerve impingements ect. I have told him repeatedly (and meant it) that I appeciate his having the fortitude to prescribe meds for me. I thanked him for giving me the ability to stand for 5minutes in the shower ect. He does get a bit fired up when I tell him a med is not woking, and he isnt quick to incr:angel:ease doses, but he has been good to me. I would say use your gut, and try not to overthink it, people can FEEL when we are sincere, and when we are not. Good luck!
aussiejono
05-21-2008, 08:12 PM
Can I ask.... why a compound, rather than OxyContin?
trowftd3
05-21-2008, 08:49 PM
Steve,
Can we just pack you up and ship you around the country to come with everyone when they have to go to the doctor??? Please.;)
Izz, I know how you feel about all the posts here. I usually try not to read any difficult posts for a couple days before I'm going to talk to my doctor. Otherwise my blood pressure goes up and I get soooo nervous thinking about all the things that could go wrong.
I don't mean to demean or belittle or negate anyone's troubles. I know that doctors can be difficult. I have just been relatively lucky with my doctor. Knock on wood.
Izz, Just relax and follow Steve's advice. You and your doc have a great relationship and if you keep the focus on quality of life and not a specific med, you'll be ok. That bein said....Good luck!!!~Mush
Can we just pack you up and ship you around the country to come with everyone when they have to go to the doctor??? Please.;)
Izz, I know how you feel about all the posts here. I usually try not to read any difficult posts for a couple days before I'm going to talk to my doctor. Otherwise my blood pressure goes up and I get soooo nervous thinking about all the things that could go wrong.
I don't mean to demean or belittle or negate anyone's troubles. I know that doctors can be difficult. I have just been relatively lucky with my doctor. Knock on wood.
Izz, Just relax and follow Steve's advice. You and your doc have a great relationship and if you keep the focus on quality of life and not a specific med, you'll be ok. That bein said....Good luck!!!~Mush
IZZY'SMOM
05-21-2008, 09:05 PM
Got a call back....Im kind of worried. I am in worry mode lately. whenever my pain is high iM that way, and I hate it.
I verbatim read from Steve's paragraph...and also told him Id spoken to the compound pharmacist, since we are on really good terms, and told him the patch wasnt going to be an option for me this summer, I was fearing.
I could tell he was harried, he told me I could come for an appt, but we could do this over the phone. He asked for my CPharmacy number and said he would call tomorrow and then call me back.
I did call my pharmacist and told her to expect his call. Also she told me that there is gel phentanyl, and dissove under the tongue, and I asked about the oxycodone.
She stated that they could do that in a ibu/oxy mix, but its up to my doc. Im really not feeling the pain coverage with the phentanyl, and I dont like how it makes me feel if they up it.
Honestly, I told her too, that I feel it is a drug that is for a LOT higher pain scale than I have.
Im kind of bummed that I didnt get to talk to my doc at all about what I wanted to relay to him. He was on the other line when the nurse called back to connect me to him, and I know he is busy.
When i asked about d/c the patch and being BOTH on LA and SA hydro, he said there are other alternatives that can make it even MORE Long acting.
I didnt feel llike he even heard me say that Id tried the oxy IR, and that had been somewhat helpful.
I hate stuff like this...I hate always feeling that maybe I said something wrong, or that maybe he thinks Im asking for something specific. I was afraid to ask specificly for the oxy because I felt if I did he would think I was not trusting that he would take care of me. So now I guess Ill see what he and my pharmacist figure out tomorrow. Maybe it will be something altogether better, so Ill trust that they will help me out.
I just feel that the hydro isnt cutting it at all....and there has to be a middle ground between the hydro and the fentanyl.
I know at one point he told me the oxy is really hard to get off of, also the pharmacist told me that about the oxycontin, but if the phentanyl is stronger wouldnt that be worse? Im kind of freaked that the pharmacist mentioned during our conversation that she didnt know if the phentanyl was stronger than the oxy. yikes...
xoxoxox,
IZZY'SMOM
I verbatim read from Steve's paragraph...and also told him Id spoken to the compound pharmacist, since we are on really good terms, and told him the patch wasnt going to be an option for me this summer, I was fearing.
I could tell he was harried, he told me I could come for an appt, but we could do this over the phone. He asked for my CPharmacy number and said he would call tomorrow and then call me back.
I did call my pharmacist and told her to expect his call. Also she told me that there is gel phentanyl, and dissove under the tongue, and I asked about the oxycodone.
She stated that they could do that in a ibu/oxy mix, but its up to my doc. Im really not feeling the pain coverage with the phentanyl, and I dont like how it makes me feel if they up it.
Honestly, I told her too, that I feel it is a drug that is for a LOT higher pain scale than I have.
Im kind of bummed that I didnt get to talk to my doc at all about what I wanted to relay to him. He was on the other line when the nurse called back to connect me to him, and I know he is busy.
When i asked about d/c the patch and being BOTH on LA and SA hydro, he said there are other alternatives that can make it even MORE Long acting.
I didnt feel llike he even heard me say that Id tried the oxy IR, and that had been somewhat helpful.
I hate stuff like this...I hate always feeling that maybe I said something wrong, or that maybe he thinks Im asking for something specific. I was afraid to ask specificly for the oxy because I felt if I did he would think I was not trusting that he would take care of me. So now I guess Ill see what he and my pharmacist figure out tomorrow. Maybe it will be something altogether better, so Ill trust that they will help me out.
I just feel that the hydro isnt cutting it at all....and there has to be a middle ground between the hydro and the fentanyl.
I know at one point he told me the oxy is really hard to get off of, also the pharmacist told me that about the oxycontin, but if the phentanyl is stronger wouldnt that be worse? Im kind of freaked that the pharmacist mentioned during our conversation that she didnt know if the phentanyl was stronger than the oxy. yikes...
xoxoxox,
IZZY'SMOM
trowftd3
05-21-2008, 09:20 PM
I know at one point he told me the oxy is really hard to get off of, also the pharmacist told me that about the oxycontin, but if the phentanyl is stronger wouldnt that be worse? Im kind of freaked that the pharmacist mentioned during our conversation that she didnt know if the phentanyl was stronger than the oxy. yikes...
xoxoxox,
IZZY'SMOM
I think everyone is different when it comes to 'coming off' of a drug. It also depends on the taper. I think they're all difficult in one way or another.
I'd be freaked out too if about pharmacist didn't know that fentanyl is stronger than oxycodone. Hang in there and let us know what happens tomorrow.~M
xoxoxox,
IZZY'SMOM
I think everyone is different when it comes to 'coming off' of a drug. It also depends on the taper. I think they're all difficult in one way or another.
I'd be freaked out too if about pharmacist didn't know that fentanyl is stronger than oxycodone. Hang in there and let us know what happens tomorrow.~M
forginon
05-21-2008, 11:38 PM
Izzy,
I think things are going to be just fine. It's clear that your doc is 'on the case' and wants you to be comfortable.
I do wish you'd had the opportunity to speak with him w/o his being harried. I might have taken him up on that appt too, but hindsight is 20-20 right?
You're going to be fine.
I do have a suggestion. When he calls back be ready with a few items. Write down your average daily pain score over the last few weeks. Also, be ready with a number you wish the score had been (for example-your score has averaged a 6-7 and you'd really wish to live at a 5). This is whether you like his plan or not. Be prepared to request that he 'hear you out' for a minute, that you have something really important to share-and that if he's really busy at the time could he call you back at a better time or when could you call him back. This is where you need to address him like you would your caddy when he needs to listen up. If he cannot guarantee that, then I'd be tempted to make an appt.
When you do get to share your heart tell him about your score and that it's real important to you that he understand how critical it is to you to reach your target score. You might even ask him if he agrees if 5 is reasonable for decent quality of life? What doc worth their salt wouldn't agree with that?
Here's where it all comes together. Regardless of whether you like his offer or not, ask him 'if this approach doesn't get me to a daily average of 5 can we make adjustments or try something else until we get there? He has to know this is the whole point of your contacting him, and that you didn't get to explain it today. Again, of he's as compassionate as he seems he should say 'of course.'
The reason this is critical is because now you have his OK to continue to call and work with him until you're satisfied. So long as you get this assurance you're OK. Now, if things don't work, you can raise ideas like oxy that may not have flownthe first time.
This all will require some assertiveness on your part. I think it's time for that if you don't like how things progress tomorro, or even if you do - even if tomorrow's offer sounds good, only time will tell, and you'll probably be started at a low dose, so you need that assurance he's prepared to work with you over the next few weeks.
I sure hope this helps because I feel like I failed you earlier. Plus, and most importantly, I hope for much better pain relief.
steve
I think things are going to be just fine. It's clear that your doc is 'on the case' and wants you to be comfortable.
I do wish you'd had the opportunity to speak with him w/o his being harried. I might have taken him up on that appt too, but hindsight is 20-20 right?
You're going to be fine.
I do have a suggestion. When he calls back be ready with a few items. Write down your average daily pain score over the last few weeks. Also, be ready with a number you wish the score had been (for example-your score has averaged a 6-7 and you'd really wish to live at a 5). This is whether you like his plan or not. Be prepared to request that he 'hear you out' for a minute, that you have something really important to share-and that if he's really busy at the time could he call you back at a better time or when could you call him back. This is where you need to address him like you would your caddy when he needs to listen up. If he cannot guarantee that, then I'd be tempted to make an appt.
When you do get to share your heart tell him about your score and that it's real important to you that he understand how critical it is to you to reach your target score. You might even ask him if he agrees if 5 is reasonable for decent quality of life? What doc worth their salt wouldn't agree with that?
Here's where it all comes together. Regardless of whether you like his offer or not, ask him 'if this approach doesn't get me to a daily average of 5 can we make adjustments or try something else until we get there? He has to know this is the whole point of your contacting him, and that you didn't get to explain it today. Again, of he's as compassionate as he seems he should say 'of course.'
The reason this is critical is because now you have his OK to continue to call and work with him until you're satisfied. So long as you get this assurance you're OK. Now, if things don't work, you can raise ideas like oxy that may not have flownthe first time.
This all will require some assertiveness on your part. I think it's time for that if you don't like how things progress tomorro, or even if you do - even if tomorrow's offer sounds good, only time will tell, and you'll probably be started at a low dose, so you need that assurance he's prepared to work with you over the next few weeks.
I sure hope this helps because I feel like I failed you earlier. Plus, and most importantly, I hope for much better pain relief.
steve
Boxerluver
05-21-2008, 11:44 PM
Izzy, I'm glad you are able to talk to your doc, I have mine's cell phone number as well, but only for an emergency. I decided a long time ago after a terrible mishap when I left a message at the front desk that then went to a nurse and then the doc, and by then it was out of context. I actually drove to the office to get it straightened out and the doc was totally mis-informed. I wish I could call my doc's cell about a med change, but I wait for my appointment. Like yours, mine is so busy, I think he's probably doing 50 other things and not listening to me fully.
I'll be curious to see what he comes up with, I'm sorry your patch doesn't stay on in summer, I live in Florida and mine stay on fine. It always amazes me how we are all so different. I hope he changes it for you.
Melissa
I'll be curious to see what he comes up with, I'm sorry your patch doesn't stay on in summer, I live in Florida and mine stay on fine. It always amazes me how we are all so different. I hope he changes it for you.
Melissa
IZZY'SMOM
05-21-2008, 11:49 PM
Re: Need Advice About Changing Meds~
aussiejono wrote...
"Why the insistance on a compounded med?" You asked me already on another thread...
Steve is right when he replied...
"I think the compounding gives you more options than most folks and it seems to suit you fine for relief and financially."
~Steve
So Ill answer again, my response from another thread...
"As far as the "insistance" of compounded meds...they work better and thats what I choose. I can pay for 240 vicoprofen at 560.00 per month or I can get 10mg of hydro compounded 240 at 96.00 per month. you do the math~ Pluse the LA hydro...same thing. Thats one reason I use the compounded meds."
They work better for me, period...
I hope this clears it up for you. Youve asked me twice, sorry but I thought Id answered this before. Strictly preference. Have you ever used compound meds? I know you wrote your sister is a pharmacist? Maybe she can fill you in on why a lot of ppl are turning to them.
IZZY'MOM
aussiejono wrote...
"Why the insistance on a compounded med?" You asked me already on another thread...
Steve is right when he replied...
"I think the compounding gives you more options than most folks and it seems to suit you fine for relief and financially."
~Steve
So Ill answer again, my response from another thread...
"As far as the "insistance" of compounded meds...they work better and thats what I choose. I can pay for 240 vicoprofen at 560.00 per month or I can get 10mg of hydro compounded 240 at 96.00 per month. you do the math~ Pluse the LA hydro...same thing. Thats one reason I use the compounded meds."
They work better for me, period...
I hope this clears it up for you. Youve asked me twice, sorry but I thought Id answered this before. Strictly preference. Have you ever used compound meds? I know you wrote your sister is a pharmacist? Maybe she can fill you in on why a lot of ppl are turning to them.
IZZY'MOM
forginon
05-21-2008, 11:57 PM
Mush,
Sure, I'll travel for the cause. In reality, I think your brief encouragement to Izzy was more helpful than anything in the novel I wrote. And my ideas got her nowhere. Your thoughts on quality of life were perfect, and I used that in my second novel.
I sure hope we can get her the relief she needs.
I also wish we could help her be less anxious. Just from her posts it's clear she has superior comm skills all on her own. She's got the whole package. I hate it when friends are fearful. But this stuff is so very important in our lives that it tends to cause lots of anxiety. I used to spend sleepless nights going over speeches in my head, editing all the while. Then I'd turn on the light and write things down. Then reprocess it all over again. But when I'd get to my appts things would go just fine. So I guess it took me 52 years to finally trust myself to handle things when it got to be crunch time. But what works for me isn't always best for the next person.
So, sure, I'll take my show on the road. However, I think each of us has what it takes to effectively comm w/docs, It's the confidence that's lacking. That's hard to provide in a forum post. I wish it would always work like it did for Juliet today. Now I'm rambling. My legs hurt so bad tonight. I think I'll try to see if sleeping will distract me.
steve
steve
Sure, I'll travel for the cause. In reality, I think your brief encouragement to Izzy was more helpful than anything in the novel I wrote. And my ideas got her nowhere. Your thoughts on quality of life were perfect, and I used that in my second novel.
I sure hope we can get her the relief she needs.
I also wish we could help her be less anxious. Just from her posts it's clear she has superior comm skills all on her own. She's got the whole package. I hate it when friends are fearful. But this stuff is so very important in our lives that it tends to cause lots of anxiety. I used to spend sleepless nights going over speeches in my head, editing all the while. Then I'd turn on the light and write things down. Then reprocess it all over again. But when I'd get to my appts things would go just fine. So I guess it took me 52 years to finally trust myself to handle things when it got to be crunch time. But what works for me isn't always best for the next person.
So, sure, I'll take my show on the road. However, I think each of us has what it takes to effectively comm w/docs, It's the confidence that's lacking. That's hard to provide in a forum post. I wish it would always work like it did for Juliet today. Now I'm rambling. My legs hurt so bad tonight. I think I'll try to see if sleeping will distract me.
steve
steve
aussiejono
05-21-2008, 11:59 PM
Thats amazing... how can the drug companies justify those prices?
I wasnt trying to be rude, just wondered if you were allergic to the run of the mill factory made meds, of didnt find thm effective, or some other reason.
cheers
J
I wasnt trying to be rude, just wondered if you were allergic to the run of the mill factory made meds, of didnt find thm effective, or some other reason.
cheers
J
IZZY'SMOM
05-21-2008, 11:59 PM
Steve and Melissa~
Thx for the great suggestions and support. Im really stressed right now, and just having you get to the point and help me tonight is axactly what I am needing.
I need to get to bed, and Ill get back on in the morning and re- read all of the great suggestions from everyone.
Thank you again~
xoxoxox,
IZZY'SMOM
p.s. Steve? why would you ever think that youve let me down? Stop that, or Ill have to give you a good smack down!~ You know I adore you, and you are always so positive and knowledgable. Thank you for always keeping me positive and helping me out. Anyone who is positive and helps me thru a stressful time is always a huge asset. I consider you one of the ones who always knows me best.
Sorry, but Im really hurting these lst couple of days, and Im not very patient.
Thx for the great suggestions and support. Im really stressed right now, and just having you get to the point and help me tonight is axactly what I am needing.
I need to get to bed, and Ill get back on in the morning and re- read all of the great suggestions from everyone.
Thank you again~
xoxoxox,
IZZY'SMOM
p.s. Steve? why would you ever think that youve let me down? Stop that, or Ill have to give you a good smack down!~ You know I adore you, and you are always so positive and knowledgable. Thank you for always keeping me positive and helping me out. Anyone who is positive and helps me thru a stressful time is always a huge asset. I consider you one of the ones who always knows me best.
Sorry, but Im really hurting these lst couple of days, and Im not very patient.
forginon
05-22-2008, 12:54 AM
Izzy,
No need to explain about patience. Pain does this to all of us, and we all understand.
I even got short with my wife this evening because of how badly my legs are hurting. Talk about feeling like a low life. Even though all I did was ask for some alone time because of pain, no raised voice, just impatient, that kind of behavior makes me feel awful. Totally unscceptable! I'll do something special for her this weekend to make up for it.
As a matter of fact I don't think my knees have ever hurt this much except post op. This is one of those times I wish I still had the Actiq lollipops for BT pain. I can hardly walk.
Back to you, Izzy. I hope you get some real good rest. Tomorrow's another day - and I definitely think it'll be a very good day for you. :)
steve
No need to explain about patience. Pain does this to all of us, and we all understand.
I even got short with my wife this evening because of how badly my legs are hurting. Talk about feeling like a low life. Even though all I did was ask for some alone time because of pain, no raised voice, just impatient, that kind of behavior makes me feel awful. Totally unscceptable! I'll do something special for her this weekend to make up for it.
As a matter of fact I don't think my knees have ever hurt this much except post op. This is one of those times I wish I still had the Actiq lollipops for BT pain. I can hardly walk.
Back to you, Izzy. I hope you get some real good rest. Tomorrow's another day - and I definitely think it'll be a very good day for you. :)
steve
aussiejono
05-22-2008, 01:05 AM
Reading these stories makes me realise that I am not badly off at all - my pain is reasonably well controled most days, I dont have too many hastles getting my drugs, and the costs are ebarable.
Soem days i feel sorry for my self, thinking "why me, why cant I be normal", but then i think of how dire some peoples circumstances are, and think "harden up princess, your situation is nothing"
Izzys mom - do you find sleeping tablets help you sleep when you are in pain?
I find that a dose of breakthrough drun and a Mogadon helps me a lot more than an analgesic alone.
Soem days i feel sorry for my self, thinking "why me, why cant I be normal", but then i think of how dire some peoples circumstances are, and think "harden up princess, your situation is nothing"
Izzys mom - do you find sleeping tablets help you sleep when you are in pain?
I find that a dose of breakthrough drun and a Mogadon helps me a lot more than an analgesic alone.
cmpgirl
05-22-2008, 01:27 AM
Izz, You've already been given some great suggestions, but I just wanted to add a little something. Years ago, when I started with my current PM doc, He asked me what my expectation of him was.
I was just flat out honest with him and told him I knew I would probably never be pain free, but there were certain things in my life that were important to me and I wanted to be able to do those things with his help.
About a year later, he actually thanked me at one of my appointments, for being honest with him about my expectations and working together with him to accomplish that.
I think you have established this with your doc over the time you have been his patient, and I have faith that he will work with you to get you where you need to be. I think you've earned his trust and respect as much as he's earned yours.
So, I just wanted to say good luck. I don't think you're going to need much extra though. I know you'll do just fine. Let us know, OK? Hugs, CMP/MM
I was just flat out honest with him and told him I knew I would probably never be pain free, but there were certain things in my life that were important to me and I wanted to be able to do those things with his help.
About a year later, he actually thanked me at one of my appointments, for being honest with him about my expectations and working together with him to accomplish that.
I think you have established this with your doc over the time you have been his patient, and I have faith that he will work with you to get you where you need to be. I think you've earned his trust and respect as much as he's earned yours.
So, I just wanted to say good luck. I don't think you're going to need much extra though. I know you'll do just fine. Let us know, OK? Hugs, CMP/MM
trowftd3
05-22-2008, 01:55 PM
Steve,
Thanks for the compliments. I know the fear...I go through it every month when it's time to call my doc. I'm stressed(and impatient and ergo in more pain) today because I'm calling my doc tomorrow.
Is everything ok with you? It worries me that you're experiencing more pain?
Could things be getting worse or is it just a bad week for you? I know I just have random days where the pain is just way out there for no good reason. No fun at all!! Take care!
Izzy,
How are you today? What's the scoop??~Mush
Thanks for the compliments. I know the fear...I go through it every month when it's time to call my doc. I'm stressed(and impatient and ergo in more pain) today because I'm calling my doc tomorrow.
Is everything ok with you? It worries me that you're experiencing more pain?
Could things be getting worse or is it just a bad week for you? I know I just have random days where the pain is just way out there for no good reason. No fun at all!! Take care!
Izzy,
How are you today? What's the scoop??~Mush
forginon
05-22-2008, 07:56 PM
Mush,
Thanks for asking.
I'm not really sure why the extra pain. I've got a few things going on and it's very hard to tell which one is the culprit.
First, I've got osteosrthritis and I work out hard. My knees are broken down, and activity causes pain. I know that, and I accept that.
Second, the Testosterone replacement therapy I started since they found my brain tumor has begun to make me stronger and quicker. This, in turn, is really augmenting my workouts. Which is that much harder on my knees.
Third is the new cholesterol med. This med comes with a warning about muscle pain, because there's a nasty side effect that causes muscle damage, which obviously includes the heart. I've had loads of muscle pain since starting this med, and my doc knows about it. However, when I take into account the issues above, I really can't tell if the pain is because of the increased activity or the cholesterol med. How can you know? My doc said a few weeks ago that if my muscle pain got worse we needed to change the cholesterol med. Well, it is worse, but why?
Bottom line - I'm in a lot more pain. Sleeping is so hard with this pain. I see both the endocrinologist and my GP tomorrow and I'll tell both how it's going. I will be asking my GP to slightly raise my LA med dose at night time, which my PM doc agrees with. Hopefully this will help. maybe we'll also try a new cholesterol med. I just want less pain. Don't we all.
Again, thanks for asking.:)
steve
Thanks for asking.
I'm not really sure why the extra pain. I've got a few things going on and it's very hard to tell which one is the culprit.
First, I've got osteosrthritis and I work out hard. My knees are broken down, and activity causes pain. I know that, and I accept that.
Second, the Testosterone replacement therapy I started since they found my brain tumor has begun to make me stronger and quicker. This, in turn, is really augmenting my workouts. Which is that much harder on my knees.
Third is the new cholesterol med. This med comes with a warning about muscle pain, because there's a nasty side effect that causes muscle damage, which obviously includes the heart. I've had loads of muscle pain since starting this med, and my doc knows about it. However, when I take into account the issues above, I really can't tell if the pain is because of the increased activity or the cholesterol med. How can you know? My doc said a few weeks ago that if my muscle pain got worse we needed to change the cholesterol med. Well, it is worse, but why?
Bottom line - I'm in a lot more pain. Sleeping is so hard with this pain. I see both the endocrinologist and my GP tomorrow and I'll tell both how it's going. I will be asking my GP to slightly raise my LA med dose at night time, which my PM doc agrees with. Hopefully this will help. maybe we'll also try a new cholesterol med. I just want less pain. Don't we all.
Again, thanks for asking.:)
steve
IZZY'SMOM
05-22-2008, 08:04 PM
Hi guys~
Havent heard anything today, but when I do Ill be sure to post.
I take 1 tab of trazadone at night for sleep. 350 mg. that is my Godsend~ Sorry, I have no time to answer many posts tonight, maybe I can catch up later. Hope everyone is doing well~
xoxoxoxo,
IZZY'SMOM
Havent heard anything today, but when I do Ill be sure to post.
I take 1 tab of trazadone at night for sleep. 350 mg. that is my Godsend~ Sorry, I have no time to answer many posts tonight, maybe I can catch up later. Hope everyone is doing well~
xoxoxoxo,
IZZY'SMOM
aussiejono
05-22-2008, 08:16 PM
Re the muscle pain and your cholesterol med..... try taking Coenzyme Q10, 100mg per day..... statins reduce CoQ10 production as well as reducing cholestrol production, the supplement could well be the answer!
trowftd3
05-22-2008, 08:24 PM
Steve,
I don't mean to state the obvious but...is there a chance that you could ease up on the workouts?
I know they are a great help especially mentally. Maybe it would only take a week or two to pinpoint whether the pain was coming from the increase workouts. I know that 8 times out of 10 when I'm having a pretty good day and I head off to the gym I will over do it....guarenteed. Just because it feels so good to actually be able to work out without feeling like I'm going to die!!!
Good luck at the docs tomorrow.
Izz, Thanks for checking in...let us know when you have a chance!~Mush
I don't mean to state the obvious but...is there a chance that you could ease up on the workouts?
I know they are a great help especially mentally. Maybe it would only take a week or two to pinpoint whether the pain was coming from the increase workouts. I know that 8 times out of 10 when I'm having a pretty good day and I head off to the gym I will over do it....guarenteed. Just because it feels so good to actually be able to work out without feeling like I'm going to die!!!
Good luck at the docs tomorrow.
Izz, Thanks for checking in...let us know when you have a chance!~Mush
forginon
05-23-2008, 12:18 PM
Mush,
Exactly what I've been thinking.
I may start taking a day off, like workout every other day or something like that. I just do not want to have to stop altogether, so I'll do whatever it takes.
I SO appreciate your thinking of me.:)
Suggestions are always welcome.
We think a lot alike.
steve
Exactly what I've been thinking.
I may start taking a day off, like workout every other day or something like that. I just do not want to have to stop altogether, so I'll do whatever it takes.
I SO appreciate your thinking of me.:)
Suggestions are always welcome.
We think a lot alike.
steve
trowftd3
05-24-2008, 05:54 AM
Good plan. I think this will help you find the answer.
I hate it when I miss a week at the gym. Even though I'm not lifting huge amounts or doing much cardio(that's the killer for me...have a hard enough time breathing...can only walk on the treadmill...at a leisurely pace) I feel like I'm completely starting from scratch and I hate it!:(
We do think a lot alike.:)
Maybe our tag team approach will help Izzy'smom with her latest issues.
Can we get matching wrestling boots??? Yours with magic insoles that will take away your pain while letting you kick ^$&*(that's a 4 letter word that starts with a b...not the 3 letter word that starts with an a....just have to clarify)
It's late. I need to sleep. Hope for painless sleep.~Mush
I hate it when I miss a week at the gym. Even though I'm not lifting huge amounts or doing much cardio(that's the killer for me...have a hard enough time breathing...can only walk on the treadmill...at a leisurely pace) I feel like I'm completely starting from scratch and I hate it!:(
We do think a lot alike.:)
Maybe our tag team approach will help Izzy'smom with her latest issues.
Can we get matching wrestling boots??? Yours with magic insoles that will take away your pain while letting you kick ^$&*(that's a 4 letter word that starts with a b...not the 3 letter word that starts with an a....just have to clarify)
It's late. I need to sleep. Hope for painless sleep.~Mush
burpee
05-26-2008, 10:38 AM
This thread kind of switched gears. I thought it was about asking the doctor for a change of pain meds - but then it changes to how much pain you may take on from working out.
My question has to do with understanding whether I am supposed to accept pain from "daily activities" or working out or both.
My situation has to do with pain from herniating a disc two months ago. I'm taking Gabapentin and Vicodin, I have Flexeril as well, but don't take it much because it makes me "cloudy."
Anyway, there's no telling how much I'll hurt each day until I "start living." The one thing I do know, If I sit at a computer, or sit around, I'm fine. If I try to walk, or do anything, I'm in for pain.
I want to cut back to as little pain meds as possible. And I can if don't do anything.
My question: How do I know whether I should try stronger meds so I can go about living? (Or take more Vicodin and Gabapentin?)
Or am I supposed to accept my inability to do much? The reason I put these questions in this thread is because I used to be a runner and a cyclist, and now I can't run at all, and even if I do a cycle/trainer workout - I usually "pay-painfully for it) then next day.
Am I supposed to tell my doctor I want strong enough drugs to workout and live actively? Or am I supposed to realize my limitations and reduce activity to a med-free life?
Sorry about rambling on. If there are other threads about how to balance meds and activity please let me know. I'm going to email my doctor this week.
My question has to do with understanding whether I am supposed to accept pain from "daily activities" or working out or both.
My situation has to do with pain from herniating a disc two months ago. I'm taking Gabapentin and Vicodin, I have Flexeril as well, but don't take it much because it makes me "cloudy."
Anyway, there's no telling how much I'll hurt each day until I "start living." The one thing I do know, If I sit at a computer, or sit around, I'm fine. If I try to walk, or do anything, I'm in for pain.
I want to cut back to as little pain meds as possible. And I can if don't do anything.
My question: How do I know whether I should try stronger meds so I can go about living? (Or take more Vicodin and Gabapentin?)
Or am I supposed to accept my inability to do much? The reason I put these questions in this thread is because I used to be a runner and a cyclist, and now I can't run at all, and even if I do a cycle/trainer workout - I usually "pay-painfully for it) then next day.
Am I supposed to tell my doctor I want strong enough drugs to workout and live actively? Or am I supposed to realize my limitations and reduce activity to a med-free life?
Sorry about rambling on. If there are other threads about how to balance meds and activity please let me know. I'm going to email my doctor this week.
forginon
05-26-2008, 05:57 PM
...Am I supposed to tell my doctor I want strong enough drugs to workout and live actively? Or am I supposed to realize my limitations and reduce activity to a med-free life...
Great question,
Most docs treating for pain want to see an improvement in the patient's functionality. Their goal is not to create couch potatoes. From everything I've read, and from my experience with PM, the goal of pain management is to enable the patient to have an acceptable quality of life and to improve or return some level of functionality. I've read about docs who discontinued opioid treatment if patients remain bedridden or become essentially couch potatoes.
In my case - A few months ago I approached my doc about becoming more active, and playing a little of a sport I enjoy. He was thrilled, to say the least. I said that I would need an increase in pain meds in order to do it. I essentially said if he would increase my breakthrough med dose I could take some about 30 minutes before working out or playing, and then another dose right afterward - I felt this would cover the added pain. He agreed. So I started the new regimen and have been on it ever since. Actually, my pain level has gone up even with the added BT doses, but I'm willing to live with it. The added level of activity has done wonders for how I feel in general, and has helped with weight loss, so I'll gladly endure more pain. I did not consider asking for another increase in dose because I felt that I could control it myself by just backing off on the activity, so it was controllable without meds - but I so liked the workouts/sports that I wanted to continue.
I hope this helps.
steve
Great question,
Most docs treating for pain want to see an improvement in the patient's functionality. Their goal is not to create couch potatoes. From everything I've read, and from my experience with PM, the goal of pain management is to enable the patient to have an acceptable quality of life and to improve or return some level of functionality. I've read about docs who discontinued opioid treatment if patients remain bedridden or become essentially couch potatoes.
In my case - A few months ago I approached my doc about becoming more active, and playing a little of a sport I enjoy. He was thrilled, to say the least. I said that I would need an increase in pain meds in order to do it. I essentially said if he would increase my breakthrough med dose I could take some about 30 minutes before working out or playing, and then another dose right afterward - I felt this would cover the added pain. He agreed. So I started the new regimen and have been on it ever since. Actually, my pain level has gone up even with the added BT doses, but I'm willing to live with it. The added level of activity has done wonders for how I feel in general, and has helped with weight loss, so I'll gladly endure more pain. I did not consider asking for another increase in dose because I felt that I could control it myself by just backing off on the activity, so it was controllable without meds - but I so liked the workouts/sports that I wanted to continue.
I hope this helps.
steve
burpee
05-26-2008, 08:44 PM
Thanks Justec - your answer gave me ideas for my doctors visit. But, it also begs the question in deciding what "normal activity" is.
I'm already resigned to no longer racing, but I formerly had the capacity to run marathons and ride 100+ mile bicycle-rides. How and who decides what level of activity/medication is realistic?
Currently, I've already discovered what "overdoing it" is. I can no longer walk any distance at all - so far .3 mile causes problems. However, I can max out my heart rate for an hour on a bicycle...
I can't figure out how much pain to endure. Nor do I know whether I am speeding or delaying any healing. I feel screwed.
I've popped more pills in the last 2 months, than the last 20 years.
I'm already resigned to no longer racing, but I formerly had the capacity to run marathons and ride 100+ mile bicycle-rides. How and who decides what level of activity/medication is realistic?
Currently, I've already discovered what "overdoing it" is. I can no longer walk any distance at all - so far .3 mile causes problems. However, I can max out my heart rate for an hour on a bicycle...
I can't figure out how much pain to endure. Nor do I know whether I am speeding or delaying any healing. I feel screwed.
I've popped more pills in the last 2 months, than the last 20 years.
IZZY'SMOM
05-26-2008, 08:47 PM
Burpee~
I feel in the same boat. Before pro golf, I was a sponsored athlete in rock and ice climbing since 1986. So I think being an athlete is a whole other ball of wax in PM. If it were the concept of...{drug me up so I can continue to be the best all of the time} Id be on so much stuff I couldnt even function.
All Im trying to do is to live my life, and I know Ill never be as active as I was. But then there are ppl who cant even get out of bed, so its really hard. Im sure there are ppl that think Im a whiny **** and that I should be happy for what I have. But I also support my family, pretty much 99.9%
xoxoxox,
IZZY'SMOM
I feel in the same boat. Before pro golf, I was a sponsored athlete in rock and ice climbing since 1986. So I think being an athlete is a whole other ball of wax in PM. If it were the concept of...{drug me up so I can continue to be the best all of the time} Id be on so much stuff I couldnt even function.
All Im trying to do is to live my life, and I know Ill never be as active as I was. But then there are ppl who cant even get out of bed, so its really hard. Im sure there are ppl that think Im a whiny **** and that I should be happy for what I have. But I also support my family, pretty much 99.9%
xoxoxox,
IZZY'SMOM
forginon
05-27-2008, 04:05 PM
...But, it also begs the question in deciding what "normal activity" is...
...I can't figure out how much pain to endure. Nor do I know whether I am speeding or delaying any healing. I feel screwed...
I can't really help with "normal." In fact, I'm a bit confused with what you're getting at (sorry - gettin' old).
However, I still think I can help.
For me, it was going from essentially nothing to something. I "was" a couch potato. Even that hurt, because I'd sit for a bit and then get up for something and the pain would be awful. It would take quite some time to work it out to the point that I could move w/o limping really badly. Go do my business and then back to the couch. After losing 56 pounds during a battle with heart failure I really felt energized. And, I believed I could return to activity (play my table tennis) if I was careful. So I just decided to meet with the guys and practice a little each day. Just a few minutes, maybe 10, playing a bit of forehand and backhand and that's it. It was hard at first, but I got the hang of it and slowly built up some endurance. It hurt like crazy, but put a bat in my hand a place me in front of a TT table with a ball and an opponent and the rest of the world, including pain, just melts away. Until I stop. Then, WOW. But as I wrote before, I had taken a dose of BT meds beforehand, and would take one afterwards as well. I kept at it, playing only on weekdays and resting on weekends, and slowly built up my strength and endurance. Now I'm playing for about an hour and a half each weekday, and still resting on weekends. It's terribly painful, but there's no way I could stop.
What about you? Just select something you enjoy - anything. And then decide to do it just a little. Just a few minutes. Whatever you can handle. As far as deciding how much pain to endure - I decided that if my playing, or the time afterward, took me to a 7, but no more, then that was OK. It would slowly subside after resting and I'd return to a 5 or 6, which is my average. So whatever you select, decide beforehand how high you'll allow your pain to get, and have a plan to cover your pain with meds. My doc thought it was a great idea to take a dose of BT meds one half hour before playing, and immediately after stopping. You might consider something similar.
I hope this helps at least a little.
steve
...I can't figure out how much pain to endure. Nor do I know whether I am speeding or delaying any healing. I feel screwed...
I can't really help with "normal." In fact, I'm a bit confused with what you're getting at (sorry - gettin' old).
However, I still think I can help.
For me, it was going from essentially nothing to something. I "was" a couch potato. Even that hurt, because I'd sit for a bit and then get up for something and the pain would be awful. It would take quite some time to work it out to the point that I could move w/o limping really badly. Go do my business and then back to the couch. After losing 56 pounds during a battle with heart failure I really felt energized. And, I believed I could return to activity (play my table tennis) if I was careful. So I just decided to meet with the guys and practice a little each day. Just a few minutes, maybe 10, playing a bit of forehand and backhand and that's it. It was hard at first, but I got the hang of it and slowly built up some endurance. It hurt like crazy, but put a bat in my hand a place me in front of a TT table with a ball and an opponent and the rest of the world, including pain, just melts away. Until I stop. Then, WOW. But as I wrote before, I had taken a dose of BT meds beforehand, and would take one afterwards as well. I kept at it, playing only on weekdays and resting on weekends, and slowly built up my strength and endurance. Now I'm playing for about an hour and a half each weekday, and still resting on weekends. It's terribly painful, but there's no way I could stop.
What about you? Just select something you enjoy - anything. And then decide to do it just a little. Just a few minutes. Whatever you can handle. As far as deciding how much pain to endure - I decided that if my playing, or the time afterward, took me to a 7, but no more, then that was OK. It would slowly subside after resting and I'd return to a 5 or 6, which is my average. So whatever you select, decide beforehand how high you'll allow your pain to get, and have a plan to cover your pain with meds. My doc thought it was a great idea to take a dose of BT meds one half hour before playing, and immediately after stopping. You might consider something similar.
I hope this helps at least a little.
steve
aussiejono
05-27-2008, 09:44 PM
I find my pain actualy gets better with some activity.... both because the movement helps to "free things up", and also I have somthing to distract me from the pain, rather than it being my whole focus, if i stay in bed for example. Its just hard to summon the motivation th spend the firat half an hour making my self do it until i start to feel the benifit. A dose of BT drug, a strong mug of coffee, and a hot shower help.
Administrator
05-28-2008, 01:08 AM
closed:
became off the thread originator's subject.
became off the thread originator's subject.