I have a question I would like to ask anyone who has experience with this sort of topic.
Tomorrow I am preparing for an office visit with my local oncologist, which will be my first appointment after meeting with my main doctor last week. My main doctor is a little less than two hours away maybe. In that appointment I left with a lot of information as well as some surprises as well.
One thing was apparent which is I have been ignoring pretty much all medical issues that I have been having. Being 28, I have always written things off to other things. One of the major things discovered was the fact that I have 5 fractured / compressed vertabre in my back. Other issues will seem to get better the further along in treatment I get, but the bones I am being referred to a back guy to see if anything can be done.
Heading into this, I am already at a max dose of gabapentin. On top of that I would take a cocktail of over the counter meds. None of which really helped. This particular issue I never brought up because I am in recovery, and have been for the past 3 years. Now, working or not, what I am able to take has been limited. In fact, I was told I am not allowed to take anything and to handle this the approach is opioid pain medicine.
All of my doctors know I am in recovery and of course I turned down anything at that appointment. I have talked with family and others and going with a medicine that will offer relief and a general better quality of life until I can see the specialist is the best choice.
How can I talk about it with my doctor tomorrow, who is a different doctor? Both doctors work together. I am just afraid of being labeled or judged, which is why I never seek out treatment for anything, ever. The myeloma discovery was an accident more or less.
But it feels good to know there is a reason and help available, so needlessly suffering does not seem like the best choice I can make right now.
If anyone has been there or has any advice I would appreciate it, thanks!
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rustedashes - Name: Eric
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 18, 2014 (Officially)
- Age at diagnosis: 28
Re: Talking with doctor about pain symptoms
Rustedashes:
I am not sure if I follow you completely, so let me know if I got this right.
You are in recovery - alcohol and or drug recovery for the past three years? And because of this you have avoided any opioids? However you have several fractured vertebrae and, presumably, you are still in quite a bit of pain?
If I have this correct, here are some thoughts I have.
First, I do not know your complete health issues so it is difficult to advise. However, I too am in recovery, thank the Lord, for a number of years. It is different for everyone. However, when I delivered my twins through an emergency C-section, my sponsor told me to take the drugs - meaning morphine and then Vicodin after the surgery. It would have been difficult if not impossible to get through it otherwise.
Absolutely positively tell your physicians of your concerns about taking opioids, but also tell them that your current pain treatment is not sufficient. I take gapapentin for fibromyalgia pain, but I know there is no way it would treat bone fracture pain.
to my knowledge, there are many newer pain medications that may work. You may need to experiment, but do so only under the direction and guidance of a physician. You may want to ask about seeking a specialist who can help you with that specifically.
Do not be afraid of being labeled or judged. People in the medical field and most people on these forums know how bad your pain is. I am sure the medical professionals will do their best to help you get relief without over prescribing something.
Wishing you all the best.
I am not sure if I follow you completely, so let me know if I got this right.
You are in recovery - alcohol and or drug recovery for the past three years? And because of this you have avoided any opioids? However you have several fractured vertebrae and, presumably, you are still in quite a bit of pain?
If I have this correct, here are some thoughts I have.
First, I do not know your complete health issues so it is difficult to advise. However, I too am in recovery, thank the Lord, for a number of years. It is different for everyone. However, when I delivered my twins through an emergency C-section, my sponsor told me to take the drugs - meaning morphine and then Vicodin after the surgery. It would have been difficult if not impossible to get through it otherwise.
Absolutely positively tell your physicians of your concerns about taking opioids, but also tell them that your current pain treatment is not sufficient. I take gapapentin for fibromyalgia pain, but I know there is no way it would treat bone fracture pain.
to my knowledge, there are many newer pain medications that may work. You may need to experiment, but do so only under the direction and guidance of a physician. You may want to ask about seeking a specialist who can help you with that specifically.
Do not be afraid of being labeled or judged. People in the medical field and most people on these forums know how bad your pain is. I am sure the medical professionals will do their best to help you get relief without over prescribing something.
Wishing you all the best.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Talking with doctor about pain symptoms
I'm 27 years sober and have learned that many doctors do NOT have experience with recovery issues.
When I've needed pain relief, I've taken it. But my husband 'dispenses' for me, or I am accountable to him when he's not around. I can take what I need, but just that extra step of having my husband involved means I'm less likely to slip.
If you feel your doctors are not either aware of how to handle pain relief for 12-step patients, or if they are afraid to prescribe you the best medication because you're in recovery, bring your point person with you to the appointment.
What's interesting is that while my husband has been on opiates for the myeloma pain, I have no interest at all in it. That's his, and I handle his medications, but it doesn't call to me at all.
Cheers,
Lisa
When I've needed pain relief, I've taken it. But my husband 'dispenses' for me, or I am accountable to him when he's not around. I can take what I need, but just that extra step of having my husband involved means I'm less likely to slip.
If you feel your doctors are not either aware of how to handle pain relief for 12-step patients, or if they are afraid to prescribe you the best medication because you're in recovery, bring your point person with you to the appointment.
What's interesting is that while my husband has been on opiates for the myeloma pain, I have no interest at all in it. That's his, and I handle his medications, but it doesn't call to me at all.
Cheers,
Lisa
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Talking with doctor about pain symptoms
Take the damn meds ( As prescribed)--and stay ahead of the / your pain. If they don't hold your pain, contact your MD and modify your 'Scrip / dosage. Tell your MD's (both) about your concerns.
If 2700 Mg of Gabapentin daily is not holding your pain/ function--then SPEAK up! NOW !
If you do not--I believe you will put yourself at an even GREATER Risk of relapse.
12 Step programs are really stupid when it comes to meds / pain MGT, for a legitimate chronic illness/ chronic pain(s). Back injuries and compression Fx's are high on the list for pain producing / creating functional impairments.
Sober and clean--but completely disabled and dysfunctional at 28 ??? You can be sober and still take Rx Meds. I know many who do.
I am not upset with you---I'm upset with the idiot who put that crap notion in your head.
Ask for, and take the meds, to help you acheive a quality of life, Please.
Good luck.
If 2700 Mg of Gabapentin daily is not holding your pain/ function--then SPEAK up! NOW !
If you do not--I believe you will put yourself at an even GREATER Risk of relapse.
12 Step programs are really stupid when it comes to meds / pain MGT, for a legitimate chronic illness/ chronic pain(s). Back injuries and compression Fx's are high on the list for pain producing / creating functional impairments.
Sober and clean--but completely disabled and dysfunctional at 28 ??? You can be sober and still take Rx Meds. I know many who do.
I am not upset with you---I'm upset with the idiot who put that crap notion in your head.
Ask for, and take the meds, to help you acheive a quality of life, Please.
Good luck.
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Rneb
Re: Talking with doctor about pain symptoms
I agree that some 12-step programs have twisted this issue around to suit their needs. I really believe that they are there to help people get over drug (alcohol) addiction, but that they are treating everything the same, which it isn't.
I have 25 years of sobriety and was always amazed when people at meetings would come down on me for taking either painkillers ... or chemo! I simply asked them for their qualifications and it normally shut them up.
I've had 10 vertebrae fused and at the time refused morphine because of this belief that I would get addicted. Looking back on it, I would take the morphine today! Today, I use medical marijuana as a pain relief and I don't really care what others think about it. It's not their body.
I think their intentions are noble, but they've lost sight of the reality!
Gary
I have 25 years of sobriety and was always amazed when people at meetings would come down on me for taking either painkillers ... or chemo! I simply asked them for their qualifications and it normally shut them up.
I've had 10 vertebrae fused and at the time refused morphine because of this belief that I would get addicted. Looking back on it, I would take the morphine today! Today, I use medical marijuana as a pain relief and I don't really care what others think about it. It's not their body.
I think their intentions are noble, but they've lost sight of the reality!
Gary
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GKH
Re: Talking with doctor about pain symptoms
First, I would like to thank everyone who took the time to respond. I appreciate it and everything everyone had to say really helped. I was not able to respond before my appointment but I was able to read what everyone had to say and their experience. It is awesome to know others on here are also in recovery from whatever it may have been for them.
I never go to my appointments alone and I always make those who are not aware already, aware of my participation in a 12 step program. That being said, I was able to bring the issue up and the doctor fully understood. So my fears in that area were my own imagination and my medicines have changed to allow for proper management of symptoms caused by the myeloma, including pain.
I just need to learn to be more open and speak up, which I think someone hinted at in one of their responses. The myeloma has changed the way I need to look at and approach things and live my life in general. Honestly, I think its a good thing though. I think talking and being open will become easier as time goes on and fears I have about certain things will go away. Everyone here is going through what I am, so it's good to know there is a place I can always turn to to talk or read about things.
Once again, I do appreciate everyone responding because it surely helped a bunch! Thanks!
I never go to my appointments alone and I always make those who are not aware already, aware of my participation in a 12 step program. That being said, I was able to bring the issue up and the doctor fully understood. So my fears in that area were my own imagination and my medicines have changed to allow for proper management of symptoms caused by the myeloma, including pain.
I just need to learn to be more open and speak up, which I think someone hinted at in one of their responses. The myeloma has changed the way I need to look at and approach things and live my life in general. Honestly, I think its a good thing though. I think talking and being open will become easier as time goes on and fears I have about certain things will go away. Everyone here is going through what I am, so it's good to know there is a place I can always turn to to talk or read about things.
Once again, I do appreciate everyone responding because it surely helped a bunch! Thanks!
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rustedashes - Name: Eric
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 18, 2014 (Officially)
- Age at diagnosis: 28
Re: Talking with doctor about pain symptoms
Eric-
I'm glad that you felt that you could be open with your doctor at your appointment. I don't have a substance abuse problem, but I do have a problem complaining about things that are really bothering me and have had to learn how to do it. Am I good at letting my doctor know everything that is bothering me, usually pain related or some other myeloma drug related problem? No, but I'm learning. We all have some personality thing that we have to deal with while going through our treatments with this cancer. Our doctors are better able to treat us effectively if we are open about what concerns us, or any other complicating factor.
I wish you well in learning how to live with myeloma and whatever addiction you are recovering from. It is a balancing act that you will have to learn how to manage for yourself. You will succeed. Don't suffer from the pain of broken bones when you don't need to.
Nancy in Phila
I'm glad that you felt that you could be open with your doctor at your appointment. I don't have a substance abuse problem, but I do have a problem complaining about things that are really bothering me and have had to learn how to do it. Am I good at letting my doctor know everything that is bothering me, usually pain related or some other myeloma drug related problem? No, but I'm learning. We all have some personality thing that we have to deal with while going through our treatments with this cancer. Our doctors are better able to treat us effectively if we are open about what concerns us, or any other complicating factor.
I wish you well in learning how to live with myeloma and whatever addiction you are recovering from. It is a balancing act that you will have to learn how to manage for yourself. You will succeed. Don't suffer from the pain of broken bones when you don't need to.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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