cindys601
08-10-2008, 03:32 AM
Hi~
I am new here, looking for a direction. I have been diagnosed with Arnold Chiari Malformation, which is a brain disorder. With this, the brain is sinking into the base of the skull, compressing the nerves as well as the brainstem, causing daily cronic pain.
There are surgeries to relieve the pressure on the nerves, though there is no cure, Chiari is cronic and depending on how long this condition is left untreated, these nerves can be left with permanent damage. I had my 1st surgery on my spinal cord in June but my pain level is unbearable!!
I was given oxycodone after my surgery. I have a big fear of dependancy so I stopped this a week post op. So far, nothing I've been given has really helped anyways so I just suffer.
I've tried lyrica, neurontin and the oxy. And even in the hospital, morphine just takes the edge off but doesn't help too much. So I self medicate by using rest to feel better. When I lay flat, my pain lessens but once up again, it comes back. This is because my brain is blocking the flow of spinal fluid to my brain. But my quality of life is definately not the best.
I am 42 years old with 2 teenagers to help reach adulthood and this is affecting them so much. Because I'm unable to be upright for long, I cant do much with them and that just saddens me to see them lose out on life because they're mom is sick.
But I've been living this way for a long time and today I brought my daughter to our family councelor. She has been wonderful in helping our family deal with all of this. Today I expressed my pain and my suffering to her. She told me that sometimes I think I'm superwoman but its time now to seak out someone for pain management.
I expressed my fear of dependency and she encouraged me by saying that I have enough self awareness not to get caught up in that. Also, I explained that I don't want to be concidered a "drug seeker" by the medical profession. Chiari is something not alot of dr's know about or understand so I fear they'll think I'm just looking for drugs. But I do need help with this and don't know where to start.
I am generally an upbeat person, even concidering my disability. But lately, I spend many days crying, alone and trying to hide my pain from my kids. Funny but yesterday I was crying to myself and thought since no one was with me in the room, I was not being heard. I have a little quaker parakeet who is quite vocal and all of I sudden I realized that he was coping my sounds and crying back to be. LOL Gotta find some humor too!!
So here I am looking for any advice and direction. If I can find a way to manage my pain and have some of my life back, I'd be happy.
Thanks for listening to my story
Cindy
I am new here, looking for a direction. I have been diagnosed with Arnold Chiari Malformation, which is a brain disorder. With this, the brain is sinking into the base of the skull, compressing the nerves as well as the brainstem, causing daily cronic pain.
There are surgeries to relieve the pressure on the nerves, though there is no cure, Chiari is cronic and depending on how long this condition is left untreated, these nerves can be left with permanent damage. I had my 1st surgery on my spinal cord in June but my pain level is unbearable!!
I was given oxycodone after my surgery. I have a big fear of dependancy so I stopped this a week post op. So far, nothing I've been given has really helped anyways so I just suffer.
I've tried lyrica, neurontin and the oxy. And even in the hospital, morphine just takes the edge off but doesn't help too much. So I self medicate by using rest to feel better. When I lay flat, my pain lessens but once up again, it comes back. This is because my brain is blocking the flow of spinal fluid to my brain. But my quality of life is definately not the best.
I am 42 years old with 2 teenagers to help reach adulthood and this is affecting them so much. Because I'm unable to be upright for long, I cant do much with them and that just saddens me to see them lose out on life because they're mom is sick.
But I've been living this way for a long time and today I brought my daughter to our family councelor. She has been wonderful in helping our family deal with all of this. Today I expressed my pain and my suffering to her. She told me that sometimes I think I'm superwoman but its time now to seak out someone for pain management.
I expressed my fear of dependency and she encouraged me by saying that I have enough self awareness not to get caught up in that. Also, I explained that I don't want to be concidered a "drug seeker" by the medical profession. Chiari is something not alot of dr's know about or understand so I fear they'll think I'm just looking for drugs. But I do need help with this and don't know where to start.
I am generally an upbeat person, even concidering my disability. But lately, I spend many days crying, alone and trying to hide my pain from my kids. Funny but yesterday I was crying to myself and thought since no one was with me in the room, I was not being heard. I have a little quaker parakeet who is quite vocal and all of I sudden I realized that he was coping my sounds and crying back to be. LOL Gotta find some humor too!!
So here I am looking for any advice and direction. If I can find a way to manage my pain and have some of my life back, I'd be happy.
Thanks for listening to my story
Cindy
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123dietdrpepper
08-10-2008, 04:16 AM
Cindy, all of the feelings you are experiencing is normal. I am on pain meds but still suffering and have moments where I want to cry out of frustration but keep it bottle in. Until lately my children can tell I am having a rough day by my body movements and they don't even need for me to tell them. What is so sad is when they walk up to me and ask Mom, do you need a diet dr. pepper, a blanket, or do you need a hug? Then what do you think happens? You are so right, there is no holding back the tears. My point in telling you is that with that darn bird you can't hide anything :jester: but your children are smart enough to know when the days are bad. They don't need you to tell them.
If you are at the point of crying, having feelings of guilt over missing things, and experiencing isolation, it is indeed time to seek out help. From the sounds of it, you are suffering depression and denial. All very natural for chronic pain patients to experience. For your sake and your families sake, it is time to get some help from a professional. I would definitely go to a pm doctor and skip the gp thing because this is such a rare disease.
There was another user Roy47, I have not seen a recent post but you might want to do a advanced search on his name. He suffered from this disease and I know he was very alone and frightened of the progression of the disease. Good luck and God Bless.
If you are at the point of crying, having feelings of guilt over missing things, and experiencing isolation, it is indeed time to seek out help. From the sounds of it, you are suffering depression and denial. All very natural for chronic pain patients to experience. For your sake and your families sake, it is time to get some help from a professional. I would definitely go to a pm doctor and skip the gp thing because this is such a rare disease.
There was another user Roy47, I have not seen a recent post but you might want to do a advanced search on his name. He suffered from this disease and I know he was very alone and frightened of the progression of the disease. Good luck and God Bless.
cmpgirl
08-10-2008, 04:32 AM
Cindy, I'm so sorry for your pain. Please know that these boards are a wonderful place to get advice, information and support. We may not always have an answer to a specific question, but we all have a shared understanding of what it is like to live your life, every day, with pain.
Medication is a very personal choice, so I can't honestly tell you what you should do. But I can give you my experience and hopefully another person's perspective might help you decide.
With all opiates/opioids, there is an issue of physical dependence. This is not the same as addiction. People who have an addiction take the meds to get the high and only to get the high. And since this "high" dissipates quickly with the same doses every day, an addict will start taking more and more to achieve the same result. Specifically, more than is prescribed by the doctor.
I guess you have to look at the pros and cons, and decide what gives you the best quality of life. I, like you, am a mother and my daughter was a teenager when my journey with chronic pain began. It was actually a big factor in my decision to go ahead with the meds. They allowed me to be able to be a more present parent, because up to that point, my pain would not allow it.
I have a fantastic PM doctor and I have always been 100% compliant with his prescribed dosing. I would never take the chance of losing my care. Not every aspect of PM involves meds, either. There are usually several other modalities that a PM doc will order/prescribe, depending on each patient's underlying condition. I use several other non-medicinal methods along with my meds to manage my pain.
I'm sure you'll get many more responses. Each person's experience and opinions are different. I hope I've helped a little bit, at least. If you have any specific questions, please don't hesitate to ask. I check in here almost every day. Take care and welcome to the PM/CP boards. Blessings, CMP/MM
Medication is a very personal choice, so I can't honestly tell you what you should do. But I can give you my experience and hopefully another person's perspective might help you decide.
With all opiates/opioids, there is an issue of physical dependence. This is not the same as addiction. People who have an addiction take the meds to get the high and only to get the high. And since this "high" dissipates quickly with the same doses every day, an addict will start taking more and more to achieve the same result. Specifically, more than is prescribed by the doctor.
I guess you have to look at the pros and cons, and decide what gives you the best quality of life. I, like you, am a mother and my daughter was a teenager when my journey with chronic pain began. It was actually a big factor in my decision to go ahead with the meds. They allowed me to be able to be a more present parent, because up to that point, my pain would not allow it.
I have a fantastic PM doctor and I have always been 100% compliant with his prescribed dosing. I would never take the chance of losing my care. Not every aspect of PM involves meds, either. There are usually several other modalities that a PM doc will order/prescribe, depending on each patient's underlying condition. I use several other non-medicinal methods along with my meds to manage my pain.
I'm sure you'll get many more responses. Each person's experience and opinions are different. I hope I've helped a little bit, at least. If you have any specific questions, please don't hesitate to ask. I check in here almost every day. Take care and welcome to the PM/CP boards. Blessings, CMP/MM
tiggertoo2174
08-10-2008, 10:06 AM
Hi Cindy and welcome. Right now my PCP is prescribing my pain meds. I was also very concerned about the dependance issue. She explained to me that I was already taking meds I am physically dependant on - a blood pressure med. She had told me to not stop taking it without talking to her that it would have a bad reaction, but until the pain med issue came up it didn't click for me that it was the same thing. Have you tried any other treatments for your pain? I have a lot of muscle problems and see a massage therapist about every two weeks. Even if you don't have muscle problems it might be worth trying just for the relaxation. There are different types of practioners and different types of massage, she tried something I hadn't had before last week called Reiki. It's very gentle, the touch is very light, some practioners just hold their had over the area. At the very least it's really relaxing both physically and mentally.
Tigg.
Tigg.
Executor
08-10-2008, 10:34 AM
Hello and welcome. I'm so sorry to hear about your troubles. As a fellow pain sufferer, I know a little about what you're going through. When your head hurts, everything hurts!
I think Cmpgirl has given you some excellent advice. Every patient must weigh the pros and cons of being medicated. With all due respect, it sounds as if the pros of taking meds would far outweigh the cons. Let me tell you about my experience.....
I suffered from pain very similar to yours, although I have a different condition. For me, I take a heavy LA med and heavy BT meds....I've worked up to where I am...I didn't start overnight @ these amts. Nevertheless, the meds have given a great portion of my life back. Yes, I have dependance issues. Yes, the meds have side effects. Yes, I worried about many of the same things you do. BUT, the positives are so much more.....And GREATER. I have the choice to function via the ability of a liberal batch of meds....I feel like I have the ability to fight this curse and fight back hard.
I would highly encourage you to adequately treat your pain. You have to look @ the glass as half full, and not half empty. You can deal with the issues you are concerned about. Suffering like you are is not just terrible for you, but your children. You don't have to tell anyone your medicated. You can keep much of it, if not all, to yourself....In fact, I would encourage you to do so. If you elect to go this route, we can talk in more detail then.
Please see a PM Doc....You owe it to yourself, and your family.
Take care,
Ex
I think Cmpgirl has given you some excellent advice. Every patient must weigh the pros and cons of being medicated. With all due respect, it sounds as if the pros of taking meds would far outweigh the cons. Let me tell you about my experience.....
I suffered from pain very similar to yours, although I have a different condition. For me, I take a heavy LA med and heavy BT meds....I've worked up to where I am...I didn't start overnight @ these amts. Nevertheless, the meds have given a great portion of my life back. Yes, I have dependance issues. Yes, the meds have side effects. Yes, I worried about many of the same things you do. BUT, the positives are so much more.....And GREATER. I have the choice to function via the ability of a liberal batch of meds....I feel like I have the ability to fight this curse and fight back hard.
I would highly encourage you to adequately treat your pain. You have to look @ the glass as half full, and not half empty. You can deal with the issues you are concerned about. Suffering like you are is not just terrible for you, but your children. You don't have to tell anyone your medicated. You can keep much of it, if not all, to yourself....In fact, I would encourage you to do so. If you elect to go this route, we can talk in more detail then.
Please see a PM Doc....You owe it to yourself, and your family.
Take care,
Ex
cindys601
08-10-2008, 10:48 AM
Hi Dietdrpepper,
Thanks so much for sharing your story with me. Your childrens response to how your feeling brought tears to MY eyes so I can imagine how it affects you to hear so much compassion. Your a lucky mom. That shows how much your loved.
I have talked to Roy in the past. I haven't seen him on the brain and nervous system board in a long time. The boards would be very helpful if we had a specific board for chiarians to gather since this is an uncommon disorder, most go on to specific chiari forums elsewhere. I have tried them as well but I love the healthboards and the support here.
My kids do know I live with daily pain but there is nothing that makes you feel helpless than watching someone suffer and not knowing what to do to help. And the bottom line is they can't really help. So I don't generally share the intensity of my pain with them. (though I do with my bird LOL)
You mentioned depression and that day with my bird, I was thinking I was depressed too. But as our family therepist mentioned, I have alot of self awareness and am familiar with the sighns of depression. So as I was crying I was thinking that this could be a depression thing. But along with depression, as you said, you isolate and no longer have the desire to do the things you used to do.
But I am still wanting to go out to party's, family gatherings, amusument parks and all of the things I love but my body is keeping me from doing those things. And that in itself saddens me that I am so limited. I have to plan in advance and rest up before my outings and when I return home, I'm spent and off to bed for a couple of days. But I am still able to enjoy the events and have fun. So I don't really think I'm depressed. But saddened by my losses.
Denial is another thing. When I got sick, I accepted this very well. There was never a grieving process for me. I decided that this is what it is and adapt and overcome. This worked for me. I gave up a family buisiness and decided that I now had to take time in my life to focus on my health. So I think skipping the grieving part finally catching up with me. Now I'm grieving and I'm angry at this disease that has taken my life away.
But I've always been a fighter and its getting to the point that I have to gather up my energy to fight back. I just don't know where to begin. My PCP, my neurologist or can I just contact a PM clinic on my own? I'm ready!!
Thanks for your support
Cindy
Thanks so much for sharing your story with me. Your childrens response to how your feeling brought tears to MY eyes so I can imagine how it affects you to hear so much compassion. Your a lucky mom. That shows how much your loved.
I have talked to Roy in the past. I haven't seen him on the brain and nervous system board in a long time. The boards would be very helpful if we had a specific board for chiarians to gather since this is an uncommon disorder, most go on to specific chiari forums elsewhere. I have tried them as well but I love the healthboards and the support here.
My kids do know I live with daily pain but there is nothing that makes you feel helpless than watching someone suffer and not knowing what to do to help. And the bottom line is they can't really help. So I don't generally share the intensity of my pain with them. (though I do with my bird LOL)
You mentioned depression and that day with my bird, I was thinking I was depressed too. But as our family therepist mentioned, I have alot of self awareness and am familiar with the sighns of depression. So as I was crying I was thinking that this could be a depression thing. But along with depression, as you said, you isolate and no longer have the desire to do the things you used to do.
But I am still wanting to go out to party's, family gatherings, amusument parks and all of the things I love but my body is keeping me from doing those things. And that in itself saddens me that I am so limited. I have to plan in advance and rest up before my outings and when I return home, I'm spent and off to bed for a couple of days. But I am still able to enjoy the events and have fun. So I don't really think I'm depressed. But saddened by my losses.
Denial is another thing. When I got sick, I accepted this very well. There was never a grieving process for me. I decided that this is what it is and adapt and overcome. This worked for me. I gave up a family buisiness and decided that I now had to take time in my life to focus on my health. So I think skipping the grieving part finally catching up with me. Now I'm grieving and I'm angry at this disease that has taken my life away.
But I've always been a fighter and its getting to the point that I have to gather up my energy to fight back. I just don't know where to begin. My PCP, my neurologist or can I just contact a PM clinic on my own? I'm ready!!
Thanks for your support
Cindy
cindys601
08-10-2008, 11:17 AM
Hi Cmpgirl
It is indead nice to be in a place that your not alone. These boards are a heaven sent!!
The 1st thing I wanted to clarify is I'm not afraid that I'll use these pain meds for anything other than pain. I'm am not the type to abuse pain meds recreationally but my fear lies in the withdrawal of pain meds. My mom was on percocettes for pain and going off of them, she had the rebound pain. So thats more of my concern. I hate the feeling of being doped up so I know I won't enjoy that.
I agree that when you have children involved that its more about the kids than it is about ourselves. My daughter and I were talking yesterday about how I've changed so much in the last 2 years. I'm the same person inside but feel like I've been taken over on the outside!! LOL. Our therapist asked her how she's coping and tears started flowing from her eyes. She said she is worried how I suffer. So for her alone, I need to try to change things and get some help. I guess the 1st step is finding a PM doctor?
Cindy
It is indead nice to be in a place that your not alone. These boards are a heaven sent!!
The 1st thing I wanted to clarify is I'm not afraid that I'll use these pain meds for anything other than pain. I'm am not the type to abuse pain meds recreationally but my fear lies in the withdrawal of pain meds. My mom was on percocettes for pain and going off of them, she had the rebound pain. So thats more of my concern. I hate the feeling of being doped up so I know I won't enjoy that.
I agree that when you have children involved that its more about the kids than it is about ourselves. My daughter and I were talking yesterday about how I've changed so much in the last 2 years. I'm the same person inside but feel like I've been taken over on the outside!! LOL. Our therapist asked her how she's coping and tears started flowing from her eyes. She said she is worried how I suffer. So for her alone, I need to try to change things and get some help. I guess the 1st step is finding a PM doctor?
Cindy
cindys601
08-10-2008, 11:30 AM
Hi Tiggertoo
I haven't tried anything else for my pain. Massage is an option but I've never thought of reiki. Relaxation definately sounds great!! If laying down and sleep help, this would probobly be benificial. Thabnks for the input!!
Hi Exetutor~
I think your right that looking at the glass 1/2 full is better. I do need to pursue this and put my fears aside for now, if not for myself but for my family. Can I contact a PM dr or do I have to be refered to one? My insurance does not require a referall.
Thanks so much for everyones help and support!!
Cindy
I haven't tried anything else for my pain. Massage is an option but I've never thought of reiki. Relaxation definately sounds great!! If laying down and sleep help, this would probobly be benificial. Thabnks for the input!!
Hi Exetutor~
I think your right that looking at the glass 1/2 full is better. I do need to pursue this and put my fears aside for now, if not for myself but for my family. Can I contact a PM dr or do I have to be refered to one? My insurance does not require a referall.
Thanks so much for everyones help and support!!
Cindy
cat_100
08-10-2008, 02:30 PM
Cindy,
I also think a PM doctor is a good idea for you.
Even though your insurance may not require a referral, most PM doctors do require one along with a copy of your records sent to them by your doctor. If you have any test results (MRI, etc) they will want that as well.
Let us know how things go for you.
Cat.
I also think a PM doctor is a good idea for you.
Even though your insurance may not require a referral, most PM doctors do require one along with a copy of your records sent to them by your doctor. If you have any test results (MRI, etc) they will want that as well.
Let us know how things go for you.
Cat.
Toonces1
08-10-2008, 04:01 PM
My heart goes out to you. This must be a really hard disease to come to terms with. It sounds like your family is supportive, and that can make all the difference in the world.
I, too, think that you will probably need a referral from another physician in order to get a PM appointment. I also agree that you should seek out more pain management. I was (am still am) very afraid of dependence on narcotic medication. I really resisted taking them at first and my quality of life was terrible. I think it really put a stress on my marriage.
I think you will enjoy your life and your family time much more if you can get some relief from your pain. Your children will grow up before you know it, and like you said, you don't want to miss out on their lives while they are still at home.
I, too, think that you will probably need a referral from another physician in order to get a PM appointment. I also agree that you should seek out more pain management. I was (am still am) very afraid of dependence on narcotic medication. I really resisted taking them at first and my quality of life was terrible. I think it really put a stress on my marriage.
I think you will enjoy your life and your family time much more if you can get some relief from your pain. Your children will grow up before you know it, and like you said, you don't want to miss out on their lives while they are still at home.
stymie82
08-10-2008, 04:56 PM
I would urge you to try pain meds to relieve pain and to give you the best quality of life you can have. I suffer from a very painful disease called adhesive arachnoiditis, for which there is presently no cure. I am on a cocktail of seven meds, that do a good job of covering pain and allow me to be functional. I am not impaired, and no one knows that I am on potent meds unless I let them know. Without the meds, I would lie under the covers in pain and have very poor quality of life. My PCP is a great man who prescribes my meds. I hope you have a cast-iron stomach like I do. I really have very few side-effects from the meds, even constipation is kept under control by adequate intake of fruits, veggies, and fiber. There's no way I would ever willingly give up my meds. Only you can make that decision for yourself, but please think of your family members and how much better their lives will be if Mom is happier and more able to function:cool:
frank_n_beans
09-01-2008, 08:14 PM
Hi Cindy:
I am so sorry to hear that you are suffering. Are you feeling any better in these past few weeks since you posted this message?
Whether to take pain medication IS a personal choice but most often pain medications enable patients in chronic pain to be more functional, not less functional. I started to have back problems when I was 16 and I went on long-term opiate therapy when I was 20. Without the pain medication, I was in bed and depressed. With pain medication (and exercise, massage and lots of sleep!) I was able to get out of bed and get to class, do things with my friends and have a better outlook on life. My depression resolved itself and I found each day a little easier to bear. It took me a little longer to graduate college, but I was also able to go on to law school and pass my state's Bar examination...I was able to get married and walk down the aisle without my cane. If I hadn't been on pain medication, there is no way I'd ever have been able to achieve these goals. None of these things were easy for me to do (especially the law school and the bar exam) but, with the pain medication, I was able to.
It is true that patients who take long-term opiates WILL become physically dependent..but this is no different than when you drink coffee every day and get a headache if you go one day without. Addiction, on the other hand, is an aberrant psychological state. But..research shows that patients in chronic pain have a very small chance of developing an addiction to pain medication.
I did considerable research before deciding to go on the pain medication and you may want to do that too. It's true that being on opiates is not an ideal situation but neither is being in chronic pain. I find that there is no reason for a patient to suffer needlessly and taking the pain medication is the lesser of the two evils. As I mentioned above, without it, I'd be a wreck!
Our society looks at asking for pain relief as a weakness....I want to scream when I hear people boast "I don't take so much as even a tylenol"..as if that is something to be proud of!! And yet, that mind-set is so common...maybe that is one of the reasons you are hesitant to seriously consider long-term opioid therapy? When it comes down to it though, you should NOT have to suffer. You owe yourself more than that..and I'm sure your daughters don't want to see you suffer either.
I'd recommend a pain doctor for you, if you haven't been to one already. You can discuss all of your concerns with him/her and, hopefully, find a multi-modal approach that works for you.
If you have any questions, don't hesitate to ask.
Take care,
Frank 'n Beans
I am so sorry to hear that you are suffering. Are you feeling any better in these past few weeks since you posted this message?
Whether to take pain medication IS a personal choice but most often pain medications enable patients in chronic pain to be more functional, not less functional. I started to have back problems when I was 16 and I went on long-term opiate therapy when I was 20. Without the pain medication, I was in bed and depressed. With pain medication (and exercise, massage and lots of sleep!) I was able to get out of bed and get to class, do things with my friends and have a better outlook on life. My depression resolved itself and I found each day a little easier to bear. It took me a little longer to graduate college, but I was also able to go on to law school and pass my state's Bar examination...I was able to get married and walk down the aisle without my cane. If I hadn't been on pain medication, there is no way I'd ever have been able to achieve these goals. None of these things were easy for me to do (especially the law school and the bar exam) but, with the pain medication, I was able to.
It is true that patients who take long-term opiates WILL become physically dependent..but this is no different than when you drink coffee every day and get a headache if you go one day without. Addiction, on the other hand, is an aberrant psychological state. But..research shows that patients in chronic pain have a very small chance of developing an addiction to pain medication.
I did considerable research before deciding to go on the pain medication and you may want to do that too. It's true that being on opiates is not an ideal situation but neither is being in chronic pain. I find that there is no reason for a patient to suffer needlessly and taking the pain medication is the lesser of the two evils. As I mentioned above, without it, I'd be a wreck!
Our society looks at asking for pain relief as a weakness....I want to scream when I hear people boast "I don't take so much as even a tylenol"..as if that is something to be proud of!! And yet, that mind-set is so common...maybe that is one of the reasons you are hesitant to seriously consider long-term opioid therapy? When it comes down to it though, you should NOT have to suffer. You owe yourself more than that..and I'm sure your daughters don't want to see you suffer either.
I'd recommend a pain doctor for you, if you haven't been to one already. You can discuss all of your concerns with him/her and, hopefully, find a multi-modal approach that works for you.
If you have any questions, don't hesitate to ask.
Take care,
Frank 'n Beans