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Wife to a Chronic Pain Sufferer
Hello. My husband started suffering from chronic tension type headaches, day after day soon after waking up, for 8 months now. We have had nearly 35 visits to his primary care physician, two neurologist, and a psyco-therapist. He has tried 29 different prescriptions, all trials to see if they managed the pain, CT scans, MRIs, bloodwork, and various x-rays. All tests have come back normal and the doctors say it is psycosomatic pain. It is real enough to him, but has no identifiable cause. The situation has become nearly unbarable, for both of us. He lives in constant pain with only a tricyclic antidepressant which lowers the pain about 25%, and one prescription for Loratab which helped for a month and then he became tollerant so it isn't worth taking anymore, and no one will give him anything higher because of fears associated with opiates.
We had some success with Xanax at a high dosage, however the side effects left my husband useless, stumbling around and needing constant supervision. He was constantly angry and verbally abusive while on it, and it couldn't have been farther from the real him. His quality of life suffered too much even if the pain was lessened. After watching a video I took one night (because he never recalls what happened) he told his doctor he will never touch the stuff again, and the doctor hasn't given us any alternatives to try.
His primary care physician referred him to a 'very respected' pain management clinic in our area with five doctors. One week before his appointment, the office called and canceled his appointment and told him "not to bother since they don't have services to offer him." We called and called for a week and they were insistant that his doctor should treat him and they had nothing to offer him. They even told his primary care doctor who referred him that they refused to take him on as a client and treat him... becuase they couldn't do anything for him. They didn't even read his medical history! There isn't anything either of us won't do to help him, but three pain management doctors later, and we still can't get an appointment. It is like they are afraid to treat him! His doctor is trying to get him in, but even he encounters resistence with the doctors saying they will not take him on since they have no services to offer a patient 'in his condition'. My husband's doctor does not have any experience in pain management, which is why he doesn't feel comfortable taking my husband's treatment any further, but he also knows he needs help. We just are not finding any. Both neurologists have tried breaking the pain cycle with various medications and taking him off all medications, changing his diet, nothing worked and they too have thrown up their hands and quit. Our therapist still continues to help us both mentally, but she is rather expensive and we can only see her once every two months.
I am so tired of being helpless. I can't do anything to make the pain stop. For a month now there has been no relief I can offer for the pain, no pills other than the tricyclic which leaves my husband with moodswings and unable to engage in any intimate activities. We had planned on starting our family, but it isn't possible like this. His depression has worsened which I'm sure doesn't help the pain, and the fustration of seeking help only to have the door slammed in your face, he doesn't mean to take it out on me, but he can't help it when I'm the only person he really sees. Our friends and family don't understand what is going on, and most are just exasperated with the constant problems so they don't want to be around. He thinks everyone has given up on him and that I'm no help to him no matter how much I care and love him.
Is there something else that we are missing in dealing with these pain specialists? I've read so much about multi prong approaches and alternative testing for these type headaches, but I don't know how or where to find this type of help. We aren't asking for drugs and whatever tests they require, homework to do, we will happily do it if they would give us a chance. I understand how hard it is for a doctor to look at someone who is physically normal in every way with no health problems, to just treat them for pain, but it has reached a point that I worry about him taking his own life if we can't find some way to put his life back together. I've been with this man since the 8th grade, 15 years together and I know there is something very wrong with his condition and what it is doing to his life. He isn't making it up and if he could make it stop on his own and work it out in his head, he would. Neither of us know what to do anyone.
Any support or suggestions would be so welcomed. I just feel like I've run out of ideas and am forced to stand back and watch both our lives get ripped apart by this.
We had some success with Xanax at a high dosage, however the side effects left my husband useless, stumbling around and needing constant supervision. He was constantly angry and verbally abusive while on it, and it couldn't have been farther from the real him. His quality of life suffered too much even if the pain was lessened. After watching a video I took one night (because he never recalls what happened) he told his doctor he will never touch the stuff again, and the doctor hasn't given us any alternatives to try.
His primary care physician referred him to a 'very respected' pain management clinic in our area with five doctors. One week before his appointment, the office called and canceled his appointment and told him "not to bother since they don't have services to offer him." We called and called for a week and they were insistant that his doctor should treat him and they had nothing to offer him. They even told his primary care doctor who referred him that they refused to take him on as a client and treat him... becuase they couldn't do anything for him. They didn't even read his medical history! There isn't anything either of us won't do to help him, but three pain management doctors later, and we still can't get an appointment. It is like they are afraid to treat him! His doctor is trying to get him in, but even he encounters resistence with the doctors saying they will not take him on since they have no services to offer a patient 'in his condition'. My husband's doctor does not have any experience in pain management, which is why he doesn't feel comfortable taking my husband's treatment any further, but he also knows he needs help. We just are not finding any. Both neurologists have tried breaking the pain cycle with various medications and taking him off all medications, changing his diet, nothing worked and they too have thrown up their hands and quit. Our therapist still continues to help us both mentally, but she is rather expensive and we can only see her once every two months.
I am so tired of being helpless. I can't do anything to make the pain stop. For a month now there has been no relief I can offer for the pain, no pills other than the tricyclic which leaves my husband with moodswings and unable to engage in any intimate activities. We had planned on starting our family, but it isn't possible like this. His depression has worsened which I'm sure doesn't help the pain, and the fustration of seeking help only to have the door slammed in your face, he doesn't mean to take it out on me, but he can't help it when I'm the only person he really sees. Our friends and family don't understand what is going on, and most are just exasperated with the constant problems so they don't want to be around. He thinks everyone has given up on him and that I'm no help to him no matter how much I care and love him.
Is there something else that we are missing in dealing with these pain specialists? I've read so much about multi prong approaches and alternative testing for these type headaches, but I don't know how or where to find this type of help. We aren't asking for drugs and whatever tests they require, homework to do, we will happily do it if they would give us a chance. I understand how hard it is for a doctor to look at someone who is physically normal in every way with no health problems, to just treat them for pain, but it has reached a point that I worry about him taking his own life if we can't find some way to put his life back together. I've been with this man since the 8th grade, 15 years together and I know there is something very wrong with his condition and what it is doing to his life. He isn't making it up and if he could make it stop on his own and work it out in his head, he would. Neither of us know what to do anyone.
Any support or suggestions would be so welcomed. I just feel like I've run out of ideas and am forced to stand back and watch both our lives get ripped apart by this.
There are still options that can be explored but it sounds like the most important thing right now is to get help to let both you and your husband "step back" from the roller-coaster ride you are on - the psychologist or even a psychiatrist (they can prescribe medication and that may be very relevant in this case). The big danger now is that depression is clearly overwhelming your husband, and I imagine it must be pretty terrible for you too. Unfortunately, the roller-coaster is something many of us know only too well...and once we are on it, a lousy appointment with a single doctor can occlude the simple pleasures still available in life, as corny as that may sound. Certainly, in my case I had my first (and only) thoughts of suicide after a particularly bizarre meeting with a doctor at my initial pain clinic assessment. Thankfully my general practitioner helped me to get in fast to see a psychiatrist who told me that essentially I wasn't the problem - which made me feel mightily relieved. That feeling that you are slowly going mad as the system jerks you around is a truly surreal feeling. So, aim for stabilisation and improvement of depression even while trying to get to the bottom of the chronic pain.
Will say more later,
Regards, OtisDaMan
Will say more later,
Regards, OtisDaMan
I am late to this discussion but I want to point out that the reason the PM doctors are reluctant to take your husband on as a patient is he has no definitive diagnose. The PM doctors are there for one reason and that is to treat pain. They do not search for the .
reason why your in pain but only treat it. The reason they are turning you down is NOT that they fear failing as someone mentioned.
There are PM doctors that do realize that all chronic pain Pt's do not have definitive diagnosis but do realize they are in pain and need help, so do not give up.
I have to say your husband is very lucky to have such a supportive and understanding wife. It does make all the difference.
I also want to point out that you should never take any type of medications over the counter or prescibed without asking your doctor first.
I hope he does find some relief very soon:)
reason why your in pain but only treat it. The reason they are turning you down is NOT that they fear failing as someone mentioned.
There are PM doctors that do realize that all chronic pain Pt's do not have definitive diagnosis but do realize they are in pain and need help, so do not give up.
I have to say your husband is very lucky to have such a supportive and understanding wife. It does make all the difference.
I also want to point out that you should never take any type of medications over the counter or prescibed without asking your doctor first.
I hope he does find some relief very soon:)
You are welcome. We all try to support one another. It's one of the many nice things about MedHelp's Pain Mangement Forum.
There are options for him. The key as you know is to keep the faith. Hope cannot be lost or one feels worthless.
I too am hoping that the PMP will recognize his pain and desperate situation and offer solutions. In my opinion short term narcotics should be considered at least until the other options are explored and have time to be implemented.
You are so kind to understand the PCP position. I am sure he is very busy in a solo practice. However shame on him for leaving for the weekend without clarifying your husband prescription. Two days is a long time for those of us that suffer with chronic pain. And I am sure you are correct in your assumption that he would have not done this to his son.
I have taken tramadol and it was not effective for me. It has however been very effective for others. It is worth a try. I do beleive that in time the FDA will classify it as a controlled substance. It's actions are so similar to opiates. And as I said it does have addictive properties.
It sounds like you are ding all the right things for your husband. I hope on Monday his RX can be straightened out. My greater hope is that the new PMP will have more answers, more solutions for your husband.
My Best...Tuck
There are options for him. The key as you know is to keep the faith. Hope cannot be lost or one feels worthless.
I too am hoping that the PMP will recognize his pain and desperate situation and offer solutions. In my opinion short term narcotics should be considered at least until the other options are explored and have time to be implemented.
You are so kind to understand the PCP position. I am sure he is very busy in a solo practice. However shame on him for leaving for the weekend without clarifying your husband prescription. Two days is a long time for those of us that suffer with chronic pain. And I am sure you are correct in your assumption that he would have not done this to his son.
I have taken tramadol and it was not effective for me. It has however been very effective for others. It is worth a try. I do beleive that in time the FDA will classify it as a controlled substance. It's actions are so similar to opiates. And as I said it does have addictive properties.
It sounds like you are ding all the right things for your husband. I hope on Monday his RX can be straightened out. My greater hope is that the new PMP will have more answers, more solutions for your husband.
My Best...Tuck
You are so right Tuckamore
After giving the wrong dosage on the Tramadol, the doctor never even called back to fix it. He knows it is Friday and nothing will happen for us until Monday. It may seem like only two days, an easy amount of time to adjust, but to my husband, it is two days where no doctor gave a rats behind about his pain. We left two message and the pharmazy called twice on our behalf (we made sure they did to back up our claims) and if the end, the office did nothing. I do feel a small pang of sympathy because he is one doctor with his own practice and has no other help... but if you are going to mess up a patients prescription is a time of crisis, you should take the five minutes to call the pharmacy before heading home... after all I'm sure if it were his son, he would take the time.
I'm plan on being very careful with the Tramadol and it's dosage when we do get it, because all the characteristics sound very much like opiates. Even if it is not exactly like it, it sounds like something that should build trust, and is too easily abused. In the end any relief, even if only half a day is so much better than nothing. My husband is at least experienced/smart enough to know that as tolerence sets in or things get fuzzy, he will take more than he should, where as my memory and numbers always stay clear. He used to get offended when I took his pills and set them out each morning and night, even taking them to work with me so he wouldn't have the temptation, now he prefers it that way. As long as he can get the relief, he is willing to follow the rules. Plus it means he can tell the doctors that there aren't any mess ups. I don't allow him to break rules and we both know it is important... now to get doctors to just TRUST us... that is the real hurtle
I just hope the new pain management doctor sees that we are willing to work with them if they will help us with the real issues. It is every day life that is effected and sometimes short terms solutions are necissary! On the good side, in researching some of the medical benefits that my company offers for family, I found a nice site on some pain medicine alternatives to chronic pain, Turns out the facility my husband has the appointment with also works with my company insurance and they are well versed in some of the neuro treatments and modern techniques for helping those with chronic pain. Talking about the options and other paths in new medicine that might help prevent the need for constant/forever opiate medicine seems to give my husband some purpose or at least something else to drawl upon. Even if they help him short terms with drugs, there are other options they can persue with him. There is hope. He'd been reading up on a new book I got him about some of the new stimulation programs that work directly on the brain or at the least, help pin point the parts of the brain that trigger the pain. He had put it down last week hoping he wouldn't need it and his doc would have the answers/help he needed. I got him to pick it up and read to me this morning. It Gave him a reason to hold on and refocus if only for a short wall. Little steps I keep telling him. He might not see a week from now, but together we can work on day by day. Just wish we had help from the medical community!
On one hand I fear letting him down or these things I keep showing him not working, but on the other I know if I don't keep trying, I will be defeated and what does that leave my husband. If I loose hope there IS nothing left for him when his own mind fails to give him reason. I think it is better to risk being wrong and to continue to search than to give up all hope all together.
Thanks for being there. It means so much to us both.
After giving the wrong dosage on the Tramadol, the doctor never even called back to fix it. He knows it is Friday and nothing will happen for us until Monday. It may seem like only two days, an easy amount of time to adjust, but to my husband, it is two days where no doctor gave a rats behind about his pain. We left two message and the pharmazy called twice on our behalf (we made sure they did to back up our claims) and if the end, the office did nothing. I do feel a small pang of sympathy because he is one doctor with his own practice and has no other help... but if you are going to mess up a patients prescription is a time of crisis, you should take the five minutes to call the pharmacy before heading home... after all I'm sure if it were his son, he would take the time.
I'm plan on being very careful with the Tramadol and it's dosage when we do get it, because all the characteristics sound very much like opiates. Even if it is not exactly like it, it sounds like something that should build trust, and is too easily abused. In the end any relief, even if only half a day is so much better than nothing. My husband is at least experienced/smart enough to know that as tolerence sets in or things get fuzzy, he will take more than he should, where as my memory and numbers always stay clear. He used to get offended when I took his pills and set them out each morning and night, even taking them to work with me so he wouldn't have the temptation, now he prefers it that way. As long as he can get the relief, he is willing to follow the rules. Plus it means he can tell the doctors that there aren't any mess ups. I don't allow him to break rules and we both know it is important... now to get doctors to just TRUST us... that is the real hurtle
I just hope the new pain management doctor sees that we are willing to work with them if they will help us with the real issues. It is every day life that is effected and sometimes short terms solutions are necissary! On the good side, in researching some of the medical benefits that my company offers for family, I found a nice site on some pain medicine alternatives to chronic pain, Turns out the facility my husband has the appointment with also works with my company insurance and they are well versed in some of the neuro treatments and modern techniques for helping those with chronic pain. Talking about the options and other paths in new medicine that might help prevent the need for constant/forever opiate medicine seems to give my husband some purpose or at least something else to drawl upon. Even if they help him short terms with drugs, there are other options they can persue with him. There is hope. He'd been reading up on a new book I got him about some of the new stimulation programs that work directly on the brain or at the least, help pin point the parts of the brain that trigger the pain. He had put it down last week hoping he wouldn't need it and his doc would have the answers/help he needed. I got him to pick it up and read to me this morning. It Gave him a reason to hold on and refocus if only for a short wall. Little steps I keep telling him. He might not see a week from now, but together we can work on day by day. Just wish we had help from the medical community!
On one hand I fear letting him down or these things I keep showing him not working, but on the other I know if I don't keep trying, I will be defeated and what does that leave my husband. If I loose hope there IS nothing left for him when his own mind fails to give him reason. I think it is better to risk being wrong and to continue to search than to give up all hope all together.
Thanks for being there. It means so much to us both.
My heart goes out to you and your husband. How awful for him. Bless your heart for your strong support. He needs you so much right now. He needs you to hope for him and to continue the fight.
In my opinion it is time to find a new PCP. This should not be viewed as doctor shopping. I'd be on the phone today. He seems indifferent to your husbands suffering. However I do encourage him to give the Tramadol a try. At this point he has nothing to lose.
Your PCP needs to do some reading on Tramadol. There are many cases of Tramadol addiction. Though it considered not as addictive as other opiates. It is a novel, central-acting synthetic opioid with weak mu-opioid activity. You may find many Web sites and other sources of information that state that tramadol is not addictive and cannot be abused. However, this is simply not true; as an opioid (morphine-like medication), Tramadol can be "habit forming."
Your strength is admirable and so needed right now. My best to you and your husband.
In my opinion it is time to find a new PCP. This should not be viewed as doctor shopping. I'd be on the phone today. He seems indifferent to your husbands suffering. However I do encourage him to give the Tramadol a try. At this point he has nothing to lose.
Your PCP needs to do some reading on Tramadol. There are many cases of Tramadol addiction. Though it considered not as addictive as other opiates. It is a novel, central-acting synthetic opioid with weak mu-opioid activity. You may find many Web sites and other sources of information that state that tramadol is not addictive and cannot be abused. However, this is simply not true; as an opioid (morphine-like medication), Tramadol can be "habit forming."
Your strength is admirable and so needed right now. My best to you and your husband.
Just got off the phone with the doctor. The medication he calld in to the pharmacy was Metoprolol which he think will help with circulation. He understand we tried something like this before, but this is a different type... it is another beta blocker which we havetried before, but will see.
I couldn't get him comfortable enough to prescribe any narcotics, but he agree since my husband has been off of antidepresants for quite some time to give him Tramadol to try. He is calling in time release one pill a day for him to take. He is convinced that this should work as well as a narcotic without being 'habit forming', he just hesistated to use it before because it has a nasty interaction with antidepressants.
Of course after, the pharmacy says 'there is a problem with this prescription' and won't fill it until they speak with the doctor AGAIN. Doc must have left it on their machine since I can't imagine how it could have a problem when they are talking to him LIVE.
My husband is still miserable and depressed. He doesn't think the Tramadol has anything that will work and it is clear that until he meets the PMP, he won't be getting any other help.
I will start looking for another doctor, but I don't want it to look like we are 'shopping' when we haven't tried the PMP yet. Will have to play it by ear.
I couldn't get him comfortable enough to prescribe any narcotics, but he agree since my husband has been off of antidepresants for quite some time to give him Tramadol to try. He is calling in time release one pill a day for him to take. He is convinced that this should work as well as a narcotic without being 'habit forming', he just hesistated to use it before because it has a nasty interaction with antidepressants.
Of course after, the pharmacy says 'there is a problem with this prescription' and won't fill it until they speak with the doctor AGAIN. Doc must have left it on their machine since I can't imagine how it could have a problem when they are talking to him LIVE.
My husband is still miserable and depressed. He doesn't think the Tramadol has anything that will work and it is clear that until he meets the PMP, he won't be getting any other help.
I will start looking for another doctor, but I don't want it to look like we are 'shopping' when we haven't tried the PMP yet. Will have to play it by ear.
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