vamp36
08-21-2004, 01:29 AM
DOes anyone have or had a doctor that didn't believe your pain levels? How do you handle this. I have 4 doctors. THey all keep in contact with each other as well on my condition. I have my GP and my GI doctor (he prescribes my pain meds). THese two doctors are wonderful to me. And then at the UW hospital I travel to once a month I have 2 hepatologists. Anyway, It's there that one doctor does NOT believe that the liver area can hurt. Or hurt as bad as it does on me. He reminds me of this every month when I see him. I use my pain meds accordingly, I do not abuse them in any way. I am just sick of him telling me that I am cannot be in pain when I am in lots of pain!!!
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Flycatcher
08-21-2004, 10:58 AM
Two months after my fusion I called my neurosurgeon's office to request something for the pain. His nurse called me back and actually said, "You shouldn't BE in any pain now, we suggest you call the orthopedic surgeon." Can you believe that? Two months after bolting the lower half of my body back on and they think I "shouldn't" be in pain? I was way beyond angry and I would've strangled him if he'd said that to my face. I won't be seeing that neuro again, seems he's consistently had that attitude since I was released from the hospital.
I know we've all gone through it but I wish there was a way to let these docs actually feel the pain we constantly endure. 10 minutes and they'd change their attitudes, much less years on end.
Is there any chance you could explain that doctor's attitude to whomever's taking the lead in your care and maybe get a referral that would replace him? Nobody should have to deal with that, especially if you're paying him for his services.
Jack
I know we've all gone through it but I wish there was a way to let these docs actually feel the pain we constantly endure. 10 minutes and they'd change their attitudes, much less years on end.
Is there any chance you could explain that doctor's attitude to whomever's taking the lead in your care and maybe get a referral that would replace him? Nobody should have to deal with that, especially if you're paying him for his services.
Jack
Kissa
08-21-2004, 05:15 PM
It is an unfortunate situation and happens all to often. The primary reason I have found for this is becuase you are seeing the wrong type of doctor to deal properly with your pain. I do question why you are seeing a GI instead of a PM. A GI may not or usually does not understand the implications and problems with chronic pain. They will often think that one or two pills is the cure all and there's no way you could be in any further pain.
I have come across this situation primarily when dealing with orthopeadic surgerons with nearly every surgery I have had. They believe once you have surgery and your few weeks post op of meds is gone you are cured and never need meds again. In my situation this is not often the case.
You didn't state what your DX is or why you are needing medications, this is important to understanding what your potential needs may be.
I would suggest that you seek out a PM if your needs are not being met. Be advised however if you do go this route you will no longer be able to get pain medications of any sort from your GI. Being that your GI doesn't appear to be medding your properly it may be a better solution. You should realize that the job of a PM is not to make you 100% pain free, it is their job to make you functional in society. A goal of 50-75% or so, depending on doctor, should be what you are reaching for when being treated for daily pain.
You should also be looking at some of the alternatives such as physical therapy if it applies, pschological therapy to learn to cope with your pain, possible pain management classes to learn techniques to cope with the pain and what to do when the pain hits. This is a very important step that those with CP seem to forget or are not willing to do. One can not rely on medications 100% of the time so we do need other outlets to help us cope. Also find a pain support group in your area is also helpful.
Best of luck to you and let us know if you have any questions
Barbie
I have come across this situation primarily when dealing with orthopeadic surgerons with nearly every surgery I have had. They believe once you have surgery and your few weeks post op of meds is gone you are cured and never need meds again. In my situation this is not often the case.
You didn't state what your DX is or why you are needing medications, this is important to understanding what your potential needs may be.
I would suggest that you seek out a PM if your needs are not being met. Be advised however if you do go this route you will no longer be able to get pain medications of any sort from your GI. Being that your GI doesn't appear to be medding your properly it may be a better solution. You should realize that the job of a PM is not to make you 100% pain free, it is their job to make you functional in society. A goal of 50-75% or so, depending on doctor, should be what you are reaching for when being treated for daily pain.
You should also be looking at some of the alternatives such as physical therapy if it applies, pschological therapy to learn to cope with your pain, possible pain management classes to learn techniques to cope with the pain and what to do when the pain hits. This is a very important step that those with CP seem to forget or are not willing to do. One can not rely on medications 100% of the time so we do need other outlets to help us cope. Also find a pain support group in your area is also helpful.
Best of luck to you and let us know if you have any questions
Barbie
kellyp
08-21-2004, 10:21 PM
Maybe the other doc you see at the UW could talk to the one giving you a hard time. You shouldn't have to be put through that every month.
Kissa
08-21-2004, 11:30 PM
Doctors give patients a hard time primarly because they are watching their own backs and do not want to get investigated for writing prescriptions for narcotics that are heavily controlled. Many states require some heavy documentation to go with certain narcotics as well as triplicate forms to be filled out for every prescription. So in the long run the doctor just doesn't want to go through the hassle and is protecting himself.
The other reason is obvious, doctors who do not deal with pain on a daily basis or whos practice is nothing but pain do not understand that people can adjust to medications and they loose their effectiveness. Furthermore they don't always understand the full spectrum of things needed to be done for proper pain management.
Again, I feel it really boils down to that Tina should be seeing a PM, they definately won't give you grief on a monthly basis!
The other reason is obvious, doctors who do not deal with pain on a daily basis or whos practice is nothing but pain do not understand that people can adjust to medications and they loose their effectiveness. Furthermore they don't always understand the full spectrum of things needed to be done for proper pain management.
Again, I feel it really boils down to that Tina should be seeing a PM, they definately won't give you grief on a monthly basis!
vamp36
08-22-2004, 12:43 PM
My GI doctor checked into me seeing a PM. We have 3 of them here. None of them are knowledgable about my condition and because I am a liver patient, I am considered a "high liability risk". Therefor they will not accept me as a patient. Actually there is an Emergency room doctor that will not treat me either when I have to go there. He always calls someone else to do it. I have a very rare Autoimmune disorder. My immune system is attacking my organs. My galbladder is dead and gone, I have pancreatitis and severe liver damage. THey pain I suffer with is in my liver area and my joints. My liver is twice the size as normal and VERY painful.My hands, knees and ankles are the joints affected. THis is alll why my GI doctor is the one taking care of my pain as well. I just get so frustrated with my UW doctor as he does not believe me that the liver area can actually hurt. ANd hurt very bad!! I really wish I could give him my body for 1 day, have him go to Walmart and do some shopping. THe walking out there alone would cause him to double over by the time he was done. Thanks for the advice and letting me vent a bit. Tina
Kissa
08-22-2004, 12:55 PM
It does in fact sound like a sticky situation. I would keep stressing to the doctor about your pain levels. Do some research if you need to and print it out and take it to him. Sometimes you gotta do whatever you can to make them believe.
vamp36
08-22-2004, 01:46 PM
Thanks Kissa. I also go on another forum sometimes that has to do with my illness. And this is one of the main complaints by other people as well. So I know it's not just me & my UW doctor.
Snails
08-22-2004, 04:28 PM
Hi Tina,
I don't know much about your condition but I just wanted to wish you well and tell you that everyone here is supporting you and hoping that you get your pain better controlled soon. I see you live in Wisconsin, have you considered trying the Mayo Clinic? I was getting pretty good care before at the University of Minnesota, but the doctors at Mayo are just so smart, caring, attentive, and genuinely compassionate. It might be worth a shot--it sounds like you are really suffering and I know many people with severe, unusual conditions for whom Mayo has been a lifesaver. Just a thought...I am so sorry that you are being treated so poorly by some doctors. The only thing worse than severe chronic pain is when doctors try to tell you you're exaggerating or that it's all in their head. I can think of a few doctors who I'd give anything to make them live with my pain for a day, just so they would think twice before being so patronizing, condescending, and heartless. I truly hope things get better for you before long--good luck!
Take care,
Stacy
I don't know much about your condition but I just wanted to wish you well and tell you that everyone here is supporting you and hoping that you get your pain better controlled soon. I see you live in Wisconsin, have you considered trying the Mayo Clinic? I was getting pretty good care before at the University of Minnesota, but the doctors at Mayo are just so smart, caring, attentive, and genuinely compassionate. It might be worth a shot--it sounds like you are really suffering and I know many people with severe, unusual conditions for whom Mayo has been a lifesaver. Just a thought...I am so sorry that you are being treated so poorly by some doctors. The only thing worse than severe chronic pain is when doctors try to tell you you're exaggerating or that it's all in their head. I can think of a few doctors who I'd give anything to make them live with my pain for a day, just so they would think twice before being so patronizing, condescending, and heartless. I truly hope things get better for you before long--good luck!
Take care,
Stacy
Kissa
08-22-2004, 05:11 PM
I agree Snails, if I were anywhere close to Mayo, even an hours or so drive I'd go there. They are always doing new proceedures and trials. I have a friend who has reoccuring cancer, he moved near the Mayo because they were the only ones who could help him out!
I live near the Cleveland Clinic but I won't go there, I try to avoid it at all costs. I've been misdiagnosed several times by their rheumatology department and once the doctors orders braces for both of my legs and when I went to get them he didn't write what type of braces I needed so the guy called up to the doctor and he couldn't remember so he told him to put anything on that would fit! Umm ok...
I live near the Cleveland Clinic but I won't go there, I try to avoid it at all costs. I've been misdiagnosed several times by their rheumatology department and once the doctors orders braces for both of my legs and when I went to get them he didn't write what type of braces I needed so the guy called up to the doctor and he couldn't remember so he told him to put anything on that would fit! Umm ok...
vamp36
08-22-2004, 05:59 PM
Actually I'm trying to get into the Henry Ford Clinic in Michigan. They have a research clinic there on Autoimmune Disorders and from what I've been studying , a few extremely knowledgable doctors that specifically deal with AIH patients. So hopefully it will work. I'm waiting on the insurance company to OK it.
sgibson
08-23-2004, 10:13 AM
Tina,
Have you been tested for Lupus? I am sorry your doctor is a butt, unfortunately it seems to happen too often. I agree about wishing the doc could live in my body for a little while. It would only take about 15 minutes before he would be screaming for the strongest meds available. My first PM wasn't that great. I had my fusion in January and my ortho has been wonderful. I have been seeing him for over 3 years so he knows me pretty well. He has been rx'ing my pain meds for almost a year now. He does know my family history though. My oldest brother is a Senior State Trooper and just had surgery on his knee through my docs practice. Both of our parents have osteoarthritis. DDD, rheumy, osteoarthritis, arthritis, Lupus and several other painful conditions including cancer in both of our parents are all diseases that are in our immediate family. It helps having the same practice treating our family and knowing the history. My Ortho has referred me to a PM that is supposed to be one of the best. He heads the pain clinic for the cancer center and sports teams and several other pain clinics. I hope he is compassionate and not just out for the money. Some docs are in it for the money and not to actually help people. I just pray this guy is one of the ones that is in it to help people. I feel like if he heads the cancer pain clinic then he does want to help people. Anyway, Tina I think you need to find another doc who is compassionate to your needs and pain levels. Remember honey, you are the one paying him. He is working for you. Wouldn't you fire someone working for you if they weren't doing their job? We have to look at it like it is. It truly is an employee, employer situation and we the patients are the employers in these situations. They are getting paid good money to HELP us, not tell us we aren't hurting. I wish you all the best. I hope you find a doc that is understanding and compassionate. Take care.
God Bless,
Sherry :wave:
Have you been tested for Lupus? I am sorry your doctor is a butt, unfortunately it seems to happen too often. I agree about wishing the doc could live in my body for a little while. It would only take about 15 minutes before he would be screaming for the strongest meds available. My first PM wasn't that great. I had my fusion in January and my ortho has been wonderful. I have been seeing him for over 3 years so he knows me pretty well. He has been rx'ing my pain meds for almost a year now. He does know my family history though. My oldest brother is a Senior State Trooper and just had surgery on his knee through my docs practice. Both of our parents have osteoarthritis. DDD, rheumy, osteoarthritis, arthritis, Lupus and several other painful conditions including cancer in both of our parents are all diseases that are in our immediate family. It helps having the same practice treating our family and knowing the history. My Ortho has referred me to a PM that is supposed to be one of the best. He heads the pain clinic for the cancer center and sports teams and several other pain clinics. I hope he is compassionate and not just out for the money. Some docs are in it for the money and not to actually help people. I just pray this guy is one of the ones that is in it to help people. I feel like if he heads the cancer pain clinic then he does want to help people. Anyway, Tina I think you need to find another doc who is compassionate to your needs and pain levels. Remember honey, you are the one paying him. He is working for you. Wouldn't you fire someone working for you if they weren't doing their job? We have to look at it like it is. It truly is an employee, employer situation and we the patients are the employers in these situations. They are getting paid good money to HELP us, not tell us we aren't hurting. I wish you all the best. I hope you find a doc that is understanding and compassionate. Take care.
God Bless,
Sherry :wave: