Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 You sound like you have a great hubby!!! Get another doctor! This guy sounds like he doesn't even want to be bothered, so why waste any more time with him? I'd complain to the insurance company too. Many people go from doctor to doctor without making any complaint about how poorly they were treated and they so called professionals go on treating people as if nothing ever happened. Yes, the Arthritis Foundation has taken on FM to be treated usually by Rheumatologists, but their " support " seems to have waned in recent months. I belong to a FM support group and we were getting the newsletters from the Arthritis Foundation. In the past few newsletters, there has been little covered about FM and CFS. It infuriates me to hear about doctors like this....there are millions of people that suffer from these illnesses and there are doctors who act like this. This guy can't even remember what he told you the last time! I wish you luck in finding a doctor that hears you and knows how to treat your illness....and REMEMBERS what he said to you previously! Koala-t hugs, Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hello What a scenario….my goodness….you must be emotionally drained… A comment if you don’t mind….i was also told by a specialist that fibromyalgia exists only in the minds of doctors not smart enough to diagnose….i was stunned…and so I asked her what was wrong with me…”well I am not sure what it is” two years have passed since that comment and I still carry it with the weight of the world.. There is a strange somewhat bizarre mentality in my opinion about rheumatologists. I think they are very smart when something is easily diagnosed however, I think one has to keep in mind that these arthritic diseases are illusive gypsies that carry over into other arthritic diseases and some mimic the other. I have been told I have a virus, post viral syndrome, fibro, myofacial pain possibly MS which was ruled out with an MRI, for two years and nothing was done ..now it has gone to the points where I am growing nodes and a symmetrical pattern of joints being ruined. BUT what is even more curious is that my husband has the same symptoms for two years now also and he has also seen many specialists and just now got his diagnosis from a different rheumatologist as sero negative RA All blood work is normal but we have now been diagnosed with sero negative RA There are over 140 types of arthritis. What does your blood work tell you and what other tests have been done for you? Have you had a bone scan, what lab work and any negative results..what symptoms did you bring to him What is interesting here is the prescription for clinoril..which states the efficacy is for RA! Why did he prescribe that What tests has he done to rule out RA? Or another type of inflammatory arthritis? Have you had an ANA done or sed rate ??? Then he combines it with a drug to treat multiple schlerosis what is interesting is that MS and RA can mimic each other Clinoril, a nonsteroidal anti-inflammatory drug, is used to relieve the inflammation, swelling, stiffness, and joint pain associated with rheumatoid arthritis, osteoarthritis (the most common form of arthritis), and ankylosing spondylitis (stiffness and progressive arthritis of the spine). It is also used to treat bursitis, tendinitis, acute gouty arthritis, and other types of pain. The safety and effectiveness of this medication in the treatment of people with severe, incapacitating rheumatoid arthritis have not been established. DG DISPATCH - STROKE: Zanaflex Reduces Spasticity Resulting From Stroke By Cameron ston Special to DG News NEW ORLEANS, LA -- February 14, 2000 -- Zanaflex (tizanidine hydrochloride), which is currently used in the treatment of multiple sclerosis, has been found useful in treating patients who develop spastic limbs as a result of an acute cerebral infarct. Hope this helps, but I somehow feel it will add to your confusion Sincerely My visit to my rheumy I am very upset and frustrated. Have you ever felt like you are just totally ignored no matter how much you try to talk with someone? I went in this morning and his nurse asked how I was. I said I do not feel good and she said I look exhausted. I told her my symptoms, that they have been constant since April and that I have been having these off and on since summer 1999. Of course, this stuff was in my initial complaints to my GP, who told me it was a " virus " , then " lupus " and then he sent me to my rheumy. I showed the nurse all the papers I brought in, made it clear I did not want him to think I was being disrespectful---she said he would not think that, that he is open to suggestions and such from patients. Well, after he did his usual exam, he asked how things were from a few weeks ago. I started telling him about the symptoms and such, tried to show him what I found on the internet---he refused to look at any of it. He told me that CFS is not a disease---it is a complex set of symptoms and that when a physician cannot find an absolute cause, this is basically the catch all diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic tone, made a point of correcting me on it) and he said basically the same thing---symptoms with unknown cause so diagnosis of FM is given and that it also is " just symptoms " . I asked him what is wrong with me then---he said it is my cryoglobulinemia. Just a few weeks ago, he told me flat out that fatigue, brain fog, loss of short term memory and headaches are NOT from cryo. When I reminded him of this, he got very perturbed. I told him that I have gone on inactive status at work and that I am due to start back to school in 10 weeks---what can I do? He said he did not know and then prescribed me Clinoril and Zanflex (I think that is the name). He wants to see me in 6 weeks and wants me to go through another round of $700 worth of bloodwork, which I cannot afford (our insurance pays 70% of it but with me not working, it is too much of a financial strain). Needless to say, I am a little more than upset. I did not know whether to scream or cry. I called my husband at work and he wants me to call our insurance carrier and ask for a referral---this rheumy is the only one in our area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank God I have a supportive husband! Have any of you ever been told or heard that CFS and FM are not diseases? That is why I was surpised when someone said the Arthritis Foundation recognizes FM. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hello What a scenario….my goodness….you must be emotionally drained… A comment if you don’t mind….i was also told by a specialist that fibromyalgia exists only in the minds of doctors not smart enough to diagnose….i was stunned…and so I asked her what was wrong with me…”well I am not sure what it is” two years have passed since that comment and I still carry it with the weight of the world.. There is a strange somewhat bizarre mentality in my opinion about rheumatologists. I think they are very smart when something is easily diagnosed however, I think one has to keep in mind that these arthritic diseases are illusive gypsies that carry over into other arthritic diseases and some mimic the other. I have been told I have a virus, post viral syndrome, fibro, myofacial pain possibly MS which was ruled out with an MRI, for two years and nothing was done ..now it has gone to the points where I am growing nodes and a symmetrical pattern of joints being ruined. BUT what is even more curious is that my husband has the same symptoms for two years now also and he has also seen many specialists and just now got his diagnosis from a different rheumatologist as sero negative RA All blood work is normal but we have now been diagnosed with sero negative RA There are over 140 types of arthritis. What does your blood work tell you and what other tests have been done for you? Have you had a bone scan, what lab work and any negative results..what symptoms did you bring to him What is interesting here is the prescription for clinoril..which states the efficacy is for RA! Why did he prescribe that What tests has he done to rule out RA? Or another type of inflammatory arthritis? Have you had an ANA done or sed rate ??? Then he combines it with a drug to treat multiple schlerosis what is interesting is that MS and RA can mimic each other Clinoril, a nonsteroidal anti-inflammatory drug, is used to relieve the inflammation, swelling, stiffness, and joint pain associated with rheumatoid arthritis, osteoarthritis (the most common form of arthritis), and ankylosing spondylitis (stiffness and progressive arthritis of the spine). It is also used to treat bursitis, tendinitis, acute gouty arthritis, and other types of pain. The safety and effectiveness of this medication in the treatment of people with severe, incapacitating rheumatoid arthritis have not been established. DG DISPATCH - STROKE: Zanaflex Reduces Spasticity Resulting From Stroke By Cameron ston Special to DG News NEW ORLEANS, LA -- February 14, 2000 -- Zanaflex (tizanidine hydrochloride), which is currently used in the treatment of multiple sclerosis, has been found useful in treating patients who develop spastic limbs as a result of an acute cerebral infarct. Hope this helps, but I somehow feel it will add to your confusion Sincerely My visit to my rheumy I am very upset and frustrated. Have you ever felt like you are just totally ignored no matter how much you try to talk with someone? I went in this morning and his nurse asked how I was. I said I do not feel good and she said I look exhausted. I told her my symptoms, that they have been constant since April and that I have been having these off and on since summer 1999. Of course, this stuff was in my initial complaints to my GP, who told me it was a " virus " , then " lupus " and then he sent me to my rheumy. I showed the nurse all the papers I brought in, made it clear I did not want him to think I was being disrespectful---she said he would not think that, that he is open to suggestions and such from patients. Well, after he did his usual exam, he asked how things were from a few weeks ago. I started telling him about the symptoms and such, tried to show him what I found on the internet---he refused to look at any of it. He told me that CFS is not a disease---it is a complex set of symptoms and that when a physician cannot find an absolute cause, this is basically the catch all diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic tone, made a point of correcting me on it) and he said basically the same thing---symptoms with unknown cause so diagnosis of FM is given and that it also is " just symptoms " . I asked him what is wrong with me then---he said it is my cryoglobulinemia. Just a few weeks ago, he told me flat out that fatigue, brain fog, loss of short term memory and headaches are NOT from cryo. When I reminded him of this, he got very perturbed. I told him that I have gone on inactive status at work and that I am due to start back to school in 10 weeks---what can I do? He said he did not know and then prescribed me Clinoril and Zanflex (I think that is the name). He wants to see me in 6 weeks and wants me to go through another round of $700 worth of bloodwork, which I cannot afford (our insurance pays 70% of it but with me not working, it is too much of a financial strain). Needless to say, I am a little more than upset. I did not know whether to scream or cry. I called my husband at work and he wants me to call our insurance carrier and ask for a referral---this rheumy is the only one in our area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank God I have a supportive husband! Have any of you ever been told or heard that CFS and FM are not diseases? That is why I was surpised when someone said the Arthritis Foundation recognizes FM. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hello What a scenario….my goodness….you must be emotionally drained… A comment if you don’t mind….i was also told by a specialist that fibromyalgia exists only in the minds of doctors not smart enough to diagnose….i was stunned…and so I asked her what was wrong with me…”well I am not sure what it is” two years have passed since that comment and I still carry it with the weight of the world.. There is a strange somewhat bizarre mentality in my opinion about rheumatologists. I think they are very smart when something is easily diagnosed however, I think one has to keep in mind that these arthritic diseases are illusive gypsies that carry over into other arthritic diseases and some mimic the other. I have been told I have a virus, post viral syndrome, fibro, myofacial pain possibly MS which was ruled out with an MRI, for two years and nothing was done ..now it has gone to the points where I am growing nodes and a symmetrical pattern of joints being ruined. BUT what is even more curious is that my husband has the same symptoms for two years now also and he has also seen many specialists and just now got his diagnosis from a different rheumatologist as sero negative RA All blood work is normal but we have now been diagnosed with sero negative RA There are over 140 types of arthritis. What does your blood work tell you and what other tests have been done for you? Have you had a bone scan, what lab work and any negative results..what symptoms did you bring to him What is interesting here is the prescription for clinoril..which states the efficacy is for RA! Why did he prescribe that What tests has he done to rule out RA? Or another type of inflammatory arthritis? Have you had an ANA done or sed rate ??? Then he combines it with a drug to treat multiple schlerosis what is interesting is that MS and RA can mimic each other Clinoril, a nonsteroidal anti-inflammatory drug, is used to relieve the inflammation, swelling, stiffness, and joint pain associated with rheumatoid arthritis, osteoarthritis (the most common form of arthritis), and ankylosing spondylitis (stiffness and progressive arthritis of the spine). It is also used to treat bursitis, tendinitis, acute gouty arthritis, and other types of pain. The safety and effectiveness of this medication in the treatment of people with severe, incapacitating rheumatoid arthritis have not been established. DG DISPATCH - STROKE: Zanaflex Reduces Spasticity Resulting From Stroke By Cameron ston Special to DG News NEW ORLEANS, LA -- February 14, 2000 -- Zanaflex (tizanidine hydrochloride), which is currently used in the treatment of multiple sclerosis, has been found useful in treating patients who develop spastic limbs as a result of an acute cerebral infarct. Hope this helps, but I somehow feel it will add to your confusion Sincerely My visit to my rheumy I am very upset and frustrated. Have you ever felt like you are just totally ignored no matter how much you try to talk with someone? I went in this morning and his nurse asked how I was. I said I do not feel good and she said I look exhausted. I told her my symptoms, that they have been constant since April and that I have been having these off and on since summer 1999. Of course, this stuff was in my initial complaints to my GP, who told me it was a " virus " , then " lupus " and then he sent me to my rheumy. I showed the nurse all the papers I brought in, made it clear I did not want him to think I was being disrespectful---she said he would not think that, that he is open to suggestions and such from patients. Well, after he did his usual exam, he asked how things were from a few weeks ago. I started telling him about the symptoms and such, tried to show him what I found on the internet---he refused to look at any of it. He told me that CFS is not a disease---it is a complex set of symptoms and that when a physician cannot find an absolute cause, this is basically the catch all diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic tone, made a point of correcting me on it) and he said basically the same thing---symptoms with unknown cause so diagnosis of FM is given and that it also is " just symptoms " . I asked him what is wrong with me then---he said it is my cryoglobulinemia. Just a few weeks ago, he told me flat out that fatigue, brain fog, loss of short term memory and headaches are NOT from cryo. When I reminded him of this, he got very perturbed. I told him that I have gone on inactive status at work and that I am due to start back to school in 10 weeks---what can I do? He said he did not know and then prescribed me Clinoril and Zanflex (I think that is the name). He wants to see me in 6 weeks and wants me to go through another round of $700 worth of bloodwork, which I cannot afford (our insurance pays 70% of it but with me not working, it is too much of a financial strain). Needless to say, I am a little more than upset. I did not know whether to scream or cry. I called my husband at work and he wants me to call our insurance carrier and ask for a referral---this rheumy is the only one in our area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank God I have a supportive husband! Have any of you ever been told or heard that CFS and FM are not diseases? That is why I was surpised when someone said the Arthritis Foundation recognizes FM. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > , Sorry you had such a horrible visit. Yes, at one point or another, we have all heard CFS and Fibro are not diseases, it's all in our heads, it's psychosomatic, it's a reaction to stress, it's nothing but symptoms of something else(this last one doesn't bother me. As long as they're willing to treat the symptoms, who cares if they think it's not a disease in itself?). You are not alone. I would bet, that we have all at least once, cried at the doctors, or come home from the doctors and cried. It doesn't help that the vast majority of CFS and Fibro sufferers are female. Females tend to not be taken seriously by doctors. I went through such a fiasco with my doctor, that I was in the process of looking for another one, and only got my doctors help back by sending him a nasty letter. He hadn't realized until then that he had lost his wonderful bedside manner. He's now treating me, and we've actually gotten to the point where he's looking up info on Fibro. He doesn't really believe it exists, but he's starting to. And he treats my symptoms, and takes me seriously, so I can't complain. He's willing to try different medications, and he isn't ruling anything out. If your doctor was willing to do this, it wouldn't be so bad, but since he isn't, definitely find another doctor! Even if you have to go into Cleveland! Find a good doctor, and screw the travel. I travel quite far to both my doctor, and to my cats' vet. It's worth it to me to have good treatment. Hugs to you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > , Sorry you had such a horrible visit. Yes, at one point or another, we have all heard CFS and Fibro are not diseases, it's all in our heads, it's psychosomatic, it's a reaction to stress, it's nothing but symptoms of something else(this last one doesn't bother me. As long as they're willing to treat the symptoms, who cares if they think it's not a disease in itself?). You are not alone. I would bet, that we have all at least once, cried at the doctors, or come home from the doctors and cried. It doesn't help that the vast majority of CFS and Fibro sufferers are female. Females tend to not be taken seriously by doctors. I went through such a fiasco with my doctor, that I was in the process of looking for another one, and only got my doctors help back by sending him a nasty letter. He hadn't realized until then that he had lost his wonderful bedside manner. He's now treating me, and we've actually gotten to the point where he's looking up info on Fibro. He doesn't really believe it exists, but he's starting to. And he treats my symptoms, and takes me seriously, so I can't complain. He's willing to try different medications, and he isn't ruling anything out. If your doctor was willing to do this, it wouldn't be so bad, but since he isn't, definitely find another doctor! Even if you have to go into Cleveland! Find a good doctor, and screw the travel. I travel quite far to both my doctor, and to my cats' vet. It's worth it to me to have good treatment. Hugs to you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > , Sorry you had such a horrible visit. Yes, at one point or another, we have all heard CFS and Fibro are not diseases, it's all in our heads, it's psychosomatic, it's a reaction to stress, it's nothing but symptoms of something else(this last one doesn't bother me. As long as they're willing to treat the symptoms, who cares if they think it's not a disease in itself?). You are not alone. I would bet, that we have all at least once, cried at the doctors, or come home from the doctors and cried. It doesn't help that the vast majority of CFS and Fibro sufferers are female. Females tend to not be taken seriously by doctors. I went through such a fiasco with my doctor, that I was in the process of looking for another one, and only got my doctors help back by sending him a nasty letter. He hadn't realized until then that he had lost his wonderful bedside manner. He's now treating me, and we've actually gotten to the point where he's looking up info on Fibro. He doesn't really believe it exists, but he's starting to. And he treats my symptoms, and takes me seriously, so I can't complain. He's willing to try different medications, and he isn't ruling anything out. If your doctor was willing to do this, it wouldn't be so bad, but since he isn't, definitely find another doctor! Even if you have to go into Cleveland! Find a good doctor, and screw the travel. I travel quite far to both my doctor, and to my cats' vet. It's worth it to me to have good treatment. Hugs to you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 mboulis@... wrote: > > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? Oh yeah! The last rheumy I went to was suppose to be a fibro " specialist " . What he specialized was in putting his patients down and not listening. Any time I tried to ask a question he'd put me down with " I'm not finished yet " even though he'd be on another topic. Any time I tried to tell him something, he'd bring out " I'm the doctor here. " Much more to this horror story, but you get the general idea! > > He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . There are a lot of doctors out there who continue to say this kind of stuff even though fibro (and I think CFS as well) is an accepted disease with definite symptoms. There are starting to be studies being produced that can point to definite physical things wrong in the body, yet some doctors continue to spout words like these. Just because they don't know what causes it yet doesn't make it real. They aren't always sure what causes cancer, but that's considered " real " . When MS was first diagnosed, they said exactly the same kinds of things, and told the patients that it was all in their heads or they were making it up for attention, exactly what a lot of us get told. > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in our > area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank > God I have a supportive husband! I'm so glad to hear you have a supportive husband. I have one as well. I feel for those members whose families won't support them. I can only imagine how hard it is to fight fibro/cfs and families. I think you need to go to a different doctor even if it is in Cleveland. You aren't going to get the support you need from your current doctor. When a doctor stops listening, and starts being sarcastic with you, it's time to move on. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 mboulis@... wrote: > > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? Oh yeah! The last rheumy I went to was suppose to be a fibro " specialist " . What he specialized was in putting his patients down and not listening. Any time I tried to ask a question he'd put me down with " I'm not finished yet " even though he'd be on another topic. Any time I tried to tell him something, he'd bring out " I'm the doctor here. " Much more to this horror story, but you get the general idea! > > He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . There are a lot of doctors out there who continue to say this kind of stuff even though fibro (and I think CFS as well) is an accepted disease with definite symptoms. There are starting to be studies being produced that can point to definite physical things wrong in the body, yet some doctors continue to spout words like these. Just because they don't know what causes it yet doesn't make it real. They aren't always sure what causes cancer, but that's considered " real " . When MS was first diagnosed, they said exactly the same kinds of things, and told the patients that it was all in their heads or they were making it up for attention, exactly what a lot of us get told. > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in our > area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank > God I have a supportive husband! I'm so glad to hear you have a supportive husband. I have one as well. I feel for those members whose families won't support them. I can only imagine how hard it is to fight fibro/cfs and families. I think you need to go to a different doctor even if it is in Cleveland. You aren't going to get the support you need from your current doctor. When a doctor stops listening, and starts being sarcastic with you, it's time to move on. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 mboulis@... wrote: > > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? Oh yeah! The last rheumy I went to was suppose to be a fibro " specialist " . What he specialized was in putting his patients down and not listening. Any time I tried to ask a question he'd put me down with " I'm not finished yet " even though he'd be on another topic. Any time I tried to tell him something, he'd bring out " I'm the doctor here. " Much more to this horror story, but you get the general idea! > > He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . There are a lot of doctors out there who continue to say this kind of stuff even though fibro (and I think CFS as well) is an accepted disease with definite symptoms. There are starting to be studies being produced that can point to definite physical things wrong in the body, yet some doctors continue to spout words like these. Just because they don't know what causes it yet doesn't make it real. They aren't always sure what causes cancer, but that's considered " real " . When MS was first diagnosed, they said exactly the same kinds of things, and told the patients that it was all in their heads or they were making it up for attention, exactly what a lot of us get told. > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in our > area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank > God I have a supportive husband! I'm so glad to hear you have a supportive husband. I have one as well. I feel for those members whose families won't support them. I can only imagine how hard it is to fight fibro/cfs and families. I think you need to go to a different doctor even if it is in Cleveland. You aren't going to get the support you need from your current doctor. When a doctor stops listening, and starts being sarcastic with you, it's time to move on. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Find another doctor-- asap. And be sure to complain to the American Medical Association or your state's medical board. It's imperative that people remember that they are health care consumers NOT PATIENTS! Patient implies complacency. You wouldn't tolerate poor service at a restaurant or from a plumber-- don't take it from a doctor. They're just human beings and not the gods that people used to treat them as. I'm so very sorry that you were treated poorly. Perhaps there is a university medical center near you. Or could you travel to Mayo or s Hopkins? Your symptoms are very real. Don't let the creeps get to you. Their turn will come someday. I'm a registered nurse and I'm horrified at how I've been treated by the system that I was once part of. Use your experiences to make a difference. Please take a moment to email your local medical board or the AMA. Feel Better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Find another doctor-- asap. And be sure to complain to the American Medical Association or your state's medical board. It's imperative that people remember that they are health care consumers NOT PATIENTS! Patient implies complacency. You wouldn't tolerate poor service at a restaurant or from a plumber-- don't take it from a doctor. They're just human beings and not the gods that people used to treat them as. I'm so very sorry that you were treated poorly. Perhaps there is a university medical center near you. Or could you travel to Mayo or s Hopkins? Your symptoms are very real. Don't let the creeps get to you. Their turn will come someday. I'm a registered nurse and I'm horrified at how I've been treated by the system that I was once part of. Use your experiences to make a difference. Please take a moment to email your local medical board or the AMA. Feel Better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Find another doctor-- asap. And be sure to complain to the American Medical Association or your state's medical board. It's imperative that people remember that they are health care consumers NOT PATIENTS! Patient implies complacency. You wouldn't tolerate poor service at a restaurant or from a plumber-- don't take it from a doctor. They're just human beings and not the gods that people used to treat them as. I'm so very sorry that you were treated poorly. Perhaps there is a university medical center near you. Or could you travel to Mayo or s Hopkins? Your symptoms are very real. Don't let the creeps get to you. Their turn will come someday. I'm a registered nurse and I'm horrified at how I've been treated by the system that I was once part of. Use your experiences to make a difference. Please take a moment to email your local medical board or the AMA. Feel Better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi !! I have heard that before. Fibro is a name given to somebody with all the symptoms of fibro. The symptoms can come from different things, I think. I had a car accident and it all started. I wonder which blood tests your doctor would do? I went to my doctor, did a set a blood tests, and they basically told me there is nothing else they can test my blood for, that would cause my symptoms. I think that everybody who has fibro suffers from people with unexplained pain to be " diagnosed " with fibro. I think it is a catch all for some doctors. It gives a diagnosis, it is something that is accepted. And I also believe that this is why fibro is looked at as a " in your head " desease. When actually there are no definite answers no definite cure. I am glad your hubby is so supportive!! Go to a different doctor, somebody who is not rude!!! or mean!!! I don't know what cryo... is. Either way, this doctor does not have any reasonable suggestions!! my doctor tells me I do not have fibro or CFS. Honestly, I can accept that as long as he is treating my " myofacial pain " and " soft tissue injury " . HE would never call it fibro, but HE TREATS ME FOR WHAT IS WRONG. I just have a lot of the symptoms of fibro. Sometimes I wonder how many doctors don't know how to treat soft tissue injuries, like mine, and how many people just suffer and get worse because they are not being treated. I don't need the fibro diagnosis as much as I need treatment that helps. Treatment of the trigger points, headaches, cognative difficulties. And a lot of the treatment I have done helped. But before I found my doctor, I had several others who told me there is nothing else I can do. I will have to accept and move on. But I will never give up looking for treatment and it helped me a lot. I think different people have different things going on with their bodies. I believe there is fibro as well as CFS. I still think something is causing it and eventually somebody will figure it out. But I also believe that other things can cause for some people like me, to " have " fibro. Look for good doctors that want to find out how to help you best. The diagnosis " Fibro " does not ensure any better treatment. My doctor told me that the rhumy she knows treats fibro with medication, for pain and depression. That by itself does not help enough!!!!! Even if that doctor takes fibro serious. Most of all: don't take stupid people serious!!!! lol So, he is a doctor, and unfortunately it only means that he had a lot more student loans than me, but it does not mean that he is an open minded educated person. Good Luck, hang in there!!! Don't give up!! In a message dated 6/13/2002 10:13:55 AM Mountain Daylight Time, mboulis@... writes: > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? > > I went in this morning and his nurse asked how I was. I said I do not feel > good and she said I look exhausted. I told her my symptoms, that they have > been constant since April and that I have been having these off and on > since > summer 1999. Of course, this stuff was in my initial complaints to my GP, > who told me it was a " virus " , then " lupus " and then he sent me to my > rheumy. > I showed the nurse all the papers I brought in, made it clear I did not > want > him to think I was being disrespectful---she said he would not think that, > that he is open to suggestions and such from patients. > > Well, after he did his usual exam, he asked how things were from a few > weeks > ago. I started telling him about the symptoms and such, tried to show him > what I found on the internet---he refused to look at any of it. He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . I asked him what is wrong with me then---he said > it > is my cryoglobulinemia. Just a few weeks ago, he told me flat out that > fatigue, brain fog, loss of short term memory and headaches are NOT from > cryo. When I reminded him of this, he got very perturbed. > > I told him that I have gone on inactive status at work and that I am due to > start back to school in 10 weeks---what can I do? He said he did not know > and > then prescribed me Clinoril and Zanflex (I think that is the name). He > wants > to see me in 6 weeks and wants me to go through another round of $700 worth > of bloodwork, which I cannot afford (our insurance pays 70% of it but with > me not working, it is too much of a financial strain). > > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in > our > area. My husband said if needed, we'd go to Cleveland (65 miles away). > Thank > God I have a supportive husband! > > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi !! I have heard that before. Fibro is a name given to somebody with all the symptoms of fibro. The symptoms can come from different things, I think. I had a car accident and it all started. I wonder which blood tests your doctor would do? I went to my doctor, did a set a blood tests, and they basically told me there is nothing else they can test my blood for, that would cause my symptoms. I think that everybody who has fibro suffers from people with unexplained pain to be " diagnosed " with fibro. I think it is a catch all for some doctors. It gives a diagnosis, it is something that is accepted. And I also believe that this is why fibro is looked at as a " in your head " desease. When actually there are no definite answers no definite cure. I am glad your hubby is so supportive!! Go to a different doctor, somebody who is not rude!!! or mean!!! I don't know what cryo... is. Either way, this doctor does not have any reasonable suggestions!! my doctor tells me I do not have fibro or CFS. Honestly, I can accept that as long as he is treating my " myofacial pain " and " soft tissue injury " . HE would never call it fibro, but HE TREATS ME FOR WHAT IS WRONG. I just have a lot of the symptoms of fibro. Sometimes I wonder how many doctors don't know how to treat soft tissue injuries, like mine, and how many people just suffer and get worse because they are not being treated. I don't need the fibro diagnosis as much as I need treatment that helps. Treatment of the trigger points, headaches, cognative difficulties. And a lot of the treatment I have done helped. But before I found my doctor, I had several others who told me there is nothing else I can do. I will have to accept and move on. But I will never give up looking for treatment and it helped me a lot. I think different people have different things going on with their bodies. I believe there is fibro as well as CFS. I still think something is causing it and eventually somebody will figure it out. But I also believe that other things can cause for some people like me, to " have " fibro. Look for good doctors that want to find out how to help you best. The diagnosis " Fibro " does not ensure any better treatment. My doctor told me that the rhumy she knows treats fibro with medication, for pain and depression. That by itself does not help enough!!!!! Even if that doctor takes fibro serious. Most of all: don't take stupid people serious!!!! lol So, he is a doctor, and unfortunately it only means that he had a lot more student loans than me, but it does not mean that he is an open minded educated person. Good Luck, hang in there!!! Don't give up!! In a message dated 6/13/2002 10:13:55 AM Mountain Daylight Time, mboulis@... writes: > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? > > I went in this morning and his nurse asked how I was. I said I do not feel > good and she said I look exhausted. I told her my symptoms, that they have > been constant since April and that I have been having these off and on > since > summer 1999. Of course, this stuff was in my initial complaints to my GP, > who told me it was a " virus " , then " lupus " and then he sent me to my > rheumy. > I showed the nurse all the papers I brought in, made it clear I did not > want > him to think I was being disrespectful---she said he would not think that, > that he is open to suggestions and such from patients. > > Well, after he did his usual exam, he asked how things were from a few > weeks > ago. I started telling him about the symptoms and such, tried to show him > what I found on the internet---he refused to look at any of it. He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . I asked him what is wrong with me then---he said > it > is my cryoglobulinemia. Just a few weeks ago, he told me flat out that > fatigue, brain fog, loss of short term memory and headaches are NOT from > cryo. When I reminded him of this, he got very perturbed. > > I told him that I have gone on inactive status at work and that I am due to > start back to school in 10 weeks---what can I do? He said he did not know > and > then prescribed me Clinoril and Zanflex (I think that is the name). He > wants > to see me in 6 weeks and wants me to go through another round of $700 worth > of bloodwork, which I cannot afford (our insurance pays 70% of it but with > me not working, it is too much of a financial strain). > > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in > our > area. My husband said if needed, we'd go to Cleveland (65 miles away). > Thank > God I have a supportive husband! > > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi !! I have heard that before. Fibro is a name given to somebody with all the symptoms of fibro. The symptoms can come from different things, I think. I had a car accident and it all started. I wonder which blood tests your doctor would do? I went to my doctor, did a set a blood tests, and they basically told me there is nothing else they can test my blood for, that would cause my symptoms. I think that everybody who has fibro suffers from people with unexplained pain to be " diagnosed " with fibro. I think it is a catch all for some doctors. It gives a diagnosis, it is something that is accepted. And I also believe that this is why fibro is looked at as a " in your head " desease. When actually there are no definite answers no definite cure. I am glad your hubby is so supportive!! Go to a different doctor, somebody who is not rude!!! or mean!!! I don't know what cryo... is. Either way, this doctor does not have any reasonable suggestions!! my doctor tells me I do not have fibro or CFS. Honestly, I can accept that as long as he is treating my " myofacial pain " and " soft tissue injury " . HE would never call it fibro, but HE TREATS ME FOR WHAT IS WRONG. I just have a lot of the symptoms of fibro. Sometimes I wonder how many doctors don't know how to treat soft tissue injuries, like mine, and how many people just suffer and get worse because they are not being treated. I don't need the fibro diagnosis as much as I need treatment that helps. Treatment of the trigger points, headaches, cognative difficulties. And a lot of the treatment I have done helped. But before I found my doctor, I had several others who told me there is nothing else I can do. I will have to accept and move on. But I will never give up looking for treatment and it helped me a lot. I think different people have different things going on with their bodies. I believe there is fibro as well as CFS. I still think something is causing it and eventually somebody will figure it out. But I also believe that other things can cause for some people like me, to " have " fibro. Look for good doctors that want to find out how to help you best. The diagnosis " Fibro " does not ensure any better treatment. My doctor told me that the rhumy she knows treats fibro with medication, for pain and depression. That by itself does not help enough!!!!! Even if that doctor takes fibro serious. Most of all: don't take stupid people serious!!!! lol So, he is a doctor, and unfortunately it only means that he had a lot more student loans than me, but it does not mean that he is an open minded educated person. Good Luck, hang in there!!! Don't give up!! In a message dated 6/13/2002 10:13:55 AM Mountain Daylight Time, mboulis@... writes: > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? > > I went in this morning and his nurse asked how I was. I said I do not feel > good and she said I look exhausted. I told her my symptoms, that they have > been constant since April and that I have been having these off and on > since > summer 1999. Of course, this stuff was in my initial complaints to my GP, > who told me it was a " virus " , then " lupus " and then he sent me to my > rheumy. > I showed the nurse all the papers I brought in, made it clear I did not > want > him to think I was being disrespectful---she said he would not think that, > that he is open to suggestions and such from patients. > > Well, after he did his usual exam, he asked how things were from a few > weeks > ago. I started telling him about the symptoms and such, tried to show him > what I found on the internet---he refused to look at any of it. He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . I asked him what is wrong with me then---he said > it > is my cryoglobulinemia. Just a few weeks ago, he told me flat out that > fatigue, brain fog, loss of short term memory and headaches are NOT from > cryo. When I reminded him of this, he got very perturbed. > > I told him that I have gone on inactive status at work and that I am due to > start back to school in 10 weeks---what can I do? He said he did not know > and > then prescribed me Clinoril and Zanflex (I think that is the name). He > wants > to see me in 6 weeks and wants me to go through another round of $700 worth > of bloodwork, which I cannot afford (our insurance pays 70% of it but with > me not working, it is too much of a financial strain). > > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in > our > area. My husband said if needed, we'd go to Cleveland (65 miles away). > Thank > God I have a supportive husband! > > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 " And I am paying the doctor's salary, therefore I am the customer and to be treated with respect!!! " I am much more cranky when I'm in pain, much more outspoken. Taking shit from anybody is not in my job description. This attitude does come in handy at times like this. But I am working on patience, people management skills and tact lol you can't have it all!!! :-) One doctor made me cry once, that's when I decided that I will not ever have another doctor I don't like. You are all special and deserve to be treated that way!! Don't let anybody tell you otherwise! (Do unto others as you would have them do unto you) In a message dated 6/13/2002 12:29:15 PM Mountain Daylight Time, catstamp@... writes: > I'm not finished yet " even though he'd be on another topic. Any time I > tried to tell him something, he'd bring out " I'm the doctor here. " Much > more to this horror story, but you get the general idea! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 " And I am paying the doctor's salary, therefore I am the customer and to be treated with respect!!! " I am much more cranky when I'm in pain, much more outspoken. Taking shit from anybody is not in my job description. This attitude does come in handy at times like this. But I am working on patience, people management skills and tact lol you can't have it all!!! :-) One doctor made me cry once, that's when I decided that I will not ever have another doctor I don't like. You are all special and deserve to be treated that way!! Don't let anybody tell you otherwise! (Do unto others as you would have them do unto you) In a message dated 6/13/2002 12:29:15 PM Mountain Daylight Time, catstamp@... writes: > I'm not finished yet " even though he'd be on another topic. Any time I > tried to tell him something, he'd bring out " I'm the doctor here. " Much > more to this horror story, but you get the general idea! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 " And I am paying the doctor's salary, therefore I am the customer and to be treated with respect!!! " I am much more cranky when I'm in pain, much more outspoken. Taking shit from anybody is not in my job description. This attitude does come in handy at times like this. But I am working on patience, people management skills and tact lol you can't have it all!!! :-) One doctor made me cry once, that's when I decided that I will not ever have another doctor I don't like. You are all special and deserve to be treated that way!! Don't let anybody tell you otherwise! (Do unto others as you would have them do unto you) In a message dated 6/13/2002 12:29:15 PM Mountain Daylight Time, catstamp@... writes: > I'm not finished yet " even though he'd be on another topic. Any time I > tried to tell him something, he'd bring out " I'm the doctor here. " Much > more to this horror story, but you get the general idea! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi I am so in agreement with this..i know being in Canada that I advocate via my canadian arthritis society and members of parliament and we slowly move things to the patients bill of rights.. Maybe the american chapter http://www.arthritis.org/advocacy/default.asp can give you a place to become an advocate within your local community..there is a ton of articles on fibro in there. It is interesting that via my local chapter I attent seminars put on by local rheumatologists…listening to the rheumatologists giving their speeches it is so very interesting to see how frustrated they are with the government holding them up with treatments they know can help. I truly had my eyes open when I saw the number of hours they spend advocating also. Maybe your local chapters can give you some insight also One of the speakers talked about the new treatments that are happening and they are excited about the milieu of new drugs for us. It seems that the more we advocate the more the drug companies do try to find answers…and don’t be a victim of a bad doctor. We have a 800 help line and they are ever so helpful with information. They advise on new treatments, where in the protocols certain doctors work from and who is doing what research so you can maybe get into a clinical trial.. The more we speak the more we are heard.. Oh dear I am sorry I did not mean to sound heavy handed here…just so very frustrated also Sincerely Re: My visit to my rheumy Find another doctor-- asap. And be sure to complain to the American Medical Association or your state's medical board. It's imperative that people remember that they are health care consumers NOT PATIENTS! Patient implies complacency. You wouldn't tolerate poor service at a restaurant or from a plumber-- don't take it from a doctor. They're just human beings and not the gods that people used to treat them as. I'm so very sorry that you were treated poorly. Perhaps there is a university medical center near you. Or could you travel to Mayo or s Hopkins? Your symptoms are very real. Don't let the creeps get to you. Their turn will come someday. I'm a registered nurse and I'm horrified at how I've been treated by the system that I was once part of. Use your experiences to make a difference. Please take a moment to email your local medical board or the AMA. Feel Better! SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi I am so in agreement with this..i know being in Canada that I advocate via my canadian arthritis society and members of parliament and we slowly move things to the patients bill of rights.. Maybe the american chapter http://www.arthritis.org/advocacy/default.asp can give you a place to become an advocate within your local community..there is a ton of articles on fibro in there. It is interesting that via my local chapter I attent seminars put on by local rheumatologists…listening to the rheumatologists giving their speeches it is so very interesting to see how frustrated they are with the government holding them up with treatments they know can help. I truly had my eyes open when I saw the number of hours they spend advocating also. Maybe your local chapters can give you some insight also One of the speakers talked about the new treatments that are happening and they are excited about the milieu of new drugs for us. It seems that the more we advocate the more the drug companies do try to find answers…and don’t be a victim of a bad doctor. We have a 800 help line and they are ever so helpful with information. They advise on new treatments, where in the protocols certain doctors work from and who is doing what research so you can maybe get into a clinical trial.. The more we speak the more we are heard.. Oh dear I am sorry I did not mean to sound heavy handed here…just so very frustrated also Sincerely Re: My visit to my rheumy Find another doctor-- asap. And be sure to complain to the American Medical Association or your state's medical board. It's imperative that people remember that they are health care consumers NOT PATIENTS! Patient implies complacency. You wouldn't tolerate poor service at a restaurant or from a plumber-- don't take it from a doctor. They're just human beings and not the gods that people used to treat them as. I'm so very sorry that you were treated poorly. Perhaps there is a university medical center near you. Or could you travel to Mayo or s Hopkins? Your symptoms are very real. Don't let the creeps get to you. Their turn will come someday. I'm a registered nurse and I'm horrified at how I've been treated by the system that I was once part of. Use your experiences to make a difference. Please take a moment to email your local medical board or the AMA. Feel Better! SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 I can understand your frustration. I was concerned about the stigma attached to Fibromyalgia when my rheumatologist diagnosed me. My friend who just graduated from med school said that I may not want to go around announcing that I have it because a lot of doctor will think that you are crazy or will question how you came about this diagnosis. I still am not confortable with having fibro and wish that is was something else but not the " crazy " persons disease. I even a little nervous when I read about the depression aspects of it and how antidepressants are commonly prescibed for it. It is almost like we have to hide or hold our heads in shame because of the stigma attached to it. Sheshe > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? > > I went in this morning and his nurse asked how I was. I said I do not feel > good and she said I look exhausted. I told her my symptoms, that they have > been constant since April and that I have been having these off and on since > summer 1999. Of course, this stuff was in my initial complaints to my GP, > who told me it was a " virus " , then " lupus " and then he sent me to my rheumy. > I showed the nurse all the papers I brought in, made it clear I did not want > him to think I was being disrespectful---she said he would not think that, > that he is open to suggestions and such from patients. > > Well, after he did his usual exam, he asked how things were from a few weeks > ago. I started telling him about the symptoms and such, tried to show him > what I found on the internet---he refused to look at any of it. He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . I asked him what is wrong with me then--- he said it > is my cryoglobulinemia. Just a few weeks ago, he told me flat out that > fatigue, brain fog, loss of short term memory and headaches are NOT from > cryo. When I reminded him of this, he got very perturbed. > > I told him that I have gone on inactive status at work and that I am due to > start back to school in 10 weeks---what can I do? He said he did not know and > then prescribed me Clinoril and Zanflex (I think that is the name). He wants > to see me in 6 weeks and wants me to go through another round of $700 worth > of bloodwork, which I cannot afford (our insurance pays 70% of it but with > me not working, it is too much of a financial strain). > > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in our > area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank > God I have a supportive husband! > > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 I can understand your frustration. I was concerned about the stigma attached to Fibromyalgia when my rheumatologist diagnosed me. My friend who just graduated from med school said that I may not want to go around announcing that I have it because a lot of doctor will think that you are crazy or will question how you came about this diagnosis. I still am not confortable with having fibro and wish that is was something else but not the " crazy " persons disease. I even a little nervous when I read about the depression aspects of it and how antidepressants are commonly prescibed for it. It is almost like we have to hide or hold our heads in shame because of the stigma attached to it. Sheshe > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? > > I went in this morning and his nurse asked how I was. I said I do not feel > good and she said I look exhausted. I told her my symptoms, that they have > been constant since April and that I have been having these off and on since > summer 1999. Of course, this stuff was in my initial complaints to my GP, > who told me it was a " virus " , then " lupus " and then he sent me to my rheumy. > I showed the nurse all the papers I brought in, made it clear I did not want > him to think I was being disrespectful---she said he would not think that, > that he is open to suggestions and such from patients. > > Well, after he did his usual exam, he asked how things were from a few weeks > ago. I started telling him about the symptoms and such, tried to show him > what I found on the internet---he refused to look at any of it. He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . I asked him what is wrong with me then--- he said it > is my cryoglobulinemia. Just a few weeks ago, he told me flat out that > fatigue, brain fog, loss of short term memory and headaches are NOT from > cryo. When I reminded him of this, he got very perturbed. > > I told him that I have gone on inactive status at work and that I am due to > start back to school in 10 weeks---what can I do? He said he did not know and > then prescribed me Clinoril and Zanflex (I think that is the name). He wants > to see me in 6 weeks and wants me to go through another round of $700 worth > of bloodwork, which I cannot afford (our insurance pays 70% of it but with > me not working, it is too much of a financial strain). > > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in our > area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank > God I have a supportive husband! > > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 I can understand your frustration. I was concerned about the stigma attached to Fibromyalgia when my rheumatologist diagnosed me. My friend who just graduated from med school said that I may not want to go around announcing that I have it because a lot of doctor will think that you are crazy or will question how you came about this diagnosis. I still am not confortable with having fibro and wish that is was something else but not the " crazy " persons disease. I even a little nervous when I read about the depression aspects of it and how antidepressants are commonly prescibed for it. It is almost like we have to hide or hold our heads in shame because of the stigma attached to it. Sheshe > I am very upset and frustrated. Have you ever felt like you are just totally > ignored no matter how much you try to talk with someone? > > I went in this morning and his nurse asked how I was. I said I do not feel > good and she said I look exhausted. I told her my symptoms, that they have > been constant since April and that I have been having these off and on since > summer 1999. Of course, this stuff was in my initial complaints to my GP, > who told me it was a " virus " , then " lupus " and then he sent me to my rheumy. > I showed the nurse all the papers I brought in, made it clear I did not want > him to think I was being disrespectful---she said he would not think that, > that he is open to suggestions and such from patients. > > Well, after he did his usual exam, he asked how things were from a few weeks > ago. I started telling him about the symptoms and such, tried to show him > what I found on the internet---he refused to look at any of it. He told me > that CFS is not a disease---it is a complex set of symptoms and that when a > physician cannot find an absolute cause, this is basically the catch all > diagnosis. I mentioned FM (which I pronounced wrong and he, in a sarcastic > tone, made a point of correcting me on it) and he said basically the same > thing---symptoms with unknown cause so diagnosis of FM is given and that it > also is " just symptoms " . I asked him what is wrong with me then--- he said it > is my cryoglobulinemia. Just a few weeks ago, he told me flat out that > fatigue, brain fog, loss of short term memory and headaches are NOT from > cryo. When I reminded him of this, he got very perturbed. > > I told him that I have gone on inactive status at work and that I am due to > start back to school in 10 weeks---what can I do? He said he did not know and > then prescribed me Clinoril and Zanflex (I think that is the name). He wants > to see me in 6 weeks and wants me to go through another round of $700 worth > of bloodwork, which I cannot afford (our insurance pays 70% of it but with > me not working, it is too much of a financial strain). > > Needless to say, I am a little more than upset. I did not know whether to > scream or cry. I called my husband at work and he wants me to call our > insurance carrier and ask for a referral---this rheumy is the only one in our > area. My husband said if needed, we'd go to Cleveland (65 miles away). Thank > God I have a supportive husband! > > Have any of you ever been told or heard that CFS and FM are not diseases? > That is why I was surpised when someone said the Arthritis Foundation > recognizes FM. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 wrote: >Have any of you ever been told or heard that CFS and FM are not diseases? >That is why I was surpised when someone said the Arthritis Foundation >recognizes FM. I'm sorry I didn't make myself clear. YES, they recognize fibromyalgia as a syndrome, but NOT as a disease. It doesn't make a whole lot of difference to those who have it, though. I didn't say that they recognize CFS.....unfortunately. They consider it a " pain syndrome " ....And they've discovered that there are definite chemical changes in the brain that causes your body not to react to pain the same way as " normal " people. I hate pharmaceutical drugs, but I'm taking Zanaflex, and it helps. It's a muscle relaxant that you take before bed at night. When I take it, I sleep all the way through, and do feel better the next day. I can only take 1/4 of a pill, though, because otherwise, it's too much, and I'm zonked the whole next day. The doctor warned me about this, and said that some people can't take it at all. Why not see if you can get a few samples to try? All doctors are not good....I've seen 50+ in the last fifteen years, and have finally found one that knows about fibromyalgia. If they're already made a diagnosis, though, you won't be able to change their minds. The first rheum. I saw was 15 years ago, and he did diagnose me. At that time, though, they knew nothing about the syndrome. Now they know lots more, but you have to find a doctor that's kept up with it. Before you go to a new one, ask the nurse/receptionist if the doctor treats fibromyalgia... And really, what difference does it make what they call it? Disease or syndrome, we all know we have the symptoms...And since there's no cure right now, the only thing you can do is alleviate the symptoms. Hope this helps... Bobbi C. ----------- Quote Link to comment Share on other sites More sharing options...
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