Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Hey everyone, Thanks for the supportive statements. I am going crazy. My doctor did put me on prednisone for now, which is helping quite a bit, but not as well as it helps my brother. I have not seen a rheumy. There is only one of them in the state here in AK and I get the impression he isn't worth much. I will probably have to go outside to find one. I just feel like such a jerk complaining so much when nothing shows up in any tests. The only thing I know for sure is I have Raynaud's syndrome, have all my life. Its so damn frustrating. Not working is not an option. I am trying to go back to school so I can change my work to something more manageable, but that will take several years at least. I have to work. I am a flight nurse right now, and also work the ER. I don't know what I'll do if I can't work. I'm on my own and need my income. Does anyone know of any genetic connections to this stuff? Would it be really odd for my brother my myself to have it? I am male also by the way. Thanks again for the support. I am still searching for information, any information that might help figure this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Hey everyone, Thanks for the supportive statements. I am going crazy. My doctor did put me on prednisone for now, which is helping quite a bit, but not as well as it helps my brother. I have not seen a rheumy. There is only one of them in the state here in AK and I get the impression he isn't worth much. I will probably have to go outside to find one. I just feel like such a jerk complaining so much when nothing shows up in any tests. The only thing I know for sure is I have Raynaud's syndrome, have all my life. Its so damn frustrating. Not working is not an option. I am trying to go back to school so I can change my work to something more manageable, but that will take several years at least. I have to work. I am a flight nurse right now, and also work the ER. I don't know what I'll do if I can't work. I'm on my own and need my income. Does anyone know of any genetic connections to this stuff? Would it be really odd for my brother my myself to have it? I am male also by the way. Thanks again for the support. I am still searching for information, any information that might help figure this out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 , I'm sorry you're having such problems with a diagnosis. I know it is frustrating. Have you checked the ACR site to see where the nearest rheumy is? http://www.rheumatology.org/directory/geo.asp Have you had any x-rays of the joints that are hurting to see if there is any erosion? An MRI is more accurate and will show damage that is not visible on x-ray. Fibromyalgia causes widespread muscle and tendon pain as well as fatigue. http://www.fmaware.org/fminfo/brochure.htm Does your brother have abnormal lab tests? a On Jul 20, 2005, at 8:10 AM, wrote: > Hey everyone, >      Thanks for the supportive statements. I am going crazy. My > doctor > did put me on prednisone for now, which is helping quite a bit, but > not > as well as it helps my brother. >      I have not seen a rheumy. There is only one of them in the > state here > in AK and I get the impression he isn't worth much. I will probably > have to go outside to find one. I just feel like such a jerk > complaining so much when nothing shows up in any tests. The only > thing > I know for sure is I have Raynaud's syndrome, have all my life. Its > so > damn frustrating. >      Not working is not an option. I am trying to go back to school > so I > can change my work to something more manageable, but that will take > several years at least. I have to work. I am a flight nurse right > now, and also work the ER. I don't know what I'll do if I can't > work. > I'm on my own and need my income. >      Does anyone know of any genetic connections to this stuff? > Would it > be really odd for my brother my myself to have it? I am male also by > the way. >      Thanks again for the support. I am still searching for > information, > any information that might help figure this out. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 , I'm sorry you're having such problems with a diagnosis. I know it is frustrating. Have you checked the ACR site to see where the nearest rheumy is? http://www.rheumatology.org/directory/geo.asp Have you had any x-rays of the joints that are hurting to see if there is any erosion? An MRI is more accurate and will show damage that is not visible on x-ray. Fibromyalgia causes widespread muscle and tendon pain as well as fatigue. http://www.fmaware.org/fminfo/brochure.htm Does your brother have abnormal lab tests? a On Jul 20, 2005, at 8:10 AM, wrote: > Hey everyone, >      Thanks for the supportive statements. I am going crazy. My > doctor > did put me on prednisone for now, which is helping quite a bit, but > not > as well as it helps my brother. >      I have not seen a rheumy. There is only one of them in the > state here > in AK and I get the impression he isn't worth much. I will probably > have to go outside to find one. I just feel like such a jerk > complaining so much when nothing shows up in any tests. The only > thing > I know for sure is I have Raynaud's syndrome, have all my life. Its > so > damn frustrating. >      Not working is not an option. I am trying to go back to school > so I > can change my work to something more manageable, but that will take > several years at least. I have to work. I am a flight nurse right > now, and also work the ER. I don't know what I'll do if I can't > work. > I'm on my own and need my income. >      Does anyone know of any genetic connections to this stuff? > Would it > be really odd for my brother my myself to have it? I am male also by > the way. >      Thanks again for the support. I am still searching for > information, > any information that might help figure this out. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 a, I think the nearest rheumy is in Anchorage, but I get the impression he isn't worth much. After that would be Seattle most likely. My doc will probably want to send me to see someone soon. I have had xrays and MRI of one knee that got real troublesome a couple years ago. They saw torn meniscus and did arthroscopic surgery on it, which made it a zillion times worse. The knee was so eroded and full of bone spurs and lacking in cartilage there was nothing he could do with it. I now have to wear a brace on it to do most anything and it hurst constantly, and swells more recently I have thought about fibromyalgia, but again, no one wants to diagnose that. My brother does not have any abnormal lab results. He said the only thing they saw on him was one time one test came back showing inflammation. He wasn't sure if it was blood or joint fluid they had tested. Does anyone know a rheumy in Portland OR? I have friends there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 a, I think the nearest rheumy is in Anchorage, but I get the impression he isn't worth much. After that would be Seattle most likely. My doc will probably want to send me to see someone soon. I have had xrays and MRI of one knee that got real troublesome a couple years ago. They saw torn meniscus and did arthroscopic surgery on it, which made it a zillion times worse. The knee was so eroded and full of bone spurs and lacking in cartilage there was nothing he could do with it. I now have to wear a brace on it to do most anything and it hurst constantly, and swells more recently I have thought about fibromyalgia, but again, no one wants to diagnose that. My brother does not have any abnormal lab results. He said the only thing they saw on him was one time one test came back showing inflammation. He wasn't sure if it was blood or joint fluid they had tested. Does anyone know a rheumy in Portland OR? I have friends there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 What did the doctor say your knee erosion was from? Erosive changes of bone is a symptom of RA. Is your sed rate and C-reactive protein normal? It may be worth it to go to the Mayo Clinic. It's important to find out what is going on so you can prevent any damage. a On Jul 20, 2005, at 10:19 PM, wrote: > a, > I think the nearest rheumy is in Anchorage, but I get the > impression > he isn't worth much. After that would be Seattle most likely. My doc > will probably want to send me to see someone soon. > I have had xrays and MRI of one knee that got real troublesome a > couple years ago. They saw torn meniscus and did arthroscopic surgery > on it, which made it a zillion times worse. The knee was so eroded > and > full of bone spurs and lacking in cartilage there was nothing he could > do with it. I now have to wear a brace on it to do most anything and > it hurst constantly, and swells more recently > I have thought about fibromyalgia, but again, no one wants to > diagnose > that. > My brother does not have any abnormal lab results. He said the > only > thing they saw on him was one time one test came back showing > inflammation. He wasn't sure if it was blood or joint fluid they had > tested. > Does anyone know a rheumy in Portland OR? I have friends there. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 What did the doctor say your knee erosion was from? Erosive changes of bone is a symptom of RA. Is your sed rate and C-reactive protein normal? It may be worth it to go to the Mayo Clinic. It's important to find out what is going on so you can prevent any damage. a On Jul 20, 2005, at 10:19 PM, wrote: > a, > I think the nearest rheumy is in Anchorage, but I get the > impression > he isn't worth much. After that would be Seattle most likely. My doc > will probably want to send me to see someone soon. > I have had xrays and MRI of one knee that got real troublesome a > couple years ago. They saw torn meniscus and did arthroscopic surgery > on it, which made it a zillion times worse. The knee was so eroded > and > full of bone spurs and lacking in cartilage there was nothing he could > do with it. I now have to wear a brace on it to do most anything and > it hurst constantly, and swells more recently > I have thought about fibromyalgia, but again, no one wants to > diagnose > that. > My brother does not have any abnormal lab results. He said the > only > thing they saw on him was one time one test came back showing > inflammation. He wasn't sure if it was blood or joint fluid they had > tested. > Does anyone know a rheumy in Portland OR? I have friends there. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 a, The doc really didn't say what all the damage was from. Just generic arthritis. But the joint is toast. He says the only thing that will help it is joint replacement and I'm too young for that. My ESR and CRP are negative, same as my brother. I am a very long way from the Mayo Clinic. I'm in Alaska. Last night was really bad for some reason. The pain flared horribly and by this morning I could not straighten the right knee without terrible pain. This afternoon it has subsided again, but I am beyond frustrated and depressed. I can't do anything. I'm afraid it will make it all worse. And I love outdoors activity. This is killing me. ITs a gorgeous day and I would love to go out in the mountains hiking, but I can't. This totally sucks. I know you've all been there are going through similar things. It is hard for me to believe, as an RN, that help is so difficult to get for these problems. I am just staggered by that. And the more I try to research on the net, the more frustrated I get. There are so many different diseases out there and no way to pin it down. This is not a good day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 a, The doc really didn't say what all the damage was from. Just generic arthritis. But the joint is toast. He says the only thing that will help it is joint replacement and I'm too young for that. My ESR and CRP are negative, same as my brother. I am a very long way from the Mayo Clinic. I'm in Alaska. Last night was really bad for some reason. The pain flared horribly and by this morning I could not straighten the right knee without terrible pain. This afternoon it has subsided again, but I am beyond frustrated and depressed. I can't do anything. I'm afraid it will make it all worse. And I love outdoors activity. This is killing me. ITs a gorgeous day and I would love to go out in the mountains hiking, but I can't. This totally sucks. I know you've all been there are going through similar things. It is hard for me to believe, as an RN, that help is so difficult to get for these problems. I am just staggered by that. And the more I try to research on the net, the more frustrated I get. There are so many different diseases out there and no way to pin it down. This is not a good day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2005 Report Share Posted July 22, 2005 Alaska? Yikes! You ARE a long way from the Mayo. Can I ask you how old you were when you had the knee surgery that showed all the erosion? It is interesting that prednisone helps both of you. Prednisone is an anti-inflammatory and relieves pain by reducing inflammation, yet neither of you has inflammation. I know it's frustrating and depressing. Before I had my knees replaced, the pain and limited mobility was awful. My knees now are almost pain free. If my ankles weren't so bad, I could probably hike and ski again. My girlfriend is 54 and had osteoarthritis in her knee from prior injuries. She had it replaced and is skiing again. You may not be at this point, but at least these options exist. You may have to travel to get help, but it may be well worth it to find out what is going on and get some relief. a On Jul 21, 2005, at 10:34 PM, wrote: a, >      The doc really didn't say what all the damage was from. Just > generic > arthritis. But the joint is toast. He says the only thing that will > help it is joint replacement and I'm too young for that. >      My ESR and CRP are negative, same as my brother. >      I am a very long way from the Mayo Clinic. I'm in Alaska. > >      Last night was really bad for some reason. The pain flared > horribly > and by this morning I could not straighten the right knee without > terrible pain. This afternoon it has subsided again, but I am beyond > frustrated and depressed. I can't do anything. I'm afraid it will > make it all worse. And I love outdoors activity. This is killing > me. > ITs a gorgeous day and I would love to go out in the mountains hiking, > but I can't. This totally sucks. I know you've all been there are > going through similar things. It is hard for me to believe, as an RN, > that help is so difficult to get for these problems. I am just > staggered by that. And the more I try to research on the net, the > more > frustrated I get. There are so many different diseases out there and > no way to pin it down. This is not a good day. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2005 Report Share Posted July 22, 2005 Alaska? Yikes! You ARE a long way from the Mayo. Can I ask you how old you were when you had the knee surgery that showed all the erosion? It is interesting that prednisone helps both of you. Prednisone is an anti-inflammatory and relieves pain by reducing inflammation, yet neither of you has inflammation. I know it's frustrating and depressing. Before I had my knees replaced, the pain and limited mobility was awful. My knees now are almost pain free. If my ankles weren't so bad, I could probably hike and ski again. My girlfriend is 54 and had osteoarthritis in her knee from prior injuries. She had it replaced and is skiing again. You may not be at this point, but at least these options exist. You may have to travel to get help, but it may be well worth it to find out what is going on and get some relief. a On Jul 21, 2005, at 10:34 PM, wrote: a, >      The doc really didn't say what all the damage was from. Just > generic > arthritis. But the joint is toast. He says the only thing that will > help it is joint replacement and I'm too young for that. >      My ESR and CRP are negative, same as my brother. >      I am a very long way from the Mayo Clinic. I'm in Alaska. > >      Last night was really bad for some reason. The pain flared > horribly > and by this morning I could not straighten the right knee without > terrible pain. This afternoon it has subsided again, but I am beyond > frustrated and depressed. I can't do anything. I'm afraid it will > make it all worse. And I love outdoors activity. This is killing > me. > ITs a gorgeous day and I would love to go out in the mountains hiking, > but I can't. This totally sucks. I know you've all been there are > going through similar things. It is hard for me to believe, as an RN, > that help is so difficult to get for these problems. I am just > staggered by that. And the more I try to research on the net, the > more > frustrated I get. There are so many different diseases out there and > no way to pin it down. This is not a good day. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 a, I am 46, had the knee surgery when I was 44. The erosion in the joints started in my twenties, least that is when i started having pain and noticing the grating noises from the knees. As for inflammation, I think both my brother and I do have it. We both get swelling in our knees, and he said when they tested the synovial fluid in his knee it did show inflammation. We just don't have positive blood work. My knees swell also, the one that had surgery much more than the other. My fingers are usually swollen when i get up in the morning. As for joint replacements, the ortho doc said that is the only thing that will help my knee, but I am too young to do it. And, the prednisone, I'm not sure anymore. It seemed to help me at first, but now I am hurting so much again and I'm just not sure. I'm on a low dose and that could be the problem, but the stuff makes me go into a rage if i take higher doses. Last few days, people seem to be reacting to me as if I'm just whining and my pain is just normal aging stuff. I'm so frustrated and depressed. I know something is wrong with me. I can barely get through a work shift, I'm so exhausted. My life is going down the toilet and I can't get any help. The more I try to figure it out, the more confused I get. I just want to crawl in a hole and die. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 a, I am 46, had the knee surgery when I was 44. The erosion in the joints started in my twenties, least that is when i started having pain and noticing the grating noises from the knees. As for inflammation, I think both my brother and I do have it. We both get swelling in our knees, and he said when they tested the synovial fluid in his knee it did show inflammation. We just don't have positive blood work. My knees swell also, the one that had surgery much more than the other. My fingers are usually swollen when i get up in the morning. As for joint replacements, the ortho doc said that is the only thing that will help my knee, but I am too young to do it. And, the prednisone, I'm not sure anymore. It seemed to help me at first, but now I am hurting so much again and I'm just not sure. I'm on a low dose and that could be the problem, but the stuff makes me go into a rage if i take higher doses. Last few days, people seem to be reacting to me as if I'm just whining and my pain is just normal aging stuff. I'm so frustrated and depressed. I know something is wrong with me. I can barely get through a work shift, I'm so exhausted. My life is going down the toilet and I can't get any help. The more I try to figure it out, the more confused I get. I just want to crawl in a hole and die. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 , Erosion is NOT normal for anyone in their 20's. It is NOT a part of normal aging. I get enraged when I hear of doctors refusing joint replacements based on age. We have a member here that had her first joint replacement at 13! So I guess you're supposed to be in a wheelchair for several years waiting until that magic age before they will consider it? I had my knees replaced when I was 42 and it was the best thing I ever did. I had a second opinion, who based the timing of joint replacement to be when you couldn't stand the pain anymore. He told me I would know when it was time. He was right. Do you have another ortho that you can consult? I know it's frustrating trying to figure it out. I've been trying to do the same thing for more years than I care to think about. We're not doctors and it's not up to us to figure it out. That is why we go to doctors. Unfortunately you live in an area where you don't have many choices. Many of our members are in remote areas and have to travel hours away for medical care. I feel so bad for those in that situation. But getting the right diagnosis and treatment can make all the difference in the world in quality of life, and is worth it. It's even more frustrating that those around you are clueless. I never wanted to wish evil on those that don't get it, but in the last year I've had several people close to me have joint pain for various reasons, and every one of them ask me how I put up with it. My answer is always the same - What choice do I have? There have been times in my life that I wondered how I got through the day, fearful of what lies ahead. Joint replacements and medication has made my life better than ever, and I have faith that the future will bring more help for us all. The only hope I see for you is to find a way to get to doctors that are good and will find out what is going on with you. a On Jul 23, 2005, at 10:22 PM, wrote: a, >      I am 46, had the knee surgery when I was 44. The erosion in the > joints started in my twenties, least that is when i started having > pain > and noticing the grating noises from the knees. >      As for inflammation, I think both my brother and I do have it. > We > both get swelling in our knees, and he said when they tested the > synovial fluid in his knee it did show inflammation. We just don't > have positive blood work. My knees swell also, the one that had > surgery much more than the other. My fingers are usually swollen when > i get up in the morning. >      As for joint replacements, the ortho doc said that is the only > thing > that will help my knee, but I am too young to do it. >      And, the prednisone, I'm not sure anymore. It seemed to help > me at > first, but now I am hurting so much again and I'm just not sure. I'm > on a low dose and that could be the problem, but the stuff makes me go > into a rage if i take higher doses. >      Last few days, people seem to be reacting to me as if I'm just > whining > and my pain is just normal aging stuff. I'm so frustrated and > depressed. I know something is wrong with me. I can barely get > through a work shift, I'm so exhausted. My life is going down the > toilet and I can't get any help. The more I try to figure it out, the > more confused I get. I just want to crawl in a hole and die. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 , Erosion is NOT normal for anyone in their 20's. It is NOT a part of normal aging. I get enraged when I hear of doctors refusing joint replacements based on age. We have a member here that had her first joint replacement at 13! So I guess you're supposed to be in a wheelchair for several years waiting until that magic age before they will consider it? I had my knees replaced when I was 42 and it was the best thing I ever did. I had a second opinion, who based the timing of joint replacement to be when you couldn't stand the pain anymore. He told me I would know when it was time. He was right. Do you have another ortho that you can consult? I know it's frustrating trying to figure it out. I've been trying to do the same thing for more years than I care to think about. We're not doctors and it's not up to us to figure it out. That is why we go to doctors. Unfortunately you live in an area where you don't have many choices. Many of our members are in remote areas and have to travel hours away for medical care. I feel so bad for those in that situation. But getting the right diagnosis and treatment can make all the difference in the world in quality of life, and is worth it. It's even more frustrating that those around you are clueless. I never wanted to wish evil on those that don't get it, but in the last year I've had several people close to me have joint pain for various reasons, and every one of them ask me how I put up with it. My answer is always the same - What choice do I have? There have been times in my life that I wondered how I got through the day, fearful of what lies ahead. Joint replacements and medication has made my life better than ever, and I have faith that the future will bring more help for us all. The only hope I see for you is to find a way to get to doctors that are good and will find out what is going on with you. a On Jul 23, 2005, at 10:22 PM, wrote: a, >      I am 46, had the knee surgery when I was 44. The erosion in the > joints started in my twenties, least that is when i started having > pain > and noticing the grating noises from the knees. >      As for inflammation, I think both my brother and I do have it. > We > both get swelling in our knees, and he said when they tested the > synovial fluid in his knee it did show inflammation. We just don't > have positive blood work. My knees swell also, the one that had > surgery much more than the other. My fingers are usually swollen when > i get up in the morning. >      As for joint replacements, the ortho doc said that is the only > thing > that will help my knee, but I am too young to do it. >      And, the prednisone, I'm not sure anymore. It seemed to help > me at > first, but now I am hurting so much again and I'm just not sure. I'm > on a low dose and that could be the problem, but the stuff makes me go > into a rage if i take higher doses. >      Last few days, people seem to be reacting to me as if I'm just > whining > and my pain is just normal aging stuff. I'm so frustrated and > depressed. I know something is wrong with me. I can barely get > through a work shift, I'm so exhausted. My life is going down the > toilet and I can't get any help. The more I try to figure it out, the > more confused I get. I just want to crawl in a hole and die. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.