Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Two trees, I can definitely commiserate with you. I am an RN, and have noticed for about two years that I have joint pain, sometimes severe, that comes and goes. My internist is a close friend and it took a year for him to agree to do Lyme disease testing, which was my first concern. He just thought that I work hard and that I have muscle strain. Meanwhile whatever this is marches on. A few times I have been in so much pain that I had to use the little cart at Sam's Club. Here I am using a handicapped cart and I have no idea why........I didn't injure this swollen foot so far as I know. I did see another doctor who thought I looked wonderful and wouldn't run " expensive tests " as I asked. Finally one night my jaw hurt, I couldn't turn my neck, and I could only wear slippers on my feet. My shoulders hurt so badly that I could bearly carry my purse and couldn't raise my arms over my head.I couldn't open a jar of mayonnaise and I felt like throwing myself off a train. I am exausted and annoyed. I went to the ER where the doctor there asked me how long I'd had rheumatoid arthritis. He too refused the work-up and sent me back to my " friend " /internist, although he did provide me with quite a few narcotics..........great, lets addict me while we do the diagnostic ! Well my ANA is 1: 640 and my RF is negative. My Sed rate is slightly elevated. Finally I will see a rheumatologist.....although there is a six month wait to see one in my area. They are moving me ahead behause now they are worried that I might have lupus (Despite the fact that my other labs are great and I have no skin problems, mouth sores or anything else lupus-like) I am utterly disgusted because I am significantly limited. I cannot work, take care of my children or animals, clean my house, or even park the car in a tight spot. I know that under current technology that I should be able to be maintained without continuing to deteriorate significantly. Until then it is frustrating. I share your concerns about fibromyalgia. You may well have RA and may need to be treated for this. You may also have a connective tissue disorder, or something else. Fibromyalgia is possible but if it is something else then you are not being properly treated for all of the implications of your problem. (Like me) Your " bad heart " may in some way relate to your discomfort with your joints. You should have the best work up possible done by a board certified rheumatologist/internist. Once a diagnosis is made they can begin to treat you appropriatesly and although all the symptoms won't disappear, the current technology should allow for you to be more comfortable and much more functional. I know when you feel this bad that it's hard to be assertive enough to get the care you need. I can never in my life recall a time where I felt like laying down and dying, and I do right now. The fact is that you are responsible for finding, and hiring a rheumatologist and choosing between the treatment options he sets out for you. The medical profession doesn't care about us......we have to care and we have to seek them out to help us, just as we would a plumber. I sincerely wish you speed in a more accurate diagnosis and in treatment other than simply narcotics. Best wishes, J > > does anyone else have fibromyalgia? i think the doc was wrong who > said i dont have arthritis cause my joints do swell at times just > weent that day - anyhow - wondered because i dont think it could > cause so much pain as i have to be on narcotics. sigh and i need em > to stay going. i tak 2 hydrocodone in am and beefore bed and propox > on occassion during day otherwise i just eat ibuprofen - i also take > amitryptyline and alprazolome - problem is i also haev abad heart > and maybe thatmakes it worse - i dontknow. does fibromyalgia hurt > this bad?? > > what makes mme angriest is my reg doc thought arthritis due to > increases in labs but the rhuematologist poked me in few spots - did > no labwork or xrays and says i dont have arthritis - how the heck > can they tell without tests? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 In a message dated 10/24/2004 7:18:44 AM Central Standard Time, chafarm@... writes: I know when you feel this bad that it's hard to be assertive enough to get the care you need. I can never in my life recall a time where I felt like laying down and dying, and I do right now. The fact is that you are responsible for finding, and hiring a rheumatologist and choosing between the treatment options he sets out for you. The medical profession doesn't care about us......we have to care and we have to seek them out to help us, just as we would a plumber. I sincerely wish you speed in a more accurate diagnosis and in treatment other than simply narcotics. Best wishes, Hello J, So sorry to hear that it took that long to get a diagnosis?. May I ask what part of the country you are from? I am in Minnesota, which is suppose to have the best healthcare. It took me 6 months to get a diagnosis, all the time I kept getting worse - I too had difficulty walking and swollen feet and purple toes. (not to mention that I couldn't use my hands at all). I was hoping the symptoms would get better, all the while thinking that the chiropractor I was going to was causing the problems (in retrospect, he does have some fault in this). I finally went into my General Practioner, one whom I've been seeing for the past 20 years and told him I was I going to have a nervous breakdown, and I was going to take my relatives with me (meaning - they were afraid for my health and I was driving them nuts with the amount of pain I was in and I couldn't drive at all). Doc referred me to the RA right away, but it did take a month to get into see the RA. Luckily I've had the same Doc for 20 years who DOES care about me a great deal. Actually, being in pain turns me into a b*tch and I know when I am ill and in need of medical care and medication. Becky Glaser & Soul are the Real Starsky & Hutch! http://www.geocities.com/starskyhutch4evr updated! http://www.geocities.com/glasersoulfargas2004/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 thats the problem - this IS a rhuematologist. my dr sent me there due to sed rate increasing slightly every month - well she poked a few areas on my body - bent my finger tip back ( most people can not do this - ) and said that i have fibromyalgia. she refused to do any lab work see if sed rate still going up and no xrays and nothing but see ya later. i to am an rn and it bugs me this doc treated me like i was crazy and it was all in my head. i know i need to get a new opinion from a different rhuematologist but i am choosing to get the heart work up first - as the heart can be deadly and as you said could be cause of much of my problem. it is just that the rhuematologist made it sound like i should nothave this much pain and itwas gonna get better if i exercise more and blah blah blah like its all in myhead. made me mad. sigh. doctors!!! thanks for listening. tracie > > > > does anyone else have fibromyalgia? i think the doc was wrong who > > said i dont have arthritis cause my joints do swell at times just > > weent that day - anyhow - wondered because i dont think it could > > cause so much pain as i have to be on narcotics. sigh and i need em > > to stay going. i tak 2 hydrocodone in am and beefore bed and propox > > on occassion during day otherwise i just eat ibuprofen - i also take > > amitryptyline and alprazolome - problem is i also haev abad heart > > and maybe thatmakes it worse - i dontknow. does fibromyalgia hurt > > this bad?? > > > > what makes mme angriest is my reg doc thought arthritis due to > > increases in labs but the rhuematologist poked me in few spots - > did > > no labwork or xrays and says i dont have arthritis - how the heck > > can they tell without tests? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Becky, > Hello J, I am in rural Virginia, but I drove a significant distance first to Richmond and then to Charlottesville where the eventual diagnosis was made. (Although there is some argument as to whether I have lupus and just have great skin so no one knows.) I just think that everyone I saw attributed my symptoms to hypothyroidism which I have had treated and done well with for 15 years. No one including the chiropractor actually considered that when I told them that I had pain that seemed to migrate from one joint to the other and that I was becoming more limited and more limited at age 40, that I might be telling the truth. J > > So sorry to hear that it took that long to get a diagnosis?. May I ask what > part of the country you are from? I am in Minnesota, which is suppose to have > the best healthcare. It took me 6 months to get a diagnosis, all the time I > kept getting worse - I too had difficulty walking and swollen feet and purple > toes. (not to mention that I > couldn't use my hands at all). > I was hoping the symptoms would get better, all the while thinking that the > chiropractor I was going to was causing the problems (in retrospect, he does > have some fault in this). I finally went into my General Practioner, one whom > I've been > seeing for the past 20 years and told him I was I going to have a nervous > breakdown, and I was going to take my relatives with me (meaning - they were > afraid for my health and I was driving them nuts with the amount of pain I was in > and I couldn't drive at all). > Doc referred me to the RA right away, but it did take a month to get into see > the RA. > Luckily I've had the same Doc for 20 years who DOES care about me a great > deal. > Actually, being in pain turns me into a b*tch and I know when I am ill and in > need of > medical care and medication. > > Becky > > Glaser & Soul are the Real Starsky & Hutch! > http://www.geocities.com/starskyhutch4evr updated! > http://www.geocities.com/glasersoulfargas2004/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Tracie, I agree that the heart work-up should be done first. There are antibodies for I believe, cardiolipins in which an autoimmune process with the heart can be ruled out. Certainly doing this first will contribute to your peace of mind. You can approach the joint issues afterward. Is your ANA or RF positive ? If not, they may be waiting for that. I still think that after your cardiac work-up you should get a second opinion. I have noticed that RNs (and for that matter MDs) are palliated when they try to receive medical care. I do have friends who are RNs and some MDs and they have had difficulties getting other doctors to take their vague or evolving complaints seriously. I think that too often they think that our aches and pains and symptoms are the result of stress, burnout or perhaps malingering, which may be the result of years and years of seeing folks who REALLY did have the worst case scenario. I was a critical care RN for years. The funny thing is that in the grand scheme of things, people with a headache simply have a headache.......but in what I do, someone with a headache, evolves into a brain tumor. Since I made a career of seeing the people who truly were the worst case scenario, my perspective of what things might be may be a little skewed. I think doctors consider this when we come to them, and think that we are exaggerating our complaints. In fact, I have minimal respect for many physicians (and a great deal for others) and I don't see one unless I need to. Most nurses don't run to physicians unless it's to get a mammogram, pap or some other type of routine care. I am confident that after you have your follow ups, you are likely to get some better answers. I do have a friend with fibro who is significantly bothered.......so if all your labs are, is an increasing sed rate, perhaps this is something treatable/resolvable, and soon. I wish you well Tracie ! Hang in ! J > > > > > > does anyone else have fibromyalgia? i think the doc was wrong who > > > said i dont have arthritis cause my joints do swell at times just > > > weent that day - anyhow - wondered because i dont think it could > > > cause so much pain as i have to be on narcotics. sigh and i need > em > > > to stay going. i tak 2 hydrocodone in am and beefore bed and > propox > > > on occassion during day otherwise i just eat ibuprofen - i also > take > > > amitryptyline and alprazolome - problem is i also haev abad heart > > > and maybe thatmakes it worse - i dontknow. does fibromyalgia hurt > > > this bad?? > > > > > > what makes mme angriest is my reg doc thought arthritis due to > > > increases in labs but the rhuematologist poked me in few spots - > > did > > > no labwork or xrays and says i dont have arthritis - how the > heck > > > can they tell without tests? Quote Link to comment Share on other sites More sharing options...
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