Hi, I have never been on this site before. I suppose I will start by giving some history. I have been seen by a rhumatologist for almost 2 years. After a slow recovery from a surgery my doc did some labs and found some funny stuff. Not sure what it meant he sent me to my pcp who did the same work and then he sent me to a rhumy. The rhumatologist said I had fibromyalgia and that is it. Then after blood work he added antiphosphilipid antibody syndrom. About a year later and more blood work, and more issues, he finally decided that something is going on and I needed to start methotrexate for my joint pain in my hands. The problem was, I was about to move and he did not want me to start it without monitering so he told me to see a rhumy here where I live now. I got in quickly and the doc saw me for 5 min, never looked at my previous chart, and said all I have is Fibro. I am very frusterated. I am very in tune with my body, and I know there is somthing not right. It took almost 2 years for my old dr to decide to treat me and now this one sees me 1x and says nothing is wrong. I am all about not being sick, but I do not believe that is the case and he did not even run lab work. I guess loosing 30 pounds in 2 years is unremarkable...even if I am clinically underweight now. I am seeing a new dr in November. One more. To see if they have something to say that is different. I just want someone to listen to me and believe me. Now that winter is coming, I am getting more tired and have a lot more pain. Especially in my hands. Cold weather is the most painful of anything. Well any way, that is me. Feel free to ask anything. I am an open book and want advice.
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If it's at all possible, please ask for the past blood work test results from your old doctors/hospital. Then you will know exactly what was off, and how off it was. You can take this information, as well as possibly a referral letter from your old rheumy with his opinion with to your next appointment. Personally, I prefer to just bring past lab results with me to a new doctor to avoid any bias that can be introduced...
It is possible to have fibro *and* something else, many here have fibro and lupus. Had anything been done for the fibro such as treatment with a low dose tricyclic? There is also Lyrica and other medications which can help.
For your last doctor deciding to start methotrexate, did he say for what possible disorder? Rheumatoid arthritis, lupus, undifferentiated connective tissue disease? For me, it is a little strange to start off with methotrexate without first considering Plaquenil if he was leaning towards a possible lupus diagnosis.
I'm glad to hear you aren't going to let it go but will continue to seek answers and treatment that will help you feel better. Hopefully this next doctor will be far better than the last one who didn't bother taking bloods even despite your history.
Best luck and if you get your blood test results, we can try to help you interpret them before the next appt too.
It is possible to have fibro *and* something else, many here have fibro and lupus. Had anything been done for the fibro such as treatment with a low dose tricyclic? There is also Lyrica and other medications which can help.
For your last doctor deciding to start methotrexate, did he say for what possible disorder? Rheumatoid arthritis, lupus, undifferentiated connective tissue disease? For me, it is a little strange to start off with methotrexate without first considering Plaquenil if he was leaning towards a possible lupus diagnosis.
I'm glad to hear you aren't going to let it go but will continue to seek answers and treatment that will help you feel better. Hopefully this next doctor will be far better than the last one who didn't bother taking bloods even despite your history.
Best luck and if you get your blood test results, we can try to help you interpret them before the next appt too.
results
I have all my labs and my final report from my doc. I always get copies for my own records. I was on Plaquinil for over a year with no help. He thinks it is uctd leading up to lupus. That was what he put on my last report. My ana is low but over the last 2 years it has gone from normal to 1:320. Not really high, but a jump from the 4 months in between testing from 1:80. My Rheumatoid factor is negative but it slowly increases everytime I get it tested. going up a few "points" at a time. My fingernails are beginning to turn blue again after I eat and when I am cold. Old doc didn't believe me when I told him because he never saw it happen. I get pleurisy every few months that ranges anywhere from a few days to a few weeks. I know there is something I just do not know what. But I am a researcher which is good and bad. I learned that docs do not like to be challanged when they tell you something and do not like the patient to be informed.
I have all my labs and my final report from my doc. I always get copies for my own records. I was on Plaquinil for over a year with no help. He thinks it is uctd leading up to lupus. That was what he put on my last report. My ana is low but over the last 2 years it has gone from normal to 1:320. Not really high, but a jump from the 4 months in between testing from 1:80. My Rheumatoid factor is negative but it slowly increases everytime I get it tested. going up a few "points" at a time. My fingernails are beginning to turn blue again after I eat and when I am cold. Old doc didn't believe me when I told him because he never saw it happen. I get pleurisy every few months that ranges anywhere from a few days to a few weeks. I know there is something I just do not know what. But I am a researcher which is good and bad. I learned that docs do not like to be challanged when they tell you something and do not like the patient to be informed.
weight
has anyone else had a big weight loss? I seem to loose 10-15 pound during each flair up. My lowest weight was 112. I am about 118 now at 5'6'' but I feel a flair up coming on and I will probably loose all that I gained back. Why do I do this? I was 148lbs in 2003.
has anyone else had a big weight loss? I seem to loose 10-15 pound during each flair up. My lowest weight was 112. I am about 118 now at 5'6'' but I feel a flair up coming on and I will probably loose all that I gained back. Why do I do this? I was 148lbs in 2003.
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