Kathryn-has your dr. tried infusions (i am assuming you have SLE or some auto immune) if my dr said that i would break down and cry. ms oregon: you do have somewhat of a basis to start disability with the fibro claim, i don't think what you are askin is unreasonable. with your sed rate high and positive ana that says something is going on. Lupus is not an easy one to dx. i sware it took forever i truly thought i was insane. because my ana was neg and my sed rate was elevated. take photos of your sores and rashes... it is good for drs. and if you do file it is good to help explain things. i have lupus, RA, fibro, persian gulf syndrome, ibs, gerd, ptsd, chronic fatigue, my memory is wack and depression migraines and anxiety and i think that is it. oh possibly another auto immune but i am having testing done soon. (i start in april)
If you need to get a different rhuematologist. When you see your dr. bring a list. make sure you go over everything on your list ( i do this because i cry sometimes) because living in pain and knowing this may be as good as it gets can sometimes be a downer.
You are your own pt advocate. you have to be. Say....i need some quality of life. This isn't working for me. AT all. I am not never was still not a squeeky wheel, so my huband 15 years ago said i am going with you so you tell the truth not well iim ok.
i have a dr. not for the AI diseases that gets my warped sense of humor and my lists. You both have the right to say can i try this.....if it doesn't work with in one month i will go off it. that was how my family dr. diagnosed me unoffically with lupus. he put me on methotrexate. he said if it helped you have an auto immune if it doesn't then you probably don't. it did and we went from there. it gave me piece of mind to know he had a hunch and he didn't think i was nuts.
Be a squeeky wheel. not always just to get some relief. We live in a country where medicine and Dr.s are available, Don't let them give up on you. its ok to cry tell them youre afraid, tired scared,and in pain. tell them you are willing to try what they ask. it has taken years to get me to here... somewhat functional at home on somedays. but i know there is Hope. and for a dr to crush your hope...i have not nice words for that. Best wishes and may you both find some relief. webmd has meds listed for lupus see what they have or haven't tried, there has to be something out there that will work not to cure you, but to make life more tolerable.