OMG I want to scream when I hear this...most of us have been through it...for me it was 25+ yrs of no answers or lame answers that didn't address my issues...I was told it was all in my head, it was a virus...you name it...finally a dr sent me to a rheumatologist and even then the answers have come sooo slowly but finally I have a really good one and she takes me seriously. If the dr. suspects fibromyalgia they should treat that...that was my first dx and I was treated w/ antidepressant (SSNRI) which helps w/ sleep and pain, as well as something for sleep. it helped a lot but my disease has continued to progress...lupus...RA...
I know how discouraging (and expensive) it can be but you have to keep trying to find a dr that will help you get answers.
write down your symptoms and questions and demand answers...if that dr won't work with you, go to the next one.
Good luck, I am saying a prayer for a great dr for you...and SOON!
Ty. And I’m gonna go to a different doctor. The one that I’ve been seeing was nice and all, but I dont think she has given me enough info.
Angel312 said:
Tiffany, I’m so sorry you have to wait to be referred to a Rheumy…BUT…you certainly don’t want to go before that or financial probs will be added to your list of stressors…ugh! You don’t nd that ;( Hope they don’t drag their feet on the referral…as Insurance are notorious for. When you’re up to it, you might want to see where they are with that, (not telling you what to do, just thinking out loud).
I hope things are looking a little better now. Never give up and use resources…I’m sure anyone here would be glad to chat if you needed to talk to someone. I’ve only been diagnosed for a little over a year so a lot of “THIS” is new to me, but I’m learning…these groups sure help me a lot.
Take care and I wish you the best…
gail
Ty for the advice. And I am very frustrated that I can’t get a straight answer.
Pam said:
I went through the same exact thing when I first started with symptoms of Lupus. The doctors would tell me, “you have some symptoms but not enough to be Lupus.” Then I got false positive results and negative results. Finally, I came across a doctor that said, " we are running two and three more strands of my blood which showed I had Lupus. That was about ten years after starting the symptoms. Lupus is a very frustrating disease because there are so many other conditions that have almost the same type of symptoms. I hope that you will find the results soon. Hang in there. I have had lupus since the late 1990’s and I am still experiencing new things all of the time. I use to beat myself up with why me, and guilt for putting my family through any of this. The one thing I can tell you is to draw strength from anywhere you can it in a positive manner. It will pull you through the rough spots.
Ty. My ana came back negative and the doctor told me that means that I don’t have lupus, or ra. And she left it at that. I’m not sure what is wrong with me. I might not have either. But im in so much pain all the time. Some times it’s better than other times. Ty for the info though.
Pam C said:
It took 4 months for our daughter to get diagnosed. There is no “test” for lupus. Our daughter was diagnosed with ANA negative Lupus. My ANA was positive. She eventually got a positive test but it was yrs later…she was 14 when diagnosed. Make sure you are seeing a Rhuematologist. It takes a specialist that through symptoms and tests they can get to the bottom with a diagnoses. I sure hope this helps. Hang in there!
Yeah the doctor didn’t seem like she was too concerned. Almost like I was making it all up. But my wrists are very swollen. And they bruise some days if I have been using them a lot. I also have lumps on my arms that have been there for about a month now. The doctor pretty much over looked it when my blood work was negative on the ana and ra test. She said maybe it was fibromyalgia and she prescribed me cymbalta, an antidepressant. I tried it for a few days, but it made me puke and fall asleep. But the sleep was not very good sleep. So I stopped taking it. And im gonna go to a different doctor for a second opinion.
dakotarose2 said:
OMG I want to scream when I hear this…most of us have been through it…for me it was 25+ yrs of no answers or lame answers that didn’t address my issues…I was told it was all in my head, it was a virus…you name it…finally a dr sent me to a rheumatologist and even then the answers have come sooo slowly but finally I have a really good one and she takes me seriously. If the dr. suspects fibromyalgia they should treat that…that was my first dx and I was treated w/ antidepressant (SSNRI) which helps w/ sleep and pain, as well as something for sleep. it helped a lot but my disease has continued to progress…lupus…RA…
I know how discouraging (and expensive) it can be but you have to keep trying to find a dr that will help you get answers.
write down your symptoms and questions and demand answers…if that dr won’t work with you, go to the next one.
Good luck, I am saying a prayer for a great dr for you…and SOON!
yes , go to a Rhuematologyist doctor , they will do further tests than you primiarycare doctor will , and also don't just take what one doctor says and run with it !!!! You have to fight for what you know is happening to you .... Beverly L.
P.S. someone will hear you soon , I pray for you .... Beverly L.
Sorry it took me so long to reply !!! Haveing a sitting flare going on this week !!! It really hurts to sit long in one spot for periods of time !!! smile Yes as mothrs we don't want our children to go through pains / problems , but remember it is wisdom that they must learn for themselves ( just stay close to comfort her !!!! ) ..... Beverly L.
Pam C said:
Thanks Beverly L;) I try to be encouraging as much as possible. It's a tough disease and makes you very weary. I remember when I got my diagnosis I handled it ok cause we had already dealt with it so many yrs. Watching our daughter go in and out of hospitals & constant Dr appts that I guess I was almost numb to it...but our daughter cried when she heard. Because she knew what I was in for and it broke her heart. I cried with her not for my diagnosis but because NOW I knew what all her pain felt like and as a Mom it just ripped my heart out. To know that all those yrs she was hurting that bad. NO one truly knows our pain unless they live with this disease. They can empathize but they have no clue how hard it is to deal with it day in and day out. My heart goes out to each of you as a Mom and as one suffering. Praying for better days ahead for each of you!
Thank u so much for the advice! And sorry it took so long to respond. Have been extremely tired lately.
Beverly L. said:
yes , go to a Rhuematologyist doctor , they will do further tests than you primiarycare doctor will , and also don’t just take what one doctor says and run with it !!! You have to fight for what you know is happening to you … Beverly L.
P.S. someone will hear you soon , I pray for you … Beverly L.
Hi Tiffany89, it's okay !! glad that you are able to respond ...smile hope that you are feeling better !!! As for me for a coupkle of days i've been in a little pain ( the wheather here in Georgia has been rainy , which makes me ache so bad and most of the day am in bed ) ,but of course i can't stay there all day !!! Anyways glad to hear from you and hope that you are much better now , talk with you later .... Beverly L.
Tiffany89 said:
Thank u so much for the advice! And sorry it took so long to respond. Have been extremely tired lately.
Beverly L. said:
yes , go to a Rhuematologyist doctor , they will do further tests than you primiarycare doctor will , and also don't just take what one doctor says and run with it !!!! You have to fight for what you know is happening to you .... Beverly L.
P.S. someone will hear you soon , I pray for you .... Beverly L.