Getting a diagnosis of an autoimmune disease is often frustrating. Many of us understand your discouragement. I didn't completely give up on the medical establishment, but the looong wait for answers spurred me on to get proactive about my health. So I started doing lots of research online and started looking for safe, natural means to help the symptoms. Many of the things I tried were very helpful, although some were not. In the end, getting proactive helped by giving me renewed hope that I would find answers and get relief. There is life after autoimmune diseases, and I can say that I'm feeling much better than I did 10 years ago when I was just starting my health breakdown. In fact, I was experiencing much of what you described above. While I may never be what I was before "getting sick," at least things are much closer to normal than they were back then. Don't give up. Keep a food & health log to check for food triggers. And start doing research on your symptoms. You're not imagining all these problems, although family, friends, and doctors might think so sometimes. Best wishes for finding help.

very well said nanny1611, my ANA's came back negative for two yrs then POW, there they were, dont give up, i went through 5 pcp before i found one that actually cared, he put me on the path for referrals (which can be frustrating all in itself), my neurologist did a nerve conduction test and said my lupus wasnt active , (the pain in my legs sent me there), she put me on gabapentin 300ng three times a day, it helped emensly. my reumy dr. put me on plaquenil, it helps. hang in there and keep going until you find the right DR.

@cherokeesister3
My blood work always came back negative. My first doctor said that he had a patient for whom it took 20 years for the blood test to show positive. So getting a diagnosis can be quite frustrating.

Thank you for you responses. I have an appointment with a Rheumatologist next month. In the meantime, I have found out that my hormones are out of whack, especially progesterone deficiency. I started on progesterone cream a couple weeks ago. I have read about a correlation between low progesterone and RA, but not sure about with Lupus.

I feel the same way. My primary care physician said 100% Lupus but my Rheumatologist says it's an autoimmune disorder but maybe not Lupus. It's frustrating because I have literally every symptom of Lupus except my.blood work always comes back perfect. I'm so sorry. I wish I could help.

I have positive blood work...... positive low ana and positive low RF and I stll dont have a confirmed diagnosis.they say I "might" have lupus.so yeah,it can take a really long time to get a diagnosis.Especially if it stays "low grade" as my drs say.How have you been feeling?

Keep trying. Steroids helped me get better. Now I'm on plaqinel and that has helped my flare ups

I went to a blood specialist, and a Rhomotolgist

I just got back from the long-awaited first visit to the Rheumatologist - and he is perplexed by my symptoms. :( It's never a good sign when your last-chance doctor keeps going "hmmm"! He said that nothing specific jumped out at him. He doesn't think RA, as my joint pain is not accompanied by swelling. Since my last ANA was normal, he doesn't think Lupus, although he is testing it again just to be sure. According to him, if the ANA is normal, there is NO chance of Lupus, which goes against a lot of what I have heard from other Lupus patients who state their's was negative for a while even WITH a Lupus diagnosis. He did notice that I have some weakness in my legs, so he order a muscle enzyme test along with some other blood tests I don't remember, but I had them done this morning along with x-rays of both my hands.

I have to admit, I left kind of disappointed. I had read how to prepare for your first Rheumotolgy appointment, and this guy didn't do hardly any of the exam that I expected. Maybe I just expected too much. I also wasn't expecting a sudden diagnosis, but I wasn't expecting to be a medical mystery either. I don't think it could be mental, as it all started after my life finally came together and I started feeling happiness again. I guess I will just await the test results that I have a feeling will be normal.

The supplements for my borderline vitamin D and B12 deficiency hasn't changed anything. Two months on progesterone cream also hasn't changed anything. The scariest thing for me is realizing now that at only 44 years old, I will be in pain for the rest of my life with no explanation or relief.

That was me to the tee! Although my ANA has always been positive for the last five years and my rheumatologist kept telling me well sometimes people have a positive ANA because of a strong have family history and i'm like listen idiot I know how I feel lol! There is a list of auto immune diseases in my family including lupus rheumatoid Sjogren's Hashimoto's and a few more. The sad part is a lot of these diseases overlap since a lot of their symptoms are the same and getting a diagnosis can be frustrating. I am also in my mid 40s and just started going through menopause so my hormones being out of whack does not help either. My sed rate and my CRP are always fluctuating but I base that on when I feel I have a flareup. My white blood cell and total platelet count are also always low. My muscles and joints in my hands and feet ache every morning and I occasionally get a rash somewhere especially when I am in the sun. Recently I just experienced the Raynaud's phenomenon which can be scary as your hands can turn blue. I see a cardiologist next week to rule out any circulatory diseases which makes me nervous. Just continue to be patient but yet persistent and continuously get your blood checked because it could change from time to time. So at my last visit my rheumatologist finally said well I think you have a case of Mild lupus and I'm like either I have it or I don't... unfortunately there are no good rheumatologist in my area. I've learned pretty much diagnosed myself with all of my symptoms and I am convinced I have lupus. He said well you don't have the red rash across your face and I'm like you're the doctor don't you know that 50% of the people don't have the rash or get it, so frustrating! Smart thing that you got your vitamin D and B12 levels checked that's important! Sounds like we're all here for each other!

Have you been tested for Myasthenia or Sjogrens antibodies? May want to research it a bit.

You can have RA without having redness or swelling. And, you can have RA without having the numbers. I suspect this is true with any AI disease. Find a rheumy that will start treating you, even if it's with Prednisone. That's what my rheumy did because he said it may take years to figure out what is wrong...but if the meds work, then we know it's in the rheumy family and there are meds for that.