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Real members of MyChronicPainTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyChronicPainTeam Member asked a question 💭
Chatham Kent, Ontario

I just saw a rheumatologist yesterday after 2 years of suffering chronic pain. First it was in one area and then I started having other aches and pains. I was negative for RA after doing 2 blood tests, but tested positive for both Ana and anti adna standard. At my apt yesterday, I was told since I haven't had a crazy flare and that I look fine...it most likely was a false positive but I should go back in a few months to repeat the test just to be sure. Any ideas here? As of right now I have… read more

August 16, 2017
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Answer Summary

Members rallied around someone struggling to get answers for chronic pain after testing positive for lupus markers but being told it was... Read more

Members rallied around someone struggling to get answers for chronic pain after testing positive for lupus markers but being told it was likely a false positive, with many sharing their own journeys of misdiagnosis, dismissed symptoms, and the relief that came with finally finding the right doctor and diagnosis. Several members suggested specific conditions to investigate, including fibromyalgia, ankylosing spondylitis, and Ehlers-Danlos Syndrome, while emphasizing the importance of persistence, self-advocacy, and seeking second opinions when symptoms don't match a doctor's conclusions. A recurring theme was the frustration of being told pain is imaginary or blamed on being a busy mom, met with fierce validation that if something feels wrong, it deserves to be taken seriously and investigated until answers are found.

A MyChronicPainTeam Member

If you feel something is wrong I believe u need to keep going to different places until they find out what the problem is b persistent

August 26, 2017
A MyChronicPainTeam Member

@A MyChronicPainTeam Member There are too many questions unanswered to give much of a response my first thought was lupus & there are a variety of those not just systemic but they do produce symptoms much like you describe.
On the other hand so would most auto immune diseases sorry!! I developed arthritis when I was 23 but there had been symptoms when I was 16 & every so often someone insists for this level of disease it MUST be RA....... yea ...NO it's not it is osteo against all the things they tell you ie exercise etc (I played badminton 5 nights a week at the time!!) it still developed, the phrased used in these circumstances is "atypical" I usually explain it by saying that my body hadn't read the same books as them.
Osteoarthritis causes more pain than most people...including Doctors realise, it attacks joints..... ALL joints are at risk including small ones you probably are not aware of & since it is an auto immune disease it will be accompanied by inflammation & that goes everywhere So it is possible you have the start of something else like Lupus but equally it could just be a further spread of your arthritis. Don't believe everything they say if you are sore then you ARE no matter what they say the problem is to sound reasonable and convince them that you are right and they need to treat the symptoms if nothing else, hopefully it will go into remission for a while & you will get a break Good luck

September 1, 2017
A MyChronicPainTeam Member

Are you sure you dont have fibromyalgia. I have had tests like an ANA test sometimes come out negative and sometimes it comes out positive and frankly the Doctors themselves cant understand it. I was originally diagnosed wuth Lupus and treated for that for years. Then some other doctors changed the diagnosis and told me I had fibromyalgia, osteoarthritis and myofascial pain syndrome.

In addition, I have ruptured discs in back and neck, degenerative joint, disc and facet diseases, neuropathy on my wrists, carpal tunnel on one hand, as well as other medical conditions.

You can try to get another opinion from another specialist of course, to see if they have some answers. But dont let them make you feel like you are crazy.

My brother had doctors making him feel crazy for 10 years, saying there crazy saying there was nothing wrong with him. It turned out he was in remission with Advanced Progressive Multiple Schlerosis and ended up a quadriplegic from it and then died from complications of pneumonia from laying in bed 24 hours a day.

Then my mother complained for 5 years to her doctor that she felt ill and he did not do tests on her and ignored her complaints. We took her to another doctor after she lost 30 pounds in one month. It turned out she had cancer for 5 years. She died 5 weeks later. It was so advanced that they did not offer any cancer treatment. It was too late for any treatment to help. The doctor was quilty of negligence and malpractice. He had previously lost his Dr. License for 5 years. His name was in the news paper for having lost his license.

Then my sister complained for a long time that she was falling down, and the idiot of her doctor told her it was because she was obese. Which was not the reason at all. It turned out she had Lou Gherigs Disease and she died 5 months later. I was the one who realized what she had. I knew my aunt and grandma died of Lou Gherigs Disease and I observed my sister walking and her symptoms and realized she had the same symptoms as our relatives. So I insisted the Rehab center send her to a hospital that specialized in Lou Gherigs disease so that they could test her. I was right and she came out positive on all testing. I had to watch her die over the next 5 months. It was devastating just like my mothers and brothers deaths were.

I know longer trust doctors. They make allot of mistakes. Very few doctors are good or excellent.

When doctors arent sure about answers they make you feel like it is all in your head when it isn't. They are not Gods and have limitations. Get another opinion over and over again until you find the right doctor. That is my opinion.

August 22, 2017
A MyChronicPainTeam Member

I agree, sounds like Fibromyalgia to me also. Symptoms are a little different for each person , but the underlying problem is an ache or pain in your shoulders, or hips, knees, hands and feet . It can feel like it is moving around. Are you tired a lot? Ever feel a little lost, not sure of something that you have done a lot? That's what fibromyalgia does to you.

August 21, 2017
A MyChronicPainTeam Member

Sounds like Fybromyalgia which can hit at any age. My blood tests came back negative for RA but exrays show I have it and osteo- arthritis.
It was rheumatologist who diagnosed me with the fibro. He was second opinion after first doctor insisted I did not have arthritis then had attitude after essays showed otherwise.
So suggestion maybe see another specialist?
They are human.
All the best ladies!!!

August 20, 2017

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