1. < Autoimmune Diseases

Widespread Body Pain and High ANA

Posted by amykcpa @amykcpa, Jul 5, 2023

I have had periodic episodes of widespread body pain for more than 5 years. The pain is burning and aching. I have burning pain in my spine and aching in my front hip bones, front shoulder area and base of thumb. I also have heel pain for a few minutes when I begin walking in the morning or after sitting for a long period of time. I have no other symptoms and no swelling.

I am currently having a bad episode of pain that has lasted for about 3 weeks now - it is slowly getting better. The pain episode started 2 days after a routine dental visit with cleaning.

I recently had blood tests with the following results:

ANA Screen IFA is Positive A
ANA Titer is 1:320 (normal is < 1:40)
ANA Pattern is Nuclear Speckled A

hs-CRP is

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

annewoodmayo | @annewoodmayo | Jul 7, 2023
In reply to @amykcpa "@annewoodmayo Thanks so much for your response. I am scheduled to see a rheumatologist that my..." + (show)
@amykcpa

@annewoodmayo Thanks so much for your response. I am scheduled to see a rheumatologist that my internist recommended at the end of July. She has very good reviews on-line but is very young. Would you be willing to share the name of your doctor in the event that I decide to seek out a second opinion?

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HI, Amy,
I sent my doctor's name in a private message to you.
🙂

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annewoodmayo | @annewoodmayo | Jul 7, 2023
In reply to @amykcpa "@windyshores — I really like your ophthalmologist’s comment about not worrying about a specific disease but..." + (show)
@amykcpa

@windyshores — I really like your ophthalmologist’s comment about not worrying about a specific disease but to get treatment that fits your symptoms. It seems as if many people do not fit into one nice neat bucket of a specific autoimmune disease. There is a lot of symptom overlap in the various diseases. I think it is best to focus on protecting our organs and making sure to take any medication which will keep symptoms manageable and maximize quality of life.

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Yup, you got it! Excellent synopsis
: )

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suzcape | @suzcape | Jul 7, 2023
In reply to @amykcpa "@windyshores — I really like your ophthalmologist’s comment about not worrying about a specific disease but..." + (show)
@amykcpa

@windyshores — I really like your ophthalmologist’s comment about not worrying about a specific disease but to get treatment that fits your symptoms. It seems as if many people do not fit into one nice neat bucket of a specific autoimmune disease. There is a lot of symptom overlap in the various diseases. I think it is best to focus on protecting our organs and making sure to take any medication which will keep symptoms manageable and maximize quality of life.

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I am following the discussion - I am dealing with RA (rheumatoid arthritis) for a year now. I was fortunate to find a great rheumatologist practice in Naples, Fl - bit of a drive.
Currently I am having injections of Orencia once a month and have weined off of Methylprednisone 4mg tabs. I keep supply just in case. She stated that I am now in remission after 11 infusions. Pray that it stays that way. I have learned much while on this site. Pray for all of us with an auto immune pest in our life.

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windyshores | @windyshores | Jul 7, 2023
In reply to @amykcpa "@windyshores — I really like your ophthalmologist’s comment about not worrying about a specific disease but..." + (show)
@amykcpa

@windyshores — I really like your ophthalmologist’s comment about not worrying about a specific disease but to get treatment that fits your symptoms. It seems as if many people do not fit into one nice neat bucket of a specific autoimmune disease. There is a lot of symptom overlap in the various diseases. I think it is best to focus on protecting our organs and making sure to take any medication which will keep symptoms manageable and maximize quality of life.

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@amykcpa I was quoting @annewoodmayo whose ophthalmologist made that wise comment 🙂

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amykcpa | @amykcpa | Jul 7, 2023

I did notice my mistake this morning regarding the ophthalmologist comment. Thank you both — I really like the comment about treating symptoms and not assigning us to a narrow bucket of specific diseases. I will be listening carefully to the rheumatology doctor at my appointment to gauge her philosophy on diagnosis and treatment. Having information like this before the appointment is so incredibly valuable to me. It really helps me prepare and frame my questions ahead of time. It is so easy to make a misstep when you are dealing with symptoms, an undesired blood test result and a new health issue to resolve.

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1 reply
annewoodmayo | @annewoodmayo | Jul 7, 2023
In reply to @amykcpa "I did notice my mistake this morning regarding the ophthalmologist comment. Thank you both — I..." + (show)
@amykcpa

I did notice my mistake this morning regarding the ophthalmologist comment. Thank you both — I really like the comment about treating symptoms and not assigning us to a narrow bucket of specific diseases. I will be listening carefully to the rheumatology doctor at my appointment to gauge her philosophy on diagnosis and treatment. Having information like this before the appointment is so incredibly valuable to me. It really helps me prepare and frame my questions ahead of time. It is so easy to make a misstep when you are dealing with symptoms, an undesired blood test result and a new health issue to resolve.

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There is a thread here on Mayo about how to prepare for an important doctor's appointment.

Write down questions before hand. I leave space to write the doctor's reply in the same place.

I write my questions in black and take a blue pen with me to write the replies, so I don't get confused -- or more confused-- later when I read it. Haha.

Make a list of your symptoms. Worst first. Include weird stuff, too. You never know what they will ask.

Sometimes, the doctor will ask to read my list himself. Sometimes, I hand the list to him and suggest that he read it. (I have Catholic school teacher handwriting. Most native English speakers can read it.)
Sometimes I read it to him/her, so that I can write my notes.

There are more ideas in that thread I mentioned.

Good luck!

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amykcpa | @amykcpa | Jul 7, 2023

Hi — I am continuing to read and research about autoimmune illnesses. I know I am about 3 steps ahead of where I should be thinking right now but just curious.

I was reading that ANA can be high but when the additional panels of tests are completed everything is negative and checks out ok.

I read that at that point you should consider requesting a comprehensive lymphocyte immunophenotyping test and/or multiple tissue autoimmune reactivity test. A lab called Cryex offers the testing.

Are these tests that a good rheumatologist might order? Or am I reading inaccurate information?

Thanks in advance.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 7, 2023
In reply to @amykcpa "Hi — I am continuing to read and research about autoimmune illnesses. I know I am..." + (show)
@amykcpa

Hi — I am continuing to read and research about autoimmune illnesses. I know I am about 3 steps ahead of where I should be thinking right now but just curious.

I was reading that ANA can be high but when the additional panels of tests are completed everything is negative and checks out ok.

I read that at that point you should consider requesting a comprehensive lymphocyte immunophenotyping test and/or multiple tissue autoimmune reactivity test. A lab called Cryex offers the testing.

Are these tests that a good rheumatologist might order? Or am I reading inaccurate information?

Thanks in advance.

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@amykcpa it would also depend on your insurance company!

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pennelayton | @pennelayton | Jul 7, 2023

I’m interested in knowing this too. I’ve been diagnosed with SLE but have symptoms off and on in different parts of my body.

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amykcpa | @amykcpa | Jul 7, 2023

@becsbuddy — Thank you. I am very willing to pay out of pocket for any tests. Cost is not an issue for me.

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