Widespread Body Pain and High ANA

Have you been seen by immunology?
https://www.google.com/search?q=Immunology&client=ms-android-samsung-rvo1&sourceid=chrome-mobile&ie=UTF-8&inm=vs#tts=0
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Mine were high also
I was referred to Immunology and They drew a lot of blood My diagnosis
1MCTD (Mixed Connective Tissue Disease )
2Rheumatoid Arthritis
3Abnormal Vitilgo came on over night all over and black hair grows in the spots
4 Psoriasis
5Renauds
6Acquired (believed to be due Cpap)Chemicals
Immune deficiency syndrome
no defense against Cancer Yeast Fungus nor Viral infections.
7Hemolytic anemia thought to be due to Rheumatoid flare ups
Your pain could be Rheumatoid
And Mixed Connective Tissue Disease.
I am blessed to have The Bay Pines VA whom aid for the lab work.
Mixed connective tissue affects your entire body.
I am never happy
always exhausted
And I try Not to focus on me
But saw your post
Once you know then live life to its fullest
Eat Healthy live simple keep a Low Stress life style
Stress aggravates The inflammatory body response
Enjoy your time here on earth
When life depresses you
Do something Good (out of your Chactacter )for some one
whom could never recepatate.
That will always lift your mood.
First Ck out a good Immunologist.

Amy, you may also be interested in this older, related discussion:
- Help! Positive ANA with swelling, joint and muscle pain and brain fog: https://connect.mayoclinic.org/discussion/help-2/

@amykcpa I would not be too worried about that ANA. It is not that high (though level of ANA is supposedly not correlated with severity if illness). It is a signal to see a rheumatologist, for sure, but not cause for alarm.

If your pain is at the 2-3 level you can ask your doc about managing as you have been. You are never "required" to take Plaquenil or any other drug. PT with massage can help a lot, as can things like tai chi, in my experience.

After 20 years of very high ANA, a systemic lupus diagnosis and now scleroderma, my only concern for myself is whether an autoimmune illness is affecting internal organs. Yes we can talk about being proactive and preventative, but many of us have significant test results and symptoms like pain or neuropathy or whatever without any internal damage whatsoever.

Whatever ails you right now may or may not involve internal damage. Your doc can confirm that it is unlikely or not happening at all. Then you can decide on how you want to treat the external symptoms you are having.

@windyshores — Thanks so much for your response. I am so new to all of this. How do the doctors determine if there is damage occurring to internal organs? Is that through various blood tests for example to test kidney function and urinalysis to look for protein in the urine etc.?

If there is a chance that internal organ damage is occurring then do the doctors discuss utilization of various drugs as needed, including DMARD’s if warranted, to minimize and halt the damage to internal organs?

Can organ damage be occurring with very low and normal inflammatory markers such as CRP and ESR?

I am working on securing an appointment with a rheumatologist. Autoimmune disease diagnosis and treatment seems very tricky and complicated. Each of us have such varying symptoms and it seems as if the symptoms of many patients don’t align perfectly with the more common autoimmune disorders such as Lupus, Scleroderma which makes final diagnosis difficult.

I feel that labels are difficult but doctors use them for insurance codes. Of course they are also very useful when treatments are needed.

All I can say is that I have had ANA's like 1:5120 for 20+ years with pain and paresthesias (burning, tingling) but no severe illness (I get sick in the sun).

I did not introduce the idea of internal organ damage to worry you. Instead I was trying to say that many of us do fine with autoimmune disorders and do not have any organ damage.

Your rheumatologist will give you more information and order appropriate tests. I would try not to worry too much. That ANA of 1:320 may not be significant especially with no markers for inflammation. I am just another patient and your doc can tell you more.

ps my daughter, in her 30's, has had a positive ANA her entire life with no illness; not true for you since you have symptoms but many healthy people do have positive ANA's- at least healthy so far!

@windyshores — No worries — I am not alarmed. I understand you are a patient, not a doctor, and are just providing information based on your experience. I just like to gather information but understand some of the knowledge may or may not apply to me.

Hi Amykcpa,

windyshores has given good insights!

My general insight:
I will never be completely certain about any course of action with my autoimmune disease/s. That is hard to accept. Over the course of the last 10 years, I have tried to accept that I can only try to make the best decision given the information available to me and my doctor at the time.

Be sure to get a doctor whom you respect and trust; it might take a few tries. My gal rheumy does not ooze compassion and sympathy, but she is knows her stuff. I've been with her for 10 years. My primary care doctor recommended her. We are near Philly. Once a patient flew here from Montana (!) to have an appointment with her.

About starting medications:
It sounds from your messages that you have begun your research- good for you!
All medications have risks-- and benefits, too!
By reaching out here and collecting information, you actually are doing your risk-benefit analysis. You do still need your doctor's input.

Mix the doctor's input with your research, shake it up, be confused for awhile, and hopefully you will come up with a decision-- based on your risk-benefit analysis-- that you can live with/ be satisfied with.

Sometimes, I wish I had started medication sooner; sometimes I am glad that I waited...Hard to know, really. I had reached the point of having a lot of difficulty with normal, daily functioning. It became obvious that I had to do something.

Quality of life counts in the risk-benefit analysis, too.

But, having taken charge of the risk-benefit analysis myself, I am content at least to know that I made a reasonable decision at the time, however it turns out. I started plaquenil, then dMards 10 years ago and have progressed through a lot more meds.

For your own peace of mind, I urge you to make your own risk-benefit analysis before starting any med. Of course, you must give significant weight to your doctor's input.

About a diagnosis:
My opthamologist (medical eye doctor, sorry about spellign)-- who treats patients with autoimmune diseases-- he told me NOT to worry about a specific diagnosis, just get treatment.

Apparently, there have been really big strides in the study of immune diseases in the last 30-40 years-- since the HIV research started in the 1980s. While some things about the immune diseases have become clearer, other things are still not so clear. It's like the pieces of the research haven't all fallen into place yet. But it's better than it was. It has been hard for me to accept the limitations of the science. I joke that I am on the outer edges of medical knowledge...

Scleroderma- The testing for Scl70 is imperfect. Wait to see what the rheumy says about it, which might be easier said than done. I tested positive 3 times, then I got another, expensive version of the test done, and it came back negative. Both my rheumy and my dermatologist agreed that, based on that expensive test, I probably do not have and will not get scleroderma.

Internal organ damage-
Wow, this has been a worry for me, too! There are some blood tests that my doctors do to watch for signs of internal organ damage.

Sorry this got so long!
Good luck on your journey!

Excellent advice from @annewoodmayo :

"Be confused for awhile."

This is what I was trying to say about labels:

"My opthamologist...– who treats patients with autoimmune diseases– he told me NOT to worry about a specific diagnosis, just get treatment."

The Scl70 test is known to have false positives, which become clear when a different antibody is positive. I have the anti-centromere antibody (>8, with >1 considered positive).

@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?

@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.