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steph0219
@steph0219

Posts: 1
Joined: Nov 23, 2018

At a loss for why I feel like this

Posted by @steph0219, Fri, Nov 23 4:28pm

I had an ANA Titer test done in April and the result was 1:2560. I am a Veteran so my primary referred me to the RA doctor. He had further testing done to rule out lupus. The blood test he did, he told me did in fact rule out Lupus. He diagnosed me with Fibromyalgia after all exclusions were ruled out. I have not felt good in almost a year. I have been diagnosed with sciatic nerve as well. I suffer with many other aliments. I have IBS, PTSD due to personal trauma, eating disorder, Bulimia Nervosa, which is in remission, multiple feet/ankle fractures due to my fainting spells in the military, tinnitus, and many other issues.

I have symptoms such as fatigue, loss of desire to do anything, low energy, appetite is not good, dizzy, tired all the time, headaches, blurred vision every now and then. I keep telling my primary something isn't right but no one can figure out what is wrong.

Is my ANA titer test of 1:2560 alarming? Anyone else going through these type of symptoms?

REPLY

Hello @steph0219, welcome to Mayo Clinic Connect. What did your doctor say about the ANA titer test results? I have no medical training or background but I know each of us are different and there can be many reasons for different test results. There is a good description of the test here:

MedLinePlus.gov – Antinuclear antibody panel
https://medlineplus.gov/ency/article/003535.htm

Autoimmune diseases can sometimes be difficult to diagnose. There is a really good TED Talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
What happens when you have a disease doctors can’t diagnose https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnos

I'm also tagging members @slim1938, @nikohl7 and @sheker who have discussed different blood tests and positive ANA numbers to see if they have any suggestions for you.

@steph0219 have you thought about trying to get a second opinion?

John

Liked by steph0219

@steph0219 Here is a book that might help get you started on discovering how disease can come out of trauma and PTSD. I have one of her books (not this one) and it is excellent. I'm glad you posted here, and the author also has some support groups too. Her books talk about hope and healing. https://donnajacksonnakazawa.com/autoimmune-epidemic/

A functional medicine doctor might be able to help as they look at the chemistry of what happens in the body. You might find that your health gets better as you work through things. When you look inside at some of that emotional stuff, you can sometimes acknowledge it and move past it, and be free of it. PTSD is treatable and worth the effort. I thank you for your service and that must have come at a high cost. I don't know how to interpret your ANA numbers, but mine were slightly elevated at one time and I had pain in my joints. I made a lot of changes and recovered my health. Some of it was gluten intolerance, but also a lot of food allergies, and foods that caused joint pain or breathing difficulty (asthma). It's easy to talk about things as a diagnosis, but remember that those are just categories for doctors. I once was told I had fibromyalgia, and I set about finding and changing the things that caused problems. As patients, we do have some power over our health that way. It's a journey of discovery and you can empower yourself by making changes. I didn't want to accept the limitations of a diagnostic label, so I did everything I could to change it with diet and exercise, and I had my old silver fillings replaced because they are a source of mercury and had contributed to a thyroid autoimmune condition.

You've mentioned eating disorders and IBS, and it might be worth experimenting to see if gluten is a problem. Gluten issues and Celiac Disease cause symptoms similar to what you describe and mal-absorption of nutrients, and it is an autoimmune issue which is linked to greater risk of other autoimmune issues. The problem is that wheat and gluten is in almost everything and it comes from grain (a protein). Here is some information on gluten in foods. https://celiac.org/gluten-free-living/what-is-gluten/sources-of-gluten/

You can test this by eating no gluten and see how you feel. If you eat plain meat and vegetables, and avoid bread and grains, you might feel significantly better, and it's easy to do. There are blood tests too. I would also suggest reducing sugar intake for the reason that sugars and simple carbohydrates cause inflammation, and with IBS, you would have a lot of gut inflammation. All of that can be causing pain in the rest of your body too. That was true for me.

It's a path to better health, and your path may be different that mine, and you'll have to take it step by step to find all the pieces of the puzzle. I hope I've given you some good suggestions.

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