Anyone with similar experiences, positive ANA results?

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Over the past ~4 years I received a positive ANA blood test result which has been gradually rising. The first time it was the lowest titer and dismissed. Last year it went up to 1:320 speckled, so I went to the rheumatologist and was basically told they weren't concerned...yet. I was annoyed with their assessment, but they are the expert so I accepted what they said of course. This year it's now at 1:640, speckled. Last year and this year I had anti-RO, anti-LA, sm-antibodies, RNP antibodies all around a value of 5 for each...and anti-DNA of 12 IU. These values are all considered low and negligible, but I still feel concerned that they are present.

I've had troublesome symptoms for many years. The current issues are chronic fatigue, chronic neck pain, headaches, chronic breathing discomfort (non-asthma), sore spine, chronic leg muscle soreness and tightness, night time burning hands and feet, anxiety, depression, ADD, weight gain with bloating, brain fog, etc. Some days the body aches and fatigue are worse than others.

I've talked with doctors for many years and they've always told me that I have fibromyalgia...but I do not feel that this is entirely accurate considering my ANA results. Has anyone else had similar ANA lab results and gotten a specific diagnosis? I feel that there is something else going on in my body and I want to research the real possibilities so I can discuss it more with my doctor. I hope someone has some experience with this! Thank you in advance 😃

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  • Edited

    Hi there,

    I have all of the following! Was perfectly healthy until the end of eighth grade, then had five idiopathic anaphylactic reactions in the span of two weeks. Never figured out why.

    Got pulled out of eighth grade to avoid any further risks at reactions, and was put on 85mg of Prednisone a day, which caused me to gain about 20 pounds (I'm 5'2", so that was quite a bit) then slowly was taken off it after three weeks.

    Had been developing hip pain all year, but after the reactions, the pain got worse. By the fall of the next year, I was experiencing chronic and pretty bad neck pain, which has continued to get better and worse in waves, but with an overall worsening trend in pain and functionality. The neck pain could also have been exacerbated by the two cups sizes I gained on my chest while on the Prednisone.

    It's been five years, and I now have full-blown arthritis (worst by far in my neck and back, but also bad in my hands). I also have daily muscle pain in my neck and back that feels most similar to fibromyalgia. When I crack my bones (neck, back, hands, wrists, shoulders, etc.) for a little more range of motion, the cracks are great in number and most of the time alarmingly loud. I drink about a gallon of water a day to avoid migraines, I never go outside without sunglasses because I get migraines from the light, and my fingers either redden and swell up to about double their size in the sun/heat, or otherwise show symptoms of Raynaud's in the cold. Fatigue is a part of daily life, and about one day a week in a good week, or seven days a week in a flareup, I'll have to sleep because the physical exhaustion is too much.

    I usually use my fingers to see what kind of day it's going to be. When I feel symptoms coming on, it's usually my fingers that react first, and then the whole body follows similarly.

    On hot mornings, I'll wake up with swollen fingers and a sort of hot, achy pain -- I also experience this during what I'd call a flareup. These flareups happen randomly, sometimes once every other month, and sometimes I'll go six months with nothing and then get one that completely disables me. These last on average for about a week at a time.

    When it's cold, I'll wake up and feel like Pinnochio, and my fingers will be icy to the touch, knobbly, and feel almost brittle. I'll have to crack, flex, and unfold each joint for around five minutes until I'm steady/flexible enough to get out of bed. These days, it is slower to move, but the pain is more creaky rather than hot and inflamed, if that makes any sense to you. Both slow me down and are painful, but the cold is more of a constant, dull and sometimes sharp ache while the heat/flareup pain is more of a swelling, burning pain. I prefer the cold, but optimal temp is like 50-60, where I might get a perfect day in which my fingers stay cold (cold enough not to swell, warm enough not to seize up and lose function) and the pain is manageable. I won't be running a marathon any time soon, but walking and even responsibly using the elliptical can be part of my daily life without too much complication.

    About a year after the anaphylactic reactions, I started to notice rheumatological complications every time I got sick. A cold will send randomly render me immobile for six days, and a virus will make one finger redden, become very hot, and remain stiff and completely unbendable for two weeks.

    Some months are better than others, and summer is almost always the worst. My face is usually pink if not red, and my cheeks and the sides of my nose will become scaly and flake off if I do not moisturize daily. Bloody lesions will appear on my face and scalp, but they're not big (no more than pea-sized). The occasional interior nose ulcer has begun to appear as well. Small parts of the skin on my face (I used to think they were acne, but they're not coming from clogged pores) will get hard and scaly and then flake off and bleed, and leave a scab behind.

    I've also had other scattered instances of unexplained anaphylaxis since (Two years ago, without eating anything, I fainted, threw up while unconscious, and then woke up. Six months ago, I had a crippling pain in my right upper abdomen, and it was excruciating to move for about six hours -- the next day I woke up fine and with no trace that it had ever happened.) I was also diagnosd with ADHD last month.

    I'm nineteen now, and still have zero idea what's going on, but hopefully this helps someone!

    Edit: ANA as of eighth grade was 1:320, but I haven't been tested since.

    • Posted

      Oh, also! ANA (as of eighth grade) was 1:320. Haven't been tested since.

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