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Sun Sensitivity - Lupus or Fibro?
4 Replies
Kotka - August 6

Hi veterans,

I am a newbie without a formal diagnosis, but a ton of symptoms that may be pointing to fibromyalgia, or lupus or something else autoimmune. I have been seeing a rheumatologist for a year now but except for slightly elevated ANA ( 1:40) and very muild iron defficiency the tests do not show anyting.

I have awful pains in my neck, back along the spine, burning all over my body including hands and feet, a post-nasal drip that comes and goes, cold sores in my nose, itching in my eyes, plugged ears, dry cough from what feels like chest inflamation.

Lately I think I started noticing that the sun may be affecting me - after I have been out by the pool (even in the shade) I get chills all over my body, my nose start to run, my throat and lungs seem to get congested and I need to take a hot shower to get my blood moving.

Does anyone else experience something similar related to the sun? I am so hoping this is not lupus.....

 

JJ1 - August 7

Your symptoms could be related to fibro, but wondering if you could also be having some kind of allergic reaction (itching eyes, post nasal drip, dry throat, congestion). I had no allergies growing up but seemed to develop them as I grew older. ......... what is ANA? ......... By the way, I have chronic anemia that my be due to my FMS or some other underlying condition and have to get iron IV injections twice a year to keep my iron up. Please keep an eye on your iron levels.

 

Kotka - August 7

Thanks JJ1.

ANA is abbr for autonuclear antibodies - usually people with lupus have them. I went to one of the best doctors in NY today and he thinks that I have an overacticve immune system - non specific connective tissue disease. Which is good to an extent. On the other hand allergies are just that - overactive immune system to a certain agent or stimulus. I am starting a low dose of prednisone today and will see where this thing goes. As for the Iron - mine is low too.

Thanks for your response.

 

Bridget B - August 10

you might have something else. i have fibro and the sun does not bother me. This sounds much more serious and you need to find different doctors and opinions. that's what i did.

 

sunshine1966 - February 20

I had the same symptoms as you plus many more symptoms and bluing of my extremities when exposed to cold (Raynauds). My ANA was 1/80.Some peoples titres can be low,sometimes they gradually go up.Sometimes people have lupus and it is rare but can happen that they have ANA negative lupus.People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies."When the ANA is negative but the diagnosis is still strongly suspected, a test for anti-Ro (also called anti-SSA) and anti-La (also called anti-SSB) antibodies may identify patients with a rare condition called ANA negative, Ro lupus. These autoantibodies may be involved in the sun-sensitive rashes experienced by patients with SLE and are also found in association with neonatal lupus syndrome, in which a pregnant mother's antibodies cross the placenta and cause inflammation in the developing child's skin or heart."They should look for in the blood panel......... C3,C4,anti-double-stranded DNA, anti-Smith, anti-U1RNP, anti-Ro/SSA, and anti-La/SSB....with antiphospholipid syndrome they should look for anticadiolipin Ab,False positive syphilis test, INR/Prothrombin time, P.T.T, and lupus inhibitor.If you have any bluing of your extremities when exposed to cold I would suspect Raynauds Phenonmena or any issues with bleeding I would suspect a blood disorder such as APS.I am going to give you a little quote"It is important to realize that even though 98% of people with lupus will have a positive ANA, ANAs are also present in healthy individuals (5-10%) and people with other connective tissue diseases, such as scleroderma and rheumatoid arthritis. Moreover, about 20% of healthy women will have a weakly positive ANA, and the majority of these people will never develop any signs of lupus. One source cites that some ten million Americans have a positive ANA, but fewer than 1 million of them have lupus. Therefore, a positive ANA test alone is never enough to diagnosis systemic lupus. Rather, a physician will order an ANA test if the patient first exhibits other signs of lupus. This is because by itself, the test has low diagnostic specificity for systemic lupus, but its value increases as a patient meets other clinical criteria. It is possible for people with lupus to have a negative ANA, but these instances are rare. In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies."

 

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