Hi all. Just wondering if being in the sun or just laying out on the beach effects the ANA level etc... Basically will it make the ANA show up when I go for my labs this weekend? If so how long before labs do I get some sun. My VitD is a 3! Do I could use it but I need help I'm willing to do anything to get these fools to admit they don't know what Lupus does and give me some meds!!! This suffering is horrible it's like the phantom disease that you have to snap photos of to prove you can't think, eat, sleep, walk or even lift your head from the pillow!!! I want my life back!!!
P.s.
Suffering in Delco PA
Written by
winterbaby07
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I can see that you are feeling desperate. I understand how you feel - getting a diagnosis can be such a frustrating battle. I should warn you that if you do have lupus, then laying in the sun could trigger a dangerous flare-up. Many lupus patients are photosensitive. Do you think this is worth the risk? There are safer ways of getting your Vit D levels up - supplements work well. Have you got a doctor or lupus nurse you could talk to about how desperate you are feeling? Do you have supportive friends and family? Talk to someone, get support. I really hope you get a diagnosis soon and the help that you need. xx
Hi there yes I understand the risks I think I was just so very frustrated my life is upside down and these Drs just keep fooling around like they don't realize this is my real , our real lives and this is brutal on all levels I felt like I was dying last night!!! I'm just getting out of bed something has to give I'm feeling defeated! Thanks for your support and words of encouragement
It sounds like you had a terrible night. I think you need to keep ringing up the doctor's until you get seen. Do you have a referral to rheumatology yet? If so, it's worth phoning the nurse /secretary and explaining how bad things are. Feeling so bad for so long without answers understandably causes feelings of hopelessness and anxiety. It can also cause depression if it goes on for too long. Don't let them fob you off - you are worth it!
Winterbaby, I see you are in the USA...So am I..I don't know how the doctors are in the UK and Europe, but the doctors I have dealt with in Ohio were very dismissive of me for MANY years.It was awful.Still is.My doctor now, and several I have had through this hellish journey, were very evasive when I would ask to see a specialist..Some would get "kickbacks" when they referred someone, but many didn't, and they did NOT want to lose the patients business, so they would not refer.I suffered from the late 1980's, until a diagnosis in the earlier 2000's.Way too long.
This is sad to say, but I tell people all the time to chart symptoms on phone. .Definitely take pictures of any rashes, joint swelling, raynauds, bruising/petechiae. ..just about anything on your body rhat just isn't right..It is awful..I feel your discouragement because I have been there..Don't give up on yourself. Xx
Also, alot of tests don't always tests positive unless in an active flare.Too much emphasis is put on tests results, and not enough on a patient and their personal symptoms. .Good luck.
Hello there, like Dryad I am most concerned that you need to discuss your health with your GP or Rheumatology nurse/Consultant. If you have Lupus then exposure to the sun is very likely to trigger a flare and could make you very unwell. If you have such low levels of Vitamin D then that could definitely contributing to why you feel so unwell. Many people with low levels of Vit D can bad joint pain for example. Supplements are the way to go for most Lupus patients. With levels that low you need a Vitamin D injection to boost your levels and then to take daily high dose supplements.
Regarding the ANA levels. This are measures of how your immune system is responding and are diagnostic blood tests for Lupus and many other connective tissue diseases. Most are unlikely to change with you being in the sun. however, for those people who are ds-DNA positive then this is often a good indicator or how active your Lupus is and if you expose yourself to the sun it could cause a flare and this level could rise.
I hope that helps. Lupus is a VERY complicated condition and everyone is very individual!
Yes I am DS DNA positive low iron binding etc but now I think the Sjogrens may be showing up I cannot take my shades off without my eyes running, mouth dry , eyes dry, vaginal dryness , reoccurring yeast infections all unexplained. Fibro is all over the place too!!! And my bone structure of my knees are looking weird and more and more just bone and skin!!!
I would like to echo what other members of the community have said and warn you against deliberately exposing yourself to sunlight and risking a flare. As others have said, if you are deficient in vitamin D, you can get supplements prescribed for you, which is a much better way to resolve this and potentially alleviate some symptoms.
There is no knowing whether triggering a flare could make your test results positive - there are some people that never have positive antibody test results, regardless of how active their disease or severe their symptoms. It is not worth risking your health.
The sun will cause some additional fatigue, and if you have Discoid Lupus, it may awaken the butterfly rash. I live in south Florida all year round. My ANA is always positive. The sun does not cause Lupus, and the ANA is a factor in your blood that only shows that you have an autoimmune disease- one or more. Lupus is difficult. When I hear of young kids being diagnosed, it makes me sad. However, younger people have a chance to go into remission.
When you are diagnosed at the age I was - 67 - this is the rest of my life - however long or short it will be. Activity will help fight the fatigue. I'm about to play tennis - I play 4 days a week. Of course, my game is not as it was. Some days I can't hit a ball. But if I stop - my body will quit as well. You must be active and fight this demon. Don't let it get YOU - you can get IT! We're here for you - we all know what it feels like. Don't ever feel as if you are alone. Yes, we also get Lupus brain. Our focus is off - our brains sometimes slow down - and our memory wanders. Get out there - bike ride, exercise, walk, run, play tennis, swim, or do whatever you can but just know that for each moment you are doing some kind of activity, you are fighting Lupus! Good luck!
Thank you for your kind words of encouragement and support and you are right!!! Some days are just.... Not as good as others ... Now time to atleast pretend to be a mommy!!! Blessings
You ARE a great Mommy - with health issues you didn't ask for. We're all in the same boat, and unfortunately, we were not given a "choice" about having these awful diseases. You must accept yourself and not try and change things. Enjoy your wonderful kids because they grow up too fast. I know how difficult it is, to function when you are sick. I know how I feel, at my age. Every day is a battle for survival. I amnot sure what I would do if I had to take care of little ones now. Aging has its own issues, but couple that with Lupus, MDS, ITP, and a host of other conditions - it's not very fair. I know you get depressed a lot. I know you sometimes even ask "Why me?" It's normal. I do that too! I know some really nasty people who are older than I am and take one pill a day and travel and eat dinner out 5-7 times a week. With the Raynaud's that accompanies Lupus, eating in a restaurant with heavy air conditioning makes it difficult for me. What do I do? I order hand warmers and take one with me every time we go out. Raynaud's causes fingers to turn white, then purple, and totally numb. 90% of people with Lupus have this or eventually develop it. You just deal with it. You order hand warmers and wear a heavy sweater. Winter - I am with you, and I feel for you. Fight! You go girl!!!!! Feel free to write anytime you need to talk....
I agree with tennis senior.Im 77, diagnosed with Sub Acute Lupus Erythameotus 18 months ago.Used to Play golf 3 times week then unable to play until just recently.I now play once week on a flat course an this week have played twice. When I get home I need to rest on my bed for about an hour. I do get the terrible brain fog and getting to sleep is a big problem,hence I'm up later in the morning.does it matter at my age ?????? Keep going.
It's not easy. We're both not that old, and you really need to push to get out there and play golf a little more often. Honestly, if you are more active, you won't feel as much pain or fatigue. I feel worse on the days I don't play tennis. I play 4 days a week. I play doubles. Many times, I play so badly that people make comments, and on other days, they tell me how well I played. The bad comments hurt. They don;t understand about Lupus and that we really ARE sick. Truth is - they don't care. Most people are interested in themselves. They just want "a good game." But you, Meg, have to try and push for more activity. Yes we're going to have brain fog - commonly known as "Lupus brain." I have trouble sleeping even with all the Xanax I take. What are our choices??? None are good! Everyone on this forum understands. The one thing we can't do is educate people who don't want to be educated and learn about what we go thru on a daily basis. I've written several articles and I am trying to get on a panel called "Patients Like Me." You name it - I've been thru it. I was considered an executive in a major corporation; I was a ski instructor and a part time model and the worst part is - I Don't Look Sick! I also don't look my age. Combine that, with out on a tennis court 4 days a week and try and convince people how we feel. VERY difficult! Keep pushing Meg! Line up those golf clubs and get your butt out there! Remember what I've said - the more active you are, the more you are fighting Lupus!
Hi Tennissenior.just to let you know I played an awsome game of golf yesterday playing 10 under my 27 HC which has now been reduced to 23. Also played twice last week.
Sadly did not sleep well last night !! If only I could just drop off and stay asleep !
Today is my day off from tennis, as well as tomorrow. I play on Friday and Saturday again. I played with 3 men - won the first set at 6-3, and then crapped out in the second set. Fatigue set in as well as the headache and nausea from the ITP and the heat. My labs came back - 16 abnormals. Glad to hear your golf game picked up! If I can be your "supporter," it makes me feel good. I wish there were some way to raise my platelets so at least my headaches might go away. That's the worst part - persistent headaches and bruising. I asked about a splenectomy but my hematologist said the results would be temporary. ITP is a manifestation of Systemic Lupus.
I returned this morning from a week in Turkey. The temperature was 36 degrees by breakfast time so, although not prone to photosensitive rashes, I plastered myself in the thickest SPF50 that I could find, wore a vest top too and was careful to spend much of the day either in the sea or shade. After 2 days, I noticed (and ignored) some warning signs of an impending flare and by day 4 was struck down with such severe joint pain & swelling that I was reduced to tears through the nights. Clearly, my body was protesting as loudly as it could.
Lounging around did nothing to improve things and, to my disgust, I was so lame I needed to be wheeled from the plane across the tarmac. To echo some of Tennissenior's advice - steady exercise is the key to optimum mobility. I couldn't manage the level of exercise that she does but I do walk my dog twice daily regardless of how disabled I am and I am always better for the exercise.
I am one of the ones who rarely produces antibodies (even after 25 years) so I rely on photos and a good relationship with my GP, Consultant and Rheumatology nurse to help.
Good luck with getting the treatment you need. Clare x
Thanks Clare sounds like me after Jamaica I had no clue I had lupus until I came back and was so sick they did everything even a spinal tap and still nothing! Then my GP did blood work and that's when the DS DNA showed!!! Now this 😔
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something has to give I'm feeling defeated! Thanks for your support and words of encouragement
Positive Ana then negative
Hydroxychloroquine update and ana blood result question.
ANA ELISA Test
Positive ANA&Positive DsDna/ Negative ANA & Positive DdDna
wait until lupus flare to have Ana blood test
