Help Please

I am 32 -years old and for the past year have been experiencing things I can't explain. It started in 2013 with severe headaches. If I was out in the sun all day ( I lived on a island ) I would get uncontrollable shivers at bedtime. I had MRI , CT scan & ultra sound all showing nothing but enlarged liver. Next comes changes with skin on my face. I would get dry flaky patches across cheeks and above eyes. Next was joint pain and fatigue, abdominal pain and swelling as well as now 8 enlarged lymph nodes. I go through patterns of feeling good or better than usual and then times when I'm so weak I can hardly climb out of bed. The joint pain seems to come from cartlidge or muscle around the joints and the dry patches on face are now red cheeks with raised patches. I had one positive ANA 1:40 homogeneous and sed rate and crp was high. DSDNA was a 6. We moved to east texas and I went to see a new Rheumatologist to continue testing. He said all my bloodwork was perfect. I'm at a loss and any advice is appreciated. This has me very depressed.

  • Howzit laura, i know what you going through, sle is ugly. It can be very painful & tiresome. Ive been dx 5 yrs w/ sle. It was on goin testing over 25 yrs before the beast showed itself. It took me to hell and back several times and it can make you depress. This support group is awesome, its very informative and you can see what lupus can do. Keep believing in the lord he wont give you nothing more then you can handle. when im in the blues, i think of happy place and warm memory to lift my mood.

Thank you so much for the comforting words. This has been very difficult for me because my family and friends don't understand at all. They all feel that if I have hurt this long and still nothing really has showed then there is nothing wrong. How did your sle finally show itself? Did you experience anything that I have mentioned above? Did it take a long time to show up in your blood.

Well…my first thoughts were “Bingo,” welcome to the club. Sounds awfully suspicious to me. Sometimes it takes many years to ghee diagnosis. I’m 59 and just found out less than a year ago…and I can trace symptoms back over 40 years. Not sure how many rheumatologists are in your area, but I’d gather all your tests and hunt down another doc…and try to find one that is fairly familiar. I wish you well…it’s a weird disease, with everyone being different, yet the same. Provide copies to your family of what you read or what others write to “enlighten” them. Buy the book “the Lupus Encyclopedia” by Dr. Donald Thomas. By far the best Lupus book out there.
As you know, we have flares…my blood work is decent right now too…but I still have Lupus. I’ve been sicker than sick…but I’ve also felt quite normal, thank God. Let us know any updates.

Thank you very much. Yes enlightening my family would be great. They don’t seem to think anything is wrong cause I don’t look sick. This is hard cause I never know what the day will hold in store for me. My pcp says she thinks its all auto immune related but I need to have a good Rheumatologist to diagnose it. Just got referral to another for a second opinion. Also will have biopsies on the lymph nodes so I can get some sleep. That has me worried and makes everything else flare up worse.

Do you understand how very conservative you have to be re sun & strong artificial light? It really is of paramount importance, I too live on an island in the sub tropics so can empathise with difficulties. Best Wishes to you. Kaz xo

No its never been explained to me. Is it just heat or sunlight? We would be in sun all day then night time i would have rigors. It took 4 blankets to get warm. Headaches were horrible. I haven’t had things explained to me because everyone is telling me if i haven’t been diagnosed then i dont have it. :confused:

I am sorry to hear you are going thru all this. It took me a long time to find a doctor I liked. You need to be able to trust them. Also, no sunlight or artificial sunlight including tanning beds. I was told by my doctor having Lupus is like being a vampire. Very restricted and a change in your diet. Red meats cause flares, high fats and sugars do too. Good luck with everything and we are all here for you if you need us!!!

You will need to read up on a lot of information. Start with (as stated above by several posters) Sunscreen ALL the time & full barrier clothing. Strong artificial light to be avoided also. Tons of information re Lupus available on Internet start Googling around & reading. Trust your instincts, if something sounds silly keep researching. Your G.P. (Primary Doctor in USA?) should be able to point you in the right direction. Again Best Wishes to you.

Laura Dickerson said:

No its never been explained to me. Is it just heat or sunlight? We would be in sun all day then night time i would have rigors. It took 4 blankets to get warm. Headaches were horrible. I haven't had things explained to me because everyone is telling me if i haven't been diagnosed then i dont have it. :/

It’s not only sunlight…or heat…it can be from floured cent lighting as well. And these new bulbs that have come out are worse than regular light bulbs. Go to
There is a Johns Hopkins website…and Mayo clinic website all for lupus.
Know one just recognizes lupus…most have never even heard of it!! But it’s like the worst flu ever with mounds if every other thing piled on. If you do get diagnosed, they may put you on plaquenil. (hydroxychloroquin) it generally kicks in at about 3 mos. They refer to it as “the life insurance for lupus.” Although there is no such thing…it made me a believer! Feel SO much better.

Whoops…didn’t edit my wonderful “spell check.” But one mistake was fluorescent lighting.

Thank you all so much. I will do lots of research. It’s nice talking to people who understand.

What everyone is saying is true. Stay out of sunlight and inside lights in offices, malls, etc. I keep house lights off. Took 6 yrs for me to have lupus show in blood work. Try biopsy of skin to see if you can get lupus diagnosis there. Will show in skin usually first. May be cutaneous or systemic lupus but helps drs focus on lupus. Ignore people who wonder if you’re sick. Can’t see cancer in patients. Can’t see lupus. Never do more than 80 percent of what u r capable of doing. Save the rest of you will have weeks of down time. Try to find rhematologist for diagnosis. A teaching hospital would be a great place. Good luck

Thank you. I found a rheumatologist today. He happens to be a professor at a medical school that teaches rheumatology. He also has lupus. Really hope i hit the lotto with him.

Awesome! Perfect. A dr with lupus is major lotto win! Will totally get it without a lot of explaining. Yay!

Dear Laura

If I had a dime for every time someone has said "But you don't look sick" I could fund a years worth of research for new and better treatments for this disease. SLE Lupus or Lupus in general is a trickster disease so getting a definitive diagnosis can be very difficult however just because no one will name the puppy doesn't mean it doesn't exist. I would suggest keeping a note book with all your symptoms, test, and results to take to all your doctors and try to get them to communicate with each other putting together a team of professionals to come up with a game plan for your on going health is extremely important. And take all the preventative measures that others have mentioned especially the sunscreen and clothing. I know it can be so frustrating and depressing dealing with all this but we are always here for you. The books suggested and web links have helped me a lot and there are some scathingly brilliant people on here that have knowledge that far out strips my own. I hope they can at least treat the symptoms until you get a real answer as what is going on. God Bless if I can be of any help just let me know Julie


Dealing with these 'auto-immune' diseases that we all are dealing with can get us down at times. Please know that my wife and I are praying for healing from GOD for you. Be at peace and know that He is with you.


Haven’t used it but love the idea of the comeback to “you don’t look sick”. “You don’t look dumb but sometimes looks are deceiving”


ABSOLUTELY…SUNSCREEN. They recommend a broad spectrum UVA & UVB AND WITH HELIOPLEX. Neutrogena makes a nice one. Should reapply during the day. And use a shot glass full. Wear a broad brimmed hat all around. They are making more UPF clothing and you can buy (def online) the laundry powder that washes the UPF I to your clothing. I’m a newbie at all if this too…it’s almost a year. Never knew for years why I felt so lousy in hot and sunny weather. There are life adjustments…just take them in stride. SO many people get hung up on “changes” in life (whether you’re a lupy or non lupy) and worry much more than needed (and that just creates more stress that isn’t good for us) this doesn’t sound the way I mean it…but “I just don’t care” any more. Meaning if one door closes because of this, another will open with something else…whether it’s a job, family relationships, not being able to “do” what I used to for a while or forever, I’ll figure something else out. STRESS AVOIDANCE. Believe me, I’ve had my share of bad days, weeks, months…when the big “L” hits me…just let your body dictate. Don’t push it. If it’s summer time and you wish you could be swimming at the beach or pool yet you feel like crap, lay on the couch and write your Christmas cards!! (If u feel like it. You’ll be doing “something” and getting it done before you have to…less stress and 1 less thing to do before the holidays. Or just RELAX…something so many of us don’t take advantage of.