OK i have been looked at by my rheumatologist for the last 5 yrs quizzically as I always have my worst flare in April thru June. She would say "isn't that odd most people feel better this time of year." So I thought here we go again, I am different than everyone else.
This is when I was diagnosed with Fibromyalgia. Now my point .... and I do have one, lol ,,, I have lupus, one of the first things I have been told is to stay out of the sun. Well in April the days are longer and warmer and I am out much more in the sun. Helllllooooo !!! LUPUS !! it just dawned on me today ...why I get sick in April. I am happy to say I have a new Rheumatologist, With this last flare which was my worst to date, it is taking me months to get my thinking straight. I am astounded that my dr.'s did not see this. I feel like I have to be the dr. and the therapist, and the pharmacist, the researcher for medical problems, nutritionist, it is exhausting !!
You all are the only ones who would understand this revelation !!!
Yes you are so right.....and we have to be detectives too and figure this stuff out for ourselves sometimes!!!
And I think the members on this site know a lot more than some of the rheumys.......you can learn a lot and get a lot of good information from the others on here.......
Now you will be prepared and ready for next April !!! :)
Flower, you said it very well. We often do have to be real problem solvers for ourselves. And yes it is exhausting. I think we are fortunate to have communities like the one here where we can learn from each other. It is so helpful.
I'm so glad you are doing better. Whatever you are doing works for you - big YAY!
warm hugs, Louise
I was first diagnosed with lupus in june. My rhumy was sure it was ra. I had been swimming in my pool. My face was covered with brown spots, on my check and nose was ared bumby rash. I went to a regular appointment with rhuemy and she didnt say one word. That same week I seen my pain management dr. He walked in the room and said tell me about your face. To make a long story short. I went to another rheumy the next week and she did blood work. I tested positive for lupus. My wprse and most often flares are between may and end of august. In the heat of summer I don’t leave the house between 10 and 3.
I always have long pants and long sleeve shirt when I go out no matter how hot i is. I couldn't find lightweight pants so I had to make them. They make a big difference. I think I have good drs. I don't have any pain so I am very lucky. The fatigue is my worst symptom, The plaquenil took care of my horrible mouth sores. I'm amazed at the similar symptoms and alergic reactions and diagnosies and other auto immune disease we have in common. My brain, that's another story sometimes I sit here for a few seconds trying to figure out how to spell a simple word.
Have a good day everyone.
My rheumie never told me anything about my lupus, just handed me prescriptions. Everything I know about Lupus today, I learned here from my LWL family.
I think we all have similar experiences, but understand the uniqueness of the disease and that it impacts each of us in a little different manner than the other. We can't be placed in a "lupus" box, as your lupus impacts things that mine does not.
However, I think you are definitely on to something here....I was diagnosed in July...rash started on face in June. Being out in the extended daylight could have been my trigger too. I just bought a large brimmed hat for gardening that was on clearance and boasts a 50 UPV. I will be looking for some loose and breathable long sleeved shirts and pants/skirts for next spring/summer. I have learned so much from my short time being in this forum...it is so nice to be in a place where others "get it" and understand the daily struggles both physical, mental and medical that go along with a Lupus diagnosis. Thanks all!
you said this so well. I am currently thinking of changing docs as mine is great, but I can't get in unless I schedule at least a month ahead so seeing her during a flare is not usually possible. :( I have a fibro diagnosis, but I think I may have lupus too and she said my test (singular) ruled that out. How is that possible if multiple tests are needed?
I don't have the facial rash, but I get the bumps especially in the sun like you mention.
My nutitionist put me on a minimum of 10000 units of vitamin D a week. Honstly, I can not tell if it actually helps.
I love the sun. We just moved to Florida and the beach is my favorite part of living here. I buy what I call SPF for vampires, slather myself in it, wear an SPF swimsuit cover and hat to go look for shark teeth and shells. I am saddened that learning to surf can never be :-(
I have rash all over my extremenites and a few on the torso, but I dont have any on my face. I CANNOT be in the sun.
I had one ANA which is positive and 2 biopsys which were positive. As everyone know if you ask 100 Lupians you will not have 2 that have the same symptoms.
Yes taking vitamins really do help because I was tired all the time. It didn’t matter if I was in the sun or not but felt it more after being in the sun. So I started taking vitamins B12 C and D and it took a while to start working but I have better energy and I rest better. Yes I still have bad days but not as many as the good so yes take the vitamins be patient and you will notice the change. Good luck and may God continue to bless you with good days over the bad. Take Care
I moved into an apartment with neon lights in the kitchen. I had not been diagnosed with Lupus at the time. I got very sick and was sick until I moved out to another home. My Doctor diagnosed my many symptoms as Lupus about a year later. I never discussed this as with a doctor but now I look back and noted that I got better after I moved. I know people with Lupus must avoid sunlight but I am wondering why I had the worse flare when I live where there were neon lights or was it just a coincidence that my symptoms all lessened when I move. Has anyone experienced reacting to neon lighting?
No , have not exerienced that but t wouldn't be surprised if that was the cause. Nothing would surprise me about this crazy unpredictable disease. I don't usually believe in coinidences. I too was diagnosed a year ago,
Hope you have a good weekend.