Does any of this sound familiar?

BluejeanBluejean Member New Member
I have been looking for answers since I got sick 19 years ago.  I got really sick with Grave's disease back then.  I was so week it was hard to walk.  I had very swollen painful glands in my neck-just on fire.  They have hurt every month or 2 since.  Drs couldn't explain that.  I had chronic flu like fatique ever since.  After two years my endocrinologist said I am one on those that never gets over Grave's disease and would never feel any better.  I had a blood test for Lupus but it was negative.  I had cousins with Lupus, Scleroderma, Juvi Diabetes, and 2 others that also had Grave's.  I have ANAs and had to start a business so I could keep a job.  It was a battle against my body.  I pushed and pushed myself until I lost most of my work a few months ago because of worstening Neuro. problems for several years.  I didn't tell too many others how I felt because many people didn't believe you.  Even some other Drs  Thought it couldn't be that because it is so rare.  I always thought I might have a mild version of another auto immune disease that involved swollen glands.  Three years ago I got bad dry mouth along with the dry eyes I had had for many years.  A DR thought I might have Sjogren syndrome.  I found out just a few years ago that you could still have autoimm. problems without blood testing postitive.  Went to Hawaii for the first time in 10 yrs and had a strange experience.  Bought a hat and a lot of sunscreen.  First day at the beach-we just stayed for a few hours.  I love to swim in the ocean and snorkel..  Went out for 20-30 min to get a little color then dryed off and loaded up with sunscreen.  The next day I had blisters over a lot of my back.  I had been to Hawaii many times years ago and never got a sun blister!  I also got a funny burn on my face even though I didn't have exposure there.  It was in the middle of my face and cheeks with white on the sides.  A man trying to sell skin lotions to people near his store wanted to sell me lotion for rosacea.  I kept covered up the rest of the time.  After incredible pain and strange thick peeling it is 3 weeks since I got burned and it seems not to be healing well-it still looks like I just got a sunburn  The general Dr said maybe I got a really bad burn.  I have a picture I took a year ago of a strange rash on my cheeks kind of triangular shaped with no sun exposure.  But I don't have a lot of joint problems except about a year ago one day when one knee was really swollen and I could hardly walk on it.  It has been sore off and on since.  I had to wait for 4 months to see a Neurologist in a few weeks.  I will ask him about this.  I don't know when I can get into a rheumatologist to ask about Lupus.  May be months if I can get in.  It is nice to maybe have answers.  It helps so much to read blogs and comments by those with Lupus.  Thank you.  I know I have to wait for a Drs advise but do these things sound familiar?

Best Answer

  • BluejeanBluejean Member New Member
    Answer ✓
    Got a call today-I had a positive blood test for Lupus. There are other tests to prove it I guess that I still need to take. Believe in you self! Don't let others dismiss your concerns about your health. I think maybe I have had it mildly for years with my other autoimmune problems.  I defied it, rested more, but enjoyed life anyway!  


  • BluejeanBluejean Member New Member
    An update because no one has really been any help at all.  Maybe my comments can help others.  I got what seemed like a third degree back blistered burn after two hours in the sun in Hawaii.  I had learned on previous trips ( I have been to Hawaii about 36 times but it has been about ten years sense the last time)  to get a little color in maybe a half hour and then load up with sunscreen.  I did that this time but still got my back majorly fried.  My back saw the sun just that one time on our trip and I wore short sleeve tops, Log shorts/capris, my hat I bought the first day, and loads of the sunscreen the rest of the trip.  There was major pain!! It is a month and a week later and I still have the sore itchy red sunburn on my back.  My local Dr gave me some cortizone pills to take and just thinks I have a really bad sunburn.  I think the pills may have helped a little but I know from a lifetime of trips in Hawaiian sun that this is not normal.  Called my allergy Dr to see if I could talk to her nurse to see if this is normal and what I could do.  FINALLY someone took me seriously.  The nurse said I should get in there as fast as I can!  So I am going in tomorrow.  It is 80 miles away.  I tried to get into a rheumatologist but couldn't get an appointment until the end of September! I knew Lupus was one possibility because some family members have it.  I don't really go out a lot in the sun anyway.  I never feel well and it is often all I can do to get my work done but I preformed an experiment today.  I need proof at the DRs tomorrow so I sat in the bright sun in my yard in Wash state today for about 15 to 20 mins. looking up at the sun.  I was not hot because of a nice breeze blowing.  I was surprised to look in the mirror  a sunburn in 15-20 min!! except under my nose which was white and the end of my nose was white so not a real sunburn.  Laid down for a while.  After resting the burn/rash had lightened a little but still a blotchy sunburn looking rash except white under my nose and on the end of it!  Maybe will find something at the allergy DR tomorrow.  I read that you can get an allergy to the sun too.  A shout out to all the people who are dismissed and ignored in their concerns by Drs and others around them!!!
  • Iam4lifeIam4life Member New Member
    Be strong in will...  I believe you.
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