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So Many Symptoms no answers really

Posted , 3 users are following.

Hyphirio
Hyphirio

About two years ago my body began to change a bit, and I started to notice that i was developing a rash. I am a very healthy , thirty six year old female, and I have strived to take care of myself. I'm a tiny female, weigh about 98 pounds. So, for me this was strange, and I figured it was something I was eating.

I began to change my diet, and the I noticed I kept getting sick. Over a few months things got worse, and after a year I began to write down the trends I was starting to realize. After two years of dealing with this I keep being told by the same clinic that I need to be tested for Lupus, due to how it has progessed. At this point I cannot get in the sun for any long amounts of time without becoming really sick. 

I will be so fatigued that I get sick from that. I literally cannot move, and my joints ache to the point where it's painful. I take things for anxiety which has sky rocketed, and i get heaches really bad. If I get a sun burn it is even worse, and I end up with a high fever. WIth almost flu- like symptoms the longer I'm out in the sun. Any lab tests come back with different abornmalities but nothing they get concerned about. However, over the two years it's come up with different things each time. 

I go to a dermatologist and he tells me I got roseaca like symptoms but it is not all over my face. The rash that never goes away is on my cheeks, but with the cream he gave me it does get better. It just never heals, and when I get in the sun for any time I'll have the thick red bumps again that thicken the more I am exposed.

I am so tired of battling this, and the last medication that I was given , minocyline made me severly sick. My throat had sores in it, as well as my mouth. I had never really got mouth sores much, but I could feel the bubble like sores all in my mouth. So I went back, and he tells me to keep taking the medication. I threw it away, quit taking it, and never went back. I got better in about a week, but my throat always swells when I flare anyway. 

I was hoping maybe someone may have another idea as to what I could do. I wear hats outside in the sun, to help limit exposure, but it doesn't make everything go away entirely. 

0 likes, 4 replies

4 Replies

  • JenInCali
    JenInCali Hyphirio

    Posted

    Hi, it really sounds like lupus. Have you seen a rheumatologist?
    • Hyphirio
      Hyphirio JenInCali

      Posted

      Yes, he only did the same tests that the clinic did, but it had different ANA numbers they were a little lower. They didn't want to wait on the clinic to send the lab reports to them. So he just told me it wasn't anything to worry about. Paid him, and went on my way. I think they just want it to show up in lab, which I understand I guess, but the only things that seem to show now are the elevanted ANA counts, and white blood cells and I think something else they said is normal in some women. HOwever it doesn't show on all of the tests so I dunno. I just do not want to keep feeling like I randomly got hit by a hug bus. One time I exhausted myself to the point where I felt drunk at work, and had to have my husband pick me up to take me to the clinic. They gave me Vallium for anxiety. 

  • Stychsen
    Stychsen Hyphirio

    Posted

    You need to do an Ana and a double stranded Dna test. As for the sun I put sun screen on my whole body every day and I bought a swimsuit that covers my whole body.and huge sun hats. I really avoid the sun as much as I can .
    • Hyphirio
      Hyphirio Stychsen

      Posted

      Thank you for your advice. It means a lot to put things in mind, and to know I've at least done somethings right.  I have done an ANA, and a Double stranded DNA test at least five times in two years. The DNA part is not showing anything abnormal , but the ANA has for over a year now. It is always very, very high, but they tell me it's normal for women to have that.  I want to say something else was abnormal, but I do not remember what it was since I never got the report from the rheumatologist. The tests are expensive , and so I do not do them too often.  The white blood cell count is off, because I get bladder infections really easy no matter how much water, cranberry (all natural) or cherry juice I drink. I always wear sunscreen, because I burn easy as it is. It doesn't matter if I wear it though I'll still break out  on my cheeks, but the hats help a whole lot. I am able to walk around with my son that way. I do try to avoid the sun as much as I can , but it is very difficult. Being a mother, and typically an active person outdoors. I am wondering also if I shouldn't get a second opinion, and ask another rheumatologist. Thank you all again. <3 

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