Nothing wrong with me !! Bloodwork is normal. So my bruising is just bruising. I’m tired because I have kids I’m losing my hair and have sores because of stress . my butterfly rash is just a part of my face even though severity changes with heat stress pain and sun 
my swelling joints and pain is all because in depressed…
Now this is my drs explanation. And now I’m looked at as crazy which is exactly what I feared. I don’t have good insurance and now I’m lost I don’t know where to go from here
Was your Dr. a Rheumatologist or an internist? I am so sorry as you have all the symptoms of lupus and you really need the right medication. You must be so frustrated. Is there a teaching hospital near you or anything else you can do?
I just don't know what to say to make you feel better. Maybe someone will come up with an idea for you.
Hi Chastity, I understand your frustration, it is difficult when the doctors don't seem to listen. Was this the Hematologist you saw? Have you seen a Rheumy? I am sending you hugs.
This was my general physician he changed his mind about giving me a referral so now I am stuck! I don’t know who to see or call and try to see any suggestions?
If you can, change your general physician. If you can't, see about pressing your gp to give you a rheumy referral anyway. Point out that it's just a means to a second opinion without leaving his care. Or simply demand seeing a specialist because this really isn't in his sphere of ability to diagnose. Regardless, you NEED to see someone else. It is ridiculous to explain away your symptoms by saying you are stressed, depressed, and that you just are that way. That doesn't cut it. You have to be your own best advocate and fight for the attentiveness and care you deserve.
I know it isn't comfortable to do so. I was able to bypass my regular doc, and did so in order to not have to confront him. Still, I would have if that had been my only other option. YOU know when things are not okay, and having some quack tell you it's all in your head is nonsense. Joints do not swell and hurt because of how you feel emotionally, nor is a facial rash anything close to 'normal'. Hang in there, and know you are not fighting alone! I think most of us ran into this sort of wall in our Lupus journey. Keep at it and don't give up!
So sorry you are dealling with in my teenage sons language “assclowns deadass” been through it. Almost killed me the so called professionals. Did you try calling your insurance and speaking to a rep? they can help you bipass all the red tape. That helped me. I was having very similar issues. Good luck. And ur not crazy
Thank you guys I’ve not tried calling my insurance as I have tncare ( medicaid) so I don’t use it unless I have to but I will because I need to get to the bottom of this. I’m going call around and see if any of the rheumy drs or internist will see me without a referral. It hurts to bathe my kids that breaks my heart.
Oh girl, sounds like what I was just going through. Listen, your symptoms should not be ignored. Did you have a biopsy of the rash?
Hi
I have rash similar with yours(I can see it on your photo), for around 11 years.
Over years I developed joints pain starting during my first pregnancy.I bleed heavily during first months of pregnancy and non pregnant I have periods every two weeks.For the last year and a half I have a lower back pain .Since the birth of my youngest 4 years ago I feel constantly exhausted and so wick as I started to believe I was going to die.I think only people with cancer could feel so tired.
GP found blood in my urine ,after repeated test she send me to urologist .After inserting a camera in my bladder he diagnosed me with Interstitial Cystitis or chronic bladder inflammation .
Started to feel more tired.My GP told me I am getting older (I am 40) this why I feel like a 80 year old?!
I requested a letter to a rheumatologist ,told her I am convinced I have lupus.
She told me I don’t have it and send me home after paying €240 .
After few months went to see a new rheumy .She repeated all blood test my GP done already checking for lupus.Paid her €265 ,went back after few weeks ,paid again €200 only to tell me my bloods are perfect and I have Fibro. I forget to mention ,yes,about my muscular pain all over my body,all my body hurts a lot constantly.
She told me she is convinced I don’t have lupus.
Went back to GP ,he told me is all in my head and he would love to treat me for depression .Well,I told him that after all and living with that pain I might be depressed ??
I requested a letter to a dermatologist for a skin biopsy which I never used as I was looking on Google for lupus specialists in London (I live in Dublin,Ireland) and I have found a clinic specialised in lupus.It is called Lupus Clinic at London Bridge Hosspital.
What to say?Good answered my prayers and send me there.
I told him all about it like I described above to you,after he examined me,he decided to treat me for lupus.He did some extra blood tests,I don’t know the results yet as I will go to my second visit in few weeks.
He told me many of the patients they treat,have symptoms and bloods are normal.They have a lot of experience,I heard they would be the best in the world,he gave me an injection immediately of steroids and a prescription of plaquenil to suppress the immune system.He thinks ad I feared lupus was responsible for damaging my bladder.Only if they would listen to me all this years!!
Even if you live in the States it will be well worth to go there.
It takes few months for treatment to kick in but I already feel I have more energy after 6 weeks on.
God bless you and please let me know how are you and don’t give up.
You need to get treatment,lupus can be very dangerous if not treated.
Kind regards
Dalia
You need to see a rheumatologist. Don’t walk in and tell the doctor what you have. They don’t like it. You may have Fibro and lupus, and they actually treat fibro with lyrica. They gave it to my friend when she was hurting all over, and she says it changed her life.
But fibro doesn’t get that malar rash. It took me 8 years to be diagnosed, when I found a better more open rheumatologist who counted a low positive ANA, low platelets (your bruising, maybe) but a diff rheumy didn’t find these symtoms. Once i was properly medicated, I was in much better shape. Ask for your blood tests and see about platelets, whit and red blood cells. But get the doc who said you have fibro to treat the fibro, too. .
Any updates, chasity?
I know it’s naive of me, but I can’t believe the number of women who struggle with Lupus, while doctors remain unsympathetic and refuse treatment. I began having Lupus symptoms in 2004. It took me until 2014 to be diagnosed. Doctors often don’t seem to recognize Lupus for what it is…
Hello all I’m new here, my test results have me a little scattered and confused, my ana was negative but my dna was positive for SLE, Dr also diagnosed with fibromyalgia but have known that for a while my neurologist diagnosed me with it back in November, I get blotches on my arm’s my face us flushed but no butterfly rash, I have all systems of lupus. Just wondering if the dna could of given a false positive since ana test was negative. Has this happened to anyone else?
I always test false negative! So it is possible.i was eventually diagnosed by skin biopsy. I went through 4 rhymes before I found one who didn’t think I was nuts.
Hopefully you will find a good one too
Wishing you the best
Sandy
Hey guys! Its been a while! Sorry I got very discouraged after my" normal" diagnosis. I shut myself in for a while And won’t discuss it with anyone . things have slowly got a little better but I do still struggle. Hoping and praying
Chastity please run away from that doctor as fast as you can. You are not CRAZY. He is just inexperienced and doesn't understand the disease! I went through the very same torture with expert physicians during the first two months of my hospitalization in 2011/2012. They even convinced my hubby that there was nothing wrong with me and that I was bipolar.
It makes me mad just thinking about it. The stress and the trauma these doctors leave in their wake is immeasurable. Even today it makes me so angry. When you are ill you have not taken leave of your senses. If this doctor doesn't want to listen and look deeper than the blood work then find one who does. Your health is your wealth. Don't let anyone rob you off it.
I hope someone here can refer you to a rheumi in your vicinity. Wishing you strength!