[mssarah79]

Hello everyone! My name is Sarah, I'm 29 and I have not yet been diagnosed with Lupus but have been suffering for 3 yrs and gone to numerous doctors and am sick and tired :sad: I just recently got a slight rash, well it just looks like a light sun burn on my face. It is noticeable because I'm so fair-skinned and normally without makeup I look very pale.

After doing research online, I saw that butterfly rash and that is exactly where it's at, just nowhere near as dark as those pictures and it's flat, not raised. Over the last few years, I've had frequent UTI's, kidney stones, bowel problems, migraines, recently my tailbone/lower back has been hurting constantly, and have thrown up and had diarrhea for no reasons at all. Has anybody had symptoms similar to these?

Oh also a few months ago, I was almost passing out b/c I was so dizzy and it ended up my blood pressure was very low. It also seems I can't take very much sun and I feel feverish after being out even for a little while. The fatigue has been unbearable; I am a healthy person who always eats 3 balanced meals a day, exercises, and generally gets enough sleep,I don't smoke or drink alcohol but it will always feel like no matter how much I sleep it's not enough. About 6 mths ago I was having symptoms of depression and anxiety and got put on Prozac, it did seem to help me a lot but I know that there is still something not right.

All these symptoms started right after I had my daughter 3 yrs ago and from what I've read, it happens a lot after pregnancy. I didn't want to trust just what I read but actually hear from people that are living with this everyday..I would appreciate any of your advice

Sarah:sigh:

 

[alisiajo]

Your right, most dx's happen during puberty, after giving birth or during menopause. I get a lot of migraines. unfortunetly i've never had low blood pressure. Mine is usually pretty high but i also have kideny involvement. I was dx's by having the butterfly rash, i dont really remember it but i dont remember it being that bad. They took some blood and knew just by looking at it that i had lupus. I also had a lot of joint pain in the begining too. It can depend on symptoms i guess depending on what kind of lupus you have. I have sle nephritus. or lupus nephritus i'm not sure how i'm supposed to put it. I hope they figure something out for you so you can get to feeling better and enjoying that little girl

 

[Lillylou]

Hi Sarah, I have been having similar problems to you including the butterfly rash[not raised], rashes on my arms, constant lower back pain, exhaustion, dizziness,speech problems, migraines, urine infections, overactive bladder, joint pain and severe weight loss. I have felt ill for a couple of years but my symptoms became worst whilst on holiday abroad a few months ago. I saw an urologist last week and tomorrow I am going into hospital to have water put into my bladder to try and ascertain what the problem is. The urologist has also arranged a CT scan for me in a couple of weeks. Like you, I am looking for support and advice because my symptoms have really started to worry me and at times I have felt like I am cracking up.I came upon this forum whilst researching my symptoms and when I saw the criteria for lupus I immediately thought thats me. I can't help but think though that an urologist might not be the type of consultant that I should be seeing.
Is there anyone else who suffers from problems with the bladder? Thanks in advance.

 

[alisiajo]

I havent had any bladder problems. I had one UTI but actually didnt realize it until they had told me after doing a regular UA. I havent had any back pain but with lupus you get arthritus and i can imagine that any bone in your body could hurt? I have been more recently having speech problems, i had neuro problems with my lupus though. I think everyone should get checked for that because it can be serious. I had seizure and 2 mini strokes. I have had lupus for 6 years and i am still learning of all the different symptoms and side affects so i think anything is worthe asking your doctor about

 

[LolaLola]

Hello Sarah,
Not everyone has a rash and in fact some people that do have it just end up looking slightly pink and in fact very healthy. (So annoying if you feel dreadful)
Have you had any blood tests or is your Doc. just saying you are tired because you are a Mum. Unfortunately, they often do say this.
Does the sun make all your symptoms worse-that could be very significant?
Anyway Welcome here.
x Lola

 

[Maia]

I think for both of our first time posters on this thread (Sarah and Lillylou)
it's probably worth a request to see a rheumatologist or at least ask your GP if they think an autoimmune disorder could be in play and if an ANA test should be done. An ANA test is sort of a screening test for autoimmune disease. It is positive in those with lupus 95-99% of the time - usually at high levels. But about 95% of those who test positive to ANA will NOT have lupus, but just "low-normal" levels or some other disorder of autoimmune origin. {Please not that doctors are usually put off if you come in appearing to half self diagnosed such as coming in and saying you think you may have or have lupus - hence it's better to be vague}

My malar rash was never raised, initially was misdiagnosed as rosacea as I had no other complaints at the time. It didn't respond to treatment and when my other symptoms developed later it was quickly realized it was the lupus malar rash and not rosacea.

Back pain, if it's in the lower back, can be sacroiliitis. This can happen with lupus or for other reasons. I have had that before myself. Lupus does tend to spare the back though, particularly the center portion of the back above the tailbone to the neck. Pain there is usually unrelated to lupus.

I am amazed how many people come here with a history of kidney stones and kidney infection. I had this about 9 months before my diagnosis of lupus too. I am not sure if this is related or not; there is no evidence that I'm aware of that people with lupus have higher rates of kidney stones. But I increasingly notice how many people here have said they have also suffered from these things.

For the urology question, there are other people with lupus who have similar problems on our site. Many end up with a diagnosis of interstitial cystitis which has an unknown cause but some hypothesize it may be another sort of autoimmune disorder.

Good luck to both of you and come back with any other questions you may have. An autoimmune specialist in rheumatology is probably your best bet; especially if your GP's cannot help you any more after so much time has passed.

 

[forever hopeful]

yeah i have the same rash, but my does raise when i'm stressed, overworked, or out in the sun too long. i have many of the same symptoms as you do and i have a family history of lupus and other autoimmune disorders. i'm still having trouble getting a dx and you probably will too if you're like the rest of us. unless your one of the lucky (unlucky) ones to get a quick dx, be prepared to hear well it's not lupus, it's this, or its not a mylar rash, is this (and each doctor that you see says a different thing). it can be a long difficult journey that can last several years. just keep a journal of your symptoms if you can and stay on the doctors about it! good luck and i hope you feel better.

 

[KarolH]

My rash is not raised and not dark at all. For me, it is a slight reddish color, more pink actually and flat to my skin yet if I take my fingers and run them over my face it feels as though the skin in that area is dry and thick....make sense?

Everyone can get the malar rash differently. If it acts up to bad, take a picture of it so you can show it to the doctor.

 

[mssarah79]

Thanks for the responses everyone! As we speak, I am feeling bad because I feel an other UTI coming on and I just stopped taking Bactrim 4 days ago Another thing I thought was strange is that I read that people with Lupus usually have bad reactions to Sulfa drugs and this happened after taking the Bactrim..suspicious.

Well, i was lucky enough to get in with my GP yesterday and she said it looks like Rosacea..I didn't have to say anything about Lupus luckily because she was showing me pics in her book, and actually said it didn't like like Lupus but also mentioned they can always look different. Since I am a nursing student, I told her I'm always researching online, and also heard of Rosacea...but mine doesn't look like that either! So she gave me some kind of face gel and said if it's not better or gets any worse in a week to go back. My face still looks just as red.

Oh about the blood tests, my blood count has been pretty normal. The lipase and liver enzymes were elevated a few times but they never figured out why; everything else was normal. I always feel fatigued though, and the dr didn't say anything about it due to being a mom..but it's extreme fatigue sometimes. I will keep everyone posted. Again, thanks for the advice