Very Very Weird Symptoms...Lupus?

(I originally posted this question in the undiagnosed forum)
For about the past month I have been having very strange symptoms on and off.  So far my life has been drastically altered.  Some days I have to miss work and stay in bed all day.  Other days I feel normal, like nothing ever happened.  I am only 21 years old, and have been generally in good health, although bad things run in my family like diabetes, cancer, hypertension, and high cholesterol.  So far I don't have any of these.  I would appreciate any ideas for what I may have.  
Here's my symptoms:

First, joint pain started in my left leg.  I thought it was from working out, so I took a break from exercise for a bit.  The pain would come and go, and some days were worse than others.  My leg felt numb and was 3 inches larger than my right.  My doctor checked me for a blood clot, and I didn't have one.  He said it was strictly in my joints.  I also had fever in my hip joint.

Then, the joint pain went away.  But something weird happened.  I started having blood seeping through my pores.  It started on my face, and then my legs.  I didn't feel bad, but I was a little freaked out.  It wasn't a lot of blood, but it was enough to bleed through my clothes.  I still bleed on and off on random parts of my body at random times.

Next, the joint pain came back.  This time it was all over my body.  I could barely walk.  I also had very, very bad fatigue.  So bad that after I unloaded my dishwasher one morning, I had to lay down.  My heart was pounding, my body felt weak, and I felt completely exhausted.  The next day I felt a little better, so I tried to take my dog for a walk.  I usually walk around the entire neighborhood, but this time, I barely made it down the street.  I felt worn out.  I came back and had to lay down.

After that, I started missing work.  I could only go in for about 2 hours.  I am a bank teller that doesn't have to get up and do much work.  I just sit in a chair, say hi to customers, and handle money.  For some reason this made me very tired, even though I was having slow days.  I was able to work for a little longer one day, and I felt great, but that evening was horrible.  I had cold sweats, chills, and didn't feel like myself.  I couldn't get out of bed.  My veins hurt.  It felt like someone poured Ben-Gay into my veins and you could easily see them through my skin on my chest, neck, and left arm (this was where the pain was).  I also started running a mild fever (99-100).  I told a doctor about it, and he put me on bed rest for one week along with dexamethasone and ibuprofen.  He thought I had vasculitis, although a dermatologist I'm also seeing said I don't look like I have it at all.  (BTW--I am no longer seeing the doctor that diagnosed me with vasculitis---long story).  Plus my blood work is completely normal, which is a good sign, according to my doctors.

The bed rest really helped me, because I was able to go back to work for a full 2 weeks.  Just recently I started feeling bad again.  I've also had several angiomas start popping up on me (almost one new one per day, some disappear, some stay).  I have missed 2 more days of work so far, having mild joint pain, but now I'm having new symptoms on top of the rest.  My skin is itchy is some spots, and it looks like I have a rash on my left cheek, lower back, and legs.  My lymph nodes hurt behind my knees, in my groin area, on the sides of my neck, under my armpits, and I'm very tender behind my elbows.  Sometimes I feel a little nauseated.  I feel very tired and weak again.  I could easily sleep all day and all night.  Resting is really helping me, but whatever I have is really starting to worry me.  I feel very strange at times---that's the only way to describe it.  Sometimes my chest area hurts--not bad, just feels strange, not normal.

So far, I have had 2 cbc's---they are both normal.  I have had 2 esr's--my first one was a 22.  My second one is a 24, which isn't too high, but my doctors are a little concerned since I'm having weird symptoms.  My liver is in good condition, and I don't have hepatitis, which was a concern b/c of the angiomas.  I have also had an ANA and rheumatoid arthritis test, but those results are still pending.  So far, the dermatologist I'm seeing doesn't have any ideas.  My new regular doctor  seems to think this may be something that isn't permanent and that I shouldn't be overly worried since my blood work is normal, except my esr.  As soon as the rest of the results come in, he is sending me to a rheumatologist and hematologist for further ideas.

I'm sorry this was so long, but I would appreciate any input on this.  Anyone have any ideas?  For more of a background, I haven't traveled anywhere, been bitten by anything like a tick, eaten anything strange, or taken any antibiotics.  I am on Yasmin, but that has never ever bothered me, and has actually helped me for the past 3 years.  I am worried about Lupus, but is it possible to have it and have completely normal blood work?  The reason I think Lupus is a possibility is because of the joint pain, fatigue, rash, plus I break out in a very bad rash in the summer when the sunlight hits any skin exposed.  I also have problems with my fingers and toes hurting after warming up from getting cold.  They swell, turn bright red, and hurt like heck.  It feels like all the blood rushes to them, and they swell enough that I can barely move them.  I've had problems with the rash and finger problems since I was a teenager.  The rash doesn't really bother me--it just looks weird.  I really hope this isn't something serious, but I'm still worried and stressed.  I'm asking for anyone's advice.  Thanks!


Here's some new symptoms I've been having lately:
I had another 'flare' a few days ago.  I had the fatigue and fever again, but this time I felt weird inside.  I cannot describe it really.  My chest hurt, but the pain wasn't bad.  I felt like I was breathing air through a straw, or that the air was thick.  My lymph nodes hurt in my neck, armpits, groin, and behind my knees.  I had a rash break out on my cheeks, nose, lower back, and legs.  The rash was in blotches and it had reddish purple with bumps under it.  Now I feel fine...like nothing ever happened.  But when I do get sick again, I get worried.  It's like my body is trying to tell me something is wrong, but I can't tell exactly what's going on.  Apparently the doctors are baffled as well.  Does this sound like Lupus or any other disease?

[emtd65]

Hi,

   Well I do have Lupus (SLA). You do have some signs and symtpoms which may indicate Lupus. There is no definitive blood test or any other test to diagnose Lupus. There are people who have positive ANA tests who are sign and symtpom free and vise-versa. Seeing a rheumotologist, neurologist and you should see a pulmonologist as well, since you say you have had a hard time breathing. There are many auto immune diseases and they can be difficult ot distinguesh one from another. It may help to keep a journel of your days and what occurs, what meds and treatments etc. and have it with you when you see a doctor. Also request copies of all your lab work and tests for your own records. Be peresisitant and never be afraid to change doctors. It took me a few years to get a diagnoses. For years I was told it was in my head etc. Once it has a name you will actually feel better !  Do your own research on auto immune conditions, it helps to be one step ahead and be able to talk to your doctors with some knowledge etc. If I can be of more help please fell free to messege me.

[LV86]

Well, one of my ANA's has come back.  It's positive; speckled pattern; and 1:40 High.  What does this mean?  The doctor who performed this test does not return my calls.  His nurse calls me, but she cannot tell me what my lab results mean, so I wasn't getting anywhere with them.  I've already found another dr, and he did the ANA again, since my original dr lost the results.  Now I have the first test, so the results are from February.  I have a negative rheumatiod factor, also.  ESR is 24.  Doctors are starting to think this is Lupus, but they want to check out other things first before diagnosing me.  Is this bad?  Other bloodwork is normal so far.  

[ireneo]

My two cents worth - your problem with your toes turning red and hurting when they warm up sounds just like Raynauds. I have primary Raynauds (just by itself). Many people have secondary Raynauds - they have it in conjunction with Lupus or Scleroderma or some other similar problem. I do visit a wonderful Raynauds message board but obviously can't post the link here. It's just another idea and thing to think about. Do keep your hands and feet warm as much as possible because Raynauds can cause rashes and tissue damage if not monitored.

[Gracie60]

See a rheumatologist if you haven't already.  They will be able to sort out all of those symptoms.  I am polyautoimmune and lupus is one of my diseases.  The fingers and toes sounds like Raynauds, for sure!  Lupus is a disease with 1000 faces.  If it attacks your internal organs, kidney, lungs, heart ect. it can be very dangerous.  There are some really good medications out there to help if it is indeed lupus.  Unfortunately, many other diseases will be very similar to others with different components .  It really takes a specialist to rule in and rule out possibilities.  They should do additional tests like  anti double stranded DNA (anti-dsdna) along with a long list of others.

Make an appt with a rheumatologist, make a list of problems, no problems are too small to add.  Some small symptoms can be very helpful, like sores in your mouth, losing extra hair on your head, butterfly rash on face, intermittent traveling joint pain, fevers and such.  Raynauds is a common problem for those with lupus.  It is secondary Raynauds, not primary when it is diagnosed with other autoimmune diseases.  If that is the case, it needs to be watched carefully and possibly medicated with certain heart medications that get the circulation moving.  I take Tiazac, generic form of a heart med.

Good luck to you!

[LV86]

I finally was able to see a rheumatologist last week.  He went over all of my bloodwork with me and asked me some very detailed questions.  I had a second ANA which came back negative.  My first one was a very low positive.  The rest of my bloodwork was normal.  The rheumatologist told me that he feels as though the odds are on my side.  My primary doctor told me that it's very possible that I had some type of transient virus that would come and go and eventually go away and do no harm to my body.  The rheumatologist agrees with him; however only time will tell the tale, so I go back again in three months.  He feels that I do not have Lupus for now, but it's possible this could be mixed connective tissue disease.  He said I have to follow a well-balanced diet, practice daily exercises, and eventually do a daily conditioning program.  But he is still leaning on the large possiblitly that this is a virus.  I have not had any flares for three weeks, and I feel completely normal.  I hope he is right.  As far as my sun rash and possible Raynaud's goes, he feels that no treatment is necessary since no damage is done, plus my lab work shows that I most likely do not have an autoimmune disease.  I just have to keep an eye on any symptoms for now, and try to take really good care of my body and wait.  He said time is the most difficult part.  

[krzeaz]

Hi, LV86,

Read your notes above; I am newly diagnosed with both Lyme disease and lupus.  I am new at this, but as I understand it, Lyme disease can also have the migrating pains and joint pain.  It can be hard to diagnose but something called a Western blot (blood test) can diagnose it.  Rashes and major fatigue are also part of Lyme disease.  Lyme is treated with antibiotics.  

Good luck to you in solving your health issues.

[krzeaz]

Was reading in the book, "Everything You Need to Know about Lyme Disease" by Karen Vanderhoof-Forschner.  She talks about symptoms of Ehrlichiosis and mentions that the rash might include many small and discolored spots or patches that might be purple or red and resemble bleeding under the skin.

Ehrlichiosis can be spread by tick bite.