Possible Lupus Symptoms?

Hi all, I'm posting on behalf of my girlfriend, who's 33.

She woke up about 4 days ago with a sore neck and sore knee which we thought could be attributed to some activity the previous day and possibly the way she slept.  Then throughout the day more and more joints started hurting.  By the next day she said that pretty much all of her joints hurt, and pretty severely.  She has a pretty high pain threshold, so I know she's not making this up.

Initially her neck was so sore that she couldn't even move it, and her knees were so sore that she could only walk with assistance.  By today her neck and knees are much better, but her hands/fingers and wrists are very sore, and she noticed swelling in one hand.

Because of how quickly this came on I thought it might be the result of a viral or bacterial infection.  Oddly, she hasn't had any flu-like symptoms (head cold, fever) and hasn't been overly run-down or tired.  She's had no rashes, which I understand to be commonly associated with lupus.  

I just went through a 16 question lupus screening quiz and answered 25%.  She's very light-sensitive (I often joke that she's a vampire because of how senstive to light she is).  She had pericarditis when she was very young.  Then she has all of these arthritis-like symptoms.  Again, with no major fatigue or symptoms typically associated with the flu or other common communicable infections.

This is the first time anything like this has happend to her.

Family history: her mother has fibromyalgia.

I've done a ton of research on diseases/conditions including:
fibromyalgia
lyme disease
rheumatoid arthritis
infectious arthritis
rheumatic fever
and many more that aren't coming to mind right at the second

I haven't run into any diseases/conditions where the symptoms match hers, especially where she doesn't have any flu-like symptoms, and isn't fatigured or run down.

So, any advice you may have would be appreciated.  She's making an appointment to see a doctor ASAP, but I think it's important for a person to educate themselves as much possible, especially where you have this vast resource of information at your fingertips.

Thanks in advance!    

[renschwa]

Dear Someguy38-

I agree the first step should be to see a good doctor. She will likely need to see rhumatologist and maybe other specialists to determine what's going on.Your girlfriend's symptoms are associated with many diseases but hopefully a good doctor will take her lifestyle, family hx, medical hx etc into account and it will help lead them in the right direction for testing/diagnosis. Be sure to tell your doctor of any recent things in her life- stress, travel, activities ,diet changes- anything  etc b/c I found that docs do not always know to ask!

Keeping a log of symptoms may also be helpful for when she starts seeing doctors. I did that and most doctors really appreciated it.

I can speak mainly to Lyme disease, Lupus and MS as I just experienced a limbo period b/w all of these diseases for the past 4 months. This is what I've learned that might be helpful for you:

Not everyone gets the rash with lupus or lyme. So the lack of a rash does not necessarily mean the absence of the disease. There are people on here more knowledgeable about lupus than I am though... Lyme and lupus are diseases with various symptoms and they manifest in different ways for each person, it seems no one case is the same. From what I've learned Lupus is not a diagnosis that rhumies hand out freely, they usually want a lot of evidence for the disease before they give the Dx. It can take time but others can probably comment better on that. Karajo knows her stuff and will likely post the diagnostic criteria for lupus.

I do know that light sensitivity occurs with both lyme and lupus.

If you want to learn more about lyme come on over to the lyme board... But just a note about the disease (Lyme is my current diagnosis actually) many people do not see a rash nor have flu like symptoms with it, so lacking those symptoms does not mean it can not be Lyme. I skipped right over the flu and went for neuro/muscular type symptoms with a sudden onset like your girlfriend's, quite literally over night and they got worse/piled up over weeks-months. I too had little fatigue (until recently when they inc'd my antibiotics). I have doubted my Dx b/c the lack of flu symptoms until a neurologist told me about the many patients he has seen that also had no flu symtpoms. I'm not saying you girlfriend has lyme, I'm not a doc for sure, but it may be worth looking into if nothing else pops up... For Lyme she should be tested with a Western blot. The basic Elisa or Lyme titre tests most docs use is useless. Many turn up neg- when you actually have lyme. Not sure where you live or if your girlfriend has had exposure to tick areas through her activities but just wanted to let you know all this up front as Lyme is often overlooked by many docs.... If by chance she has ever been bitten before, symptoms can be latent and then pop up later in life usually in response to stress/trauma- surgery, death in family- anything that stresses the body. I know someone who was bit at age 17 and did not have symptoms until she gave birth at age 24. My understanding though is that auto-immune diseases and most illnesses can be brought on by stressful events such has these.

For assessent of lupus and other auto-immune diseases it is best to see a rhumatologist who will also do an exam and order blood work. I found my docotor on RateMD and he was fantastic as all the reviews said. Findign a good doctor makes all the difference.

Good luck and keep me posted! My heart goes out to your girlfriend... Many of us here are in her shoes... and what are great guy you are to be on here researching and looking for info for her!

[someguy38]

Thanks for the great reply!  I spent a little more time researching Lyme Disease, particularly in Idaho, where we live.  According to ALDF there's no risk for Lyme Disease in Idaho, or any other place she's been in the last 3 years.  I know that doesn't disqualify it as a possibility, and I will keep an open mind on this... but I'm leaning away from Lyme Disease.

As for light sensitivity, well, she's always had that.  She's very fair-skinned and has very light blue eyes, which can be a factor in light sensitivity.  She sees pretty well in the dark, too, so chances are that 2000 years ago she would have been in North Europe, on a foggy island somewhere.

Tonight her glands are swollen and she says that her jaw is pretty sore, which is new.  Meanwhile her neck is much better, her knees are way better, and her hands are starting to feel better too.  So the pain seems to be somewhat migratory; lasts a few days, and then subsides in the area it started in.  It hasn't progressed it in a bottom-to-top or top-to-bottom order.  With the very little medical knowledge I have I can't really make any rhyme or reason as to the spread.  

Once again I'm not pretending to be a doctor, but I would think it might take an infection differing amounts of time to invade different parts of the body, depending on how it was spreading.  I'm really going out on a limb here, but her neck was the first joint to experience this, and it's also close to a very large artery.  Her knee would be close to a large artery as well.  Her hands are close to a medium-sized artery.  And maybe the jaw joints are just far enough from any major artery that they'd be the last thing to become infected?  Just a wild guess from someone whose medical knowledge comes primarily from the internet.  

There's something strange about the way this all came on at once, with no prior related incidents.  In order for all of her joints to be affected at (close to) the same time, a body-wide change would have to take place rather suddenly.  An infection seems like a probable cause, where infections would spread quickly via bloodstream and have a tendency to affect the joints (even the common flu affects the joints).  It could be other things, like the introduction of substances, or deficiency of substances.  With my once again very limited knowledge, I don't know what else it could physically be besides an infection or introduction/deficiency/excess of substances.  If it was autoimmune it might be that something triggered an autoimmune response very suddenly.

Could it be anything but:
1.  Infection
2.  Substance (introduction, deficiency, excess)
3.  Autoimmune
?

Thanks again for putting so much thought and effort into your reply!            

[renschwa]

Yeah I think Idaho would be low on the list for Lyme however it has been documented in almost all states though, you never know I guess. And my pains too were migratory, started in my legs and moved on up.

It does seem sytsemic, whatever is going on, but yeah I'm not a doc either... My hunch is that a rhumatologist would be a good place to start. I would say get her to a good rhumatologist as soon as you can before you both go nuts trying to figure it out... The not knowing is the hardest part.

And keep track of her symptoms daily as I said. It's so easy to forget to mention things when you get to see the docs, as it can be overwhelming, and you just have so much to discuss, so put it all down on paper and give it to the doc so nothing is forgotten. Because sometimes the one thing you forget could be the biggest clue for the doc! And get copies of all labs and tests in case you need to see other specialists or in case you decide to get other opinions.

[someguy38]

Thanks again for the reply.  I've done a lot more research today and have come up what I think is a far better match:  Parvo B19.  In adults it's well-known to cause temporary arthritis, typically without flu-like symptoms, and usually way more in women than in men.

This has been going around the schools in our area.  About two weeks ago one of the neighbor kids was over, and later ended up developing Parvo B19 (Fifth's disease).  He would have been contagious about the time he was over.  If it wasn't him, there are a number of other places she might have come into contact with infected children.

The numbers work out perfectly.  Of course we can't be certain, but then again, could a doctor?

My girlfriend isn't in a huge hurry to go see a doctor, especially after losing her health insurance about a month ago.  Her last trip to the doctor's office didn't go well.  She had insurance then, but the doctor ordered a number of tests throughout a week's time, and finally ended up prescribing an antibiotic that immediately alleviated the symptoms and cured her.  She was pretty well incapacitated the whole time, and a subscription for antiobiotics was all it would have taken.

I did a lot of online research during that time, and for the life of me couldn't figure out why the doctor was ordering all these tests, when the symptoms seemed to indicate a bacterial infection.  Back then I would have told you, "He's a doctor, and I'm sure he know's what he's doing.", and would have added again that I'm not a doctor.

It seems to me that doctor's these days are way too quick to start ordering expensive tests as what seems like part of a mandatory procedure.  I tend to think it's part of a CYA thing, where these tests may be necessary to prevent malpractice lawsuits.  My girlfriend noted that in a lot of cases doctors get kickbacks for tests and drugs they prescribe.  There are definite ethical issues when a doctor stands to make more money by allowing you to stay sick longer, and in a lot of cases they do.

Anyway, thanks again for your replies.  My girlfriends seems to be improving now, and I hope things go well for you too.

        

[karajo]

Hi and welcome to MedHelp Lupus forum.

Exactly which test did the dr run and was any of them off?

Many times, people in the northern states are low in vit d. Which can have simlar symtpoms.  

[PiperW]

Swollen glands also makes me think of mono and when you say meningitis people think of the infection that kills you in 24 hrs. But there are 2 types of miningitis (bacterial and viral) and one is way more benign than the other but would explain the stiff neck, joint pain, and sudden onset.

It's my expereince that Lupus isn't usually that sudden. You don't just wake up one morning with all these symptoms. They gradually appear and gradually affect more and more things.

You're a caring boyfriend to do all the research for her! She's a lucky lady.

[someguy38]

Thanks again for all the replies.  The test the doctor ran were for a completely different illness.  There was a CAT scan and a few lab tests, though I can't remember what the lab tests were for exactly.  It ended up being a bacterial infection that was easily treated by antibiotics.

After doing more research on Parvo B19 I really believe that's what she has.  The fact that it came on this quickly made me think it had to be an infection of some sort.  I did some research on Meningitis early on and pretty much ruled it out because of the lack of other symptoms.  She hasn't been overly run-down, aside from being very over-tried as a result of not being able to sleep, which would also tend to rule out mono.

She drinks a lot of milk and takes fish oil supplements, which makes me doubt it's a vitamin D deficiency.  I also don't think a vitamin D deficiency would hit this quickly.

Once again I'm not a doctor and am not in a position to be making diagnoses.  But I think it would be foolish for any person to rely solely on doctors, and not be their own dctor to a reasonable extent with the resources that are available today.  And I'm not saying that a really good doctor wouldn't help, but she and I both are a little wary of the doctors we've dealt with.  She's improving, which once again suggests this is a virus, which a doctor wouldn't be able to do anything about.

Thanks to everyone who's taken the time to write and offer suggestions and support.  This is a great community!