I just found this board and hope to get some advice/input.
In January 06 out of the blue I developed very severe knee pain which in a matter of days jumped from one knee to the other. A few days later a rash began to appear which was on my arms and legs, hands and feet. When on my hands and feet, it made them feel blistered (there were however NO blisters, ever) and was really painful, everywhere else, the rash did not bother me.
Being w/out health insurance at the time, I decided to try and let whatever it was run its course but inevitably ended up at numerous doctor offices trying to figure out what was going on. I consider myself to be pretty tough and not a big complainer about things being wrong w/ me however during this time I was regularly in tears over the extremely severe pain that was jumping from joint to joint. I finally ended up at a Rhumetologist however I really don't think she really cared what I had or not. I had more blood tests than I think I've ever had in my life and the only thing that ever stood out was a very high SED rate. The test she did for Lupus and many, many other things all came back negative. In the end I think she decided I had some form of a viral arthritis. She did however put me on Plaquneil and Diclofenac which both worked great. Eventually I quit going to see her because she never had any new ideas and the medication was working...I quit taking the medications and have been almost 100% for nearly 1 1/2 years now.
Skip forward to a few weeks ago and whatever it is has 'graced' my life once again. The joint pain is again literally jumping from one joint to another or one side of a joint to another, it is very weird and I think everyone thinks I have lost my mind. One part of my knee may hurt in the morning and by evening a different part of the same knee will hurt on top of the other knee. The next day, they may both be fine. A few days ago my daughter had to help me walk from the car to the house because both knees were in very severe pain and felt very swollen at that. My ankles have hurt, my wrists, the bridge of my nose, my eye sockets are regularly sore and the new thing is I have pain on both sides of my abdomen which makes me worry about kidney issues. During all of this, I have a rash on my arms and legs daily which seems to spread to my feet and hands every night. Other than what I think is joint pain and being very much lacking energy every day, I get along fine until evening although no one understands how I feel that i need a very long nap in the middle of the day every day and can not function w/ out it. Typically during evening hours I start w/ chills and just a general lack of feeling poorly. I go to bed, sweat like crazy and then sometimes feel much better.
I rarely get the rash on my face that i hear is a tell tale sign of Lupus however I do get very tender spots around my eyes regularly. I have new insurance starting on the 1st, in just a few days and am going to a different doctor than my previous one.
Do any of my signs sound remotely like what anyone else has had? I am trying not to leave anything out but I am sure I have. A few more things...my fingers always feel stiff and I feel like an 80 year old grandmother every time I get up from a seated position.
I'm sure I'll think of more to add bu that is about it for now.
Hi, tbm, and welcome to the group. I want to share a few things I learned the hard way. (Is there any other?! )
KINDS of LUPUS: Many drs. & much of the info you read on your own shed light only on the *classic* kind = SLE. (More on that in a sec.) Further, many drs. misunderstand the SLE "4 of 11" criteria (for those, see the "sticky post" at the top of the Board).
In *addition* to SLE, in which a facial rash is a possibility but not an absolute "requirement", there's the SCLE subset = subacute cutaneous LE, first defined only in the late 1970's. In it, two rashes are possible. One is annular (targetlike), and the other is papulosquamous (looks like psoriasis but isn't). These rashes may appear anywhere on the body; and they tend NOT to scar or depigment or itch. The degree of disease is most often "mild systemic": it's thought that kidney & CNS involvement occurs less often in SCLE than in classic SLE. In SCLE, autoantibodies are most often (but not always) anti-Ro & anti-La. ANA is positive much of the time, but can be negative in perhaps as much as 1/3 of patients.
Then there's DLE = discoid lupus. Here the rashes do scar & depigment, and can cause permanent hair loss. Overall disease is less severe than in SLE & SCLE. However, people with "discoid" lesions can "graduate" to greater disease---i.e., SCLE or SLE---so the degree of disease doesn't depend just on the rash. In DLE, ANA is positive only perhaps 50% of the time.
I'm just a patient (obviously), but I really hit nasty roadblocks all along the way. I had problems from early childhood, including several acute episodes (pneumonia, encephalitis, etc.) Blistery rashes. Severe joint & shin pain, elevated sed rate, depressed WBC, fevers, etc. Bizarro periods. Horrible irritable bowel for decades. Urinary problems, including stones. Migraines. Weight & hair loss. Fatigue. Low-grade fever. Sciatica. Anemia. Then---finally!---rashes on torso/arms/backs that for 4 years looked like raised papules. Then for the NEXT 4 years, the bumps turned into perfect circles before expanding & fading without scarring. Local GP's & specialists came up with NOTHING. My final Dx, which I had to go to a teaching hospital to get: the SCLE "subset" of SLE. I've been on Plaquenil ever since & do pretty well, except for spells of pain & fatigue. Avoiding sun is a MUST for me.
Have your drs. considered these other "subsets" of SLE, given your recurrent rashes, elevated sed rate, pain & fatigue? Do you see any correlation between your rashes & sun exposure? (My photosensitivity, meaning time between sun & rash eruption, speeded up vastly, but only over many years.)
Just some thoughts... I hope something here is somehow useful to you. I send warm wishes & hopes that you can get this figured out ASAP. Sincerely, Vee
Last edited by VeeJ; 08-28-2007 at 03:20 AM.
TMB1874, hello, have you been tested for Lyme disease? You symptoms including the strange rashes can be related to Lyme. You mentioned that when you knee pain originally started you had strange rashes on arms and legs. This is common with Lyme. Your symptoms may have subsided because of the Plaquenil, which is also used to treat Lyme disease, but it needs to be combined with antibiotics to irradicate the disease. I was misdiagnosed with Lupus for years, all tests were neg. except ANA, but the doc insisted that I would eventually come up pos. for Lupus. I never did, but he did put me on Plaquenil which helped my symptoms, unfortunately without the proper treatment I ended up with alot of nerve damage that could have been stopped if he had properly tested and knew how to intepret my Lyme tests. Doc's first use the Elisa to test for Lyme, it is an inacurrate test that has way too many false neg. A Western Blot by IGeneX Labs is the best test to use. You can call IGeneX and request a Lyme kit for testing, have your doctor sign it and send it off. IGeneX reports Lyme bands, all you need is one Lyme specif band to be pos. for a confirmation that you have been exposed to Lyme disease. Most regular doc's do not know how to intepret these bands and can also tell you that you don't have Lyme. I know, it's confusing. Go on the Lyme boards and look at the symptoms and ask ?'s. And don't let anyone tell you there is no Lyme in Texas, I know hundreds of people that have Lyme here. there are alot of support groups in Houston and Austin. Good Luck, sincerely Sarah
Thank you for your responses. To answer a few questions, the rash does get worse in bright sunlight. It shows up as small circles, sometimes larger circles and then they all seem to merge together and go away. There is never any scarring or anything from them although they do tend to show up the next day anyways and the process starts all over again.
I have been treated originally last January w/ a 3 week round of Doxycyline which was supposed to be for Lyme's Disease but it didn't help or stop anything unfortunately. The good news is that I have an appt. tomorrow with the University of Texas Medical Center Rheumatology Department, yay! Hopefully we'll have some answers soon.
Hi, again. Do your "small circles" start as solid bumps, followed by the center clearing---meaning a circle with a clear center? Then followed by the rims of the circles expanding outward & losing their perfect circularity?
Just curious! What I just described was how my own "annular" (means targetlike) rashes appeared & evolved. Mine were on photoexposed portions of my upper arms & torso. Didn't itch & didn't scar. My Dx, after years & problems way beyond the rashes, was subacute cutaneous lupus erythematosus, abbreviated SCLE.
I hope your rheumie appt. goes well! Drop us an update when you have the time, OK? Thinking of you & sending best wishes. HANG IN THERE! Sincerely, Vee
I just wanted to say, yep...sound VERY familiar. Especially the jumping around thing. My knees do that too. My eyes bother me alot as well. I have recurring optic neuritis and it makes them hurt, but also causes vision loss.
I also wanted to add that my first lupus panel came back negative. My second panel a few months later was positive for Ro SSA and later other Antibodies followed with positive ANA. I just wanted to say that for the record that the first time can be negative and it turn later so keep checking.
There are so many rashes with lupus that it is really hard to say. I know that mine are simply because I had never had them before. The only rashes I had alway had were on my hands and that was a yearly occurrence. Never really tried to find out what it was because I had just gotten use to it having had it since I was a teen. My rashes now are much much worse and weird. The main thing is they are always in areas exposed to the sun. I have round flat areas on my chest and around my neck and the ones on my neck literally run my collar line (I wear my hair up every day so it is exposed). I do have a malar rash but it is no where near as prominant as the rash on my chin.
It does take alot of patience to get a diagnosis more often than not. Just hang in there, keep taking the naps and resting when you can and keep pushing the dr.
EStevens64--Hi there! So, are you saying that your ANA was neg. first then went pos.? When mine came back neg. they just said you don't have anything that I do. I didn't know to recheck. I did have a SED rate of 48 I think it was. Doc just said that was my thyroid but it is being treated so I didn't think that it should show inflammation with treatment????FLFLOWERGIRL
Yes, the first time and for quite some time it was negative. The first time all of it was but there was definately something going on and they had ruled out MS. I had optic neuritis and alot of CNS symptoms and I have a sister with Lupus so he scheduled a follow up appointment in 3 months. I wasnt even going to go. I was completely frustrated with the whole thing and felt I would just be throwing more good money after bad, but my family and my boss convinced me to keep the appointment. He ran the whole battery of tests again and that time the Ro SSA was positive which can make the ANA negative. I am not sure how but apparantly this is the case since ANA negative lupus usually will have a positive RO SSA. At that point he knew that the problem was definately autoimmune, just not exactly what it was and diagnosed Diffuse/Undefined Mixed Connective Tissue Disease. It wasnt till about a year later that my ANA came back positive. I have had a couple other antibody tests come back positive as well since then and was diagnosed with SLE the beginning of last year. He may have also kept testing since I had been receiving IV solumedrol treatments and IVIG treatments for the last 6 months which also could make the ANA negative.
I can only tell you about my own experience which was that you can have a negative ANA and find out later that it is in fact lupus. I will also add that I do NOT have a mild case so that has no bearing on it either. Mine is very active and organ threatening. I have CNS, kidney, lung, skin and muscular involvement.
so please please please take the extra minute or two to respond to me if you have any more infor on what this all means then me...which is nothing.
i am a nice gal normal life 38 two kids very healthy ..so i thought anyway...lol
have some hair breakage thought it might be due to a big weight loss i had a few months ago. over 90 pounds...yup i was a chubber...
anyway i feel soo prefectly fine....promise no issues...other then some hair breakage...anyway i work for a derm so he ran some tests and guess waht ...
i have a postiive ana 1 :180...but no systoms feel fine....now i am a nervous nelly when it comes to my health so these results send me to want to grab a dirnk....i worry taht i have some terminal problem.....
what does it mean guys to have a postive ana...and how about mine being 1:180...no systoms. what is this all abuot. i was told to follow up with my pcp onmonday but guess waht it is friday and i am a reck worring. can you have a postive ana wtih that result and be completley fine with no lupus no anything or is it pretty clear i have something with those levels....? please i beg ya respond...i am worried guys....thank you in advance and god bless you all! april
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I just wanted to say a positive ANA does not make lupus. Many conditions have a positive ANA and some people just have a positive ANA and no disease at all. Without any symptoms besides hair breakage, which by the way is not the case with most lupus patients, when most refer to hair loss it is not breakage but actually falling out. I lose alot of hair, like handfuls. Breakage can be from exactly as you thought or simply a bad diet or even changes in hormone levels making it more dry and brittle.
If you have no symptoms, you should not fret over it. There is a sticky post at the top of all of the threads that lists not only the symptoms but also the criteria to diagnose lupus. A positive ANA is only 1 of 11 and you must meet 4 of the 11 to get a diagnosis.
If you look at that list and you don't see yourself, then stop worrying. Most of us are very symptomatic long before we get a diagnosis of lupus and most of us knew long before we were told we had lupus that we had either lupus or something pretty major wrong.
You know your body better than anyone. Just because a lab says your blood has an antibody, does not mean you are sick if you know you arent. If you read up on it you will see in many places that some people just have a positive ana.
I hope I have helped atleast a little. If you read my prior post you will see that I was actually at the opposing side and was very symptomatic with many symptoms, but had a negative ANA that only after over a year turned positive. Some medications can cause a positive ANA too.
Do your own research and you will see many sites that will confirm what I have just told you. A positive ANA does NOT mean lupus.
Hope this puts your mind a bit at rest and you can enjoy your weekend.
i want you to know you are a angel from above. thank you alot for letting me get some sleep this evening and also making since of all this forme. youare a wonderul person. and i wish you so well with your health. thank you so much april