I am 41 years old. My symptoms began after giving birth to my daughter 11 years ago, and they have gradually gotten worse to the point now where I am starting to become concerned.
Here are some of my symptoms:
I will get red dots on my feet, ankles and calves if I am standing too long, or sitting on a hard bar stool. It's worse if I've been drinking alcohol. Both legs will swell up, get itchy, and the rash appears. It can be painful. It will last for about a week before it fades. I was told by a vascular doctor that I do NOT have varicous veins.
I am tired ALL THE TIME.
I have a red rash that looks like a sunburn on my chest that doesn't go away. If I get hot, it gets brighter.
My joints ache. Especially my neck, shoulders, lower back and fingers.
I get painful gout in my feet if I eat certain foods.
Most days, I have a mild headache (could be due to the neck pain).
I have trouble remembering things and concentrating.
I have a dark circular spot on my cheek (which is probably due to sun damage)
My eyes are always dry, and I have lots of "floaters"
My skin is extremely dry and itchy--especially in the winter months.
About two yeas ago, I went to my family doctor. He did an ANA (sp?) test and it was high. I went to a Rheumatologist, and he did further testing. He mentioned sjogrens (sp?) I was to go in for a mouth biopsy but never did. I got scared and cancelled the appointment. Plus, it was getting expensive trying to pinpoint what was going on.
TLI, hi & welcome! Obviously I'm only a patient, but I think you'd be wise to revisit that rheumatologist. I can only compare what you wrote to my own problems & to what I've read here and in hardcovers. With ongoing chest rash + multiple arthritic problems + headaches + dry eyes? All those things make me think revisiting a rheumatologist is a logical next step.
A great resource on lupus & similar conditions: go to your library for Dr. Daniel Wallace's lupus hardcover. He covers lupus, Sjogren's, and all "close cousins". Also, Dr. Robert Lahita's hardcover is another that covers the same issues.
Whether it's lupus or not or Sjogren's or both? That's only for a doctor to say.
RASHES: there are more lupus-specific rashes than some literature mentions. Most often, you'll see info about malar (butterfly facial) & discoid (scarring &/or depigmenting) rashes. BUT there are others, including one called "tumid" that can affect the upper chest/neck area. I had a "minority" rash & banged my head against the wall for years looking for answers. So look for a rheumie who knows rashes BEYOND discoid & malar, is my best advice on rashes.
RED DOTS on ankles: I have many, dx'ed as cutaneous vasculitis. But again, what yours are is only for a doctor to say.
SJOGREN'S can co-exist with lupus, or it can exist standalone. When you tested for a very high ANA, were MORE SPECIFIC autoantibody tests run? The interesting one could be "anti-Ro", which can be positive in Sjogren's or in lupus, or both. That lip biopsy you avoided is deemed the best test for Sjogren's.
I hope something here helps some. I hope you post more soon & that others chip in. Meanwhile, best wishes, sincerely, Vee (Dx'ed 9 years ago with lupus, positive for the anti-Ro autoantibody, a rash NOT like the one you described, and decades of other chronic problems) HANG TOUGH!
hi...welcome to the group. i've had lupus for 15 years. my actual dx is undifferented connective tissue disease with symptoms of lupus, scleroderma, sjorgren's. many symptoms cross diseases. i have many skin issues and if you look at this board and others, skin rashes are a huge topic. i have the chest/neck rash and look like i have too much blush on most days. i have had several skin biopsies that assisted in my dx. you might want to make an appointment with a dermie.
and make another appointment with a rheumy. remember a high ANA is not a requirement for a lupus dx...it is one of many factors. my husband always says that a lupus dx is made when everything else is ruled out. so your previous experience of not getting easy answers will probably persist. most lupies have a team of doctors.
TLH, Heidi [hi, Heidi!] just mentioned seeing a dermatologist.
I saw many doctors locally, and they did not "play well together", to put it mildly. To improve your odds that your specialists can/will coordinate, you could go to rheumie FIRST & ask him to recommend a dermie, if required. (Or vice versa.) Hopefully the doctors in your area don't engage in open warfare, but just in case they do... Keep in touch, OK? Best wishes, Vee
Hi TLI, welcome to the group, I'm just new on here too but would like to add something to questions & advice posed by others here in response to your post....I had the dry itchy skin, memory issues & concentrating problem, constant nagging headache, dry eyes, nose, mouth & vaginal dryness, joint pain too,swelling of ankles & feet....5 years ago I was DX with SLE (lupus), a year ago I was DX with Hypothyroid, a few months ago they added Sjogren's Syndrome to all of this....my ANA is off the charts....WBC is constantly low at 3.9.....hormone testing revealed that my estrogen levels were low....that all said, your age & the symptoms you mention should indicate that further testing is required to rule out a thyroid condition or other hormonal imbalance....also, the information that you provided about how that rash gets worse when you drink alcohol is a red flag that you could be allergic to it....I get rashes like that if I drink white wine....also a reeeeaaally bad headache even if it is just one glass of wine....I am allergic to the sulphites in some wines....not sure but maybe you could see an allergy specialist? do I get scared? yup, specially waiting for results of some of these tests, the waiting raises my anxiety levels reeeeaaaally high....but that does my health no good at all....so I try to keep distracted with hobbies & such.....Hang in there....the people on here are very supportive & have great suggestions for reading material!!!
Last edited by Gypsylady; 09-12-2009 at 10:04 AM.
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