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View Full Version : Does anyone know if these are symptoms of lupus?



Steve88
07-13-2008, 05:53 AM
Well I'm 19 and lately I've been living a teenage life that I don't think anyone else does that I know. I have ultra sensitive skin on my face that is pretty much a butterfly rash. My nose and upper cheeks right next to my nose are effected. Sometimes it stings itches and peels. Yesterday I got out of the shower and so much skin was just peeling off my face and it is irritated like crazy. Another thing I noticed was my hands turning very purple and so do my knuckles. If i'm just a little chilly my knuckles turn purple and so do the other knuckles midway on my finger. Last week I took pictures of my hand when it was 75 degrees and my whole hand was purple except the ends which were PALE. I've been waking up every morning with stomache cramps and diarriah. Lately I've been getting sick and it feels like i can't breathe or when I do breathe in deeply my lungs hurt. I've been urinating a lot lately also. It seems like if i drink a glass of water ill get hit all at once and I just got to pee immediately a soon time after. I think I might be going through a flare right now. I have purplish darkness under my eyes which makes me look like a body in the morgue. I can also remember shooting stabbing pains my whole life. I would just like someone to tell me if these are symptoms. My mom has an autoimmune disease but she makes me out to be a huge hyperchondriac. Thanks

Can anyone relate to the mad peeling of your butterfly rash? It is almost like I'm scraping skin that is peeling off by the layers. I only wash my face with water because thats all it can handle but it doesn't seem to help it.

KathyW1958
07-13-2008, 06:38 AM
Hi Steve and welcome to the forum. I think you have something going on and that you should defintely see a doctor. It is sad that your mother is treating you like a Hypochondriac. She should realize that if she has an Auto-immune disorder that you too could very well have it or a different one. I know that doctors will decline to diagnose Lupus without a person meeting at least four of the criteria they list for the disease. I will put the list in here for you to check out and you can print it out. You need to contact a doctor. Here is the list:

Symptoms
If you have lupus (systemic lupus erythematosus, or SLE), you may be extremely tired, have skin rashes, or have joint pain. If the disease is more serious, you may have problems with your kidneys, heart, lungs, blood, or nervous system.



Lupus symptoms depend on what body organs are affected and how seriously they are affected.

Fatigue: About 90% of people with lupus have mild to extreme fatigue.4 Even mild cases of lupus cause an inability to engage in daily activities and exercise.5 Increased fatigue is a classic sign that a symptom flare is about to occur.

Joint and muscle pain: About 95% of people with lupus have joint pain (arthritis) at some time. About 70% of people with lupus report that joint and muscle pain was their first sign of the disease.4 Joints may be red and warm, and may swell. Morning stiffness may also be felt. Lupus arthritis often occurs on both sides of the body at the same time, particularly in the wrists, small joints of the hands, elbows, knees, and ankles.6

Skin problems: Most people with lupus develop skin rashes.6 These rashes are often an important clue to the diagnosis. In addition to the butterfly rash over the cheeks and bridge of the nose, other common skin symptoms include skin sores or flaky red spots on the arms, hands, face, neck, or back; mouth or lip sores; and a scaly, red, or purple raised rash on the face, neck, scalp, ears, arms, and chest.

Sensitivity to light: Exposure to ultraviolet light (such as sunlight or tanning parlors) typically worsens the skin rash and can trigger lupus flares. Sensitivity to light affects more than 50% of those with lupus, with fair-skinned people with lupus tending to be more sensitive.


4.Nervous system symptoms: The majority of people with lupus develop nervous system problems, most commonly headaches, depression, or anxiety. Memory loss is less common.

Heart problems: People with lupus may develop inflammation of the heart sac (pericarditis), which may cause severe, sudden pain in the center of the left side of the chest that may spread to the neck, back, shoulders, or arms.

Mental health problems: People with lupus may develop problems such as anxiety and depression. Such problems can be caused by lupus, the medications used to treat it, or the stress of coping with chronic illness.

Fever: About 80% of people with lupus will sometimes have a low-grade fever related to the disease. Over a third of people with lupus report that fever was a first sign of the disease.4

Changes in weight: About 60% of people with lupus lose weight when their disease is active (flaring).4

Hair loss: Up to 50% of people with lupus experience periods of hair loss, either in patches or spread evenly over the head. This hair loss is usually not permanent.6

Swollen glands: Up to 50% of people with lupus eventually develop swollen lymph glands during a flare.4

Raynaud's phenomenon: This condition is present in about 20% of people with lupus.7 It affects the small vessels that supply blood to the skin and the soft tissues under the skin of the fingers and toes, causing them to turn white and/or blue or red. The skin affected will feel numb, tingly, and cold to the touch.

Inflammation of blood vessels in the skin (cutaneous vasculitis): Inflammation or bleeding from the blood vessels can lead to small or large blue spots or small reddish spots on the skin or nail beds.

Steve I hope that this helps you out.

Hugs,
Kathy

cheryl_v
07-13-2008, 06:42 AM
Hi Steve88. I'm sure someone will come along soon with helpful info. Just wanted to let you know that your not a hypperchondriac. Does sound as if somethings going on. You should know better than anyone. Ask your mum if she can at least take you to have the rash looked at, for relief. See what she says, nag if neded. Hope you find relief soon :D .

Oluwa
07-13-2008, 02:45 PM
Hi Steve88...

Information regarding Raynaud's Syndrome...purplish blue fingers...

http://www.mayoclinic.com/health/raynauds-disease/DS00433/DSECTION=symptoms

With your frequent urination, are you excessively thirsty, weight loss, any pain...frequent urination can be a myriad of things from diabetes to urinary tract infection, kidney involvement..

I have malar rash, aka butterfly...Is it literally peeling off or is it flaky skin? Have you applied any creams especially a cortisone cream at all? Cotisone creams thin the skin...should be used sparingly if you do.

Eczema? Rosacea?

Dark circles under your eyes....Are you an anemic? Sleeping well?

Have you been to any doctors for treatment of your symptoms?

Are you still on your Mum's health insurance? If so, make an appointment yourself.

Being 19 there are others ways to obtain healthcare, do you yourself have any?

Hope this helps..
HUgs, hang in there..
Oluwa

Steve88
07-13-2008, 04:44 PM
I'm not sure what the difference is but I am sure its flaking because there are many pieces all over my face after a shower. During the day I can kind of scrape off flakes because its so dry. The shower really brings them out tho and I have to literally pick them all off or it looks disgusting. I'm not diabetic I was tested for it in the past because of urinating so much. Today I feel like my eyes are extremely heavy and I've been having dull headaches all day. I feel like my whole body is just exhausted. I could pretty much sit in bed all day. I don't have severe joint pains or anything but I do get alot of dull achy pains. Thanks for the help everyone

Oluwa
07-13-2008, 05:49 PM
Steve..

All the things you mention, diarrhea, pain , fatigue, heavy eyes, tired, headaches... all can be symptoms from IT..from other illnesses too...

When was the last time you have been to the doctor?

Malar rash...can be drying, can flake especially from hot water then drying out. Do you take long showers? Do you apply a light moisturizer? Try washing you face with Cetaphil liquid cleanser for sensitive skin if you do not want to use moisturizers.

Are you fasting? Drinking water on an empty stomach? Could be reasons for frequent urination.

Too much coffee? IBS?

Are you taking an medication?

The reason for the all the questions in my posts is to help you to put things is perspective, possibilities, ideas to research, to give you direction to search in..

With the myriad of symptoms you are having I think it is important for you to seek out a doctor to rule out any diseases and treat your symptoms.

Hope this helps.
Keep looking for your wellness.
Hugs,
Oluwa

KathyW1958
07-14-2008, 02:14 AM
Hi Steve,
I am wondering by reading your posts if you could have Discoid Lupus. With Discoid Lupus, you may not have joint involvement. I do definitely think that you need to see a doctor and at the very least get checked for it. I am also wondering if you may have Sjogrens with it. I think that it is sad that your mother thinks that you are a hypochondriac. I think that you can see a doctor without your mothers permission if you are in the states, because you are over 18 years of age. I hope that you can get in to see a doctor. Keep us posted as to what you are going to do and I wish you the best of luck in finding out what is happening. God Bless.

Kathy

Steve88
07-14-2008, 07:35 PM
Well today I went to the doctor and i showed her pictures of my hands she thinks its definitely raynauds. I lucked out and the doctors office was pretty chilly and my hands turned a little purple I had my mom come with me and what the doctor was saying really shocked her. She finally believes something is wrong. I had to take an ANA test, a rheumatic something test, and a thyroid check. Going to have to wait seven days before I hear from them again. I only take luke warm showers because it would irritate my skin. I only use water right now because cleansers (even cetaphil) wreck my face. I don't fast either. I just drink normally throughout the day.

cheryl_v
07-14-2008, 07:38 PM
I'm so glad you got to go to the doc. Please let us know what the test results are. Keeping my fingers crossed its all good :D .

KathyW1958
07-15-2008, 02:32 AM
Hi Steve,
I am glad that you got to see the doctor and that now your mother finally sees that there is something really going on with you. Keep us posted as to what the results come back as.

Hugs,
Kathy

laurid8967
07-15-2008, 05:06 AM
Steve -
Keep us posted. I completely understand what its like to have your Mom not believe you are sick. Although I was 31 years old with two kids, and she STILL thought I was jsut lazy!! Im glad you were able to be validated by the doctor today.
Keep us posted on the results, OK? Hang in there - youve already gotten through some of the worst part - having someone beilieve you!!
Lauri

Steve88
07-15-2008, 07:44 PM
I'm glad I found the forum it feels good to know people care. I'm not sure if I want to the results to come back positive or not. Some days I hope it is so I can get treated quicker. Other days I don't. Do the prescription medicines help quite a bit? Most of all I want to get rid of the irritated rash on my face. I hate the thought of taking a shower and how bad it will sting and the skin I'll have to scrape off my face. I have heard how good plaquenil clears up rashes. Has prlescription mess helped with all of your face rashes? Typing on my iPod in my bed so I'll be on tomorrow thanks everyone

mnjodette
07-16-2008, 04:38 AM
Steve, glad to know that you're Mom was with you at the doctor - that'll help her to understand what's going on. I know how conflicted you are about the getting a diagnosis: it'd be good to know for sure; but it's not something anybody wants to have! Medication (like plaquenil) helps a lot - but plaquenil in particular takes a while to build up in the body and really work. There may be other things your doctor will want you to use. Let us know what you learn, Steve. Glad you found us!

Jody

Oluwa
07-16-2008, 05:40 AM
Steve...

My malar cleared up since dosing with Plaquenil. Prior it was red, dry spot..not pretty. Now since dosing it is just a shade of light pink. When I do flare it reds up and a dry spot here and there appear...

Scraping you face sounds awfully harsh and irritating. It stings because it is raw from water and scraping the fresh attached skin, damaging it more. Is it red and shiny now, yep...it is raw....Try using a soft white wash cloth and slough if off the dry dead skin..gentle movements in small circles. Or try using a bit of mineral oil, when it is so dry to slough of the dead skin using the same...soft cloth and small circles... or rinse with a oatmeal rinse.

Oatmeal rinse. One cup of Old Fashion Oatmeal soaked in 2 quarts of water. Stir...wait till it gets milky. Sieve. Save oatmeal for another batch and reserve water to rinse you face off with. Do not rinse the oatmeal rinse off with water..that is your rinse...pat dry.

Diagnosing Lupus early and receiving the treatment is important. Key is to prevent and manage Lupus. You are the maestro of your orchestra, you.

Hugs..I am happy your Mum believes in you, it is important to feel validated especially from Mum...

If you do caffeinated beverages that could cause diarrhea too, or maybe you have IBS or another digestive tract illness. Did you mention to your doctor your diarrhea. It is important to keep a journal of all symptoms, the intensity of them...1 - 10, when they occurred and any possible relationships to food, stress and etc until you are diagnose.

Till then read the STICKYs in Lauri's Lounge, about Photosensitivity, Home Care and Dealing with Flares. It is never to early to start caring for yourself and taking preventive action.

Keep well..hugs,
OLuwa

Steve88
07-22-2008, 11:00 AM
Well I got my blood tests in and all of them were fine. It kind of makes me mad. The doctor who did my blood tests told me she didnt think my blood tests would come back that way either. She saw the pictures of my raynauds phenomenon hands and such. She referred me to the rheumatology doctor. Is this normal? Does anyone else show normal blood tests? I know something is not right, not at my age.

cheryl_v
07-22-2008, 11:45 AM
Hi Steve, I do understand the frustration. Your glad, but so upset too because you know somethings wrong. It seems, from what I've read, the test results often come back normal when ill and abnormal when feeling good. Go figure :? . I had an abnormal test 2x almost 5yrs ago, everyone since then has been nomal. Rhuemy's are often recommended because they can run more test than a primary doc is allowed, so hopefully you'll get some answers. They also know little things to look for as well. Beware, first app. are generally 2-3 months away with paper work. Had another new rhuemy doc myself, took 3 months for first app. to be seen. Good luck.

Sparky120166
08-07-2008, 05:00 PM
I actually have numerous autoimmune issues. I wanted to tell you that you should see a rheumatologist. At such a young age it is uncommon to have so many issues. About your hands. I also had that problem. They would look like a dead persons hands. I got sores on the fingertips that would not heal. I had surgery on my hands 3 years ago. Basically the Dr. did a by-pass and rerouted the viens in my fingers, palms and wrists. It was very successful. If you do not get treatment for the sores you can lose fingers. I have been sickly all my life. At 21 I was in ICU with renal crisis. I'm 42 now I take 14 medications daily. I have chronic pain, chronic depression, osteoarthritis, degenerative disc disease (7 surgeries on back). ETC, ETC. At this point I have been on disability for 2 years. My husband does not understand my "Invisible Illness". I found a great site that really helps me when I'm down. It is called butyoudontlooksick
and there is a great story called the spoon theory. Share this with your mom. It may help her with her personal battle and yours. Please e-mail me anytime. I'm a Retired Nurse and seem to have been blessed with a wealth of usseless information.

Sparky