Please any advice greatly appreciated.....

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New Member

Date Joined Apr 2009
Total Posts : 4
   Posted 4/15/2009 2:35 PM (GMT -6)   
Hello everyone. I just wanted to say that these forums are so great so everyone can help each other. What a wonderful thing! I was hoping for some advice if anyone is able to sit through my whole post (so sorry). Well my background real quick, I am a single mother to a 3 year old little boy, I am 26 years old, and a bit scared. I am a full time college student who usually gets straight A's however lately I will drive all the way to school (45 min) then sit in my car and sleep through class, the fatigue can be quite overwhelming at times. Being a single mother with no health insurance for myself (my son has insurance), I am terrified about being diagnosed and not being able to afford the meds or staying well long enough to watch my son grow up. After doing some research, I started thinking that my symptoms could point to lupus. I then went to Dr. today and without me even mentioning lupus, he suggested it. There is also someone in my family (not immediate) who was diagnosed. The doctor said it will take at least a week for my results so now I play the waiting game. I just wanted to post some of my symptoms so I could get any suggestions from real people who know. I am so scared because my son is my life and he is too young for his mommy to be ill. So I would greatly appreciate ANY opinions from anyone. Please tell me if this sounds like it could be lupus or something else, please do not sugarcoat and I understand that I will not know for sure until my blood tests come back. Here goes:

-I have been sick it seems constantly since last March, 1 year and 2 months ago. Soon as I get better, seems I get sick again.
-Since then, it feels like I have gotten old, no energy to do much of anything, especially the last few months.
-Have to pull over into random parking lots at times just so I can sleep.
-I do have the pink rash on my face that covers my checks and goes over my nose, however it covers my WHOLE cheek on the left side not just under my eye area like a lot of pics I have seen on the internet.
-I have lost 12 pounds with no explanation, however I was able to gain it back by taking weight gainer (I am already too thin) I look disgusting like I have an eating disorder (I do not).
-I am developing this weird rash that does not itch or anything. It comes and goes for the last month. It is different and effects all parts of my body but is never raised (more like blotches). My skin on my legs turned red and had these white blotches, some white blotches are small like the size of a pencil eraser, some are large like the size of the opening of a coffee cup. They appear all over my legs. My feet turn purplish and become all veiny. Sometimes my feet are beat red. Then my hands turn beat red and my arms get this red dotty rash. All the veins in my hands going all the way up my arms bulge really bad. It does not even look like my skin. My palms get all blotchy pink and white. Under my breasts turned purple from all these small spider veins that came near the surface of my skin. My chest turns red from all these little veins, I dont know if it is broken blood vessels or what. My veins bulge all over. Certain areas over my bones turn purple like the bones in my ankles and my knuckles and knees. When I have a flare up of the rash on my body, the rash on my face becomes more red so I know it must all be related. It seems like standing in my bathroom near the bright light bulbs makes it worse. However the bulbs in my bathroom are not fluorescent nor are they those new energy saving bulbs (I know these types affect the lupus rash in some). My bulbs are just a high watt regular bulb.
-I had scalp pain and a scaly area on my scalp along with dandruff and slight hair loss. The pain and dandruff just went away the next day without even using dandruff treatment.
-I have been having joint pain that is on and off. It is NOT a dull ache, it is a stabbing quick pain that affects different joints at different times. It started with my thumb, would hurt for a day then go away for a couple days, then start hurting again. The pain is not that bad, just mild but alarming.
-My knees have been the most consistent with the joint pain. It almost always hurts if I try to stand up from a kneeling position.
-Sometimes I wake up and the bottom of my feet are really sore. It feels as if I had walked a mile the day before even though I did not.
-Lately my ribs in my back hurt, the lower ribs. This is not stabbing but dull ache more like they are sore.
-I have had swollen glands in my abdomen, groin, and I think the lumps in my neck are glands but they are not under my jaw, it is on the sides of my neck about half way down.
-I urinated a fair amount of blood. I figured it was a bladder infection because I had pain like I always do when I get a bladder infection. I just took over the counter AZO then it was gone the next day.
-I have had herpes for 10 years and only had the initial outbreak. Then suddenly a couple months ago I had 3 outbreaks all in a row, this is not normal for me.
-I get dizzy spells from time to time.
-I got my nipples pierced months ago, and they still have not healed.

After I had lost all the weight but before I started having all these other symptoms, I went to the doc, he did not want to test me for too much since I do not have insurance. They tested CBC, thyroid, and blood sugar all was normal. Today they tested ANA among many other things. I am so sorry about the long post, I am just hoping that someone can tell me if this sounds like lupus possibility or something else. I appreciate you taking the time. I hope whoever is reading this is feeling well I wish everyone good health.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 4/15/2009 3:57 PM (GMT -6)   
Hey Austins mom! welcome to the group. It sounds like you are having a rough time of it. Saly it takes doctors forever to figure out what we suffer with so for us to try to tell you would be impossible. The only thing I can say is by what you mentioned you diffinently have something going on.Yes you do have some Lupus symptoms.
I wish I could tell you how to get help with your medical bills but I just don't know. If you go up to the top of this ection you might find somthing under LUPUS RESOURCES'. I imaagine there are links and phone #'s and emails that might help. It won't hurt to try anything you have to to get help. Like you said you have a child you have to be there for. I do know there are programs that will help with perscriptions they might know of a program that will help with physician assistance. There are drugs that many dr's will try out on you even without a diagnosis. Like predisone and plaquenil. Perhaps you can get your dr. to try you out on them? They aren't going to hurt you at least not under normal circumstances. I hope someone here can give you some better info and encouragement. Hang in there there really is hope.
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


New Member

Date Joined Apr 2009
Total Posts : 4
   Posted 4/15/2009 4:17 PM (GMT -6)   
Thank you so much Carol! Yes I definitely plan to dig around this site I just wanted to get that original post out of the way ;) So by any chance does anyone know if the bulging veins are a symptom because I cannot find much on the internet about that in particular. BTW thanks for reading my long post!!!

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 4/15/2009 4:47 PM (GMT -6)   


I know how scared/worried you must be. Hopefully the docs will get this figured out for you quick. I don't have a lot of advice...for the joint pain, a nice warm bath with epsons salts can help a lot, also if you have access to a sauna I would high recommend using it. When I lived in apt complex I used it almost everynight! On the nights that I couldnt sleep due to joint pain I would go to the sauna at 2 and 3 in the morning. I have also woken up with my feet feeling like I had been standing all day on them. I have found if i get one of those spa foot bath that stays heated and also messages your feet seems to help alittle.

Welcome to healing well! I hope you will stick around and keep us updated!



21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 4/15/2009 4:55 PM (GMT -6)   

Please do what you can to get health insurance and do this BEFORE you get a lupus diagnosis. After a diagnosis it's very difficult and very expensive to bet health coverage. When you see you doctor explain this to him so he'll keep it out of your chart. I currently pay $950 a month for health insurance for myself (no other family members are covered by my plan) because of my lupus. If you do have lupus, you will need a lot of good medical care and for that reason insurance is so important.

But on to other things, like how you're feeling. I'm sure we were all scared at one point or another but being only 26 with a young child makes the prospects of a chronic illness even scarier. If your doctor suggested lupus then it's very possible that you have an autoimmune condition. But let's hope that you don't. I identify with everything you mentioned except for the rash. I hope your doctor can tell you what that is.

I'm glad you're here. We all need a support system whether we've been diagnosed or are still going through exploration process. Do let us know how you get on and what your doctor has to say. We're here for you.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 4/15/2009 9:57 PM (GMT -6)   
Christina Welcome to the forum! You do have alot going on, I have the rash but mine started out scaly and itchy, my arms red rash and bumpy. I also heard with lupus you can have broken blood vessels. Once they know what is going on and if it lupus you will most likley be on plaquenil which will take about 6 months before you start feeling better, they may also put you on preds. you do sound like you have some type of autoimmune. There are people on here that are in some kind of situation you are in with out medical ins. They had many suggestion and resources to go to. Wish you the best of luck. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 4/17/2009 7:50 AM (GMT -6)   
Hello Austinsmommy3, I hear you so clearly and my heart is heavy for you. The rash thing on the face can take many shapes on mine. Before I found out what it was, I ask a doc, "Why does this happen to me/" The reply was, "Don't worry it won't kill you." mad   Thank goodness your doc is moving forward and checking your blood work. Sometimes my bloodwork didn't say much, but the doc treated it anyway, and i found relief. Plaquenil helped me the most drastically and brought me more quality of life. I am concerned about you not having insurance. Perhaps you can go to the department of welfare and ask if they know of any perscription programs that can help. You can E mail me if you want to vent longer. Sounds like you are on the right track and things will soon look up. God bless, Tammy
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