View Full Version : Any advice would be GREATLY appreciated!!!

04-15-2009, 01:46 PM
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.

Sarah Quinn
04-15-2009, 02:11 PM
Hi, i have many symptoms myself, they include sore feet every morning, infact some mornings they feel like blocks of wood. i also have pains to a dull sickly ache in my neck, somtimes i can only sleep on one side.. my family joke about how sleepy i can get, even falling asleep whilst they are talking to me, forgetfulness can be frustrating and also funny, it also started with a pain sometimes sharp enough to take my breath away in my thumb... its best you wait for proper medical advice, good luck x

04-15-2009, 02:18 PM
AWWWWW, HI AUSTINSMOMMY3! Cute, 3 is a sweet age:cute: So sorry for your pain and,confusion and worry. I can say that to me you definately fit the criteria with the list of symptoms you gave. Sorry about your lack of insurance, how difficult for you. I give you credit for your being a single mother,how hard on its own but now with these health issues, i feel for you. Do you have any kind of support system? Family, friends? Can anyone help you with your responsiblities to lighten the load? You need to ask for help in this journey sweetie. You can do it alone im sure with your strength, but, so you can be there the way your son needs you, this is a time when you take all the help you can get. You need to eat as natural and as healthy as you can, exercise as often as you can(even if its just 15-30 mins a day), chart your symptoms, notice and recognize WHY you feel a certain symptom(foods,smells,overexertion....) ,get as much sleep as you can, any government aid in your area for health care, go to all specialists needed to monitor your health (unfortunately you cant just see one dr with this illness since it effects EVERY body part,inside and out) , please do what YOU need to do to take care of that precious boys mommy:angelic: I wish you the BEST of LUCK and WE are HERE for YOU! I know you will get great advice and help from the other WONDERFUL people on this forum! Gentle hugs to you and your sonXXXXXXXXXXXXX:hug:

04-15-2009, 08:15 PM
Sorry you feel so bad!!! Ins. Can be hard to get ins. on your own with a Lupus diagnosis. I have known the Lupus Foundation in my area to help with medical expenses. But I don't know if you need a diagnoses first. Is there a Lupus Foundation chapter in your area? You are a stong woman to mangane all this on you own!!! Everbody here is so support.

04-15-2009, 09:00 PM
hi austinsmommy3,

he must be so cute, i hope to see a picture soon.

you have already been given some very good advice. I think it is a good idea to see if there is a means for financial support from lupus foundation, or health care services.

Also, you really do need to accept any help that you can get...extreme fatigue (no matter what the cause) requires getting a lot of rest. some nights is sleep just a few hours, but if i am in a flare, i need 12 hours.

my hands also get really red, and the veins stick way out, this was my first symptom (but i was first diagnosed with fibromyalgia).

Do you have an appointment to go back to the dr. to get lab results?

we will do anything we can to help you...you have found friends.

04-16-2009, 09:47 AM
Hi Austinsmommy;
From what you describe, it certainly sounds as if you have some form of auto-immune disorder. The sore feet may be a result of Lupus lesions that are forming under your skin right now and have not yet come to the surface. I say this because you also stated that you had a rash and hair loss on your scalp. Or it could be Sjorgen's (another auto-immune disorder that often overlaps with Lupus). You have the rash, you have the skin manifestations, you have the fatigue, blood in your urine (probably with protein leakage), as well as other indicative symptoms.
When you get the results from your tests, please let us know what they are so that we can help you decipher them. Lupus is a very, very difficult disease to diagnose, so the process can take up to a year sometimes. But, we will help you as much as we can and will answer your questions as best as we can. Let us know what your test results are, we can start there!

Peace and Blessings

04-16-2009, 02:13 PM
Hi Austinsmommy,

I'm Rob, and I was diagnosed with Systemic Lupus five years ago. I have to agree with the others here, it does sound like an autoimmune disorder. As Saysusie said, it can be Lupus, or Sjogrens, or a combination of both. I know this is scary stuff to have to deal with. You are scared, but you don't have to deal with your fear alone. We have all been where you are now, so believe me, we understand how you are feeling right now. Don't be afraid to come here and talk about anything you need to. And don't worry about long posts, they make it easier for people to get to know each other. If you do end up being diagnosed with Lupus, please know that lupus will change your life, but it is by no means the end. Many of us live with the disease, and thrive in spite of it. It can be hard to deal with, the pain, frustration, and fear can wear a person down. But, in many cases, Lupus can be effectively managed, and, some people even go into remission. There are alot of reasons to have hope. Anyway, welcome to our group, and please make yourself at home.


04-16-2009, 02:28 PM
I just wanted to say thank you to everyone who replied to my posts. It really means a lot to me. THANK YOU. It feels better just knowing there are good people there to chat with when I am feeling down. :cute:

04-16-2009, 03:09 PM
We're HAPPY to be HERE for YOU!!!!!!:cute: