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Does anyone have Lupus in this group?

Posted by on May. 24, 2009 at 2:58 PM
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I already applied to a few Lupus groups on here, but I'm not getting any responses and so I figured I'd try here since it's a bigger community...

I know none of you are doctors, but I'm just wanting to find out a few things. I haven't been diagnosed yet, simply because I cannot find a doctor who will run the damn tests for me. I wanted to tell you all my symptoms and see if it sounds like Lupus to you(if you've been diagnosed with it).

I've had chronic pain since I was 11 years old. At age 15, I went to a chiropractor first and he couldn't do anything to me (touch me) because I was in SO much pain from just touching certain places on my body. He thought I had Fibromyalgia and sent me to a neurologist first. The neurologist diagnosed me with fibro and allodynia (apparently it's a disease where the nerve endings are hypersensitive and pain is caused when certain pressure points are touched) and sent me to a rhemuatologist. At the time I was pregnant with my son, so he couldn't do anything for me and sent me on my way. Now here I am over 6 years later and have a lot more symptoms than I ever had:

- I have a constant rash that keeps coming back. It's on my fingers (sometimes it is on my arms and legs) and sometimes it turns into blisters. Most of the time it's dry red patches and it hurts so bad. I've gone to a dermatologist who said it was eczema but it's not. I've had 4 different prescription creams and they never helped. I'm learning to deal with it. I started getting the rash after my 1st child.
- I'm spilling protein in my urine. I had a complete blood work up a few months ago and it said that my microalbumin was 49.1 My microalbumin/creatinine ratio is 237. I also did a 24 urine test and that came back with protein in my urine as well (I had preeclampsia with both of my children)
- I still have high BP from the preeclampsia from my DD (she's 8 months old). The range varies anywhere from 130/85 to 200/100.
-I'm ALWAYS cold. When I lived in FL I would wear a jacket all year round. Now I live in NC and it's awful in the winter time.
-I've got chronic pain all of the time in all of my joints and muscles. Sometimes it feels like they're on fire and sometimes they feel cold as ice. My body just feels so stiff all of the time.
-I have night sweats constantly. I have to change my clothes and normally just wear a tank top and underwear to bed.
-I've got onset hypothyroidism and diabetes type 2. (My thyroid is 4.22 and my fasting glucose levels were over 140.)
-I'm tired ALL of the time. Everyone keeps telling me it's because I have an 8 month old DD and a 2 year old DS but I've been tired since I was 16 and didn't have children then. I'm always having to lay down. Even if I get 8 hours of sleep I'm still tired. Then again, I never get consecutive hours of sleep.
-I've had anxiety and depression for years. I've taken medications for them both and none help.
-Chronic dry eyes. I have these thin noodle-like straws in my tear ducts to make me produce more tears because my eyes are always so dry.
-Chest pain. It always feels like an elephant is sitting on my chest. It burns when I breathe in deeply sometimes.
-I always feel like I'm in a fog and have memory loss. People say it's 'fibro fog' but I don't know.

Sorry this is so long, but I'm just wondering HOW you get a doctor to test you for things? I also think I have Sjogrens but because it's rare, no doctor wants to test me. The last doctor I had (before I stopped going) asked if I had ever seen a psychaitrist because depression meets a lot of these "symptoms" I have. How rude and insulting. I'm NOT crazy. There IS something wrong with me.

How did you guys go about getting tested? I mean, I have insurance and I'm willing to pay for the damn blood tests, how do you convience a doctor?



                   

by on May. 24, 2009 at 2:58 PM
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chairhead28
by Silver Member on May. 24, 2009 at 3:02 PM

And if you don't have it, please, bump this. I've been trying to figure out what's been going on with me since I was 15. I'm tired of hearing that I'm crazy. I feel like I should go on one of the Mystery Diagnosis shows on Discovery Health because no doctor has ever taken me seriously or cared enough to give me a test to see if I have it or not. If I don't, then I don't, but I won't give up. 



                   

momma2-3boys
by on May. 24, 2009 at 3:04 PM

Go back and get seen by a Rheumatologist and demand testing.  They are the ones that will help you.  I would just start DEMANDING these test be ran or switch doctors until you find one that will take you seriously.  This is something that needs to be treated ASAP.

Good luck and hope this helps. 

chairhead28
by Silver Member on May. 24, 2009 at 3:14 PM


Quoting momma2-3boys:

Go back and get seen by a Rheumatologist and demand testing.  They are the ones that will help you.  I would just start DEMANDING these test be ran or switch doctors until you find one that will take you seriously.  This is something that needs to be treated ASAP.

Good luck and hope this helps. 

My mom's good friend has Lupus as well and she is going to give my mother the name of her doctor that diagnosed her. I'm waiting on that call actually so I can call tomorrow first thing in the morning.

I'm just wanting to hear other people's stories if they have Lupus to 1) know that I'm not alone and 2) know that I'm not freaking crazy. I need to know that this pain is not pain that people feel every single day and are "normal". I can't give my son a bath at night because I can't bend over the bathtub because I hurt so much afterwards. It's just so frustrating.



                   

momma2-3boys
by on May. 24, 2009 at 3:20 PM


Quoting chairhead28:


Quoting momma2-3boys:

Go back and get seen by a Rheumatologist and demand testing.  They are the ones that will help you.  I would just start DEMANDING these test be ran or switch doctors until you find one that will take you seriously.  This is something that needs to be treated ASAP.

Good luck and hope this helps. 

My mom's good friend has Lupus as well and she is going to give my mother the name of her doctor that diagnosed her. I'm waiting on that call actually so I can call tomorrow first thing in the morning.

I'm just wanting to hear other people's stories if they have Lupus to 1) know that I'm not alone and 2) know that I'm not freaking crazy. I need to know that this pain is not pain that people feel every single day and are "normal". I can't give my son a bath at night because I can't bend over the bathtub because I hurt so much afterwards. It's just so frustrating.

Well I want to say good for you for being proactive and not taking the answers they give you just because.  The docs office will probably not be open tommorow because of Memorial Day BUT call first thing Tuesday morning BEGGING for the first available appointment they have available.

I have Rhuematoid Arthritis since I was 6 so I know the pain and NO it is not normal at all and something that you shouldnt have to go through untreated.  There are so many options out there to help you BUT first you need to be diagnosed. 

I am sorry for what you are going through and can only imagine the pain.  Keep me updated please.

chairhead28
by Silver Member on May. 24, 2009 at 3:42 PM


Quoting momma2-3boys:

 

Well I want to say good for you for being proactive and not taking the answers they give you just because.  The docs office will probably not be open tommorow because of Memorial Day BUT call first thing Tuesday morning BEGGING for the first available appointment they have available.

I have Rhuematoid Arthritis since I was 6 so I know the pain and NO it is not normal at all and something that you shouldnt have to go through untreated.  There are so many options out there to help you BUT first you need to be diagnosed. 

I am sorry for what you are going through and can only imagine the pain.  Keep me updated please.

For a while I thought I had RA as well because of the swelling in my joints that happen so often. It has to either be some type of arthirtis or auto-immune. I am just so sick of people telling me I'm crazy or giving me a catch all diagnosis (fibromyalgia) because they don't want to deal with me anymore.

I'm so sorry that you have RA. It must be so painful.

I will keep you posted. Thank you for actually responding.


        




 




                      

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