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Lupus

LookingforAnswers15

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LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

Hi,

 

Some of you probably have noticed my posts inquiring about different things. I am still waiting for my results for Lupus and RA but I really need advice and support.

 

For a week, I have unexplained horrible chest pain. Like something heavy pressing on my chest and sometimes difficult to take deep breaths. When I eat, I get pain and what it seems like a low grade fever, sometimes goose bumps, have no appetite, losing weight and hair. Even when I scratch my hair, i can get goosebumps.

 

Typing all of this makes me realize how bad all this sounds and freaks me out even more. Many of the symptoms fit lupus based on what I read.

 

Today I went to see a doctor (was not able to see the one that ran my immunology tests) and she did just basic exams, listened to my lungs, heart, and some basic blood tests. The nurse said that she was not able to get blood to flow in the vain in my left hand and it took her a long time to do it in my right arm. Looking at it now, it does not even show any blood from the needle there. On my right arm there are a few puncture wounds. This has never happened before. Doctor's conclusion regarding my blood tests - nerves and maybe a small cold. She did not even consider a possibility of being it related to autoimmune diseases since I had ANA and those other tests in February. 

 

Also, my periods have changed in the last two months but I don't want to go into details since this forum is for everyone. 

 

I said it many times before, but RIGHT NOW I AM OUT OF MY MIND. I don't want to die and I read about lupus and how it affects heart, lungs and blood vessels. Is there any hope?

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cyclinglady Grand Master
cyclinglady
Posted

Hang in there!

The nurse might not have been able to draw blood because she is lousy at doing it or perhaps you were just dehydrated! That happened to me and ER tried 8 times to stick me! (I had been vomiting for a long time.) Same for a friend who collapsed after a 100 mile bike ride. She was dehydrated.

People live with lupus. I have a friend who has it and is a teacher. I know a college kid who has had lupus since she was 12 and is managing. So, it is not a death sentence! It could be if you continue to be negative. I think Colleen, who has dealt with cancer and other autoimmune disorders besides celiac disease, has recommended relaxation CDs. You might consider going to church, joining a support group, or walking in nature. Think about helping others who might be worse off than you.

Take care!

kareng Grand Master
kareng
Posted

Dehydration, even a little bit, can make it hard to get blood.

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Thank you Kareng and Cyclinglady. Also, thank you for the ideas Cyclinglady.

 

Sorry I was not clear. I was freaking out. I noticed there are a few amazing people on this forum who also have lupus and they are able to live their  lives. I though I was prepared even if that ends up being diagnosis. However, after reading about chest and especially heart (and being it referred to as a major complication), I saw it as a helpless case, thinking if it is heart related, not much can be done. So, that is why I asked if there is any hope.

 

You are also probably right about blood test. Two nurses struggled with it. The first one gave up and the second one spent some time trying to find a way to get blood. This was not a problem even when i was severely dehydrated last year when I got admitted to the hospital last year, so it was strange. 

 

Thanks again.

bartfull Rising Star
bartfull
Posted

Not all cases of lupus involve the internal organs. Mine is just in my joints right now. If it DOES go to my liver or kidneys they have drugs to treat it. My grandmother had lupus and she lived to be 87.

 

But you know what hon? I don't think you have lupus. :) I think it is all related to gluten and you WILL start feeling better soon. Be sure to let us know when you get the results back from the blood tests and we'll take it from there. In the meantime, try to relax. You're going to be OK.  (((((HUGS)))))

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Thanks Bartie. Your message literally made me cry. Thank you for being positive for me. I really thought I prepared myself for anything until today. I was just concentrating on looking up anti-inflammatory foods. Dealing with different doctors in different countries, insurance, etc., took a toll on me. This doctor that I got to see today last time told me to - move to another country (meaning to leave her country since I am studying abroad), spent more time talking how i needed to have a primary care doctor so that I did not have to come to the hospital than she did trying to help me. She also said that I was not going to die that day when I was trying to tell her that I think this is related to autoimmune diseases. I was given some painkiller today and I asked the nurse if it was gluten-free and she told me that all pills are gluten free (which we know it is not true). She made me take it although she did not even check it. 

 

Thank you again! From your lips to God's ears.

Beth Gaw Newbie
Beth Gaw
Posted

I'm going through the same thing but I also have upper back pain! Wondering if you do to?? I have celiac disease, Raynaud's and Lupus. I collapsed the other day and had to be rushed to the ER. I had EKG, X-ray, blood work, and an MRI done. I was told it was Lupus effecting the lining of my lungs. I was put on a new treatment plan, one med is anti-inflammatory. I go back for a follow up Monday. I don't think you are being negative at all! I have learned how complex Lupus is. Good luck and I hope you get answers soon!

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LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Hi Beth, I am sorry to hear that your are going through this. It sounds very scary. What type of blood work did they do? I really do not know what to think anymore. For how long have you been diagnosed with lupus? I used to have it in my lower back sometimes but it has not happen in some time. They did EKG yesterday and said it was ok and I refused getting an x-ray because I had one done in August and it was fine but at that time I did not have pain. I was hoping blood would show what this could be and if there was any inflammation in body. Can I please ask you what your treatment plan is  ? I hope you feel better soon! Good luck on Monday!

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