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hello to all!
my name is irina, i'm from Romania and i am 18 years old.
since i was 14 i have the diagnosis of livedo reticularis. after several examinations and repeated blood tests, the doctors have decided that i don't have lupus and no other autoimmune diseases. so the cause is unknown. apparently i'm very healthy...
i know i'm not really in the right place and that there are many people who have greater problems than mine, but i don't know what to do. i'm very depressed and very scared and sometimes i think my life is over. i really need some kind of support. everyone i know gets scared when they see my hands or my feet. it's also very frustrating that every summer i have to wear long sleeves, can't wear sandals, short pants etcetera.
i'm trying to tell myseft that it doesn't matter, that i have other great qualities, that the aspect is just a small part of my life, but everytime i look at my hands i start crying, and i can cry for hours, nothing can't stop me....
please help me!
04-25-2006, 06:30 PM
I'm so sorry to hear of your pain and struggles. I'm new to Lupus myself and just 25 years old, so I know a little of what you are going through. I don't know what livedo reticularis is, but any disease is hard to deal with. I go through times when I think, "Why me?" But then I try to force those negative thoughts out of my head by thinking things like, "It could be worse. I could have cancer."
I also know what you mean when you say you cry all the time. It seems like several times a day I cry out of shear frustration about how hard the simplist things are to do. Like tying my son's shoes or getting dressed. Or sometimes I cry for no reason at all.
Please know that you are not alone. There are people out there who understand what it means to live with a chronic disease. People like us on this site have to reach out to each other. Because sometimes it just helps to know you aren't the only one out there going through it.
I'm sorry to preach, but please know that you are of GREAT worth. Take care and I hope that you have a better day tomorrow :lol:
thank you for your support.
here are some links that will help you know more about livedo.
i researched more about lupus, and now i'm feeling very lucky that i don't have it. and i should feel happy that nothing hurts and that i don't have pains... right?
but i can't ask myself: why things like this happen... not just to me, but to anyone here... it's a terrible thing... and why does God alow this? why so many good people have to live and fight with this horrible disease?
so many questions i can't answer...
i've made a mistake in the previous post. i said that 4 years ago i've been diagnosed with livedo. that's not true, i was actually diagnosed 8 months ago. for 3 years nobody knew what's wrong with me. and back then i had hope that when they knew, they would be able to give a medicine or something that will cure me... but now i know there is nothing....
04-26-2006, 10:32 AM
I went to those websites and I am so sorry that you are suffering from such a physically obvious disease. In a lot of ways having something that others can physically see is harder. Emotionally I think it would be tough. But sometimes I wish there was something others can physically SEE that was wrong with me. I'm actually GLAD sometimes when my hands and feet swell so that when I go in to the doctor, I can say, "See?"
Unfortunately, part of being human and alive is suffering and trying to endure all that is thrown your way. I do believe that God allows us to get sick, but then just doesn't abandon us. He sends others our way to help us through the hard times. So grab on to every supportive person you can find and don't be afraid to say, "Hey, I need help," or "I just need someone to listen." That's the hardest part of all this for me. I'm a very independent, responsible person and asking others for help is so hard.
Hang in there, Irina.
04-27-2006, 04:35 AM
I have a very dear friend who suffers from livedo reticularis as a result of dermatomyositis. Like you, she suffers with her skin condition but she also suffers with muscle weakness. Her skin condition is worsened because of both diseases.
Both conditions are called "sister diseases" with Lupus because of their immunological aspects. So, you are in the right place here for several reasons. One of the most important reasons being that here is a place where you can get comfort, understanding, information and support.
I hope that you visit us often, there is always someone here who is willing to listen and help if they can!
Peace and Blessings
i fell much better knowing that i am not alone.
i know livedo is related to lupus, my doctors have tested me several times for lupus and the results were negative.
i forgot to tell you that i had hepatitis type b and cytomegalovirus, and i have auto - immunised of both! that's odd... and the doctors said that the livedo is the result of that, but they don't really know how that happened... do you have a clue? :)
i know it sounds funny, but everyone tells me i'm healthy. and as far as i don't suffer any physical pain, my livedo is nothing. that's why my mom and i make jokes, because it's not a disease, it's a syndrome! :)
i do take some medicines: vitamin c and detralex ( diosminum 450mg, hesperidinum 50 mg) but i think they are useless...
does anyone know how vasoconstrictors are related to my "syndrome" ?
in particular, i want to know about coffee. because sometimes i really can't do anything without drinking a cup of coffee and i wanted to know if it affects that bad my blood vessels.
keep in touch and thank you!
04-28-2006, 11:44 AM
Although CMV infection itself is usually harmless, it can cause severe disease in persons with an already weakened immune system. It is a common virus that infects most people worldwide, a healthy immune system can hold the virus in check. However, if a person's immune system is seriously weakened in any way, the virus can become active and cause CMV disease. Cytomegalovirus is a member of the herpesvirus family, these viruses all share the ability to remain alive, but dormant, in the body for life. Symptoms can include lung problems, poor weight gain, swollen glands, rash, liver problems, and blood problems. People with weakened immune systems can have more serious, potentially life-threatening illnesses, with fever, pneumonia, liver infection, and anemia. Illnesses can last for weeks or months and can be fatal if not treated.
Although cytomegalovirus (CMV) disease is a severe complication among immunocompromised patients, its affects on the skin are not seen frequently, but there are reported cases of CMV and livedo reticularis, cutaneous vaculitis with papules, and nodules. Biopsy specimens of the papule and results of subsequent studies supported a diagnosis of cytomegalovirus (CMV) infection. I guess that it doesn't happen very often, but it does happen.
I hope that I've answered you question.
Peace and Blessings
the thing is that i don't even know how i got the infection. honestly, the doctors here are so stupid. the first doctor i went said it was a rash :)
and the others were surprised to find that i have hepatitis type b and cytomegalovirus anti-bodies, no viruses found. that's why i said it's odd.
anyway, even though sometimes i'm very sad, i'm trying to deal with it and go on with my life.
please excuse my bad english.
keep in touch!
05-04-2006, 02:01 AM
Your English is fine. I know how difficult it can be to try to maintain a somewhat normal lifestyle while dealing with a chronic illness. It is absolutely sad because it is a loss....a loss of our perfect health; a loss that we will not get back.
We are here for you whenever you feel sad and need someone who undertsand. Remember, you are not alone :D
Peace and Blessings
i'm ok, but now, my thoughts are: what if i will get lupus? what if my future tests will turn out positive? what would i do then? will i be able to handle it?
and what's worse is that lately, my joints clack pretty bad. i don't want to be valetudinarian and i'm trying not to freak out, but, until i go to the doctor, can you tell me?