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  1. #1
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    Default New member

    Hello everyone,

    I am 32 year old female and I have been feeling sick for over a year and a half now. Every weekend I would be tired or have flu-like symptoms. My husband made me go to the doctor February (2008). They ran blood tests and I got a positive ANA-speckled. My initial diagnosis was "Lupus Like syndrome". I was on prednisone that wasn't helpful made me more vulnerable to infections. I have now been a Plaquenil for 4 months. I am seeing a Rheumatologist who is not too concerned and says I have an "undifferentiated connective tissue disorder". My worst symptom is the fatigue, some days I can't move all I want to do is sleep. I don't have the major symptoms, such as the rash or severe joint pain. I do have the low grade fevers, joints hurt some (i.e. my hips hurt a lot at night I no longer can tolerate fetal position, have to sleep on back) my knees, wrist, and elbows crack and pop.
    I am starting to get frustrated with the system. I feel like I'm a leper no doctor wants to deal with it, anytime I have a new symptom they refer me somewhere else. I have 4 different appointments in the future (neurologist, sleep doctor, GYN, etc...) No one wants to definitively tell me yes or no and none of the medications help.

    I had a breakdown last week and my husband told me he thinks I may depressed, I won't share with him too much as I don't want to burden him. My parents pray for me and say I will be fine, I don't have lupus it's something else. I'm frankly to the point I don't care what it is I just want to be "normal" again.

    I felt sad and hopeless until I read these postings. I sometimes want to cancel all the appointments I'm sick of being a "pin cushion" but I guess I have to be strong and maybe I won't have it and maybe I will and it will be manageable.

    Just in reading 5-6 postings I don't feel quite as hopeless as I did 45 minutes ago. Thank you!

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    Default hi

    Hi and welcome and so glad you found us. We all understand the ''i want to be normal again feeling'' and the very lows we all go through. Also, the ''i want a name for my ailments'' feelings.

    You are amongst people here who fully understand the aches, pains and misery we can grow through. I understand the pin cushion feelings....at christmas i had 10 in my mouth.....OUCH..but it numbed the pain so i didnt mind .(Im scared of the Dentist lol....i'll explain another time).

    I also understand the fatigue......oh my......how i long to sleep and stay in bed some days it can be awful and make you feel so depressed. I hope you begin to feel a little better now you found us. WE'll try our best to cheer you up and many people have much more knowledge than me so will be able to advise you on meds and general help.

    Hope to chat to you soon.
    Love
    Angel.xxxx

  3. #3
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    Gentle hugs to ya and welcome Spanglishqueen

    I'm not diagnosed either. I've had mixed results from my ANA tests. I do have the rashes and joint envolvement, sensitivity to sunlight and a few other goodies.

    I understand your frustration and not telling your husband everything. Mine tends to want to "fix" everything and it is not worth the frustration for either of us.

    There is no quick fix.

    You are in month 4 of taking plaquenil, be patient, it can take up to another 2 months before you will feel an effect from it. But once it kicks in...woohoo!

    I was about ready to give up when it finally kicked in.

    Now, plaquenil can make you dizzy sleepy and sick to your stomack.

    I was having problems and went to my doctor (who also takes plaquenil)

    She told me I could take both pills at the same time, right before bed with a small tub of yogart. That way I sleep through the worst of the side effects and wake up feeling like a human being.

    If you are having any of those problems, ask your doctor if it's okay for you to take your plaquenil the way I mentioned.

    Do not just do it on your own. I don't know what other medications you might be on, or how your system will react to it. Please check with your doctor first
    Oh look ... a cookie

  4. #4
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Spanglishqueen,

    I'm Rob, I'm 40 and was diagnosed with SLE five years ago. Although none of us would wish this disease on anyone, there is something very comforting about knowing and talking to others with Lupus. We have so many members here who are in the diagnosis limbo you are in, I guarantee you there are a bunch of folks here who understand.

    I have terrible joint pain, but, like you, I have had very little in the way of rashes. I've never had the butterfly rash on my face, and I have only recently gotten a rash on my ankles. Lupus symptoms are as different as each individual who is diagnosed. I too, have had some problems that I would call a mental, or nervous breakdown a few years ago. I fight depression on a day to day basis.

    I certainly hope you don't have Lupus, but you need an answer as to what's causing your symptoms. Please know that you are welcome here, and you definitely are not alone.

    Rob

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    hi spanglishqueen, and welcome to the forum.

    You have already seen how compassionate the people are in this group. And you will receive some great advice and guidance.

    welcome and share a smile today,

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    Thank you all so much for the warm welcome. :BIG:
    I think talking about it will help a lot. I am also going to try groups in my area to attend. What else can I do to educate myself. In the post I have been reading about people's C3& C4 levels. I have gone to a few sites but don't know which ones are the best any suggestions would be greatly appreciated. All I know about my blood work so far is it is ANA, 1:32 speckled and the last medical record after that said "persisting ANA" not sure how to translate that into human

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    Hello Spanglishqueen

    Just wanted to add my welcome to the bunch. Somehow I missed your posting this past weekend.

    I'm glad you decided to jump onboard and share with us. There are many caring people here to lend you understanding and empathy that is hard to find elsewhere. We've all done the 'alone' thing and felt like we shouldn't burden those we love too much. Even if the family doesn't "get it", they sure are great to have around when you need a jar opened, or need help getting out of bed. :lol:

    I've had Lupus for 27 years, diagnosed in my teens. I've managed to find myself in a remisson for 12 years now. Never give up hoping.............

    Fondly,

    Lori :P

  8. #8
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hey Spanglishqueen;
    I see that you've been greeted and cared for already by some of our members. This is the most understanding and informative group of people here :lol:
    I just wanted to add my welcome to those you've already received. I'm glad that you are here with us.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hi Spanglishqueen,
    Welcome to the site. I am wondering with your bones cracking and popping if you have been tested for Osteo-Arthritis. I have this problem too and they say it is partly due to that. I hope that you keep posting.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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