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Thread: I'm back...still struggling :'(

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    Default I'm back...still struggling :'(

    Hi everyone,

    Not sure if anyone remembers me...it's been a long time since I've posted. Unfortunately..I haven't gotten too far with being diagnosed...with lupus...or anything for that matter. Still having/have developed the following sx: joint pain, muscle pain, severe fatigue, night sweats, constant low grade fever, frequent headaches, sore mouth and tongue with occasional blisters, hair loss, a rash/redness to my palms and easy bruising. All my symptoms started shortly after having my son, who will be 3 in October. I don't have the butterfly rash. I don't develop rashes in the sun,etc....but I do get very sick just from being in the sun a short time...I get a bad headache, body aches, nausea and severe fatigue. Have been hooked up with a great rheumy..she has been trialing meds,etc.

    Last November, I developed some symptoms that took me on a side road for awhile. I started having blood/mucous in my stools...that...combined with all the above symptoms...and some right chronic side pain. We really thought we were on to something....it was also discovered around that same time...that I was iron and vitamin b12 deficient. All made perfect sence...in must be CROHN'S. Well...many x-rays, ct scans and 2 colonoscopies later........I apparently have IBS and hemorrhoids....just what I wanted to hear!!!

    Earlier this year....I did so a short little course of prednisone. It was prescribed by my pcp because I had called him in tears and in a bad flare. The prednisone worked like a dream....I was feeling much, much better.....until...I had to stop it so it wouldn't "hide" anything on the colonoscopy.

    So...here I am again....with no diagnosis. My rheumy recently repeated my labs again....and just like the previous 2 times....my ANA is negative. On a side note...they have been checking my CRP and it started at 8.6, then was 13.3 and now it is up to 14.2. Normal range at my lab is anything less than 3. So...I obviously have some inflammation going on.....it sounds sad..but I was blessed to have it show something...I'm really starting to feel like I"m going crazy!

    So....my rheumy doesn't know what to think....she is trying me on Azulfidine to see if it will at least help with some of the joint pain. If it doesn't work...she said the next step is Methotrexate or a trip to Mayo in Rochester, MN...to see a rheumy there.

    I am just getting so depressed and am starting to lose my ability to cope. Trying to work full time, taking care of Cooper,etc,etc. I've gained a lot of weight because I haven't been able to exercise the way I would like to...and end up eating too much...because it's comforting.

    The best way to describe how I feel is..(and this is what I tell people that don't seem to understand)...."imagine running a marathon, in 98 degree heat, with the flu"...that's the best way I can describe the agonizing aches and pains and the severe fatigue. Luckily I have a very understanding PCP who is ok with prescribing me Vicodin....I don't know that I could get out of bed some days without it. Enough rambling...obviously you all know too well how this stuff feels.

    So anywho...just wanted to re-introduce myself and would like to get re-involved with everyone here if that's alright. Thanks for listening!

  2. #2
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    Wink

    Since I've only been here since December; I don't think I've seen a post by you. But welcome back!

    I know we all tend to pick up on our symptoms, so I ask if you had your thyroid levels checked hashimoto's disease is also an AI disease. I have no thyroid so I'm hypo and gain weight so easy it's too funny. The digestive problems are also familiar to me. I need to go see the gastro guy for a colonascopy ( dang I hate those. I know he is also going to want to go down my throat too!)

    Have patience. I suffered not knowing for 30 years. Can't explain the relief I've felt since December.

    I know it is hard to go through all the tests. I hope you have good insurance. When I work in accounting for doctors I saw the mark up on tests. But I do not really need to go there.

    Have patience and go with the flow, stress not if possible,

    Nonna

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    Default

    Hi! It's nice to see you back. I don't think we have met, I am Sandy and I am sorry to hear that things right now are bad. It's good that you came back on here b/c I feel like this little family is very healthy to my spirits when I am down and I hope you will find that comfort too.

    Nonna - I was also thinking thyroid too, but I know I am a little thyroid sensative right now.

    Triagnurse - I started a thread in this page of the forum with thyroid links. Did your doc draw your free T3 & T4 thyroid levels? If you look in my thread, you will find a lot of info about thyroid symptoms. Many of them sound like your symptoms. Perhaps this is another avenue to explore with your rheumy. Perhaps, like so many of us, you are having overlapping symptoms right now.

    Please keep us posted on what happens with you.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Hi guys...

    Sorry I didn't get back to you sooner...that seems to be the norm lately..yeek. Anyways...yes..they have done thyroid testing at least 2 or possibly 3 different times and everything is textbook perfect. I've been in contact with my rheumy because my symptoms just seem to be getting worse and worse. She is referring me to a rheumy at Mayo Clinic in Rochester. I'm really hoping they can help me out. It's nice having Mayo so close..(I'm in western Wisconsin). Ok...thanks for the thoughts..I really appreciate it!

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    triagenurse

    for years my GP told me I was in the normal range. I went to an Endocrinologist and told him my story. He tripled my dosage of synthroid. I guess what I'm trying to say is get a referral to an Endo and have him test you. normal is not always normal with us.

    nonna

    patience is a virtue; that we all need to practice


    Glad you're near MAYO
    my son lives near Milwaukee

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    Hi Triagenurse,
    Welcome back! I remember seeing your posts. I'm glad that you are going to the Mayo Clinic. I've heard a lot of good reports about them. Many people seem to deal with being sero-negative. It's just so frustrating when you KNOW that you are having the symptoms, but the docs won't believe you because of your lab tests. It is a real relief when we can find one who will treat the symptoms, and then worry about the lab tests.
    I think that if any docs can figure it all out for you, it should be the Mayo.
    Good luck, and keep us informed. You are always welcome here.
    Hugs,
    Marla

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    Thanks Marla and everyone,

    Yes..I am hoping they can figure something out at Mayo! My husband keeps saying "who cares about the diagnosis, as long as they can give you something that works"....I agree with that to some extent but seriously....I want a name...there has to be something wrong and for my own sanity..I want to know what it is. It's been hot up here in Wisconsin the past few days and the heat and sun are killing me....after being outside, just long enough to walk to my car...I develop this blotchy rash on my arms, chest and face...not sure if it's a lupus type thing or related to the meds I'm on/photosensitivity? It's quite strange and the rash always has a burn or tinglling feeling to it? I can't stand the heat but can't stand the air conditioning either....the coldness of it makes my joints ache terribly. Anyways..thanks again all and I'll keep you updated.

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    Just to say welcome back and i too have the weird rashes on arms,back of legs at the bottom,chest and slight facial...mine is pink on face and like a pigmentation weird looking rash....its always there lately as we have had it hot n sunny so ive been sitting under the brolly in the garden with hight factor sunscreen on.Ive actually gone brown lol...its camoflaged the arm rash a bit....but i feel a bit rough lol.I also agree.....i too need the name.....then i feel ''bellieved''!!But yes your husband is right too but a name can change everything...so i hear ya.
    Love n hugs
    Amanda.xxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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