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Thread: Sick and tired of being sick and tired

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    Cool Sick and tired of being sick and tired

    Hello, I am 37 and am going insane trying to get DR's to listen to me! Not Dx'ed... ANA shows traces( whatever that means)
    When I was prego 19 years ago I had trouble with my legs and would fall to all 4's! (only weigh 120)
    I always have random pain that I would go to the dr and handed pain pills and no true reason!
    In 2003 The rash on and over my nose was worse than it had ever been! (Was getting married = major stress)
    I was looking for something to help clear it and even looked on the net.....I had seen that Lupus can cause the rash that looked like mine....but if I had it the Dr would have known...RIGHT! LOL
    At random I go from the on the go go go neat freak to wore out, lazy, wanting to sleep a week freak!
    I have been to Dr about my heart
    I shed worse than my dog & sores on scalp....I use to have my hair thinned now considering extentions its so thin!
    headaches that start at nap of neck and work up
    rash on sides of my nose ...with stress it flares.....Everyone can tell my stress level by my nose(my son is in AF going to UK so ITS REALLY BAD)
    welts....with stress or sun
    hives....with stress or sun
    bug bite like bumps.....that inch then I scratch they Burn ODD ...with the sun
    bruises when I had done nothing to be covered with the bruises....looked like I had been in a fight and lost!
    arms and legs go to sleep with out me alot LOL
    Joint pain....like its out of socket deep bad pain with real tears
    Muscle pain......like I run accross the state kinda pain
    sick to my tummy alot
    gained 40 pounds in 3 years.....I weighed 128 being 9months prego 14 years ago, now 178 pounds
    feel like I have the cold or flu alot....and instead of fever mine drops below normal yesterday went as low 94.3 went to Dr she said she sees nothing wrong with me! ( Only if we could trade places a day)
    My x husband said I have alzheimers....I think I do too, Last year I wrote my daughter a note to ride the bus home with a friend....the next day was raising H*ll when I could not find her even called the police just for them to show me the letter I wrote givving her permission. So now the school knows I have lost my mind! LOL
    I could go in the ginus book of world record for sneezing no joke....like 15-20 sneezes in a row 200-300 in a day
    Galbladder trouble at 20 (Was told very odd)
    a long with 10 days in Hosp with pancreatitis at 21
    And now my rim Dr wants to rule everything else out!
    I think when I go next Tuesday I will tell him just to humor me by treating me for lupus while he tries to rule Lupus Out! LOL
    The last 3 years have been very stressful
    I Divorced, 2 kids graduating & moving out, son joining Airforce and going to be in Uk for 3 years raising my 2 ADHD nephews!
    So with all the stress my health and body sooooo feels it! I do good to get out of bed and get to work daily....nuch less go home cook clean and do homework...by the time I get home all I wanna do is go to bed! So at times it is leaving my Birth baby who is 14 left to cook and clean after the 2 boys!
    I want me back....I am sure my children do too! I am sick and tired of feeling sick and tired

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    hi tonyarenee,
    welcome to our cyber family.
    having a diagnosis is not a prerequisite for being here.
    there is a few members who are also trying to get a diagnosis.

    and a few more still sorting out just what they really have.
    there is unfortunatelly 63 different auto immune disorders.
    (we have a thread about them all)
    and many of the symptoms overlap.

    can i ask?
    are you seeing a rhuematologist?
    this doctor specialises in this type of problem.

    also may i suggest that you write down a list of your symptoms.
    memory confusion is normal for many of the auto immune disorders.
    it is often refered to as "fog".

    again welcome. and please keep us informed on your diagnosis.

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    Tonyarenee (10-26-2011)

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    Hi Steve,
    I started seeing a rhuematolgist last month I go back to him next Tuesday....He had done my second ANA! He Called me last week to see how I was doing, and told me my ANA had traces and was asking me about my rashes and let me know he is on Vacation this week! As you can see by my profile pic....my nose rash is flared! I think each morning is a little worse even with the Desonide lotion! (I See the dermi again next Tuesday also) I am hoping next Tue. These Drs come up with something to help me feel better, cause this week is the worse week so far! I could not go to sleep for hurting last nite was up till 1:30 am then awake at 5am had to take meds and lay in bed almost a hour so I can roll out of bed! I wish I could have stayed in bed, I am a single parent with no other income so I have to work regardless of how I feel!
    I take pics of everything and write EVERYTHING in my diary everyday and keep it all stored on my laptop and will be showing it to the Dr's on Tuesday! I feel I have a great set of Dr's now Just hoping they figure everything out soon! My back about has me in tears today and the pain is coming around to my side, I feel like my ancles are crushed and do not want to put any weight on them! These pains I am having today is worse than child birth or Kidney stones!

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    yep I understand I am sick and tried of everything. Welcome to the group ;-)
    Diagnosed with SLE Lupus May 2nd 2011. I am taken Plaquenil, Pain Killers, muscle relaxers.

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    Well I went to the Dr's This last Tuesaday! Dermi said they could do a skin biop of the rash on my nose, but it would scar so she would wait to see what the Rheumi says! Went to the Rheumatologist he wanted to know what the dermi said on all my rashes LOL Can one Dr not make a dissicion on their own????
    I have a possitive ANA, my white blood count is low, my amylase is very low! My temp is even running very low 94.4- 97.1! They give me two peanut butter shots in both hips a bag full of meds and some info on plaquenil but not the medicine he said he would call it in and send me on my way! My problem is the brain fog I dont remember half of what they say! I know the Rheumi said something about he would call in the medicine after or if I call him not sure when he was telling me to call him, heck I could not even remember when he told me to come back by the time I got over at the checkout in his office! I know the Dr said I have a possitive ANA that he is pretty sure this is a molar rash and has to rule everything else out!
    I think I need to start takin notes at the DR so I can remember EVERYTHING they say!
    My question is what is the plaquenil for and does it help?
    These last few months I am doing good to get out of bed and to work most of the time late, the brain fog is interfering with my job.
    I have been at my job 10 years and now I am afraid of being fired!

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    hi and welcome plaQUENIL IS A DRUG THAT MOST OF US USE FOR LUPUS OR OTHER AUTO IMMUNE DISORDERS IT IS HELPS TO GET YOUR SYMPTOMS UNDER CONTROL MY SUGGESTION TO YOU WOULD BE TO WRITE DOWN ALL YOUR QUESTIONS BEFORE SEEING RHEUMI AS WELL AS SYMPTOMS SO YOUR BRAIN FOG DOES NOT AFFECT YOU WHEN YOU GET THERE ALSO KEEP A WHITE BOARD AT HOME OR DIARY WITH ALL YOUR IMPORTANT THINGS SO YOU DO NOT FORGET THAT IS WHAT MOST OF US DO. I AM ON PREDNISONE, AND PLAQUENIL, MEXOTREXATE FOR MY LUPUS AGAIN WELCOME I AM FROM SYDNEY AUSTRALIA

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    Tonyarenee (10-26-2011)

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    Hi there! Welcome to the world of doctors when you have brain fog! Yes, write everything down!!! It is very important.

    As for the plaquenil. Yes, it is a very good drug for most of us. It is an antimalarial and it seems to work on Lupus. It does, however, take 4-6 months to really work. It actually works so slowly that you don't realize that it is working until you wake up one day and think "wow! XYZ hasn't happened to me in a long time". Between that and a low dose of steroids many Lupus patients can get back to feeling pretty well. It isn't a miracle drug but it is a first line defense that does help so many!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Thanks! Hopefully it will help me! I am telling ya here lately I am feeling like I am really going crazy! I went to Micky D's ordered food... paid for it ....then passed the window and left without the sweet tea or food! LOL
    I told the Dr's The Lupus is making me loose my mind! I am making soooo many stupid mistakes at work I am afraid of loosing my job! Not to mention late everyday cause its all I can do to make myself come to work! I am feeling like I am a one legged dog in the ocean with kittens on my back....trying to stay afloat.....I have to keep the pain pills and muscle relaxers by my and wait for them to kick in just to roll out of bed....I hate this! This Brain fog makes me stupid enough and the pills make me a walking hazzard LOL I wish I could just get back to being me!
    My 13 year old wants me to take her to haunted houses this weekend, with my legs and feet feeling like this there is no way I can do all that walking! How do you explain this to a 13 year old....I have not told her I probably have Lupus, I am the mother I am supposta worry about her not her worry about me!
    Stress is my weakness, with my weakness makes me stressed!
    I keep tryin to tell God my plate is over loaded already, I am on a diet and we can skip the extra servings! LOL

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    i understand how you feel i have sixteen year old she was 12 when i was first diagnosed and it can be hard for them to understand but with time they will my daughter now accepts my limitations and understands that there are some things i just cannot do and some things just take me longer we all wish we could go back but it is not possible hopefully your medication will kick in and it will help you feel more better here is a big hug from me just take one day at a time.

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    children can be an inspiration.... i you let them know enough information.
    i have a boy 12 and a girl 13.
    they both knew of my problems for years.
    when i was diagnosed 3 years ago, they were scared of loosing me.
    as they have learnt more...... they are quick to accept what i cannot do.
    they are my strongest motivation and encouragers.

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