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hi! confused and anxious. dr. thinks lupus.

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Posted 9/25/2008 8:44 PM (GMT 0)
hi all,
i am a 33 yr. old mom of 2. ever since i was young, i have been plagued with fatigue and pain and a host of non-specific infections and of course depression! when i was 8 it was suspected I had juvenile arthritis (hip pain and trouble walking). at 14 i needed knee surgery for bone chips due to "lack of blood flow to my bones". I have been treated for Lyme's disease 3 times (grew up in Old Lyme CT) although my lyme titer's never came up positive. (fevers, achy joints etc). I have also suffered a host of other issues including fevers, joint pains, killer fatigue, GI issues, hypothyroidism (post-partum), and so many little colds turning into pneumonia or strep, even stuff like cat scratch fever (ended up septic) and an a supposed PID (104 fever and awful pain everywhere) from them trying to place an IUD (which made no sense to anyone). 2 summers ago i got this awful attack of 'acne'. it was over my cheeks and nose, and it was awful and scaly and i have never seen anything like it besides a really awful case of cradle cap. since then i had felt ok until the birth of my 2nd son in 1/08. since then i have been suffering horribly. I assumed it was hypothyroidism, but i have the worst pain in my feet, knees, hips, and especially my hands-to the point i cannot even sleep and clothes feel like thy are burning my skin. Finally saw our new family GP. He didn't have my history, but as i told him what was going on....he said 2 things "popped" in his mind for my cluster of symptoms, Lupus and RA. he mentioned my cold cold hands and my facial rash (i had gotten some sun even though I know better....being in the sun for more than 15 minutes makes my skin feel like its burning off). . He called today and said my thyroid is a bit off, so we upped levoxyl to 150 mcg. He said to follow up with him in 6 weeks either way, and if i still didn't feel up to par we'd run the battery of tests. My question is.....does this sound familiar to any of you? Would you recommend i try and follow up sooner? i am so so tired, and i feel awful that i have trouble keeping up with my boys. I know my husband secretly thinks i am a hypochondriac and i feel like i am so lazy since i can sleep a full 11 hours and still need to nap with my son in the afternoon.

any advice or personal stories are welcome,
thanks,
krista
Posted 9/25/2008 10:04 PM (GMT 0)
Hi Krista,

Welcome to this wonderful forum! The people on here are great and it helps so much to know that you are not alone.

Unfortunately, yes, your story sounds all too familiar. I know that many of the people on this board have taken years to be formally diagnosed while enduring many of the symptoms that you describe. Sadly, lupus seems to be an elusive diagnosis - the symptoms mimic so many other things that many doctors are hesitant to diagnose lupus. While I can understand that a doctor would want to rule out everything else before diagnosing lupus, it can be extremely frustrating!

Because of the many different symptoms, it is not uncommon to hear "it's all in your head" or "you must be exaggerating the symptoms" or (my all time favorite) "but you don't look sick". It's especially difficult when you need extra support from family members and they just don't seem to understand. Perhaps your husband could go into the office with you at your next doctor visit and ask some questions. This would be especially helpful if you are sent to a rheumatologist. That is the specialist that treats lupus and other auto-immune illnesses. Your husband undoubtedly wants to help, but doesn't know what he should do.

As far as my story, I saw 3 rheumys, 2 allergists, and 2 infectious disease doctors before finally being diagnosed with lupus. It took over 6 years to get the diagnosis. I've been on plaquenil since 2003, with prednisone added anytime I begin to flare. My biggest problem as been my overwhelming allergic response to almost everything - foods, drugs, environmental factors, etc. I am very vigilant about not exposing myself to any known triggers (the trigger list just keeps getting longer).

I know others will chime in to add their welcomes. Hope you feel better!
Posted 9/25/2008 10:56 PM (GMT 0)
Hi Fran,
Thanks for replying. 6 years huh? I guess i should feel lucky someone is willing to check this all out in just six weeks!!! WOW! I have never had anyone tell me any of those things, like your docs did. That is horrible and awful!!!! I am more of the 'whatever i hate doctor's type'. SO i guess I am really lucky!!! This Dr. listened to me when i said i used to do triathlons, and run 5x a week, plus work, plus finish college, plus whatever i could fit in between what i now will consider "flareups". I cried when i recounted how horrible i feel now, how tired and vacant i am in my own life, how i can't keep up physically with being a mother and maintaining a household now. How trapped in a rictus of pain I am. How sad and guilty this makes me. I think i would have hit him if he has suggested it's all in my head. LOL...ok maybe not...I find i am very angry lately. I hate being out of control, but this pain is making me quite on edge. Plus, my sister who has fibromyalgia......and is now addicted to heroin because they started her on ultram at 11....well she went to jail yesterday. Um, emotional trigger anyone? I havent taken painkillers since I had carpal tunnel surgery 13 years ago.
thanks again,
krista
Posted 9/26/2008 3:02 AM (GMT 0)
Hi krista and welcome.  I'm sorry that you have been battling health problems for so long.  SO much of your story sounds familiar.....things that either I have gone through or things that I've heard other people here describe about their experiences.  When I first started reading about lupus, I read that a lot of women experience a bad flare after they give birth to a child, just like what you experienced. I can totally relate to the heartbreaking changes in your life.  I used to be an avid runner who ran 6 days a week and entered races, including a half marathon every year.  I'm a mom of 2 kids also and the the "mom guilt" I sometimes get is awful.  The guilt was pretty much a constant for me when I first got sick, but over time I've adjusted some things in my life and my personal guilt trips occur less frequently now, so there is hope.  I think there is a lot of grief involved in dealing with lupus because of the loss of the life that existed before getting sick. One thing you have going for you is a good doctor who listened to you.  I hope he does run the tests to help figure out what might be going on.  I'm glad you joined us - it's nice to have someplace to come where people can really relate to what it is like to live with a chronic illness.  Ask any questions you have or come and vent if you are having a bad day.  Here's a link to a great resource for people who are chronically ill - click on the link and then read "The Spoon Theory"  http://butyoudontlooksick.com
Posted 9/26/2008 6:25 AM (GMT 0)
Welcome to the forum Krista!! If you see a rash again, make sure to get pictures of it. Soars in your mouth? take picture. Ask you doctor to refer you to a rheumatologist. But find a rheumy who specializes in, or frequently treats Lupus. There is a link at the end of my signature for a Lupus Chapter Locator. If you find your local chapter, they can give you a referral list. I highly recommend choosing a rheumatologist from that list. I see you got some good info from other members!! I'm SO sorry you are dealing with all of this while you are trying to enjoy your youngsters. I can see why the doctor wants a bit of time to see if the thyroid med increase will help . . . but yikes! The rheumy appointment will probably have a couple month wait for your first appointment so you might think about getting that lined up right away. (you could always cancel if you are feeling better). I hope you'll keep us posted!! Blessings!
Posted 9/26/2008 2:04 PM (GMT 0)
Thank You, Thank You, Thank You!!!!
I have felt so alone for so long. I am the medically stoic (dork) who waited until i hadn't had a BM in almost 2 weeks before I even called my obgyn, since they said constipation is common in pregnancy....of course they rushed me to the hospital. LOL. good times. It's so wonderful to come to a place and finally vent my feelings and my complaints and feel validated. I didn't even know what lupus was until this week. I am so glad to find this forum, and to be welcomed so warmly. Hugs for all!!!! I will be sticking around for awhile!
krista
Posted 9/27/2008 1:02 AM (GMT 0)
Krista, I'm glad you found us too. I don't know what I would have done without the support of the wonderful people here. It's such a relief to be among people who really understand what you are going through both emotionally and physically.
Posted 9/28/2008 1:31 AM (GMT 0)
Krista, this is a wonderful place. Sometime when I am feeling better I may interact more again. I had my son in May caught a virus in July and am now in a tailspin health wise. I spent around 15 years being told it was all in my head but when I found the right doctor things moved fast. I really hope your doctor will find out what is wrong ASAP and send you to a good rheumy if you need one. Mine has saved my life litterally several times now and I only found her in 2005.
Posted 9/28/2008 1:46 AM (GMT 0)
Hi Krista,

I suppose most of us have been accused of being hypochondriacs prior to being diagnosed, and some even afterwards. Some families are more supportive than others. A couple of years ago someone started a thread here about lupus fatigue and we all piped up and wrote a lot about the way we felt and the difference between normal fatigue and what happens to us lupies. I was having trouble getting across to my hubby what I was dealing with so I printed off that thread, and it was pages. After he read it he felt awful that he had not shown me more support than he had. I think that the post that really got to him was the one that said "my fatigue is so severe that if I drop a pencil on the floor, I might stare at it for 30 minutes before I get up the energy to reach down and pick it up. That's exactly where I was at the time, but he needed to be painted a better picture than I was able to paint for him. (I was probably too tired to try to explain it & that's no kidding).

I also know that some folks thought I was depressed but didn't mention it to me at the time.

If you're tired, the best thing you can do for your body is rest. Don't let guilt or worry interfere with what your body needs. But I know just how hard this is because I've been there. You'll start second guessing yourself and wondering if they're right, especially because these AI diseases are so hard to diagnose, but hang in there. You'll probably feel better after spending some time here and getting to know the folks on this forum. Our stories are all so similar.

I had a childhood similar to yours and my rheumy has told me that she thinks I've had lupus all my life (and I'm 59) but my symptoms were vague and no one really listened to me. I was only dx'd three years ago after my worst flare. So I urge you to listen to your body and be kind to yourself. Others will follow if you remain constant and try to keep your mood steady and positive. I get much more help and support when I act positive than when I start to complain. I'm fortunate though, because prednisone doesn't affect my moods.

I'm glad you found the forum & look forward to getting to know you better.

Pat
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