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    Old 02-27-2007, 11:44 AM   #1
    sunshine8679
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    Looking for answers/advice about lupus...

    Hi Everyone,

    Iím new to this site and Iím just looking for some answers and adviceÖ

    Iím a 27 year old female and Iíve been suffering from migraines, severe constipation and recurrent female issues for as long as I can recall. I also have a facial skin disease called perioral dermatitis. Iíve always been in and out of the doctors it seems. Well recently, I went to Mexico with 30 people for a wedding and when I came home, I ended up in the hospital for a week with a parasite that completely paralyzed my digestive system. It was not a fun experience. Iím not completely sure why Iím the only one who got sick out of 30 people but the doctors just said that my immune system is a little weak. Not soon after the Mexico ordeal, I developed a red rash across my cheeks and the bridge of my nose. Sometimes itís just a faint red rash and other times itís extremely red as well as really HOT and ITCHY. My skin feels dry/tight on my face too. It comes and goes and it seems like it fits the description of the ďMalar/butterfly rashĒ of Lupus. I havenít felt 100% since I got sick from Mexico, Iím always tired and it seems like I have a headache/migraine everyday, my appetite has changed and I sometimes feel lightheaded/dizzy. Does this mean I could have Lupus? Iím not sure if this matters but my Aunt has Lupus, does it run in the family?

     
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    Old 02-28-2007, 05:18 AM   #2
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    Re: Looking for answers/advice about lupus...

    Dear Sunshine, Welcome! My understanding is that lupus isn't strictly speaking "heritable", but instead that some unknown combination of genetic predisposition PLUS environmental factors cause it. Thus some families would have a greater tendency toward lupus.

    Have you seen the "sticky posts" at the top of the thread list? The ACR criteria are used to diagnose/classify SYSTEMIC lupus. In SLE, a person meets 4 or more at some, not necessarily all at once. (For lesser types of lupus, like discoid, subacute cutaneous, etc., one can meet fewer than 4.) There's also a "sticky" on antiphospholipid syndrome, which is a clotting disorder seen in lupus or seen "standalone"; and one on diagnostic tests.

    Are you 100% sure that it was a parasite that caused your severe GI episode after your trip to Mexico? I ask because I had GI problems for decades & a real talent for being sick on vacation, especially after sun exposure. Like you, I thought I had a "weak" immune system that caused me to "get everything". Decades later, I learned that lupus is actually a very different medical model. In it, the immune system is overactive but aberrant, reacting to normal threats (viruses, bacteria, etc.) by churning out unwanted antibodies that attack one's own cells.

    GI problems, migraine-like headaches & female troubles are common in lupus, I think. These are not part of the diagnostic criteria, per se, but could add some weight to suspicions, I think. But a butterfly rash---if confirmed by a dr. to be that---is definitely one of the criteria & should spur a rheumatologist or GP to do a thorough lifetime history, standard & special bloodwork, urinalysis, etc.

    I hope you keep posting. People here have seen a wide variety of things & share freely. I'm sure others will chip in soon. Bye for now, with my best wishes, Vee

    Last edited by VeeJ; 02-28-2007 at 05:19 AM. Reason: deleted stray sentence fragment

     
    Old 02-28-2007, 06:15 AM   #3
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    Re: Looking for answers/advice about lupus...

    Thanks Veej for the helpful information. How do I search for this "sticky post" thing you are referring too?

    I think it's 100% I had a parasite after being in Mexico but then again, the whole time I was in the hospital they told me something different each day. The first day they told me I had a blockage in my intenstines, then I was told I had an ileus (which I did)...then they found a cyst on my right ovary..it was just neverending. I never been that sick but I've always had stomache problems for as far back as I can recall. I just want answers and to feel healthy again.

    I have been to my dermatologist and he suggested I get the blood test/urinalysis before he did a biopsy on my skin to test for SLE. I had the blood test yesterday so I'm just anxiously awaiting the resutls. My fear is that it will come back negative (not that I want to have SLE, I just want to know what is going on) and I won't ever figure out what is wrong and why I feel so ill all of the time. I feel like a hypocondriac. My mood has been horrendous, I'm always tired and cranky. I'm like a completely different person when I get my period as well, it's horrible. I have severe pain and my mood swings are absurd, I can't control them.

    I also forgot to mention that I've been having night sweats, boughts of dizziness, alot of sneezing and a very faint sore throat here and there. My head just feels like it's in a cloud/fog all of the time. I have trouble remembering things too.

     
    Old 02-28-2007, 09:30 AM   #4
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    Re: Looking for answers/advice about lupus...

    Hi.
    I am new to the site and am not really sure how to use it. I hope tagging on to you is ok. I have alot of life long symptoms such as being "allergic to the sun" as a child. I had to wear hats, long sleeves and pants in the sun. I was sent home from school more times then I can count with the "MEASLES" since I would rash up at recess. As an adult I have had such pain that I could barely walk. I would have jobs so I could be home by 3:00pm because that was all I could take. I was diagnosed with Fibro w/o any testing and told "it won't kill you". I lived with GI problems and chronic pain for 15 yrs but did not go to the dr. since I was treated as it was all in my head. I did a excellant job covering and hiding my suffering from employers and family. MISTAKE! I had a hysterectomy in 2005 and I have had pain, swelling,fatigue of joints and muscles since. Also I have a compressure fracture atT3 due to osteoperosis. Finally I found a female Dr (internist) and she took labs and found a positive ANA 1:80 and sent me to rhuemy. With rhuemy my ANA was 1:320 in one month. Iwas started on plaquinal in august 2006 and have a DX of differentiated connective tissue disease because she does not want to say lupus yet. The fatigue is better but the pain is up and down. I use aleve PRN. What is the most annoying is that my ribs hurt so bad I can't wear a bra or tight clothing. Sometimes I feel like I can't take a deep breath. Also I keep getting sick. Today I am home with what started as a cold last week and now I have a bad sore throat, brain fog, difficulty breathing and almost no voice. I will see the internest today.
    I was trying to read some of the postings to my husband last night but he got mad because the doctor did notsay lupus so I should not look for something I don"t have. I don't want lupus but there would be comfort in know the rules because my rhuemy said that my DX is a garbage term because "we just don't know yet.
    Sorry to run on but I have no where else to go

    Thank you for beuing there.

     
    Old 02-28-2007, 09:31 AM   #5
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    Re: Looking for answers/advice about lupus...

    Hi.
    I am new to the site and am not really sure how to use it. I hope tagging on to you is ok. I have alot of life long symptoms such as being "allergic to the sun" as a child. I had to wear hats, long sleeves and pants in the sun. I was sent home from school more times then I can count with the "MEASLES" since I would rash up at recess. As an adult I have had such pain that I could barely walk. I would have jobs so I could be home by 3:00pm because that was all I could take. I was diagnosed with Fibro w/o any testing and told "it won't kill you". I lived with GI problems and chronic pain for 15 yrs but did not go to the dr. since I was treated as it was all in my head. I did a excellant job covering and hiding my suffering from employers and family. MISTAKE! I had a hysterectomy in 2005 and I have had pain, swelling,fatigue of joints and muscles since. Also I have a compressure fracture atT3 due to osteoperosis. Finally I found a female Dr (internist) and she took labs and found a positive ANA 1:80 and sent me to rhuemy. With rhuemy my ANA was 1:320 in one month. Iwas started on plaquinal in august 2006 and have a DX of differentiated connective tissue disease because she does not want to say lupus yet. The fatigue is better but the pain is up and down. I use aleve PRN. What is the most annoying is that my ribs hurt so bad I can't wear a bra or tight clothing. Sometimes I feel like I can't take a deep breath. Also I keep getting sick. Today I am home with what started as a cold last week and now I have a bad sore throat, brain fog, difficulty breathing and almost no voice. I will see the internest today.
    I was trying to read some of the postings to my husband last night but he got mad because the doctor did notsay lupus so I should not look for something I don"t have. I don't want lupus but there would be comfort in know the rules because my rhuemy said that my DX is a garbage term because "we just don't know yet.
    Sorry to run on but I have no where else to go

    Thank you for being there.

     
    Old 02-28-2007, 10:30 AM   #6
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    Re: Looking for answers/advice about lupus...

    Hi, Sunshine. The sticky (permanent) posts are at the top of the thread (topic) list. They always sit up there high & can't be modified. Just click to open, same as you would any other topic.

    My GI problem was the opposite of yours: system in spasms, from esophagus onwards, cuasing chronic diarrhea, dehydration, malabsorption, irregular heartbeat, etc. Tests ruled out inflammatory bowel diseases (Crohn's, ulcerative colitic, etc.) Dr. Wallace writes in his lupus hardcover that this is a so-called "functional" problem, stemming from *fibromyalgia* rather than from lupus. BUT my bouts ceased after I went on Plaqeunil, so that makes wonder if it was lupus-related all along... I'll never know for sure...

    Waiting for bloodwork isn't easy. My advice is to ask for a copy for your own files. I hope your dr. went right ahead & tested you for ALL the autoantibodies, rather than only ANA. I think you got good advice from your dermie, to hold off on a biopsy. Why scar your face unless you HAVE to? (My skin biopsies were done on my upper arms, thus no cosmetic concerns. My rashes were on arms, torso, and back.)

    I had hideous periods, too. Advil helped some, not enough. Yes, fatigue & brain fog, too. And anemia, which alone can flatten your tires, so to speak.

    MORE READING SOURCES: Dr. Daniel Wallace, whom I mentioned above, has an excellent lupus hardcover you can find in most libraries & bookstores. Dr. Robert Lahita, another rheumie/author, is also an excellent source. Also, you could try the search box above.

    Keep us posted as time permits, OK? And give a yell if you still can't locate the "stickies". Bye for now, Vee

     
    Old 02-28-2007, 11:20 AM   #7
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    Re: Looking for answers/advice about lupus...

    Dear Iluvdogs6, Welcome! You know, we *may* be related, from the symptoms you describe, plus I really, really love dogs, too.

    The lupus hardcover I just mentioned to someone else, by Dr. Daniel Wallace, does NOT describe UCTD as a "garbage Dx"! He describes a study in which people with the Dx were followed for 5 years. By then, some still had no "proper" Dx. Others by then had a formal Dx of lupus, or scleroderma, or RA, or primary Raynaud's, or polymyositis, or MCTD (mixed connective tissue disease). And a small % were still stuck with the UCTD Dx.

    About your rashes: Hmmmm... very interesting to me! I learned the hard way that there are *various* rashes possible in lupus. I never had a butterfly facial rash. Instead, starting in my thirties, I got red raised bumps on arms, torso & back, and these reappeared over 4 years, every 3 months or so. Then for the NEXT four years, those "bumps" would reappear, then expand into perfect circles, before fading in 4-8 weeks without scarring or depigmenting.

    I finally took myself to a teaching hospital rheumie, who did his own tests & also sent me to a dermatopathologist. What my rash & form of lupus was: a "subset" of SLE called SCLE, which stands for subacute cutaneous LE, with the annular (targetlike) form of SCLE rash. On the lupus continuum, SCLE is thought to fall between full-blown classic SLE and DLE (discoid lupus). Symptoms in SCLE can extend thru the whole range seen in SLE, but kidney & CNS problems aren't as likely, it's thought.

    There's a SECOND kind of rash seen in the SCLE subset. It's called papulosquamous; it looks like psoriasis (but isn't). It also tends to heal without scarring or depigmenting.

    By the time I was Dx'ed, I was extremely photosensitive, which it sounds like you've maybe been since childhood...? Do you still get rashes? Have you ever had them biopsied by a dermie?

    And what has your bloodwork shown, do you know? Weirdly, I didn't test ANA-positive. I was told by my current drs. (the really smart ones! ) that maybe 2/3 or so of people with SCLE are ANA-positive, the remainder being ANA-negative. But I did turn positive for anti-Ro, which is the autoantibody most often seen with SCLE rashes.

    My hubby had seen me struggle for so many years that he was finally sure, too, that it was "something" more than fibromyalgia or my imagination. He cried when I finally was Dx'ed, pprobably because he'd not been as supportive as he might have been. I've always been better at propping him up than he has been with me, or so I think, anyway.

    Re: the pain in your rib area, has your rheumie done a simple X-ray? Maybe considered such things as pleurisy or chostochondritis? (NOT that I have any medical training. I'm just a patient!)

    Anyway, I hope you write more when you can, OK? I'm sure others will chip in, too. Bye for now. With my best wishes, Vee

    P.S. To start a new thread, click the blue botton "New Thread", is located to the upper left of the long list of topics. Then type in your very own title in the small title pane. Then write your actual post in the large pane.

     
    Old 03-01-2007, 06:42 AM   #8
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    Re: Looking for answers/advice about lupus...

    Thanks for all the info Veej! I did find the sticky posts and I actualyl printed them out for my boyfriend to read. Anytime I mention any of this he gets frustrated with me.

    Anyways, I hope to have the blood tests results today, although I'm not sure I'm going to completely understand them.

    How does Lupus start out? Does it start out mild and then over the years get increasingly worse? I don't have any joint pain, does everyone with lupus have joint pain? I've had all these problems for so long and then all of a sudden I have this rash so I'm just wondering how this all works.
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    Old 03-01-2007, 06:49 AM   #9
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    Re: Looking for answers/advice about lupus...

    Thanks for all of the information Veej, it's been very helpful! I did find the sticky posts and I actually printed them out.

    How does lupus normally progress? Does everyone with lupus have joint pain? I don't have any joint pain so I was just wondering how all of this works? I've had all these problems for so long now and then now all of a sudden I have this nasty rash on my face and sometimes its worse than other times. There hasn't been a day in SO long that I can remember waking up and actually feeling GOOD and not tired. Whenever someone asks how I'm doing, I always say, I'm tired, always and then they ask do you ever feel good and of course I don't.

    I should get my blood test/urinalysis results today, although I'm not sure I'm going to completely understand what they mean.

     
    Old 03-01-2007, 09:48 AM   #10
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    Re: Looking for answers/advice about lupus...

    Hi, Sunshine. From what I've read and been told, lupus can start with a huge severe bang (like kidney or brain involvement), or announce itself slowly over time, or flare sporadically, or ... Meaning, there is no rule and no one set of symptoms that everyone with lupus shares.

    It's a disease with a very wide spectrum. There are "subsets": systemic, subacute cutaneous, discoid, drug-induced, and neonatal. At the one end of the spectrum: "skin lupus", with (maybe) mild pain & mild fatigue. At the other end: SLE with major organ involvement. However, you should definitely NOT panic: many people with lupus remain mild!

    Good luck with your test results today. Check in again when you can, OK? Meanwhile, best wishes, Vee

     
    Old 03-02-2007, 04:33 AM   #11
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    Re: Looking for answers/advice about lupus...

    I am still waiting for my blood tests, they said they were still "pending" yesteday so hopefully today I can get them...but I am not counting on it.

    Question, I tend to feel worse in the mornings and at night, is that typical of lupus and it's symptoms? At night I feel so horrible, cold symptoms (stuffy nose, etc.) and so tired...

    Also, I lose ALOT of hair when showering and combing my hair, how much is too much?
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    Old 03-02-2007, 10:07 AM   #12
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    Re: Looking for answers/advice about lupus...

    Ok now I am noticing that the veins/blood vessels in my arms and hands are large and very blue and my knuckles almost look like they are bruised because they are so blue and my fingertips look blue/purple as well and my hands are very cold but yet I am not cold?

    I noticed my veins were extra blue and stuff last weekend but just shrugged it off but now it's happening again...
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    Old 03-05-2007, 01:30 PM   #13
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    Re: Looking for answers/advice about lupus...

    Well I finally got my blood test results back...it was ana negative but they didn't test me for anti-Ro (also called anti-SSA) or anti-La (anti-SSB) so is it possible that I may still have lupus?

    I'm very frustrated that I still do not have any answers here...I don't want to have lupus but I do just want some answers as to why I feel so crappy all of the time.

    Over the last few days my hands/fingers have been turning blue and my chest now hurts. It's just one thing after another and I don't know where to go from here, every doctor makes me feel like I'm crazy and immagining all of these things but other people see these physical things that are wrong.

    Anyone have any advice? should I go see a rheumatologist?
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    Old 03-05-2007, 01:33 PM   #14
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    Re: Looking for answers/advice about lupus...

    also would getting a skin biopsy on my facial rash be a wise thing or no considering the ana was negative? not sure if that will help in anything...
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