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Thread: Seeking support and direction - please help

  1. #1
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    Default Seeking support and direction - please help

    Hello everyone. I'm new here and I am totally lost. I apologize if this is supposed to go on the new members page, but it doesn't seem to get much traffic and I am so panicked at this point that I really hope you don't mind me posting here.

    I'm 32 years old and I have 4 children - the oldest is 7. Normally, I am a high-spirited, energetic do-it-all supermom. Lately, though, I am feeling like I am losing all of me. :cry: After each of my children, I nursed them and felt fine but as soon as I started to wean them, I suffered with joint pain, exhaustive fatigue, come-and-go redness on my chest and face, and hair loss. I've been tested several times and always come up with a barely positive ANA test. Then, I'd get pregnant again and be fine. This time around, I am done having children so, we can't avoid the symptoms with another pregnancy.

    Since June, I've been experiencing numbness in my fingers and toes, joint and, now, muscle pain, fatigue, redness in my face, chest pain, falling/dropping things, difficulty retrieving words, fogginess in my thoughts (I messed up our finances which NEVER has happened before). The pain and fatigue comes and goes but on some days is unbearable. Today is one of those days. Everything hurts. I don't think a 32 year old should struggle to lift a pitcher of juice or walk up the stairs.... I have 4 children I need to care for....

    My primary doctor thinks I have SLE but is just in the gradual onset phase. I just started seeing a rheumatologist one month ago. He does not think it's lupus. He said that my thyroid is "generous" whatever that means. I got a call from the nurse who said that my sed rate is fine, no protein in urine, chest xray was fine, RA is always negative, ANA is barely positive (they don't even count it as abnormal). They are running more specific tests for thyroid or lupus but I doubt they'll come back postitive. But what the heck is wrong with me?!?!

    I have another appt. this week and frankly, I'm thinking about not going. I can't stand to sit there and have them tell me the tests are all fine when my life with my children feels like its slipping away every day. :cry: :cry:

    Someone please give me some direction......

    Thanks-

    4hugs - named so because no matter what I lose in this, what I cannot do with my children, I will always have the arms of 4 hugs here and I need to stay focused on that.

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    Hi 4hugs,
    I just read your post. I feel for you big time. I have SLE and have had it for years, or most of my life, however, I did not get diagnosed until I was 36 years old. When I finally got diagnosed it had been after years and years of symptoms. My illness got worse gradually. I also have Dishydrotic Eczema on my hands and feet and for years the doctors would be side tracted by the Eczema and would not even test me for Lupus. Unfortunately, I got disgusted and refused to go back to a doctor. This turned out to be a huge mistake that nearly costed me my life. I ended up with horrible problems when I was 36 years old that forced me to see another doctor. I had ended up getting Myocarditis, Costal Chondritis, Pleuresy, Malar rash on my cheeks, my fingers looked like sausages, I can not even tell you all the things that were happening with me. When I finally got the attention of a GP that tested me for Lupus and sent me to a Rheumatologist for the first time at 36 years old, I was in a very bad way for sure. I could have died instantly at any time. I guess what I am saying to you is that you should absolutely keep your appointment. Do not give up on the doctors. Lupus is really hard to diagnose sometimes. You have to hang in there and tell them right out that you are having these problems. Make a list of all of your symptoms and take them to the doctor. I know that they diagnosed me when the ANA test was pos, sed rate was seriously elevated, CPK elevated and a bunch of other tests that I can not remember indicated Lupus. SLE is a life long illness with no cure and a lot of doctors want to make darn sure that this what is going on before they will dx Lupus. There are several illnesses that will act like Lupus and not be Lupus. All I can tell you is to keep seeing the doctor and don't give up. I hope that you find out what the problem is soon. Hugs, Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

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    I wish I could reach out to you physically and give you a hug - I know you are frightened and stressed right now. I also have a quartet (all boys)so I know how hard it is when you feel like your life is spinning out of control but you have to hang on for your children.

    Many of the symptoms you are describing sound like lupus, but part of the reason lupus is so hard to diagnose is that it can look like so many other diseases, so it's called the great imitator. Symptoms like joint pain, fatigue and hair loss are common in many conditions, not just lupus, so they are not part of the criteria for lupus diagnosis. Lupus can cause skin lesions, extreme sensitivity to sun, and a specific type of rash called a malar rash, also know as a butterfly rash because of its shape. The malar rash can range from a slight flush to a bright red rash. The malar rash is a specific diagnostic symptom for lupus, so it's an important clue, but there are many things that can cause a facial rash or redness, so it's sometimes hard to tell for sure. The lupus rash usually goes across the bridge of the nose and doesn't affect the folds of the nose.

    There are many auto-immune diseases and lupus-like diseases that can cause symptoms similar to lupus. A normal sed rate and negative ANA don't rule lupus out completely, but they do make it less likely.

    I know you are very frustrated right now with the medical profession right now, but you do need to go ahead with your appointment. Part of the diagnosis process for any disease is ruling out the things it isn't. So every bit of information, even a negative test result, moves the process along one step further. When you go to your appointment, talk to your doctor about your frustrations. It may be necessary to refer you to a teaching or university hospital for more in-depth testing than you can get from your doctor.

    Has your doctor done an MRI test to rule out to rule out MS, which can often present with symptoms similar to lupus?

    In the meantime, it's important for you to take care of yourself. I know it's hard when you have children, but believe me, your kids don't love you any less if you can't be supermom any more. As long as they are loved, they don't really care if the kitchen floor isn't mopped every day or they have to eat leftovers once in a while. Do you have family or friends who can help out for a while? It's important for you to have a support network of people to call on when you're sick. If you don't have family in the area, maybe your church can help. I know it's hard to ask for help, but sometimes it's the best thing you can do. And remember there are always people here to listen and to care.

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    The "rash" that I have, the nurse said could be rosacea, which I've never had before though. It's like a flushing of my checks and goes across the bridge of my nose. I can still cover it with makeup but people at work have said, "Oh, it must be warm in your room!" - that's what it looks like to them. It seems worse when my other symptoms are up as well. I've also had the nose/mouth ulcers (forgot to post that before).

    My doctor hasn't talked about an MRI or mentioned MS, although I have thought of that especially on days like today where my fingers just are not working correctly - I have had so many typos doing this it is really frustrating.

    Thank you both for your encouragement. I do not talk with anyone in my real life about any of this. I barely tell my husband the exent of the problem. I am not one to ask for help, which is why this board is necessary for me.

    4hugs

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    oh man..i know i'm new here and all..but i must reply to this. i worry for you. i'm not a mother..but i have people in my life i must care for too. blood tests are not the only way to test for SLE. i had many many similar problems before i was diagnosed. i never went in to get it checked out.

    in fact, i only went into the doctors when my legs started to swell up to ten times their size. i thought it was water gain....noope..my kidneys were failing. they couldn't figure it out by a blood test..everything in my system was screwed up by the time i got checked out.

    i hate to say it..but if you want a definate answer..you could request that they do a kidney biopsy to check for lupus. it's painful..uncomfortable..but very worth it if you truely believe it's lupus. it could really save you if you do it. i just want to say that even though i don't know you..i love you. i send my prayers your way and hope you find your answers.

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    Default Sheena - about kidney biopsy

    A kidney biopsy is not a usual part of the diagnostic process for lupus unless the patient's symptoms indicate kidney involvement, as your symptom of extreme fluid retention did. In a person who does not have lupus nephritis or significant kidney involvement, a kidney biopsy may be negative or inconclusive. Since not all lupus patients develop kidney involvement, a biopsy is not a definite test for lupus. Since a kidney biopsy is invasive and there is a small risk of serious complications, most doctors would not recommend this procedure unless there are clear indications for it. In most cases, kidney involvement will be apparent from blood and urine tests, and a kidney biopsy is used mainly to stage the amount of kidney involvement and determine the best course of treatment, not to diagnose whether or not the person has lupus.

    That is part of the problem with diagnosing lupus - it affects every patient differently, and there is no one conclusive, definite test to diagnose every single person. In some patients, kidney involvement is the first symptom of lupus - other patients never have significant kidney involvement, so a kidney biopsy might not show any clear indications of lupus. That's why it's so important to find a good doctor who will take your symptoms seriously and work with you to find the answers.

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    Thank you all for your support. Sheena, I appreciate your touching words, I really do.

    I had a horrible appointment today. All bloodwork has come back "normal" so there are no answers. I still don't even rank high enough to work with a doctor - just an LPN. Her answer today was drugs for pain and explanations for each symptom as separate problems. So, hip pain is bursitis, chest pain is costochondritis, hand weakness and arm pain is a elbow injury. Yep, they just all happen to come on at the same time, go figure! She sent me to get a wrist brace and I walked out and threw it in the trash. I'm not getting the meds filled and this will be my last appt. My last two bad "flares" - periods of worst symptoms- were both during minor colds as if my immune system is certainly involved. But hey, let's just call it a group of collective, spontaneous injuries and give you drugs with no explanation....I hate the medical field.

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    Hi 4hugs,
    I hear where you are coming from. I am serious. I have SLE and for years the doctors would dismiss me and not even test me for Lupus. I would ask them to test me, because I had a lot of things going on with my joints, severe headaches, bad sun sensitivity and things like that. They would see the Eczema on my hands and decide that that was the culprit and dismiss me completely. One time when I was in my 20's they did the blood work and the ANA was neg, but the SED was elevated and I had severe Leukopenia. They claimed that I had a virus. They sent me on my way. Things like that kept happening to me until I was 36 when I had the most serious flare occur and then they did the ANA and it was pos with a speckle pattern, also that was the first ime I had the Malar rash on my face. They also dx Sjogrens, becuase that was causing me serious problems too. I had Myocarditis along with it. I guess what I am trying to say is that sometimes Lupus takes a very long time to fully present itself. I think that you should have kept the wrist brace, because they do help with the pain. I hope that you can get some answers. Do not do what I did. Do not give up on the doctors, because you could find yourself in the same situation I was in, which was not good. Find another doctor if you must, but please do not give up on the doctors. It took literally years for me to get dx. Hang in there. Hugs, Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

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    Thank you Kathleen. I will think more about what you said. Today, I still feel very resistant. I did not take my anti-inflam. meds last night or today and haven't dropped off the scripts they gave me yesterday. This morning I even thought that it would be most appropriate if I came here and apologized for posting because I don't feel that I belong here if I haven't been diagnosed and that nurse just shakes her head at me every time I mention Lupus (even though I've had 3 general docs all say that they think I am just undiagnosed lupus). Sigh.

    Can I ask what your eczema on your hand looks like? I showed the nurse yesterday that I am starting with a new batch - I get these clusters of tiny blisters under the skin. Eventually they push the skin up and it gets itchy at which point I usually can't stand but to remove it leaving a angry red patch until it heals. There might be 40-50 little blisters in each cluster and it goes on my palms and down the side of my hand (by my pinky). Is this like what you get?

    4hugs

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    That many "itis"es in someone your age adds up to an inflammtory process going on somewhere - the doctors just may not have done the right lab tests to find it. Please do not give up on the medical profession yet - this just hurts you and doesn't bother them one little bit.

    It sounded like the primary care doctor you saw before the rheumie was at least sympathetic - I would suggest returning to him, and asking him to refer you to a teaching hospital or clinic - explain that this is disrupting your life and you need to be back in control for your kids. I have four kids myself, all boys, so I know how stressful that can be, even without the added burden of illness. Go ahead and take your anti-inflammatory meds - they will help some of the symptoms and help you manage with the kids.

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