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Thread: Lupus diagnosis advice

  1. #11
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    Thanks a lot guys, it's great to know I'm not alone and hopefully find some answers

    Paul

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    I'm new to this site. I have been sick since October of 2009. I went to the doctors in January of 2010 for the fatigue, depression and overall pain. My doc ordered blood tests, they came back showing postive ana, low vitamin D, high cholesteral..can't remember some of the other things. He sent me to a rheumatologist (my spelling sucks!). This doc has run blood tests, same results, which still didn't give info for a definitive diagonisis. I had an MRI, which showed something in the white matter-they mentioned vasculitus. Nerologist said not enough to say MS, he was positive it wasn't MS. I have been on cymbalta, lyrica, vicodine, and tried predisone (I have to quit after 9 days of hell from side effects). Now I'm taking lyrica, vicodine/ultram (depends on pain), and the plaquelin. I still have no relief. I wake up all night long, and waking up is not fun! I am totally exhausted, stiff, off balance, it feels like the worst hangover you could ever have. So, some nights I try to just stay awake to avoid the waking up, then all day I keep falling asleep. Once the "waking up" has worn off, I still have joint and muscle pain, but I manage to put in about 4 hours of housecleaning, work, grocery shopping--general living stuff-before I start to feel I can't go on. But I'm afraid to stop, because when I do the stiffness, joint and muscle pain set in and it feels like I'm wearing a lead bodysuit.
    My husband and I own and entertainment company, he is entertainer, we travel and alot of jobs require us to be entertaining late at night. This is very hard for me now and sometimes I just can't do it. Lots of people say they can hang or party like they use to, but this is different. It hurts to try and hang or party.
    I don't know if I have lupus or not. I don't have skin rashes, although it sometimes is slightly pink across my cheeks and nose, and I don't have problems with the sun. I hear about lupus flare ups, I don't have any good or normal feeling days (even with all the meds I take), I have not heard how long a flare up can last. Can they last years? Does the meds really relieve anything ever for other people--I don't take the pain pills during the day as they make me sleepy-? When people are not in a flare up, do they feel good, happy, normal?
    Sorry for this long unorganized story! And if this isn't the right place to be posting this, I have never done this before. Thanks for listening to me!

  3. #13
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    Hello and welcome to the forum. It would be helpful to find out how long have you been on Plaquenil. It can take up to 6 months before you start to feel it working, some people it takes a lot longer. Another important piece of information I found out is that if you wait until your pain is really bad before you take your pain medication, it is very hard to control the pain. It is far better to take the medication when you start feeling the pain, then take it regularly so your body does not have to cope with the peaks and troughs.

    Some people with Lupus go into long remissions, some short remission, some part remission, some people never go into remission but have some symptoms all the time. Other people have symptoms that come and go. Other people unfortunately get worse and have other problems. Lupus is an unpredictable disease, but the only predictible part of Lupus is that if you put your body under stress, you have a high chance of having a flare.

    How often do you see a Rheumatologist?
    Diagnosed with Lupus - 22 June, 2010

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    Hi Terriaw44,

    First off let me welcome you to WHL! There are many people here in the exact same position as you. Autoimmune diseases are often difficult to diagnose and for many people it takes years to get a firm diagnosis. It is often difficult for healthy people to understand what we are going through or to understand the depth of the fatigue that we have. You are correct. It is not just a normal tired. It is a tired that is down your bones. It is not that you don't want to move, it is often that you are unable to move. There is a wonderful thread where people are discussing what it is like to feel the fatigue. See the link below

    http://forum.wehavelupus.com/showthr...hlight=fatigue


    Of course we don't know if you have Lupus or not but either way you are welcome here. Although this site says "we have Lupus" we have people that are fighting for a diagnosis, received a diagnosis of Lupus or received a diagnosis of other autoimmune diseases. Although each is a bit different they overlap so much that we all understand each other.

    Lupus attacks each person a bit differently. Although you will find people here that understand what you are going through no two cases of Lupus are exactly the same. Some people do not have rashes while some get them constantly. Some people have no problem with the sun while others can't even go grocery shopping without covering up and wearing sunscreen. Lupus attacks each body differently but it still attacks. Many of us have difficulty sleeping which can cause a whole host of problems on its own. There is a thread that where we were recently discussing low Vitamin D. Many of us seem to have that. Read through the site a little and I am willing to bet that you will find a few things at least that you can relate to.

    As for your question about how long can a flare last, well, the answer is that it can last a very long time. There are many people that get on the right combination of meds and their lupus goes into a milder state (and a few actually go into remission). For most of us there becomes a new "normal". We begin to learn how our body reacts to things and we know what things make us worse and what things help. For me, I had to figure out that I can't judge my life as others do. I can't use the same criteria as healthy people do to decide how I am feeling. I compare today to a day that was REALLY BAD and then I can tell you if it is a good day or not.

    Not sure if this helped at all but it is almost 3AM and I should be sleeping. I will most likely get up in the morning and think "OMG what did I write" but for now it seems ok!
    Last edited by tgal; 12-31-2010 at 01:58 AM. Reason: Added Link
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    Thank you so much for replying to my late night venting! I don't know anyone with autoimmune problems to talk with, I found I got very emotional reading your reply! I am very suprised (and happy) to hear other people saying they have the same things going on with them that I do. I was begining to feel that I was just crazy and maybe that these things are just in my head or that I was over thinking everything I was feeling. My life has been very stressful for about 1 1/2 years, we lost our home (foreclosure), got into a new foreclosed home that had to be gutted due to mold. We did all the demolition and re-building ourselves (and still went to work, dealt with our teenagers, and babysat with grandkids). Now we have closed down our business we have had for 20 years to start a new one different (hopefully less stressful) business. I keep telling myself that I should try and see if I don't do all the running around, cleaning out building, and lifting heavy things if I might have some really good days. I know that if I just lay on the couch I'll get stiff and it will hurt to start moving, I need to find the middle! lol

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    The best thing about coming here is that there are people that understand how you feel. It is a place to talk with people that "get it". I would like to share a bit of information with you.

    Stress is the number 1 thing that brings a flare on or keeps it going. It is almost impossible to feel good when really stressed. The other thing I would like you to know is that our our bodies react differently than healthy bodies. When healthy people are busy and are doing things they hit a point where they know it is time to stop. Their body tells them "enough". Our body does not do that. It actually goes and goes and does not get the message that we have have hit our pain threshold. This is one of the reason why we feel like we have been hit by a truck the next day and can't move or get out of bed. You have to be very careful to limit stress and not over do it because that is helping to keep your body in this place of pain.

    Here is a link that gives you just the very basics to understand autoimmune diseases. I hope it helps and we are really glad to have you as a part of our WHL family!

    http://www.gethealthyagain.com/autoimmune.html

    FYI There is a chat screen on the main page. Often times there are people there chatting or at least watching to see if someone needs to talk. Stop in and say hi. You may not get an answer right away but if someone is there they will answer within about 10 min.
    Last edited by tgal; 12-31-2010 at 10:09 AM.
    Mari

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    ~Winston Churchill~







  7. #17
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    Thanks for all the info, it's so nice to hear someone understands what my life is like!

  8. #18
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    Terri have a look at this thread started by Oluwa, it is titled "Home Care 101 for Lupus"
    There is some very good advice there.
    http://forum.wehavelupus.com/showthr...-101-for-Lupus
    Diagnosed with Lupus - 22 June, 2010

  9. The Following User Says Thank You to Linda From Australia For This Useful Post:

    terriaw44 (12-31-2010)

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