View Full Version : Lupus diagnosis advice
12-07-2010, 01:34 AM
Hey guys, I hope I'm in the correct forum. There didn't appear to be a set home for posts related to pre diagnosis.
I was talking to a friend of mine, who suffers with lupus, about some life long issues I've had. She insisted I be tested for lupus. I'm doubtful though. I'm hoping you guys can give me your own opinions, as to whether it's an avenue worth going down.
Since the age of 13 (now 30) I've had massive issues with fatigue and brain fog. Though the fatigue is mainly mental rather than physical. I just feel drained 24/7, regardless of sleep.
I have a terrible sensitivity to fluorescent lights. When under them, my eyes become bright red and if the lights are close enough, I'll start to feel weak, sick and irritable. My skin also becomes irritates and sore. It actually appears to effect my entire body. Strangely, I don't get the same reaction from sunlight.
My eyes are generally sensitive. The inner, lower eyelids especially. They are inflamed and red most days. When they're not, they quickly do so the second I visit tesco, boots or other stores that have flourescent lights.
I have extremely sensitive skin. Especially on my face. I react to almost every moisturiser in existence. I've found one by Avene that doesn't make my face sore and red.
I recently did a biocard home test for celiacs, which tested positive. So currently living gluten free. I only mention this, as it's also an auto immune issue.
I also have other random symptoms such as mild depression, anxiety etc.
Anyhow, the fact I'm not bothered by sunlight, makes me believe lupus is unlikely. What do you think? That said, being out in the sun does make me tired. But that's normal for most people? But my eyes don't get sore with sunlight.
Many thanks for your time,
12-07-2010, 01:56 AM
I can't tell you if it is or is not Lupus. I can only tell you that you have some indications of an autoimmune disease, which could be Lupus. The only way to know for sure is to have the testing done, compile your medical history and present it all to your doctor, preferably a rheumatologist, as they specialize in auto immune disorders and diseases. Even then, a diagnosis is not easy to get, especially on the first try, but, there have been some that were diagnosed quickly. Lupus is the great imitator, and mimicks so many other diseases, as well as, often has combo or companion diseases that complicate a diagnosis by leading the doctor doing the testing down one path and then another.
It sounds like you don't believe it's Lupus, but, you don't really know yet what it is. There is every reason, based on your post, for you to pursue some kind of diagnosis that will help your doctor to begin treatment of your symptoms so you can have some relief. Even if it isn't Lupus, at least you'll have that.
Best of luck to you, I hope you find your answers.
Hi and welcome to WHL! We are so glad that you found us. As was mentioned above Lupus is often not easy to diagnose however when people have 1 autoimmune disease it is likely they may have others as autoimmune disorders seem to overlap.
You say that you are not sensitive to the sun however you then say it makes you tired. You stress that you are sensitive to light (by the sound of the post it seems like florescent lighting) which has UV rays like the sun. Several autoimmune disorders have photosensitive and Lupus is one of them. There is a sticky in the newly diagnosed section that gives the 11 criteria for diagnosing Lupus. You might want to take a look at it. I am also posting a link to a very easy to read/understand (and very general) description of some symptoms common to autoimmune diseases/disorders.http://www.gethealthyagain.com/autoimmune.html. I agree with Teresa that the next step should be a rhuemy for some testing. There is no actual test for Lupus but it is a tool that can be used to help give a diagnosis.
None of us can tell you if you have Lupus or not but you have come to the right place to ask questions. The people here span the spectrum from undiagnosed to newly diagnosed with 1 or more diseases to people that have lived with autoimmune disease for decades.
12-07-2010, 09:26 AM
so glad that you found us, and i hope we can help you find out what is happening to your body. As both Teresa and Mari are said, the next step is to begin the lab tests to see if your ANA is positive for an auto immune disease. Usually, your PCP will conduct this test, then send you to a rheumy if the results are questionable.
For your part, you can expedite a diagnosis by learning all that you can about the many symptoms of AI issues, then start yourself a physical health history log. You should document anything that you can remember, and keep a current daily log of your symptoms. Diagnosis of an AI disease requires both positive lab reports and personal health criteria.
I know you are worried, this is a very frightening period of your life. I hope your drs. can help you answer the questions, and get you started on a treatment program that helps you feel better very soon.
12-07-2010, 06:58 PM
Thanks for the responses, very much appreciated.
I've pretty much given up on my Dr, he ran some tests for low iron and TSH. My iron was low, but within range. My TSH was 0.7 and according to him, I couldn't possibly have issues with thyroid, which I know isn't true. At this point, he didn't "feel the need" to conduct anymore tests. Despite 17 years of exhaustion and my other symptoms. Everything I then suggested, he looked at me like I was crazy.
Even the celiacs, he wouldn't test me for, so I had to do the home test. I did it twice and made my house mate do it twice, just to make sure. I also researched the biocard test kit, which is the same kit they use in the labs, here in the UK.
So yeah, I've given up on my Dr. I'm going to have to go private, at least until I can gather enough evidence of me being sick, to convince my Dr. It's crazy that I should even have to do this, once I find out what is wrong, I can see myself kicking his ass :)
I am going to book some appointments for private blood work and get to the bottom of it.
Speaking to some friends today, apparently it's not normal to feel exhausted after being in the sun for a few hours. hmmm. I also went on a sunbed today, and noticed that I got a prickly, tingly kind of feeling all over and went a little blotchy but it was nothing horrific. I'd noticed this before, but again, something I figured was normal because I was getting hot. It's strange when you've had an issue all your life, there's no real benchmarks for what is and is not normal.
Thanks again for all the advice and the warm welcome :)
Your doctor sounds like so many we run across. There are actually several threads at the moment where we are complaining about doctors. They dismiss us by thinking we are lazy, crazy or hypochondriacs. One of the first things this site taught me was that the doctors work for me and I can fire them if they are not doing their job! Sounds to me like it is time to fire one! One thing to keep in mind is that with Lupus or any autoimmune disease you can't live and die by the blood work. There are times when you are not flaring that the blood work may be OK but that doesn't mean you don't have it. It is a combination of symptoms and tests. That is why we all search for that one (hard to find) doctor who actually knows what he/she is doing.
I think most of us understand the comment about it being strange what we come to think of as normal. We have to learn that our normal really isn't the normal for most people. I am glad that you found us and please let me know if there is anything that I can do to be of assistance in any way
12-07-2010, 08:18 PM
Before I forget Tgal, the article you linked me to, is awesome! I've been reading it all day.
Regarding my Dr, I certainly felt like a hypochondriac talking to him. In some respects, right now, perhaps I am. But I don't want to be sick, I just am, yet don't know why. And that's just it, I want to know and right now, online forums and Google, are my only sources of knowledge.
I've recently found that I'm sensitive to night shades. Every time I eat potatoes, they knock me out. Doing a little research, it appears that's fairly common with autoimmune disorders, interesting.
I cannot wait to find somewhere to have tests done, waiting for the results will kill me, so impatient! I'll keep you all updated on any progress I have.
Thanks tons for such an awesome, warm welcome :)
12-07-2010, 10:33 PM
Hi, Just to let you know that when I was diagnosed I had all the tests done one day and everything came back normal. Six weeks later at a different hospital (i was totally crippled up by this point), I tested positive. It can all of a sudden hit you like a mack truck. If you aren't getting results from doctors try some of your naturopathic people in the UK. They are very good. I went to someone in Kew Gardens. I believe a lot can be cured through diet. Also, if you are able The London Lupus Clinic is a very good starting point.
12-08-2010, 07:12 AM
Welcome to our website and i agree with the others sometimes these dieases take a long time till they are diagnosised properly and dealt with. We all have many simular complaints and some have others. But we are all here for each other to vent and get things out of our systems especially when the doctors are not understanding. I myself have a wonderfull rheumatologist and am confident in the treatment he has me under i am sorry there are so many incompetitent ones and i hope you find a good one. Love Bonita
So yeah, I've given up on my Dr. I'm going to have to go private, at least until I can gather enough evidence of me being sick, to convince my Dr. It's crazy that I should even have to do this, once I find out what is wrong, I can see myself kicking his ass
I had to laugh a bit, because you remind me of, well, me! I have a bit of history with being rather harsh to some of the so-called "specialists" I've had to put up with over the years.
All kidding aside, I think you are doing the right thing in being assertive and pushing to find answers. Your symptoms are somewhat like what mine were back before I got my SLE diagnosis. I would get sick from being in the sun. It started out quite mild, and felt like I had a head cold, or a case of the flu after UV exposure. And there was an overwhelming feeling of fatigue despite the fact that I was physically very fit and quite used to leading an active lifestyle.
I can't really add much more to the good advice you've already received. I would just say that you should trust yourself. If you think something is going on with your health, there very well could be. I was told that I was just a hypochondriac many times, but it turned out that I was not.
I hope you can find the answers you need. We'll try to help you any way we can.
12-08-2010, 04:53 PM
Thanks a lot guys, it's great to know I'm not alone and hopefully find some answers :)
12-31-2010, 12:57 AM
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!
Linda From Australia
12-31-2010, 01:26 AM
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?
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
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!
12-31-2010, 09:34 AM
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
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!
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.
12-31-2010, 10:37 AM
Thanks for all the info, it's so nice to hear someone understands what my life is like!
Linda From Australia
12-31-2010, 05:53 PM
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.