View Full Version : Hi...new here...welcome to my life

09-25-2011, 06:28 AM

I am feeling quite overwhelmed to be honest. I guess that I can begin by telling you that within the past 2 years, since October 2009 when I got sick and was in the hospital, I haven't been the same. I don't know it that was a turning point, or just something to really set me back and realize that something was definitely wrong. Before I had my oldest daughter, I had been going to a local general practicioner, and then stopped going to him simply because I thought he was really losing it. He later died, and I had heard that he had brain cancer. Anyway, then I started going to the a Community Health Center because they would see you on a sliding fee scale, and let's face it, because I was staying at home then, and we really couldn't afford to pay for the insurance at my husband's work, I had to go to a place that would be as cheap as possible because we couldn't afford to pay outrageous medical bills either. So, then I went to work full time, in 2007, and I instantly gained a new dr because our work provides a dr for us. So, he has been my primary care dr since then. Then I have my regular GYN and 2 ENT that I see for my allergies/sinuses. In the past 17 years, there have been 3 primary drs, my GYN and ENT drs.

OK, let me go back to being in the hospital...I had a sinus infection that wouldn't go away (for 13 weeks before being admitted to the hospital), and 5 anitibiotics later, I was finally given a CT scan, ordered by the dr here at work. I still had the sinus infection, and a lot of inflamation that had formed a pocket that was pushing down on my brain, and surrounding the nerves that run through your sinus cavities. After it not getting better after a week, then another CT was done, and I was admitted. I stayed in the hospital for 11 days, 7 different antibiotics through the iv's and major steriods that they use with cancer patients, and the sinus infection got better, but I still had a lot of inflamation (it hadn't gotten better), and the headache was still there. The ENT drs were saying that the headache had to be neuro related, and the neuro drs kept saying it was ENT related, but neither could explain the swelling and inflamation, nor why it wasn't responding to the steriods. So, then new steriods began to work, and it seemed that the inflamation was beginning to go down, but I still had no drainage, so who knows where it went to. Anyway, they did a nerve block to help with the headache, and let me go home.

Since that time, I have complained numerous times to the dr about being incredibly tired and exhausted or drained, headaches, my hands hurt in each joint, my elbows hurt, my hips hurt, my knees hurt, sometimes my ankles hurt, I have swelling in my lower legs and ankles and sometimes in my feet (although for the past few months, my feet are always swollen), my jaw hurts on each side, and there have been several times where the glands just under your jaw have been swollen and the glands in your armpits too. And then there have been the general times that I have complained that I just don't feel good, and I can't explain any one thing that doesn't feel good...nothing really hurts, like sharp pains, but I am achy and just don't feel well. I still can't explain it. And, I have had days where I suddenly have a fever, keep it for a few hours, and then it is gone...but while it is there, I am very tired, and don't feel well. I have had many episodes of being "dizzy", but not the room spinning type of dizzy, it's like I am draggin through (think about the resistance of dragging your body through water going in the opposite direction of you) and I sometimes feel like I'm in slow motion in my head while my eyes are seeing everything in real time. I notice sometimes that I feel like my speech is a little slurred or slowed, and I often find myself forgetting things...like what something is called (a paperclip or brush or plate) and I can be in mid sentence and totally forget my thought.

I know that all of those things could be related, and then could not be related. I know it could be related to something else totally. So, after all the complaining, the dr finally did bloodwork to test for inflamation, RA and a few other things. The RA test was negative (my numbers were elevated but not enough that he would say it was RA) so they are calling it an inflamatory arthritis, and he sent me to another dr (Rheumatologist). So, he took X-Rays, and did an evaluation that kept me in his office for almost 2 hrs, answering questions, him poking and prodding, and then more labs. Then I got the phone call that said to come back and discuss the results. So, I got the Lupus diagnosis (SLE Lupus). I was still negative on the RA factor, but he also said that he believes I have RA, but can't officially call it that without the bloodwork to show it. But he also said that about 30% of patients will always test negative even though they do have RA. He started me off on Naproxen, which I didn't see any difference with after almost 3 weeks, and it caused me to have really bad heartburn. So, now he has given me methotrexate, and I have to start taking folic acid. I will start out with between 6-8 of the methotrexate, and take the folic acid daily, and then we will go from there.

Now, I also need to let you know that about 5 weeks ago, I went to a dr for headaches, at the request of ENT dr because he said that he thought this other dr might be able to help since the last 3 scans I have had done showed nothing in the sinus cavities as far as infection goes, but I did have inflamation (from what, who knew) and predisone didn't help. So, I went to her, took copies of all the scans since 2009, and had dr notes faxed to them from all over, and she went through the notes, looked at each of the scans, and then sat me down to say: "I look at headaches very differently from any other neurologist...there is a root cause for all headaches, and in order to treat them, you have to find that cause, and not just treat them as a symptom." Made sense to me. She showed me different areas of the scans, and pointed out the inflamation. She said that something was causing the inflamation, and she would need to do a little more digging, but said that the inflamation is causing the headaches and probably was causing pain in other areas of my body too. She said that I was having migraines due to the inflamation that was developing in the sinus area, the brain area, and compressing any nerves. Again, she said that the inflamation was causing the headache, but something else was causing the inflamation. She gave me something to take daily to prevent the headaches, and also gave me something that I could take if I do get a really bad headache, but she also wanted to find out the cause of the inflamation because without knowing what causes it, we are doing "band-aid fixes" and that only holds til the sticky wears off. Makes sense to me! I really liked her. She took a lot of time with me and explained things so I could understand them.

Then, I go to Rheumatologist dr, and get this news. So, now my thoughts are...since Lupus causes inflamation to build in your joints, and in other random areas, and since headaches can be a symptom with Lupus, is that what has been causing all this to happen in the first place? Have I been complaining all this time, even before the past 2 years, and has this been just causing me to feel bad all this time? How long have I had it? Why hasn't anyone noticed before now? Why did it take so long to diagnose? Am I going to ever feel good again? How long is that going to take? I have been made to feel like things were all in my head before, so I started for awhile to not even go to the dr because I didn't want to be treated like that, but then now, I feel like I should have gone...at least then there was a report of it. I have felt like I was being looked at like I was a hypocondriac, and I'm not...I really do feel bad...I really do hurt...I really am feeling/experiencing "X", and I'm not making it up!!! I am tired of being told "you are just a mystery" and made to feel like I was crazy...why does that happen? I know my body, and I know when something is not right...I'm telling you something is not right...why don't you believe me...why don't you help me find out what it is? I don't like to take meds...I feel like your body builds up a tolerance to them, and it isn't good because of all the side effects, but at the same time, I just want to feel better...I want to feel like my self again. I'm tired of being tired. I'm tired of not feeling good. I just want my life back and I feel so overwhelmed with worry, anxiety, relief, and wonder.

I have been reading many, many posts here, and I've already been so encouraged by some of your posts to others, so thanks for that, even if it wasn't really meant for me. My husband is so supportive, but he worries about me, and I feel like he kind-of got the short end of the stick with everything that has happened to me, and he is so healthy...he has really seen that "in sickness and health" vow come into action. He is my rock, but I worry about him too and I don't always want to tell him I feel bad...I mean, let's face it...that would be an everyday event! I really want a dr who will listen to me, and will do what is best for me, not ignore me. I'm so tired of talking to these drs and they just look at you and almost roll their eyes, but make it look like they are just looking away...and don't write anything down.

So, that's a bit of medical history, but who am I really? I am a 35 yr old daddy's girl, wife, mother, reader, game player, 4-H leader, volunteer, gardener, dog lover, cook, bargain hunter and much more. I am looking forward to getting to know you here, and to great advice and support.

09-25-2011, 08:23 AM
Good morning and welcome to WHL! The first thing that you need to know is that we believe you. We know you are not crazy or making things up. Lupus and other AI diseases can cause all of the things you mentioned. The fatigue that you mentioned, the moving through the water in the opposite direction is something that we know well. Often your will hear it discussed here as "Led blanket fatigue". You know when your body is so tired and achy but your brain knows you have things to do but it is like you are covered with a lead blanket making every move feel just the way you described it. Yes, we understand that feeling well.

The inflammation is a part of AI diseases. AI disease are basically when our immune system gets very confused. The body created this wonderful system to handle illness and germs. When the body sees one of those invaders the immune system goes on attack and work to destroy the invader which keeps us healthy. For those of us with AI patients our immune system is confused and it begins to attack our healthy body. The immune system goes into overdrive and many of the illnesses that you have had very well may have been caused by Lupus.

Why did it take so long for someone to figure it out? That is a hard answer but a common one. There is no real test for Lupus. lupus is a disease that is diagnosed when all other options have been ruled out. Second, too many people, specialist included, don't understand how to really diagnose Lupus or many of the other 63 (I believe) AI disease. Many of us here have gone through so much of the same issues that you have going through. Like you I am on MTX as well as plaquenil (an anti malarial that seems to work for many Lupus patients), steroids and several other medicines.

I am sure that I have missed some of the questions that you asked but I too have Lupus and my brain seldom fires on all cylinders anymore LOL. I look forward to getting to know you and I am really glad that you found us. It is always wonderful to have new members of our WHL family. We are family because we do our best to always be there for each other even when no one else understands.

09-25-2011, 04:31 PM
Oh wow, well you've certainly been through the ringer with all of this :/
The sad fact of the matter is.. almost all of us have been looked at as hypochondriacs. Whether it was by a doctor, or a friend. It's really hard, when you feel horrible, but you look fine, and people assume that you are fine and just exaggerating.

Lupus causes fatigue, inflammation, brain fog (which is what you described with the forgetting simple words and the ends of your sentences), joint pain... headaches, blech. All of that stuff that you were talking about, are symptoms of Lupus.

Now I can't tell you about everything going on with your sinuses, but I suppose it is possible that it was Lupus related. Lupus is when your immune system attacks itself. Normally it attacks the joints, like many other AI diseases, but it can also attack the skin, and any other organs, so attacking your sinuses is well within the realm of possibility.

It's sad, how doctors treat us. Like we're diseases and not people. And if they can't see our disease, then our disease is hypochondria, or stress, or all in our head.

Anyways, i've got to go, but i did want to stop by and say welcome, tell you it's NOT in your head, you were perfectly correct when you said you've lived in your body your whole life and knew something was wrong.
Look forward to talking with you more :) Welcome

09-26-2011, 09:17 PM
Your story sounds similar in some ways to mine. I have had TERRIBLE sinus related infections/inflammation. I was admitted to hospital many times for labrynthitis... but I never once received the same care as you... terribly neglected here Im afraid. I have an unexplained blocked sinus which I have been living with for years, it has consistantly come up on MRI scans but no one has ever cared enough to do anything. Im a ticking time bomb.

Anyway... a lot of your symptoms for lupus reflect mine as well. Dizziness etc. The most insulting part is, because they have not stumbled upon overt evidence of organ involvement, they continue to say 'you are lucky your lupus is mild'. Most insulting phrase I have ever heard.

I am glad you are here to share your story! Welcome!