View Full Version : Help me understand what is going on with me today

04-28-2009, 06:46 PM
Hello everyone once again i saw my dr today . My Lupus has flare up it's been a week i'm limping on my right side when i tried to walk my knee goes forward. the dr think that it could be my lupus but she what me to go get done some x-ray, but this time it taking a long time to get better. i have a question my Jaw crack when i open and it hurt she used a turned that i did not understand PLs Help!!! :( I'm all lost.


04-28-2009, 08:19 PM
Hello Maria....

First off....gentle hugs to you for all you're going through. I'm sorry you're having pain and feeling miserable.

I'm not sure if I have answers for you...but I'll try. I've had Lupus for 27 years, and have come to know what Lupus likes to do. It likes to move all around to different joints, on different days, and cause pain and inflammation in those joints. One day you'll have it in your fingers and wrists and elbows and knees and then the next day, it might be only in your shoulders and ankles. It is so very very frustrating trying to keep up with it. My worst joint pains were always when I was in a flareup, but sometimes I'd even have them when I wasn't really flaring. I'd just wake up otherwise feeling okay and then within a few hours one of my joints would be in agony. It doesn't seem to have any pattern or make any sense. Sometimes I might have it in a joint that I had been overusing the day before, like my hands digging in the flower garden, but most of the time the joint pains just came on randomly. And sometimes, like the pain in your knee joint, it would last for days or weeks and get so bad I could barely walk. Those are the times that this illness gets unbearable....when you feel like you can't take another day of this. When I had the worst joint pains, especially in my knees and hips and ankles (the weight bearing joints) my doctor would always give me pain medications that was stronger than over the counter kinds, but I would use it very carefully, only taking it for as long as the joint pains were their worst. Have you talked to your doctor about pain medication for when it gets unbearable? Also, I believe the reason your doctor wants to get xrays of your knee, is to make sure this pain is not caused by an injury to your knee. He probably wants to see what's going on inside the knee joint, like inflammation from arthritis.

The cracking and pain in your jaw might possibly be from arthritis too. Over the years with Lupus, I've had several times that I had pretty bad arthritis in one of my jaws or both. And when it was inflamed from the arthritis, it would always crack. I've had times when it's been pretty painful to open my mouth to eat and I had to sip liquid type foods until it eased up. Can you call your doctor's office tomorrow and ask to speak to the nurse and explain to her that you didn't understand a word that doctor told you, and ask them to look it up in your chart and explain it to you? If you don't understand something the doctor explains to you, even just a word, you have every right to ask someone to help you understand it. It's your health and your body and you have a right to know so you can take care of yourself. If your jaw cracking is extremely painful and you are unable to open your mouth to eat because of it, you should call your doctor right away and ask them what to do.

Maria, I'm not sure if I answered your questions or helped you, but I wanted to let you know I care that you hurt and you're confused, and I didn't want to just let you sit and wonder. It sounds like possibly what you are experiencing is from the Lupus attacking your joints, but this is only my opinion of course.

Lastly, if there are any words or anything you don't understand when I reply to your posts, don't be afraid to ask me to explain what I've written. I very much understand how hard it is to understand English for someone who might be still learning it. I'm always happy to help you understand.

I'm really sorry you hurt so much..... :hug:


Lori :heart:

04-29-2009, 08:12 AM
Thank you for explaining it to me the dr used a word like tmj ot mtj something like that i know it a diease but i don't know what it does or why it happens. it is nice to have some one that understand and help you .


04-29-2009, 09:20 AM
Hi Maria...

Your welcome....

The doctor probably used the term TMJ, which is Temporomandibular Joint Syndrom. This is a condition that affects the jaw joints and can be caused by a few different things. I just googled it and found quite a few websites that give an explanation.

You might try going to Google and typing it in and read the information.

I hope you're feeling better today.


Lori :cool2:

04-29-2009, 09:56 AM
Hi there and welcome,

Sorry you are going through so much pain and confusion. I've had lupus for 24 years and agree with everything Rasta posted. Sometimes (Usually) doctors give problems names that are just that, a name. The words have Latin root meanings in medical terminology but sometimes they are as simple as; her knee hurts. That would be something like "knee algia" Just joking but similar, a name without having an explanation and a cure.

Sometimes when I flare I will drag my right side of my body. It is actually neurological in nature meaning it is a brain thing. I will have MS (multiple sclerosis) symptoms without having actual MS. Mine is brought on by being exposed to heat. Almost always it is connected to my being out in the summer, or, overdoing it. As soon as I rest and cool off I am better.

The TMJ can be caused from arthritis, lupus inflammation, malocclusion (dental problem) or maybe something else. I'm going through it right now and am recovering from oral surgery. My doctor is going to leave it up to the dentist and oral surgeon to deal with my TMJ.

Just know that you are not crazy and feeling "lost" is something we all understand. As soon as we think we got lupus figured out it sneaks up on us with something new weird and different.

Don't be afraid, it doesn't have to mean you will always have the current problem. Chances are when you get a handle on it you will have a remission and feel better.

Angel Oliver
04-29-2009, 10:53 AM
Thinking of you and to say i have TMJ too.My jaw cracks for England and actually locked 3 times at christmas after a huge yawn :) OUCH! I have surgery on tuesday as when i manipulated my jaw back from behind my ear lol...not really......well the disc isnt in the right place.Dont worry this doesnt happen to people very often,i always have to be different n be the 1%. Can you imagine i had no chocolate for weeks...ahhhhhhhhhhh.Ive made up for it now though.Today ran out,so in need of fuel.Fuel=chocolate.
Dont be scared of what ive put.Everyone is different and it can be sorted with the right maxofacial care/dentist. Hope you feel better for asking for help here.Many members here are full of knowledge and love.
Take care.

04-30-2009, 01:00 PM
Sorry about your pain. My joints are worse some and days and better others. But I can't walk more than 5 mins. It's real frustrateing to me because there's a lot of places I would like to go but can't. But my meds help a great deal with my inflammation and pain at times. If I gets real bad I take methylprednisolone. It helps me for several weeks. But no matter what I do I can't walk.

04-30-2011, 12:02 PM
[QUOTE=maguadalupe;48187]Hello everyone once again i saw my dr today . My Lupus has flare up it's been a week i'm limping on my right side when i tried to walk my knee goes forward. the dr think that it could be my lupus but she what me to go get done some x-ray, but this time it taking a long time to get better. i have a question my Jaw crack when i open and it hurt she used a turned that i did not understand PLs Help!!! :( I'm all lost.

Hi Marie,
It sounds like you have a flare with your Lupus my knees get affected alot daily with pain and when i walk my right knee starts turning inwardly, i know i'm always glad to sit down with the pain but refering your jaw i have that it's called TMJ Disease of the jaw, it's to do with the main bone each side of your face by your ear drum it crunches and cracks, ask to be sent to an ENT specialist and they usually x-ray to find out, it's quite a pain in the neck when it cracks.

I'll add some info below on that disease for you and best of Luck Terri xxx

What is the temporomandibular joint?

The temporomandibular joints are complex and are composed of muscles, tendons, and bones. Each component contributes to the smooth operation of the TMJ. When the muscles are relaxed and balanced and both jaw joints open and close comfortably, we are able to talk, chew, or yawn without pain.

We can locate the TMJ by putting a finger on the triangular structure in front of the ear. The finger is moved just slightly forward and pressed firmly while opening the jaw. The motion felt is from the TMJ. We can also feel the joint motion if we put a little finger against the inside front part of the ear canal. These maneuvers can cause considerable discomfort to a person who is experiencing TMJ difficulty, and doctors use them for making the diagnosis.

What are TMJ disorders, and how are TMJ disorders caused?

TMJ disorders are a group of complex problems of the jaw joint. TMJ disorders are also sometimes referred to as myofacial pain dysfunction and Costen's syndrome. Because muscles and joints work together, a problem with either one can lead to stiffness, headaches, ear pain, bite problems (malocclusion), clicking sounds, or locked jaws. The following are behaviors or conditions that can lead to TMJ disorders.

1.Teeth grinding and teeth clenching (bruxism) increase the wear on the cartilage lining of the TMJ. Those who grind or clench their teeth may be unaware of this behavior unless they are told by someone observing this pattern while sleeping or by a dental professional noticing telltale signs of wear and tear on the teeth. Many patients awaken in the morning with jaw or ear pain.

2.Habitual gum chewing or fingernail biting

3.Dental problems and misalignment of the teeth (malocclusion). Patients may complain that it is difficult to find a comfortable bite or that the way their teeth fit together has changed. Chewing on only one side of the jaw can lead to or be a result of TMJ problems.

4.Trauma to the jaws: Previous fractures in the jaw or facial bones can lead to TMJ disorders.

5.Stress frequently leads to unreleased nervous energy. It is very common for people under stress to release this nervous energy by either consciously or unconsciously grinding and clenching their teeth.

6.Occupational tasks such as holding the telephone between the head and shoulder may contribute to TMJ disorders.