Mixed Connective Tissue Disease Awarenes
Hello and welcome to the MCTDA forum!
This is a forum for MCTD sufferers, the first of its kind! (to my knowledge).
To be part of our community please click on the register button below.
If you are already a member please login.
For more information on Mixed Connective Tissue Disease, check out the website:
www.mctdaware.co.uk
Please note: this is the first time I have created a forum so if there are any bugs please report them asap so I can fix them. Contact me via email:
mctda@hotmail.co.uk
I hope you find the help, support and information you need and I wish you to be happy and flare free :-)
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New to Group

Thu May 21, 2015 12:12 pm by leeG

HI All, thanks for letting me join, i was diagnosed two yrs ago, altho had symptoms for much longer and now wonder if the MCTD started in my 30s when i was diagnosed with chronic fatigue. now also have raynauds, hashimoto's, blepharitis (sp?), asthma, and multiple allergies, Plaquinel has amazing effects until i had a severe reaction, and now on Atabrine (quinacrine) but its not as effective. …

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New to group, New to disease

Tue Aug 26, 2014 5:58 am by MissDaisy

Hello,
I am a 36 year old female with 3 boys, ages 4-9, and I work as a 911 Dispatcher. I started having symptoms about 3 years ago starting with lumbar pain. I put it off for well over a year thinking it was just over-exertion. When I couldnt take the pain anymore as it was constant, and even just turning my head to the side caused severe pain. I got to the point that standing, sitting, and …

Comments: 1

How much pain before accepting medication?

Fri Sep 19, 2014 9:46 pm by josephine landau

Hi - My names Jo, I'm 42.
I was diagnosed in January of this year with MCTD, after a year or so of growing symptoms (Reynaulds, aching joints etc) I am a working mum with 2 boys, so my days are fairly hectic.
I take B12 injections for fatigue, Levothyroxine for low thyroid and Tegretol for an epileptic seizure I had 10 years ago -So I was reluctant to add to my drugs list and I declined any …

Comments: 0

Not yet diagnosed teen from Finland

Thu Mar 27, 2014 6:12 am by finnishgirl

Hi everyone!

I was happily suprised when I found all this great stuff for us MCTD patients! And hope to get to know some people with this illness. Because there's not a lot of stuff for us in Finland.

I'm a 15-years-old girl from Finland. I still haven't got a diagnosis for MCTD, but my rheuma specialist has suggested it after many years of different tests. And it seems to be logical, I have …

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Another Australian story

Fri Nov 29, 2013 9:50 am by Ozzie1954

First of all, it is so good to find a forum with people who have been going through the same issues. I was doing a search on earache/jaw pain which is afflicting me this morning and found this forum.

My story begins in 1987 but probably goes back a lot further because of other issues that surfaced in my teens. It started after I had a bout of the flu, went back to work where I was handling …

Comments: 1

New from California.

Fri Jul 26, 2013 10:28 pm by mollyingrid92

Hello! My name is Molly, 20 years old, California resident. At the beginning of the 2013 year I noticed I was having really bad knee pains that would last for a while. When I finally went to see my doctor, he moved my leg around to see how my knee was working. Then he did this weird on where he would put a hand flat on the side of my knee and with the other hand push on the opposite side of my …

Comments: 8

This is all new!

Thu Apr 18, 2013 2:35 am by Admin

Ive never run or created a forum before so there may be some bugs, please let me know as soon as possible so I can correct them! I hope you find it easy to use!
Admin Very Happy

Comments: 9

Hi from Australia

Tue Apr 30, 2013 12:46 pm by gorillagirl

Hi everyone Very Happy

A brief bio. Female, 45, Hashimoto's since young. Started with flare ups after activity, sore joints and muscles, feeling sick, bloods abnormal and high CRP and ESR, symptoms pointed to lupus. Doctor nightmare for some years, the usual, it's just your thyroid and you have fibro, maybe you have narcolepsy, others haven things worse than you blah blah blah.

Found a good GP, …

Comments: 8

Newbie, new to the dx, but not to the symptoms

Tue Apr 30, 2013 2:20 pm by Lenorekitty75

Hello Everyone ! Smile

Just came across this site today. Which is odd because I've been googling MCTD for months now. It's nice to know there are others out there in the world who could relate to what has become my life. Although I have frequented lupus and MS boards over the last 9 yrs and had wonderful support.

I am Christina, 37...mum of 3 the youngest is 3 and the oldest is 14. The Dr's have …

Comments: 4

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» New to Group
Thu May 21, 2015 12:12 pm by leeG

» Flare up PLEASE help!
Sat Feb 21, 2015 1:48 pm by aceequine7

» Help with getting a doctor to understand...
Fri Oct 31, 2014 6:16 am by nancehg

» Pain management/plaquenil vision issues
Fri Oct 31, 2014 5:49 am by nancehg

» New to group, New to disease
Fri Oct 31, 2014 5:37 am by nancehg

» Ear ache/Jaw pain - Anyone else?
Sat Oct 11, 2014 8:39 pm by finnishgirl

» How much pain before accepting medication?
Fri Sep 19, 2014 9:46 pm by josephine landau

» Burning sensation and peeling of skin on hands and feet
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Ear ache/Jaw pain - Anyone else?

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Ear ache/Jaw pain - Anyone else?

Post by kimmieg33 on Sat Apr 20, 2013 4:14 am

I have a question and I'm not sure where to post it but here goes.
I have had an earache and pain above the ear on my skull that occasionally radiates down into my jaw for 6 months or so. My daughter said it's closer to a year. I didn't notice it as much when I was bedridden with pain. Now that I've been diagnosed and medication has improved the quality of my life, it is noticeable. The ear aches most of the time and the pain above it is a sharp stabbing pain. I wear my sunglasses cockeyed so they don't sit on that spot.
I went and had it checked, they said it's not an infection. Just a little bit of redness near the eardrum.
Anyway, is this something anyone has any information about?
Thanks
Kim


Last edited by Admin on Thu Apr 25, 2013 12:48 am; edited 1 time in total (Reason for editing : Adding proper subject to title for easier searching)

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Re: Ear ache/Jaw pain - Anyone else?

Post by Katkat on Mon Apr 22, 2013 12:15 pm

Hi Kim,

I often get stabbing pains in my ear, feels like a really bad ear infection, but usually goes away within half an hour.
I get TMJ pain as well, and i think that perhaps its all related. I also grind my teeth which doesnt help, but i cant wear my mouthguard because it hurts my jaw!!

Hopefully you find some relief soon. I often heat up a wheat bag and lie with my sore ear on it...the steam or heat seems to help! Smile
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Re: Ear ache/Jaw pain - Anyone else?

Post by Lisa Douglas on Mon Apr 22, 2013 2:49 pm

I get knife/ice pick type pains starting in my ears and working its way up to the top of my head... they go away and no knows what it is. It kind of feels like my body telling me something, like slow down! Like when something stresses me completely out, this weird but now really painful feeling starts in my head and works its way down... Smile

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Re: Ear ache/Jaw pain - Anyone else?

Post by StacieicatS on Mon Apr 22, 2013 5:09 pm

I have terrible inner ear pain in my right ear and it has been on and off again for years. I went to an ear nose and throat specialist who ruled out thyroid cancer and then we decided it was TMJ. I paid almost $1,000 to have a mouthpiece made for my mouth but stopped wearing it because it isn't comfortable and makes it difficult for people to understand what I am saying. I also didn't notice any improvement when I only wore it at night for several weeks.
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Re: Ear ache/Jaw pain - Anyone else?

Post by MamaLolo on Tue Apr 23, 2013 12:24 pm

Hmmm, I have just this week started having ear pain and this weird staticky sound in my left ear. It's not very loud, just enough to drive me insane, lol. Hope someone comes along with some answers... I just blame anything and everything on this lovely thing called MCTD...

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Re: Ear ache/Jaw pain - Anyone else?

Post by Admin on Wed Apr 24, 2013 11:50 pm

Hi Kimmieg33,
It's so funny you mention this because about a month ago I had a really bad ear infection (or so I thought) & I felt sharp pains in my ear & down to my jaw, just like you, but it was also affecting my equilibrium. I kept getting really bad vertigo & being sick through the dizziness. I brushed it off thinking it was probably just an ear infection but then someone randomly emailed me about it saying they were having the same symptoms. Now after reading you guy's comments I'm thinking there defo must be a connection!?
I think I'm going to bring it up with the doctor next & ask on facebook. Idea
I have repinned this post to symptoms which may be related to MCTD, until confirmation there is a connection with MCTD, trying to spread the topics out a bit lol!


Last edited by Admin on Thu Apr 25, 2013 1:02 am; edited 2 times in total (Reason for editing : Condensing down my posts)

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Re: Ear ache/Jaw pain - Anyone else?

Post by kimmieg33 on Thu Apr 25, 2013 12:05 pm

It's been reassuring to hear from others that they have experienced something similar. I need to make an appt with my rheumy doc anyway so I think I'll ask about it. The good news about it is that when I'm in pain from it, that means I'm not in other more excruciating pain Laughing
I will check in with the Facebook page and see what People are saying

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Re: Ear ache/Jaw pain - Anyone else?

Post by Karenlu on Thu Apr 25, 2013 5:10 pm

Lisa douglas that pain can be from a migraine. There are different types of migraines. I used to get a stabbing pain in the ear cartilidge just for a couple seconds very painful. I found out that was migraine. I've had the same kind of pain you're talking about too. Have you talked to a migraine specialist? Also someone was talking about ear pian and skull pain that sounded like tmj. It's all tied in together. The ear, skull, jaw. I'm too tired to go into detail, I hope that is a starting point at least. Xx

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Re: Ear ache/Jaw pain - Anyone else?

Post by Peej on Fri Jun 28, 2013 12:35 am

Hello all. I have been reading the posts about ear and jaw pain. I developed severe pain in my right ear, traveling down to my jaw. I had a checkup at the dentists fearing it was a bad molar...but it wasn't. My rheumy found a connection between MCTD and inflammation of the facial nerve...sometimes called "tic douloureux". It can be treated with meds like phenytoin (Dilantin), gabapentin (Neurontin), lamotrigine (Lamictal), topiramate (Topamax), and valproic acid (Depakene, Depakote). Trigeminal neuralgia causes episodes of sudden, intense facial pain that usually last for two minutes or less. According to Drugs.com "Trigeminal Neuralgia (Tic Douloureux) is a painful disorder of a nerve in the face called the trigeminal nerve or fifth cranial nerve.  In most cases, the pain is described as excruciating, and its quality is "sharp," "stabbing," "piercing," "burning," "like lightning" or "like an electric shock." In most cases, only one side of the face is affected." This is what I have. Discuss it with your rheumy - there are treatments available. My first episode of pain was absolutely excruciating, brought me to my knees...better now.

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Re: Ear ache/Jaw pain - Anyone else?

Post by Ozzie1954 on Fri Nov 29, 2013 10:17 am

kimmieg33 wrote:I have a question and I'm not sure where to post it but here goes.
I have had an earache and pain above the ear on my skull that occasionally radiates down into my jaw for 6 months or so. My daughter said it's closer to a year. I didn't notice it as much when I was bedridden with pain. Now that I've been diagnosed and medication has improved the quality of my life, it is noticeable. The ear aches most of the time and the pain above it is a sharp stabbing pain. I wear my sunglasses cockeyed so they don't sit on that spot.
I went and had it checked, they said it's not an infection. Just a little bit of redness near the eardrum.
Anyway, is this something anyone has any information about?
Thanks
Kim
Yes, yes and Yes

I have had this over a period of time. I have this issue at the present time. It is how I found this forum.

I have been to a doctor and had the same response.

I am using a device that was provided by my dentist. I was at the stage where I did not need to wear it during the day, but suddenly I had some issues.

Mine is ear/jaw and it hurts a lot and it is happening at the present time. The Panadol hardly touches the discomfort. Sad 

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Re: Ear ache/Jaw pain - Anyone else?

Post by Ozzie1954 on Mon Dec 02, 2013 8:24 am

Just for an update on this ear/jaw thing. I have just had an episode and it was excruciating whilst it lasted.
I am not finished with it, but things are a lot better so far this morning.

Here is what I discovered during the week after it started (again!!). First of all there is a connection to the ligament that runs along the neck. The right side of my neck was a little bit stiff. What I did to ease the situation was to commence some neck stretches. It was hurting at first but I found that once I got through the initial hurt my neck felt a lot less stiff and the jaw/ear began to relax a little bit.

Second a did a rather weird exercise of my jaw by moving the lower jaw to the left. Again, when I began it was hurting but I pushed through that barrier.

I took some strong pain relief being Mersyndol which has codeine and a calmative. This is best taken at night because one gets very sleepy when taken during the daytime. However, the calmative brings a lot of relief.

I am wearing my dental appliance because it brings relief. I take it out if I am eating or if I am talking to someone. Otherwise I use it. I was hoping to get to the point of only needing it at night but due to this flare I am using it again in the daytime. Something I noticed is that the flare itself began with a bit of a headache, and that by wearing the dental device I was able to manage the headache without taking any Panadol... but things got a lot worse when my ear/jaw was hurting so much.

This morning when I woke up my ear felt clogged like there was water inside. I gently pull my ear so that I can hear better Sad . At the same time the flare seems to have reduced and I am feeling less discomfort.

I try to not use the p word. For me the word pain is a 4 letter word that must not be repeated. I am using a mind trick in order to not allow my brain to magnify the discomfort that I am experiencing. My current Rheumy understands this point, and ditto for Dr. Perera who was my Rheumy in Canberra. They encourage me to use alternative language to explain what is happening.

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Re: Ear ache/Jaw pain - Anyone else?

Post by finnishgirl on Fri Mar 28, 2014 2:41 am

I have something like this as well. My ear feels clogged all the time, even when I've been and had it washed. Some times I get these pains in it, and it makes me go mad. I've never even thought that this might be connected to anything..

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Re: Ear ache/Jaw pain - Anyone else?

Post by MissDaisy on Tue Aug 26, 2014 7:02 am

I have had several bouts of TMJ the past several years...the more I look to the past, the more I think some things I've experienced were really related to this, and I'm still not fully diagnosed Shocked
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Re: Ear ache/Jaw pain - Anyone else?

Post by finnishgirl on Sat Oct 11, 2014 8:39 pm

So this is an actual thing?! Surprised

I've had these stabbing pains in my ears+jaw since forever. My ears feel clogged all the time even after having them rinsed. It's like I have an ear inflammation but when a doctor looks at it they see nothing wrong.

My right ear is worse with these stabbing pains but left one does this too. I've had a jaw MRI and turns out I have erosion and inflammation in my left jaw joint, so that pain could be radiating in my left ear. But my right jaw joint is ok. So I have a theory that this ear pain, whatever it is, is radiating to my jaw joint.

I read a medical journal which said that approx 30-50% of MCTD-patients get jaw joint erosion. Don't know if that's true or not but it's something to look into.

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