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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 PAULINE

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Posted 14 March 2007 - 04:13 PM

Dear Forum friends,

I have been having alot of pain in my face exspecially threw my cheeks and jaw line and under my chin. It feels like one side of my face is tighening at a little bit at a faster pace then the other but the pain is the same on both sides. It hurts to open my mouth wide enough just to get a spoon of cereal in. Is anyone here having this same thing happening? If so what can be done if anything? Also sometimes if feels like something is pushing or sqeezing on my adams apple and when I feel it ,it is tender to the touch exspecially the top part of my adams apple.

Thanks everyone,



Pauline Huggins
(Diffused withRaynaunds)

#2 barefut

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Posted 14 March 2007 - 08:11 PM

Hi Pauline,

I have a lot of tightening in my face too but mine is not painful. I'm sorry your's is. I also haven't noticed if one side or the other is tighter.

I have noticed though that some days it is tighter than others and it's definately tighter in the mornings. Some days it's a stretch to get my mouth over a sandwich.

Stretching exercises help a little. If you lay a warm moist towel on your face for 5 - 10 minutes first it will be easier, not to mention feel pretty good! :)

Somewhere online - probably here - I read and printed out some face stretching exercises. But you don't have to have instructions. Just do what feels right to get a good stretch but be gentle! I once strained my cheek muscle by giving it too much of a stretch from the inside out, with my finger.

Here is what I remember from those insructions:

1. puff your cheeks out and hold for 5 sec
2. stretch your lips over your teeth
3. push your lips from side to side
4. tilt your head back and open and close your jaw(good adam's apple stretch ;) )
5. stick your tounge out as far as you can and move it side to side
6. open your mouth as wide as you can and hold 5 sec

I also bought a mini vibrating hand massager recomended by my hand therapist, that I use on my face too. It feels good to rest it on my jaw joint and let it vibrate my whole head. (Maybe THAT'S what's wrong with me! :huh: )

I also have tender spots in various places in my body but not my neck. They feel like overly sensitive bruises.

Hope this helps you a little....at least lets you know you're not alone.

Love, Barefut

#3 Margaret

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Posted 15 March 2007 - 01:40 AM

Barefut ,

Thanks for those face exercises. I will have to try them with Gareth since his mouth is has been bothering him so much. Pauline.....it's nice when people post how they feel....it really helps me with understanding Gareth's behaviors.

Take care, Everyone.
Margaret

#4 TJ903

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Posted 15 March 2007 - 03:47 AM

Hope that you can find relief, and this posting helps me as well. My entire face is tight, and I've got severe TMJ. The doctor refuses to operate on me now because of the sclero. I'm going to try the excercises as well. The positive thing for me, is all of those fine lines are disappearing.


Good luck!

#5 Nancy K

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Posted 15 March 2007 - 04:54 AM

Hi Pauline,
The excercises are great! Have same issues with jaw pain. I have been taking a muscle relaxant, Flexiril, for general muscle spasms for years, but recently have found it useful for the facial pain and tightness as well.

Hope you get some relief soon!

Nancy K

#6 PAULINE

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Posted 15 March 2007 - 06:17 AM

DEAR FRIENDS,

THANK YOU SO MUCH FOR THE QUICK RESPONSE. BAREFUT THANKS ALOT FOR THE EXERCISES.. I LAUGHED SO HARD AT THE COMMENT ABOUT THE MESSAGER CAUSEING WHAT WAS WRONG WITH YOU. THANKS FOR THE LAUGH!!!

TJ903 I HAVE TMJ REALLY BAD ALSO, I DIDN'T KNOW THEY HAD SURGERY TO FIX IT BUT I DON'T WANT IT FIXED BAD ENOUGH TO GO UNDER THE KNIFE( HA HA).

MARGARET ... I HAVE BEEN READING ALOT ABOUT GARETH TO THE POST HOW OLD IS YOUR LITTLE GUY I DON'T REMEMBER THE AGE? DID YOU FIND OUT WHAT WAS CAUSEING TO SWAT AT THE AIR? I HOPE HE IS DOING MUCH BETTER (BLESS HIS HEART)..

NANCY' HOW LONG HAVE YOU HAD THE FACIAL PAIN? I JUST STARTED WITH IT TWO MONTHS AGO. THE DOWN SIDE OF THIS IS I CAN KNOW LONGER CHEW GUM IT JUST HURTS MY MUSCLES IN MY FACE TO MUCH. AND I LOVED CHEWING GUM ALL THE TIME.

THANKS AGAIN TO ALL OF YOU.

HUGS,
PAULINE HUGGINS

#7 Margaret

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Posted 15 March 2007 - 09:30 AM

Hi Pauline ,

Gareth is 18 years old....not a little guy....Just very few words due to the DS/Autism. We are assuming the hallucinations were from a severe left ear infection. His primary care physician found it Mon. am and put him on meds. Late Tues am, after a nap, I noticed all the blood and puss coming from that ear....he probably ruptured it again. He does not tell me when or where he hurts....everything comes out in behaviors. He's acting OK today. The other possibility for the hallucinations is the Prilosec. He was switched to that from the Nexium 3 days before the hallucinations started. One of the rare side effects of Prilosec are hallucinations. His gastro doctor said to drop it immediately when I talked to him on Mon. Maybe down the road, after the ear is OK, we will try it again.
Take care, Everyone.
Margaret

#8 Nancy K

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Posted 15 March 2007 - 11:43 AM

Hi again Pauline! I've had the jaw pain since Aug. 06, but it comes and goes. Chewing does make it worse, and I love the gum too, but often have to refrain.

Hope you can get some relief!

Nancy K.

#9 Sheryl

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Posted 15 March 2007 - 01:25 PM

I also have TMJ. I have had severe pain in teeth and triminal nuralgia. Spelling is probably wrong. My dentist made an upper guard / plate for my teeth. He said, I may be gritting my teeth while sleeping. It would help eveviate TMJ. So, I have used the guard for about 9 months I believe. I have only had one day of pain since using my guard. I went two days without it when I was out of town. Bam! Pain and Pills. It may be worth a try. I am now happy to have been without severe facial pain for the past 8 months or so. Oh! My guard has a ton of teeth scraches in it. So clamping down on my teeth must have been causing alot of my pain. Good luck. Ask your dentist before havinf any surgery. Sheryl
Strength and Warmth,
Sheryl

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#10 sfc4917

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Posted 16 March 2007 - 04:15 AM

Hi,
This is my first time on the forum. I just signed up and registered. Your comment about the jaw pain sounds familiar to me. Everytime I chew gum (love to chew gum) I start having jaw pain. Never associated it to the Scleroderma, I am recently diagnoised and I know very little about the disease. I have had Raynauds for about 2 years and it has recently gotten much worse. Seems like most anything triggers it. The doctor says I have the CREST version. I know little about the condition so any suggestions and comments are welcome. I don't know what symtoms to look for really-it is really scary. :o

#11 janey

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Posted 16 March 2007 - 05:06 AM

Pauline,
I too suffered from jaw, cheek and facial pain during year one. I believe that all of this is tied to a common symptom of scleroderma called microstomia or small mouth. It hurt to chew even though the bites were really tiny because they had to be small to get them into my mouth. Also, I believe it's what caused the deep lines around my lips. I did do exercises and the one's that Barefut provided are great! I used I lot of those. After diagnoses and starting on medications, this symptom eventually went away and my mouth opening became normal again.

What interesting is that I've been off immunosuppresants for 2 months now and I'm noticing that the small mouth symptoms are starting to come back. UGH!

Big Hugs,
Janey Willis
ISN Support Specialist
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