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#1 georgette

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Posted 19 September 2008 - 12:42 PM

Does anyone else have their scleroderma in their face? Apart from all the skin tightening the facial muscles under the skin hurt even when I smile, the muscles around my eyes, cheeks, forehead and around my mouth are tight and painful when I move them, also my nose and the back of the throat always feels like I have an infection and is very dry but if I rest it settles. My eyes are also effected (shrinking optic nerves) even though I am 55 years old it looks as though I have just had a $30,000 neck and face lift , every time people see me the first thing they say is, wow your looking so well!!!! I havent seen ya look this good etc !!!!

I have tried to explain it to them but I guess they don't get it, they just think I am doing good ...... I have diffuse sclero but still no treatment as the rheumatologist I have been seeing for the past year has been stalling sending me for this test and that test and waiting for up to 6 weeks in between these tests, its only been recently when he admitted he wasn't sure how to treat me so has no referred me on. So all that time wasted, ugh. So has anyone else got the symptoms in the face nose and throat?

Hugs,

georgette

#2 canon

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Posted 19 September 2008 - 05:34 PM

Oh Georgette I am so sorry about what is happening to you. I don't know where you live but can you look up rheumatologist on line in you area? There is medicine that supposedly slows down the process or at least may help. Don't waste any more time with your current doctor if he is not willing to find out how to help you especially with diffuse. He should at least know someone else that could help. We are so dependent on doctors but they need to be good.

I don't have diffuse so skin tightening on my face has just been my top lip with all the wrinkles and telangiectasias. That just happened this past year. Limited is so different than diffuse. People always tell me I look great too with my red cheeks, stretched out, wrinkled lips with red spots, red, white and blue, fat tight bent fingers, red splotchy legs, with swollen ankles and only penciled missing eyebrows. It must be just the red cheeks that they see. Please try to find a different doctor. Muster up that strength you'll need.

Keep us posted and take care,

Judy
A happy heart is good medicine.

#3 georgette

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Posted 19 September 2008 - 07:43 PM

hi judy thanks for your reply , my mistake I forgot to make mention that I have found a new sclero specialest but the appointment is not until 27th november !! so I just have to tread water until then , I dont know a great deal about sclero so I am trying to make the effort to learn more , from all the symptoms I have the worst is the face,eyes and nose ,it can really get to me some days ,but we all have our own cross to bare dont we ? thanks again hugs georgette

#4 Amanda Thorpe

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Posted 19 September 2008 - 08:08 PM

Hello Georgette

It's unacceptable :angry: that a year after diagnosis of diffuse SSc that you have had no treatment. Judy's right ditch the doctor. You can't simply wait on him whilst your symptoms are clearly progressing.

Tests have to be carried out of course but that is not a reason to do nothing. I started treatment 2 months after diagnosis and that's only because I was diagnosed then eventually treated by different rhuematologists.

I believe there is a link on this site showing sclero experts in different areas, it may be worth contacting the one near you.

I do hope you get some results but you may have to become a "difficult" patient to kick start your current doctor. He wouldn't sit on his hands for a year if you had cancer and that's mostly cureable, sclero is not at all.

Take care.

Amanda
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#5 lizzie

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Posted 19 September 2008 - 10:20 PM

Hi Georgette, I too have skin tightening on my face, I can see changes every day when I look in the mirror . The naso-labial fold lines have disappeared from round my nose, the area under my eyes and around my mouth feels tight and my eyes are permanently red rimmed and sore (what a pretty sight!). I also have the dry throat /nose.
I do facial stretching exercises and that helps, but if I haven't moved my face muscles for a period of time e.g when I've been asleep or have been concentrating on work they are very tight and stiff. At the moment my rheumatologist considers that I am somewhere between limited and diffuse SSc, but is treating as if diffuse. I was given the choice of have cyclophosphamide or CellCept. I opted for the CellCept and have now been taking it for 3 weeks. There is obviously no guarantee that it will do anything for the skin tightening - but at least my rheumatologist is trying! I'm really sorry that you have had such a seemingly incompetent Dr and hope that the new one you have been referred to starts to take some action.
Lizzie



#6 Peggy

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Posted 20 September 2008 - 06:49 AM

I'm alot like Lizzie in that I take Cellcept after having to quit taking the cyclophosphamide as it was attacking my bladder and kidneys and I got cystitis of the kidneys. I too get the same comments as you do on how we look. That's all I hear is how good I look. I'd like to tell them I wish I felt as good as you say I look but I don't. I guess we are getting free face lifts. I was at the ER last weekend and the visiting doctor immediately could tell I had sclero by looking at my face and mouth. I'm really tight around my mouth and my eyes. I haven't been to the eye doctor lately to see if it's affecting my vision and I guess I'm due to go in again. I really hope you get some good answers and directions when you go in. It's too important to not get going on a treatment plan and to have "everything" checked out! I wish you good luck at your appointment and please keep us posted on what you find out.

Warm hugs,

Peggy



#7 canon

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Posted 20 September 2008 - 10:07 AM

Hey Georgette,

You do have the exercises we are supposed to be doing for face and body right? If you do not have them let me know and I'll get you a copy OK?

Judy
A happy heart is good medicine.

#8 georgette

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Posted 20 September 2008 - 10:56 AM

thanks so much ladies for responding to my question , I was sort of relieved to find that others have sclero symptoms in the face not just the skin , I couldn't find anything written on sclero in the nose and facial muscles ,my eyes were the first sign I had of scleroderma ,eye specialest picked it up ,but I have to say my nose gives me real grief the bone and that gristle bit ache constantly and so so so dry and I get so easily sun burned and wind burned ,..... although I have sclero symptoms over all the body I find the symptoms in the face are not easy to ignore as the aches and pains from the neck down , the only relief I get from the face is a shower ,I just stand under the shower with the water running over my whole face ,it plays havoc on my body skin but ohhhhh what a relief to my face ........ so when I eventually get to this new sclero specialest and get on meds will these meds lesson the discomfort I have or will they take away these symptoms ? hugs georgette[size=4]

#9 georgette

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Posted 20 September 2008 - 11:09 AM

hi , amanda , I so get what your saying about "becoming a difficult ' patient , but unfortunatly here there are so few specialests for the amount of patients that if you become 'difficult' they just tell you to go elsewhere , so they hold the power ya have to put up with them, I suspected for a long time that this rhumitoligist was stalling ,he was avoiding my questions ,and just always doing tests ,which is fine BUT after each test he would say come back in 6 weeks !!!! thats where all the time has gone mean while more and more symptoms are surfacing ,and I just feel so so unwell ,if I asked my local doctor questions about scleroderma his reply was always ask your specialest dear , but the specialest was ducking and weaving so much I couldn't get anything out of him so I have felt very alone over this past year ,the only help I got was reading stuff from this forum , so I am so glad someone took the time and effort to set this site up other wise I would be so 'in the dark' thank you all hugs georgie

#10 razz

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Posted 21 September 2008 - 05:39 AM

Georgette,

I agree you should begin some form of treatment for your current symptoms, especially if you've already been diagnosed with scleroderma. Your rheumatologist should have told you from the beginning he doesn't know how or is unsure about treating your condition. He then should have researched or consulted with other rheumatologists for suggestions on how to treat you. Time is of the essense. My first rheumatologist took a wait and see stance. After six months and my health deteriorating quickly, I didn't hesitate to drop him and search for another rheumatologist who would have an aggressive attitude towards this disease. Diffused scleroderma is not a disease to sit and wait it out. In the beginning the symptoms may appear slight and gradual but this is the crucial time where your rheumatologist can prevent further damage and progression by prescribing a plan of treatment. Don't worry about hurting your doctor's feelings, this is your life. If you are limited in choices of doctors then you could suggest medications and treatments, have a discussion about the pros and cons, then as a team monitor your health and make adjustments to your medications as necessary. Personally I would find someone else. You shouldn't have to do his work for him. He is getting paid for basically doing nothing. I hope I don't sound too critical but if I had the proper treatment when I was first diagnosed my present condition would have been so much better.

As far as having scleroderma in my face, every part of my face has been affected. My eyes are rounder, my nose is skinnier, mouth smaller, my teeth have moved and I have a slight overbite. You're right about not having any wrinkles. My check bones are more pronounced, lashes are shorter, and eyebrows have to be pencilled in. I can manage to hold the make-up pencils with my fingers and with a surgeon's precision make eyebrows appear. For the most part, my eyes aren't too dry and I do need glasses. I've been putting off an appointment with the opthamologist. :rolleyes:

The people and information on this forum are great for motivation and support. This is where I come for reassurance and comfort and I'm reminded that I'm not alone in this.

Maybe you can get an earlier appointment with your rheumatologist or if you decide to switch doctors, I'm sure someone here can offer suggestions on finding someone in your area. Once you get on the right medication(s) you should start feeling better and your symptoms either subside or stabilize.

Hugs,
Razz

:)






For people to comment on your fantastic facelift, I wonder if they knew what you have, maybe they wouldn't say that to you.
Live well, Laugh often, Love much

#11 Amanda Thorpe

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Posted 21 September 2008 - 11:06 AM

Oh Georgie I didn't know your doctors could drop you, that's outrageous, particularly when they're doing squat and getting paid for it! No wonder all the smart kids in the playground wanted to be doctors.

It's rotten that you feel so ill, know what ails you and yet still await relief.

Your health is worth perservering for, do whatever works for you and keep us informed. You are part of what makes this forum unique, someone prepared to share their difficulties with others.

Take care.

Amanda
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#12 barefut

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Posted 21 September 2008 - 06:22 PM

Hi Georgette ~

Sclero has affected my face too: tight, sensitive, shiny skin, small mouth, aching jaw....

However, as I have mentioned in another post, Cellcept has worked to soften the skin on my hands and my rheumatologist said she could tell my face has become more supple over the past 2 1/2 years (although I really can't tell a difference in my face)

I hope you can find a specialist very soon and ask about Cellcept. In the meantime, try some gentle facial stretching exercises: :o :angry: <_< :P -

Basically, whatever feels good. It's best to do them in the shower with the warm water running over your face. Be gentle and careful because you can strain yourself (I speak from experience :blink: )

#13 georgette

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Posted 21 September 2008 - 11:18 PM

thankyou you all for your encouraging kind responses , I didn't know you had to do the skin stretching on the face and body so Id bettr get to and do some my torso skin is getting so tight that if I lean forward in the chair it feels like the skin is tearing and both my arms/hands skin is so tight I can't rotate the wrist or straighten my arms , so with these exercises do I do them until it starts to feel like the skin is tearing or do I stop before that point ? I might start by doing them in the shower as suggested by judy ,wow thanks so much for your input , I dont feel quite so alone ,I just can't get any anwsers or action from the medical field yet when you turn to the internet the doctors get so angry ,they tell you to STAY OFF the internet but if it werent for the net , I wouldnt have a clue what scleroderma was ,as the doctors tell you zilch ..... I am so so over doctors grrrrrr ....thanks again hugs georgette

#14 rlbrussell

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Posted 24 September 2008 - 06:44 PM

I too have a lot of skin involvement on my face. Initially, the changes were positive. It lifted my eyes and my skin looked smoother, but now it just looks like plastic surgery gone bad. I have pain in all of my facial bones as well. I take medication for the pain and it works really well for me.

Rosa
Rosa
Diffuse Sclero
dx Jan 2006

#15 faith

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Posted 25 September 2008 - 04:45 PM

My husband too, he was diagnosed with Diffuse sclero in Feb 2008...every area in his face hurts...his face changed to very shiny, his mouth too small, he always had a beautiful smile and I always admired his beautiful lips, I told him that I want my daughter to have his lips!! he lost those beautiful lips....but he didn't lose his inside beauty..

I have a good tip, it worked for my husband...you all know those sticks at the Dr's office (they put in your mouth to check your throat)...a dentist suggested that my husband needs to excercise his jaws by putting as much stcks as he can in his mouth(put the sticks on top of each other)...first time, he was able to put 6 sticks...then, a week later, they became 8 sticks...and they are increasing, and his mouth is opening bigger and bigger.

Try it, buy the sticks from a pharmacy, and put them one on the top of the other, and put them inside your mouth and bite on them for as long as you can...maybe while watching TV...this will keep your mouth open for a long time and will let the jaw muscle works....it worked for my husband..

I hope this helps

#16 barefut

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Posted 25 September 2008 - 05:15 PM

Faith ~

Thank you for that great idea! I am going to do it. I have in mind a device that I've been wanting to invent to do just what you suggested with the sticks. Sticks are better.


Georgette ~ By all means don't stretch until it feels like your skin is tearing - that sounds horrible! Only stretch until you feel a gentle resistance then hold it for a few seconds then relax and massage the area. Start slowly and very gently and be patient if it feels like you're not making much progress. Stretching morning and night everyday will soon make a difference.

Sometimes I can actually tell visually when I haven't stretched my face for awhile so I know it does help. Try Faith's stick idea!