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Posts posted by barefut

  1. Dear Lost ~


    What a wonderful person you are to care so deeply for your best friend. I know that she would not want you to be feeling guilty about enjoying your life. And please don't feel guilty about posting your feelings here. It goes to show just how committed you are to your wife.


    Shelley had some wonderful advice. Take it, try it and let us know how it went. I am also curious, as Janey is, about the medical care yor wife is receiving. It is so important to find a scleroderma specialist.


    Hopefully we can hear from your wife someday. Maybe she would enjoy meeting us. I know we would love to meet her.

  2. 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!

  3. 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: )

  4. Hi JJ ~


    In the beginning, my rheumatologist and pulmonologist both suggested 2 years and then a taper off. I have been on 2000mgs for just over 2 1/2 years.


    At the 2 year mark my rheumatologist suggested I stay the course for fear that going off would negatively affect my mobility since that is where I have been having the most problems. However, with my pulmonologist's blessing, I attempted a taper and felt it immediately. rheumatologist was right and I am staying on Cellcept at 2000mgs. I have tolerated it very well and continue to have my bloodwork done every 3 months.


    It is true that transplant patients do take Cellcept for life. So as long as one tolerates it well and has labs checked regularly, I don't see anything wrong with staying on it if it seems to be helping.

  5. Welcome Juanis ~


    I am glad you have found us. This is the best place to be - the greatest people and the most accurate and up-to-date information you will find.


    I am sorry you have your hands full with health problems - as if being a mom to 3 isn't enough to worry about...


    Sounds like you have a good rheumatologist. Stay on top of things and keep us posted.


    Wishing you peace of mind,

  6. Hello Nina Lynn ~


    Yes! I have experienced the exact same pains you describe and also went to ER only to find out my heart was just fine. I also had gallbladder problems and had it removed. I haven't had an episode like it since - but that could be coincidence.


    I have wondered if it was an esophageal spasm?

  7. Hey Peanut ~


    Wishing you continued strength, endurance and stamina. We all can't wait to hear from you and are so grateful for Sara's updates.


    I've been picturing you rooting for our Seahawks. I missed the last game - had to spend the last sunny day of summer at Lake Crescent.


    BUT I'll be in front of the tube this Sunday cheering them on and cheering you on too.




    GO PEANUT!!!

  8. Hi Kelly ~


    Cellcept is an immunosuppressant which works to sort of balance out our over-active immune systems and put any progression of scleroderma in check. It is effective for both skin and lungs.


    I have been on 2000mgs Cellcept since Feb. 06. I have tolerated it very well and it has worked to stabilize my lungs and soften my skin. I am also convinced that without it, I would be much less mobile. My rheumatologist agrees and wants me to stay the course.


    Good luck to you,

  9. Thanks Margaret. I'm going to give it a try. Everything else I've tried makes it hard for me to snap out if it in the morning so I might as well be taking nothing and dealing with the lack of sleep.


    I have tried night time cold meds, over the counter sedatives, amitriptyline and Xanax. Hopefully Melatonin will do the trick. Better ask my doctor first though...

  10. Thanks Jefa and Sweet ~


    After reading up, I'm leaning towards TMJ. I learned a lot of behavorial changes I can make. Being conscience of my daily clenching is one thing and remembering to relax my jaw.


    A visit to my dentist for a custom mouth guard to wear at night is long over due. Though a mouthguard will protect my teeth from damage, I wonder if it would ease the daily pain at all? Maybe if it was cushy...I can imagine a device that might feel good but not sure if such a thing exists. Maybe I need to invent it and make a fortune - HA!

  11. Hey sleepless in Kokomo - Sleepless in Port Townsend here. Been up for hours myself. Hate it. Usually try to get something productive done but too clumsy and foggy headed for anything like housework or bill paying :lol:


    Sorry you are having sleepless nights. I was going to ask if anyone has tried melatonin? (am I spelling that right? Am I even thinking about the right thing? Don't think too clearly without sleep don't 'cha kno'... :P )


    Sweet dreams to you

  12. Good to meet you Debz,


    I am glad to hear you are staying on top of your symptoms and that you have an experienced gastro doctor who is doing the same. He sounds like a keeper - good for you, keepers are hard to find. Sorry to hear your specialist is retiring. Hope you find someone you like as well as your gastro guy.


    Good luck to you with your motility tests. They can be uncomfortable but not painful; hope all turns out alright.

  13. Lizzie~

    I have not heard of labyrinthitis so I did a little research. Thank you for the suggestion. I learned something new and can now be armed with info for the second opinion I intend to get.


    ced ~

    I don't think it's Meniere's because although I have had a few bouts with extreme vertigo, I'm not having that now. Just some mild dizziness now and then and some balance problems - come to think of it I have actually been quite a clutz lately and have the bruises and scrapes to prove it. The other day I answered the phone at work but not before cracking myself in the brow with it :blink: It was like my arm didn't belong to me! :lol: My hips are full of bruises from bumping into the cabinet handles at my teller station - maybe balance/ear related or maybe I've just turned into a major clutz and am looking for something to blame it on :lol:


    Luv and Purr ~

    I think it could very well be jaw related. My dentist has seen the effects of my nocturnal teeth grinding. Lately I catch myself clenching during the day. I will have to read up on TMJ too. I hear crackling when I open and shut my mouth and this dull pain lasts all day with occasional sharp, stabbing pain for good measure. <_<



    Nina ~

    I have not experienced what you describe. I imagine that's no fun!


    Thanks for your replies gals. Love yas.

  14. John and Smurf... :lol:


    Clem, I was hoping Bookworm would post on this. I remember her telling of her experiences.


    Thanks Bookworm and Vee for sharing your experiences. I am so glad it worked so well for you guys.


    Good luck Clem.

  15. Has anyone else experienced the following with their ears?


    sharp pains, deep inside

    dull ache


    loss of balance when closing eyes



    Thought I had an ear infection but doctor at urgent care said no. And no sinus or allergy problems either which leads me to believe a sclero thing?



  16. Hi Karenkaye ~


    Nice to meet you. I am sorry you are having such pain with your shoulders. Mine are stiff and it's hard to raise my arms above my head at times but nothing compared to what you must be going through - ouch! :(


    What have you tried so far for your pain? I'm no doctor but I was going to suggest the same as JJ -moist heat and anti-inflam. pain reliever. I'm sure you have probably tried it all so far.


    Let us know how it goes.