A couple questions?

Does anyone have fringers that swell?
Does cold weather bother you? Lower barometer ?
Muscle weakness,Hurt to put curlers in my hair,walk a long time?

Yes, yes and yes…but, take it easy and begin to
spend quiet time praying or meditating or whatever you
need to make you calm. Listen to your favorite music
and relax. It helps me. God bless you. I’ll pray
for you and us all. Sandy (Netqueen9)

Parris said:
“Does anyone have fringers that swell?
Does cold weather bother you? Lower barometer ?
Muscle weakness,Hurt to put curlers in my hair,walk a long time?”

Parris, all of this is pretty typical in scleroderma. My fingers swell every morning and evening, but I’ve had the disease for 13 years. In the beginning, I couldn’t wear my rings because it was constant. Cold weather always bothers us because of Raynaud’s attacks, and I tend to get achiness in joints like fingers or the joints with osteoarthritis when there’s “weather.” Today it’s my fingers, which have been contracted since almost day 1. Sometimes it feels if I could just stretch them out it would feel better!

Muscle weakness is two-headed in scleroderma. There’s been a “mild” kind recognized - can’t find the article right now but will post it when I do. But there is another kind, called polymyositis, that is severe but responds well to prednisone for treatment. Be sure to talk to your doc about your weakness so that s/he can determine the difference. Anemia is not uncommon in scleroderma and that can sure make you weak, so definitely let your doc know.

Thanks for responding I have tried both of those Rx,they helped for a while but then after 2 to months they no longer work.My Dr says i have sclerderma and also fibromyiglia. I am goin for my yearly test Heart.lung. kidneys in June. I think my disease has progressed. When I go to get out of bed it takes all my engery, some days i feel like I 100 years old. I want to get rind of the pain and live my life as I did before!!! Thanks for letting me vent.


Danette: God, I hope you do believe in Him, never
promised us a “rose garden” and I think what we all
need to do is deal with what we have in this Journey
and know that prayers ARE answered…I just had a
biopsy that might result in another cancer on top of
all the rest. I’m putting one foot in front of the
other and telling God to help me make it through to
the NEXT Journey which promises to be better. Take
care. I’ll pray for you Danette. Sandy

Yes, Yes and yes! But, we’re still here and tomorrow
someone just might find something to help us. Say a
prayer and I’ll do the same for you. Sandy (Netqueen9)

My heart goes out to you!! I remember those days of laying in bed thinking your not going to get through this…you will…you will!! It goes through phases, just hang on. I will pray for you also, you are doing the best you can just remember that. Focus on what you love. Your family, kids etc?? For me ;I believe it was Gods way of bringing something forward I needed to deal with. I’m a pretty good control freak (LOL!!) and I’ve learned to let it go!! Take control of your thoughts, your words…I believe it all affects you. I have had success with diet…minimal excercise. I found on the internet “defeating scleroderma”, which gave me a list of foods I should and shouldn’t be eating. It has been a god send!!! It has to do with the acid and alkaline in your body and blood. My swelling is VERY little…I have knuckles!!! Hang on Danette…we are all here if you need us!!!
God Bless.

Danette, I hate the fatigue! There are so many things you can overcome with meds or just plain stubborness, but the fatigue just takes the wind out of your sails.

For me, the only thing that has helped is giving into it. Conserve your energy for things that really matter - like lunch with friends vs. vacuuming the living room! If you can’t get up the energy to go out, your true friends will understand and bring you lunch. Don’t fight it - let them help. Sometimes our friends and family feel very helpless against this disease, so they love the opportunity to help in SOME way. I know I fought this for a long time because of stubborn “independence,” only to realize we do all depend on each other and sometimes you have to take more than give. You can pay them back later when you’re feeling more like it.

Glad to know you’ve got a doc who’s on top of the yearly testing as well as checking for kidney problems. It’s a little frightening to know there are still some health care professionals out there not up to speed on scleroderma, but not a total surprise.