Scleroderma & Raynaud's UK (SRUK)
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Any suggestions on how to not be paralyzed with fear while your waiting for God only knows what will happen to you?

The docters say I have CREST and my Raynauds get worse and worse every winter. How am I suppose to get a job with everything has to be done with your hands? I have little disability now of about 690 a month and I cant get anymore. If my partner dies before me I am going to be homeless. I have max school loans because I didn't know this thing is going to get worse and the only thing I can of to do is be a high school special ed teacher. Today I am suppose tp be packing to move to another place and I am just paralyzed with dread.

9 Replies

I try to take each day as it comes, one day at a time. The future is uncertain and scary, tomorrow less so. I think we shouldn't waste the good days worrying about things outside of our immediate control. I think the best way is to deal with each challenge as it arises.

Good luck with the move.


Hear hear! to Roamer above. You say you're getting £690 a month in disability benefits already, lucky you. I get less than £300. not sure where you're living?? I managed, with great difficulty, to continue working as a self-employed ballet teacher up until this year when my breathing suddenly deteriorated to the point that I have had to make the decision to stop. I apparently should be able to claim ESA. I have a feeling this wont be easy by the evidence I've had so far, but when it is sorted it will mean with my other benefits I will be able to get by. You should be able to do the same, IF that time comes. It is a big if and you really mustn't waste your life worrying, there'll be plenty of time for that when it does become life- threatening, and that is usually only when lungs and/or heart become involved.x


I am a teacher with CREST as well. I do not have ulcers yet but I do have lots of calcium deposits that grow on my fingers making them quite painful. It has been troublesome and annoying, but I can still function. I just try to make the best of it. I try to write very little and do most of my work on the computer (less painful). I have very little range of motion in the morning, but I ask my students to help me a lot. They know and understand my difficulties and are willing to help out. Not sure how that will work out with special ed, but hopefully you can find a way to make it work. Hang in there!!!


It is difficult not to stress about the future, when I was diagnosised with CREST with Raynauds about 12 years ago my doc made me feel it was a death sentence. Today I am functioning well. I was denied disability because I had waited to long to apply so it is good that you have that. First, I have found that Scleroderma is a disease of one meaning no two people experience it the same way. Yes there are similarities but differences which is both good news and bad because we all want to know exactly how this is going to effect our lives. Second, stress makes the disease worse and stress especially affects raynauds.

Find a support group near you or start one which is what I did. When I was diagnosised with breast cancer 5 yrs ago it taught me to live in the moment. I am 5 years cancer free. Mediation helps, yoga has been wonderful, take care of yourself in general so your life is less stressful and complicated. Keeping a journal to just get rid of all my fears so I don't take them into the day has helped. I have found if I keep the core of my body warm I have Raynauds less and I carry those disposable hand warmers with me everywhere. I try to prevent it rather than treat it.

Most of all I have changed the way I think about Scleroderma it is part of my life it is not my whole life. Find what works for you. Hope this is helpful.

With warmest regards,

Patti (a survivor)


I certainly do agree with these positive responses from each of you to Danacetz. I am a Scleroderma and Raynauds Warrior (w/PAH and Congestive Heart Failure) too. I do all that I can to help my body feel better. It was 4 years yesterday since I had lung surgery and went into a coma for 5.5 days. It was my second very intense brush with death. I've had a wonderful team of doctors and our energies collaborate well; along with true and loyal friendship amongst several friends and family members remain positive attributes in my life. My faith is strong in GOD and we've connected even closer over the years. Through my discomforts, challenges, I manage to maintain peace, gratefulness, and I'll not let anything or anyone kills my dreams, desires, hopes and interfere with my prayers. Being positive and embracing the positives as best that we can, and focusing on balancing life as best as possible are ingredients that seem to work for me. I pray for you and all of our Fellow Warriors - to beat the odds, keep the faith and increase mind over matter as we need. Take good care, Danacetz and try to stay regimented with your health plan (ie., meds, exercising the limbs as best as possible, ample rest and making sure your relationships are healthy and encouraging) - follow your bodies signals with pampering, not delaying what it requires - be it food, rest - a phone call of comfort - and remember, our online-fellowship will be here to uplift one another. We care, we share and our comments certainly reflects sincerity. We are blessed to have one another. I wish each of you a wonderfully blessed Holiday weekend. - Kindly, Thelma


We can't control the future, so I don't want to spend time thinking about what could happen to me. I try to look at the positive side of everything. I know, some days it isn't that easy but thinking differently about some things helps. My jaw is getting tighter and it is more difficult to brush my teeth but I do appreciate the fact that I still have teeth to brush. We have a choice and I choose to think positive. Good luck to you.


Do some research on nutritional medicine. I was diagnosed 6 years ago, and immediately went to see a nutritional m.d. when docs said there was no med to help scleroderma. I also am fighting CREST, but it doesn't have me. I went to see Dr. Don Colbert at in Florida, and he got me back on my feet, as I was so fatigued I could hardly be up. Now I fight CREST, COPD, and Reynauds with nutrition, meds, rest, and prayer...and keeping a positive attitude. Don't let fear take over...take over fear with faith! I know the pain and suffering is hard; however, like someone said, CREST is different with everyone. Don't let yourself get to tired...and hopefully you have someone who tells you, "You're going to make it!" That helps so much. My doc is positive, and doesn't try to scare me. CREST is not diffused scleroderma, and can have a better outcome; although, even with faith, i believe one can life long with anything!

Do what you can with nutrition. I find I have reactions to tomatoes, and night shade vegetables, and I was advised not to eat wheat products and potatoes...but everyone is different. I take Super Berry Living's a vitamin mineral supplement from ... but check with a good nutritional m.d. before you change your diet...

Speaking faith words helps me overcome symptoms...besides all else that I do. I stay focused on God's Love for me, and that I have a choice to receive it! With Love anything is possible.

Also, I crochet with beautiful threads...and some yarns, although some yarns bother my breathing if fibers get "in the air" ... and that helps keep my fingers flexible...and i believe helps blood flow. I haven't had a Reynaud's episode in a long time.Also, I can sell what I make on ... so, there is a way where there seems to be no way. Don't give up! You are loved!

Bless you, friend...


Ditto to all the thoughts and remarks about God, faith, positive words, etc. I will add that if u do not currently take Pentoxifylline ER (I take 400mg) every day, as your doc for it. Shortly after I started taking it, the Raynaud's subsided almost 100%! I was having "attacks" every few minutes!!! Now, I hardly notice that I have it. I can even shop in short sleeve blouses and sandals!!! It makes your blood cells slippery. That is how my doc described how it works. Blessings


cool I will ask about it I take coumedin so maybe there is a conflict with drugs. Sorry I know that is not the right word but that is the meaning of the fancy word. Brain is fried right now.


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