Raynauds, Limited Scleroderma - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Raynauds, Limited Scleroderma

Richmi
Richmi

I have been reading a lot of these posts. I have had Raynaud's for two years and diagnosed with limited Scleroderma for a year. Many may already know this, but this is an auto-immune disease. Our bodies are eating themselves. I have seen a rheumatologist in CA and now VA. I like the one in VA better. However, all he can do is follow it and check it every 6 mos. to a year. For Raynaud's, keep warm when needed. Wear wool gloves and socks in the cold climate. Look up CREST syndrome. I have all five symptoms of which the R stands for Raynaud's. I pray every day and hope for a cure one day.

9 Replies
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hello there, I hope you don't mind but I wish to take exception with your comment about how our bodies are 'eating themselves'! This is simply not the case. In scleroderma the immune system has become over active and is targeting your own cells as well as those of invading bacteria/viruses etc. When this occurs there is an inflammatory process and in the case of scleroderma this inflammation can lead to a range of issues including fibrosis of connective tissues, inflammation in joints and in small blood vessels. There are many treatments that are aimed at reducing the reactivity of the immune system or controlling the symptoms of inflammation...as well as some of the other related symptoms such as issues with the gut, circulation etc.

I don't think it helps us to use language in a scary way. It just increases the fear that people with scleroderma already feel. Our bodies are not turning to rock...or stone! They are not eating themselves. Please let us help and support each other and not add to the drama and terror. Let us do helpful self care activities that reduce our stress, that soothe and calm us. Let us eat well, sleep well, relax well and move well. Let us be kind to ourselves and each other. The less stressed we are, and the more we look after ourselves the more our immune systems will calm down and the less issues we will have.

All my best

Lucy x

Richmi
Richmi
in reply to LucyJean

Your comments are noted. Thank you and God bless.

As mentioned by lucyjean there are both symptom modifying and disease modifying treatments. I have crest and take nifefipine which manages my Raynaud's and omeprazole for my gord. So that's the r & e under control for now. There are good clinical guidelines which support us and our clinicians, in management of conditions like ours Google the eular guidelines systemic sclerosis and it will tell you what to do step by step symptom by symptom. Information is power we don't need to be afraid. Good luck. Alan

by the way thanks to my RX I've had 1 attack of Ray's in 2 years and I only wear gloves when its cold!

Richmi
Richmi
in reply to amd21

Thanks for the information. I do take omeprazole for my gord and armour thyroid for the T in CREST. I do wear gloves when it gets cold. Blessings.

Our bodies are not eating themselves. I should know or I would be dead by now. I am 89. We have symptoms and we deal with them, they come and go. The worse thing you can do is panic. Breath deep when it happens. Distract your self as much as possible and laugh.

Richmi
Richmi
in reply to zenabb

I do not panic with regards to CREST. I live with it, try not to overstress and keep my blood pressure down. I also pray everyday as I believe it keeps me in God's and Jesus' graces. Ironically, I use holy water on my skin which I believe is helping a great deal.

Blessings

Have you noticed a difference of symptoms from one side of US to the other?

Richmi
Richmi
in reply to lennyplus5

Absolutely!

I have Reynards and scleroderma which was diagnosed 2 years ago. I had to go to a couple different rheumatologist to find the one that knew what she was talking about. She put me on medication that has helped me tremendously. I take nifedipine, mycophenolate, plaquenil and a daily baby aspirin. One of the rheumatologist I went to initially told me the same thing, there was nothing they could do for me. So glad I pursued other doctors to find the one that I have now. Good luck and remember there is always hope.

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