Reply To: ooo it hurts! any advice please

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#3523
KarenKaren
Moderator

Welcome to the forum, dory99, and I’m so sorry to hear how painful your experience with Raynaud’s has been. I hope you’ll be able to get some advice or pick up a few tips from our site or members on ways to help keep you warmer.

You mentioned that you had sarcoid. Are you referring to the condition sarcoidosis or just a flesh-like tumor? If you had the condition, sarcoidosis, and are in remission, then your Raynaud’s symptoms that you’re experiencing are considered to be secondary (meaning it is a result of an underlying disorder) and are a bit harder to manage since they tend to be more severe than someone who has just primary Raynaud’s disease (without an underlying disorder) and, also, sarcoidosis is considered to be a multi-system disorder, and we would normally recommend that Raynaud’s patients seek the assistance of a rheumatologist, but you also may need other specialized fields of medicine as well in order to correctly manage the symptoms.

Yes, dressing in layers is advisable but the clothing should be loose fitting, not restrictive, in order to create a barrier of warm air nearer to the body and its core, along with life-style modifications and getting a handle on any stressers in your life, if the latter is possible. You might want to try wearing a hat even when you’re indoors. We lose 40% of our body’s heat through the top of our head so don’t overlook this. I would advise you to talk with your primary care physician and try and get some kind of management program that is conducive to your condition(s) and fits your life. We have more tips on keeping warm in our FAQ’s at the top of the page, and also you can use our archived section (which is read only) under the Discuss button, again, up top. Hopefully, this will help you out.

Here’s a link I came across that may also help you, is free to join and, is just another means of finding out information:

 http://www.inspire.com/groups/stop-sarcoidosis/

Please keep us posted on your progress and I look forward to reading more from you.