pepperbird Posted October 4, 2018 Share Posted October 4, 2018 Does anyone out there have experience with scleroderma ( sclerosis), Sjögren syndrome or Raynaud's phenomenon ( secondary, not primary)? I have been diagnosed with all three, and am interested in hearing from anyone else who has dealt with them. Most importantly, how do you cope with the exhaustion? I am so sikc of that. Link to post Share on other sites
seren Posted November 7, 2018 Share Posted November 7, 2018 Sounds like you have Undifferentiated Connective Tissue Disease, this means you have the symptoms of all, but they will not develop into the fullblown illnesses. I have MCTD, which means mine will go on to develop into fullblown either Lupus or Scleroderma. Both are awful both make you feel like you have to stop, right away and rest, you should listen to your body and rest all you can, when you need to and don't feel guilty about it. It isn't like being tired, it is terrible fatigue. You must rest to allow your body to get better. i take steroids and Cellcept, you might start on Plaquenil to help with the inflammation. it is basically that your body's defences are more like Spartans than the ordinary person's soldiers. When you have an infection your Spartans come out, attack the illness. leave the dead cells behind then carry on rampaging through your body attacking, joints, tissue etc until they stop. It is so tiring, it hurts, a lot and you need to find a rheumatologist, get diagnosed and on the right meds. xxx Link to post Share on other sites
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