Progression of CVID symptoms

[thiesy]

I was diagnosed with CVID 5 years ago, and have done relatively well with it until recently.   Symptoms seem to be worsening and I struggle to do daily activities like I used to. I live in a small community and am fortunate to be able to receive IVIG here in our local health care center.  I have also had a few DVT's which exacerbate the situation a little.  The pain in my arms and legs have made it difficult to do many daily activities and I wonder if there is something that I can be doing that can decrease this while dealing with CFS?

[hlh]

I'm sorry to hear about your struggles. Do you feel like you are getting adequate medical care from your doctors?

Are they appropriately treating you so you don't get anymore DVTs? Are you on blood thinners for life, and wearing compression stockings to prevent long term complications (which include pain) from your DVTs?

Who is treating your pain? Have they tried medications like Cymbalta that might help your mood and pain and are non-sedating? Have you learned mindfulness approaches for helping your pain.

cw.uhs.harvard.edu/mindfulness/index.html

Are you able to get in daily exercise... even just walking outside... which can help your mood, pain, and even your energy level? I know it seems counter intuitive, but when you are tired sometimes just a little exercise/activity can improve your energy level.

Have you talked with your doctor about trying a mild stimulant like modafinil?

One step at a time... there are ways to make things better. The hardest part can often being finding a health care provider to help, who is invested.