Hi, I have Sjogrens,Raynauds,Lupus,Fibromyalgia, and Hashimoto. I had my thyroid removed due to that. I have a lung disease caused by auto immune. Also I have very weak muscles thought to be caused from steroid myopathy.
I have had these things for four years and have declined I have problems bathing....do not do any house work or cooking...I can't stand that long. I use a scooter when I go out. I rarely go anywhere...have not been out in six weeks. It seems when I go to town I get pneumonia and land in the hospital...once for 23 days and I gained `100 lbs on steroids.
I am now having very loose stools every time I eat. I throw up often. I have very bad burning and stomach pain in my stomach right under my ribs. I am on Nexium and watch my diet.
I go to Rheumatologist next week He seems useless, but is one of four in my town and they are in the same group.
I can't take the med for Sjogrens as it really bothered my stomach. I reduced my Plaquenil due to stomach problems.
I don't have faith in my doctor but would have to travel five hours to see another one.
I have asked him about plasmapheresis but he says it is very expensive and he does not think I need it..
I am so frustrated..Four years have gone by with no improvement. I feel my spirit and body are not one....my spirit wants to do things, go places etc....but my body will not let me..does this make sense?
I just came for support and to learn.
I pray for a cure for this disease.
Thank you for having me.