My name is Lori, I am 41 and live in Virginia. I have had some type of autoimmune disease for 8 years now, at least, and have seen probably 25 completely useless doctors. My body is in such bad shape at this point, I turned my head 2 days before xmas and broke my neck. Last xmas both upper arms had stress fractures. my skin gets huge hole type sores in it about 2 times a year that usually last the other 6 months. I have kidney problems, hair falls out, and the typical bone draining fatigue. I have not worked for 5 years, yet went to school for 20 to be lawyer and prosecutor for California. Now I am in virginia and almost bedridden. Right now I am in a neck brace with c1 through c-7 fused together, and a huge amount of bone spurs have been removed. Needless to say,, no doctor I know of can or will help me and I feel like I am falling apart along with my spirit and my marriage. My rheumies will give me NOTHING because they say my numbers are too "borderline". Hello. My eyes have corneal scarring due to dry eye. I started restasis and they have cleared, hey one miracle, 16 to go.
I have positive ANA, RF, Low C3, C4, C6,
C8 complement levels.
I take Lortab, Fentanyl Patch, Macrobid, Lexapro, Ambien, Zanaflex
See?? Nothing that helps anything, not even the pain anymore, and I still don't sleep.
Hopefully someone out there has heard of this when bones are just breaking, and I don't have brittle bone disease and my density is normal. I do take fossamax and calcium. that plus all the autoimmune problems, I don't know. I tried to get doc to give me enbrel, NO NO NO
Best to you all, nice to "meet" this board.
Lori
What type of kidney problems do you have? Are you seeing a nephrologist? In kidney disease, the phosphorus level can get high in the blood stream and leach calcium out of the bone thus making the bones more prone to breaking.
Don't give up! I pray that you will find the right MD to help you get better. I know how stressful this can be.
Welcome to the site and please keep us updated!
I am 44 and was diagnosed with SLE (lupus), Sjogren's Syndrome and Raynaud's Phenomenon at the age of 35. Was to the point I could barely get up 2 steps at the end of the day to get into my house. The rheum. put me on prednisone, Imuran, plaquenil and Ambien. Slowly improved to point where I could work 5 1/2 days a week. Then insurance changed and had to get all new doctors, what a nuisance. New doctor didn't think I really had lupus at that point because I was working full time and gardening almost every day. But he wanted me to stay on all the meds because of the Sjogren's. I did for some time but then the side effects of meds were starting, nausea, vision problems, extreme light sensitivity. I have not taken any meds for over a year now (unknown to my rheum.) by he always sends me a note after blood tests saying everything looks normal. Does that mean normal for my condition, normal for being on these meds, or just back to normal period? Who knows...