Re: Another AOSD with Likely PF

[Guest guest]

Quick question, has anyone else with fibro had a vitamin D problem? A

few months ago my oncologist tested me and I had no measurable vit D in

my body. Now since I live in Phoenix and I do go outside I found this

hard to believe. Long story short we got my levels back up. Is this

common with fribro? Thanks

Dyane Phoenix IPF 02

>

> Here is an excerpt from a posting on the Adult Onset Stills Disease

Support group board. Sounds likely like PF, that in my humble opinion,

should have been caught 3 years ago. Thoughts?

>

> ==================================================

> I am from Watauga Texas, I have been a member for awhile, but I

rarely post, but I do read them. I was wondering about the red face

almost looks like a butterfly shape like Lupus. I also have fibro. Well

for awhile I noticed getting out of breath easily just walking across

the room and when I am tired my face really gets red. Well at the end of

March I went into the hospital for pneunomia and was coughing alot, but

when I started to cough uncontrollably, I would pass out, I was not

getting enough oxygen. Well five days later I had to go home with oxygen

of course. I saw a pulmonary specialist, but he wants a CT scan of the

full lungs and a blood gas test. I read the hospital reports from this

visit and the one three years ago for possible pneumonia and it said my

lungs had some scarring. Having fibro, I have of course low vitamin D

levels also.

>

> I am wondering if oxygen level and red face is some how connected

because when I am on the oxygen, my face does not get red. Funny huh?

>

> My rheumy has me off my Kineret shots and thinks I am healed from

Stills, I never heard of being cured just go into remission. But My

Rheumy is a jerk and likes to flaunt his knowledge of everything.

>

> I am hoping they find what is causing the low oxygen levels because I

really really really hate having to be connected to a machine with a 30

foot hose and of course it gets caught on everything! and then have to

carry a portable one when I need to go to doctors appts or do errands or

take son back and forth to school. Plus, it is the pits, because we are

trying to paint and redo our house and the hose gets caught and I am

already tired with fibro, I get soooooooo

> frustrated with trying to get anything done. Sometimes, I just start

crying and sometimes my 19 and 15 year old sons and husband are not

always sympathic are very helpful around the house. If I do some

cleaning, after they get home its undone plus more mess. I am sorry this

is long, but I just wanted to vent and also wanted to know if anyone

else had low oxygen levels, red face, shortness of breath, chest pains

from the lungs?

> Well I hope everyone is doing okay

> Death to the Dragon!

> from Watauga, Texas

> ===================================

>

> BTW - Those of us with Stills Disease call it the " Dragon " because of

the high fevers we can experience. Sometimes up to 105 for about 2

hours or more, once or twice a day, like clockwork. No drugs bring the

temp down, just have to wait them out.

>

>

> Tom - PA, AOSD 2003;Asthma 2006;NSIP 2008;Sjogrens 2008

>