Lupus or M.E/CFS?? 25 y/o needs help!

Any help would be lovely! I have been posting in the Lupus forum for a few months now. SInce until 3 weeks ago I was diagnosed with lupus. In December 2007 @ the age of 25 I very rapidly came down with an illness. I have SOO many symptoms and I am probably only okay 1 week all together out of each month.

Jenn, your symptoms are so much like mine and your situation reminds me of everything I went through. I am actually diagnosed with both CFS and lupus, so it is very possible to have both. My labs have always been kind of all over the place.

I was originally diagnosed with CFS in the early 1990's after never getting better from a bad case of mono. Luckily, my symptoms went into remission a few years later and like you I was very active and healthy, but I still needed a little more rest than most people, but it really didn't get in the way of my life. Then about four and a half years ago I felt like I got the flu and never recovered, so I went to my pcp and it was discovered that I had a positive ANA and was sent to a rheumy. The first rheumy I saw dismissed my ANA because it was not a real high number and told me I had fibro. I kept getting sicker and went to see another rheumy who told me it wasn't fibro that it was a "lupusy" kind of thing and started me on plaquenil. I saw this rheumy for about 2 years, but over those 2 years I got sicker with elevated sed rate, protein in my urine and elevated crp, but she wouldn't do anything about those things. It got to the point where I almost couldn't walk or function, so I went to another rheumy who diagnosed me on the spot and started me on prednisone which gave me my life back. Now most of my labs are pretty normal again.

It's so discouraging that it can take so long to get an accurate diagnosis and that people have to suffer so long. I don't think docs know the mental anguish we go through when we know we are sick and something is wrong, but labs don't show much and docs won't diagnose.

You have a lot of symptoms of both illnesses, but some of the things that are going on with you can't be explained by cfs. With cfs, you don't usually get the painful and swollen joints or the other swelling you are talking about. Make sure if your doctor hasn't seen these things in the office that you take pictures of your joints and your face when they are swollen - it will help in getting diagnosed.

The hoarseness and lymphnodes and swallowing problems are some of the symptoms of Sjogrens which is another autoimmune disease. you can do an internet search and look at the symptoms. A lot of people with lupus also have sjogrens. The swelling in your face is kind of worrisome - I don't know if you are retaining fluid or not, but I hope the doc can figure out why this is happening.

Just don't give up looking for answers. Another thing you can do is to print out the diagnostic criterea for lupus and go over it with your doctor so he/she can see how many of the symptoms you have. Sometimes people have to go through several docs before they find one that really listens and not only looks at labs, but looks at the whole picture.

The CFS forum is really slow most of the time, so I don't know if you will get any other responses. Feel free to keep posting on the lupus forum - there are a people there who are in diagnosis limbo and most of us have been there at one time or another.

Take care

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