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

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Regular Member

Date Joined Mar 2008
Total Posts : 39
   Posted 5/9/2008 2:30 AM (GMT -6)   
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.
All blood and urine tests are coming back negative for EVERYTHING under the sun..ANA is fine...RF is perfectly normal. Doctors have no idea what it is.
I was hoping someone in here knows if my symptoms sound like anything they have, or have heard about.
Here they are --sorry so long but its what I deal with constantly.
-Edema (swollen hand & feet)                          -lightheadedness   
-Severe chest pains ( stabbing & tightening)      - Severe difficulty swallowing
- Severe onset of allergic reactions to meds & foods ( never happened before)
- Nausea                                                      - Sweating episodes
-severe swelling of eyes,face,ears                    - Severe muscle weakness
- Flu like symptoms                                        - SHortness of breathe without any cause
- Frequent headaches, migraines (never before)  - Voice suddenly becomes very hoarse or weak
-Lymph nodes in pain behind ears & on neck       - Severe throat pain
- Worsening of allergies especially : HIVES, BURNING, ITCHING, RASHES,FEVERS, toothaches, wheezing,  body aches
- Pain in Joints                                              - STiffness in legs& arms after holding a position
-Menstrual cycle is VERY off                            - Irratic breathing, persistant cough or wheezing
- Red spotty rash on legs                                - Full body hives
- Burning & tingling sensations                          - Swollen joints ( hands & feet like arthritis)
- Knots in hands and feet                                - Swollen knots on my chin,forehead & temples
Before 12/07 I was never sick. Never had health problems. Was active without any body aches. Never had headaches unless under severe stress. I was never allergic to foods or meds. NOw I am allergic to anything that is not a green vegetable or eggs. If i try to take tylenol, aspirin or IBprofrin my tongue , lips eyes and throat will swell up within 10 minutes.
I am currently taking Plaquenil for my "possible lupus".
Does anyone have any idea what this is? Does it sound familiar to anyone?
Anything would help,
Thank You

Who the heck are "THEY" and why is everyone asking them these questions?
"THEY" sure do have a lot to say...

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/9/2008 8:45 AM (GMT -6)   
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
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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