[sheila1366]

I haven't been to the board lately.Been on ohter boards dealing with my new diagnoses.I have now been diagnosed with gastroparesis,was diagnosed with dysautonomia for a year and got a secone opinion then was undiagnosed.I have now been told I may have sjogren's syndrome.

I get tested for lupus every year.My rehuemy. is very good and has been very helpful.She has diagnosed me with fm/cfs and raynaud's.

Are there many here that have some of the same health problems that I have that are still struggling with a diagnoses.I have so many and I know they are all connected under an autoimmune disorder just which one.

My health is worse.My body is fighting itself.

I have to have my eyes checked Tuesday.Things are getting blurry and eyes hurt badly.

This has been going on for so long now.Years.With the recent diagnoses of gastroparesis and the scare with dysautonomia I am worried that my body will be past the point of repair once something is caught.

Tired,achy and worried.
Sheila

 

[Maia]

I hope you get some more definitive answers soon, and more importantly treatment that really helps. I'm not sure, but I think CFS can involve dysautonomia but certainly autoimmune disorders can also cause your symptoms including dry eye. Sounds like you are not testing positive on any blood tests for auto-antibodies but they keep checking them? There is ANA negative lupus, and other autoimmune disorders so that is something to consider & ask if perhaps your doctor will consider a trial of medication like Plaquenil and see if it helps?

Good luck - I'm glad you came back. There are certainly others in your situation - trying to get a diagnosis at the moment. Take care...

 

[ALWIN]

Hi Sheila

I am sorry you are tired and achy and worried, and I can see why. It is difficult to have new things thrown at you and it can knocked you off balance if a new thing is thrown into the pot. It can make you feel anxious about your diagnosis and wonder what the heck is going to happen next. It is also frustrating not to have one single definitive answer. Chronic pain is a terrbilbe thing.

I don't understand you abbreviations, though - could you tell me what cfs is, please?

What medication are you taking right now?

It sounds to me like your rhemy suspects SLE or why test you every year?

I am sorry you have so many different things to cope with. I too have Sjorgrens. Also Hughes and SLE. I think I get fibromyalgia type symptoms but assume these are related to lupus, so do not treat it as a separate entity.

I hope somebody can help you clarify things.

Meanwhile I just wanted to offer my hand and a bit of support.

Take care Sheila and good luck with the responses.

 

[Joandublin]

Hi Alwin

CFS is Chronic Fatigue Syndrome

Cheers
Joan:rose:

 

[halfpintfl]

Hi Sheila, I hate to see that you are in so much pain.Lupus is called the disease of 1,000 faces for a reason. That is how many illnesses mimic it. I started out with sculliosis, osteoporosis, lasted few yrs, got checked for cancer, there were a couple more, then it was Fibro. I was in so much pain that I needed a cane to walk, and they made me try every main idea that they had, including putting me on a stretcher machine. After a few yrs, they gave me sleep meds and they worked, and that was the only time I got any relief. Then my Dr said he could help me no more, sent me to a Rheumy, new to me. It took a while, but he dx me with Sle, but I was not dx on my bloods (ANA) alone. He dx me mainly by my symptoms, and I had spent a lot of time educating myself first. I have been dx with way too many things that can go with Lupus,
I just prefer not to write them all down. Take care of you.:wink2: ​