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diagnosed and a bit scared

Feb 17, 2016 4:21 PM

What I thought was fibromyalgia is actually lupus. That's all I got from my Doc today. I don't get to know more until I see the rheumatologist.

Feb 17, 2016 6:50 PM

In what ways are you scared? When do you get to see the rheumatologist?

Feb 17, 2016 6:52 PM

Don't know what to expect. And I have no idea.

Feb 17, 2016 6:55 PM

I remember I was scared when they tested me for lupus. Mostly because I didn't know what to expect. I hope you get an appointment with the rheumatologist soon!

Feb 17, 2016 7:55 PM

I hope so too. Doc gave me the results over the phone, which sucked. It's unnerving knowing that my body is attacking itself and not knowing what to do about it.

Feb 17, 2016 8:23 PM

Fireyred, that was not very professional or caring for the doc to tell you by phone. I oppose your rheumy doc appt will be soon to put you at ease. My hubby's cousin has had lupus for almost 35-40 years. She's only had a few real bad situations through these years. There are many on here who have it and I'm sure will share information to help you. Sending you hugs, love, & prayers! πŸ™‚πŸ™πŸ’•πŸŒΌ

Feb 17, 2016 8:27 PM

No it certainly was not. It wasn't even her. It was her np. I just hope to have my rheumatologist appt soon.

Feb 18, 2016 3:46 AM

For now , try try try hard not focus so much on what might happen. Get your self educated , there are lots of information on the internet, lupus society etc, and there are friends here that can talk to you about it. In the mean while try to reduce your stress, eat healthy meals , and start writing down questions you have for your Rheumatologist. Hang out around here..enjoy your new friends here. Much love,Terri

Feb 18, 2016 5:08 AM

Thank you Terri!

Feb 18, 2016 6:35 AM

You are most welcome, everything will be okay..you will manage .Love,Terri

Feb 18, 2016 8:39 AM

Fireyred, i agree with Terri. I think it's so great that you found this forum to share with us! Autoimmune diseases aren't for the weak of heart. Is there a way for you to find out when your next appt with your rheumatologist is? πŸ’ž

Feb 18, 2016 8:41 AM

I just got referred yesterday, but I'm hoping by next week.

Feb 18, 2016 8:42 AM

Do you make your own appts? If so I would call everyday to see if anyone has cancelled for that day... ??? I don't know just throwing out ideas. πŸ’ž

Feb 18, 2016 8:48 AM

I honestly can't even remember the name of the doc they're sending me to. Today I've got appointments for my daughters, so I'll deal with my Doc tomorrow. 4 generations of women with hip dysplasia, and I've gotta do what I can for the baby. If she has it, we're treating it now to avoid suffering. I'm not gonna have my girls be in unnecessary pain. I'll go back to dealing with me tomorrow.

Feb 18, 2016 8:54 AM

I completely understand. I was born with congenital hips. For the past years I have had so much pain in my hips. I can't stand or sit in the same position for very long. So nice to hear that you are dedicated to your family. My mom doesn't even know what to do with me, so she rarely calls/texts & when she does - she just makes it about her. Good luck today with your girls, and same for you tomorrow. πŸ’ž

Feb 18, 2016 11:22 AM

I was diagnosed by my doctor last July with lupus and I know how you feel. And he told me no I didn't have fibromyalgia also. I just now seen the Rhuematologist and she did further blood work and I was diagnosed with SjΓΆgren's syndrome and fibromyalgia. She said she did not want to diagnose me with lupus just yet. In the hospital it was so many people who did not know what my disease was. I have been thru a roller coasters of emotions and the best thing to do is research and document any symptoms and stay positive because the one thing I learned is that the regular doctor can be wrong just pray and wait to see the Rhuematologist cause the test they do are more intensive.

Feb 19, 2016 7:43 AM

Good news is my 12 week old daughter does not have congenital hip dysplasia!
My notebook is always by my bed so I can jot down questions and concerns for my appointment when it finally arrives. All I know is my ana is high and speckled. When I've consumed more coffee, I'll find out WTF the speckled part means.

Feb 19, 2016 8:36 AM

That is wonderful news about your daughter. I found out you test high and speckled and still not have lupus. The Rhuematologist will explain everything about their tests. I'm praying you don't have any autoimmune disease cause it sucks.

Feb 19, 2016 8:44 AM

The family history is there, and quite a few symptoms are there. I'm just gonna take it a day at a time. Which reminds me I need to make an appointment with my primary specifically to yell at her.

Feb 19, 2016 8:57 AM

That's the best thing to do but try to stay positive because my primary told me yes to lupus and no to fibromyalgia. So for 6 months I was going crazy and now I'm on all these depression and anxiety medications. Finally see the Rhuematologist and she says no to lupus and yes to Fibromyalgia before the blood work. Then it comes back and her final diagnosis was SjΓΆgren's syndrome and fibromyalgia and eventually I will have lupus. So I'm on plaquenil now and it's very expensive especially for me with no insurance. But my disability hearing is March 1st. So even though you may have symptoms just don't worry yourself and don't claim it till you see the Rhuematologist cause I found out their tests are more in depth than the Pcp.

Feb 19, 2016 9:54 AM

I'm feeling more optimistic now. The doc they were going to send me to doesn't take my insurance. The Medical University does though and they kick ass. So my referral is on it's way and should be processed today or tomorrow. They have I think 6 Rheumatologists and immunologists, so I should be in fantastically capable hands.

Feb 19, 2016 1:35 PM

I as high and speckled, and I have Sjogrens, fibromyalgia, & hypothyroidism. πŸ™‚πŸ’•πŸ™πŸŒΌ

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