Connect with others who understand.

Sign up Log in
Resources
About MyFibroTeam
Powered By
Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

May I Please Ask What Symptoms You Had Prior To A Lupus Diagnosis?

A MyFibroTeam Member asked a question 💭
Plymouth, UK

I have been experiencing a variety of symptoms lately than I have labelled as a 'fibro thing'. Then I read the posts and questions by other sufferers who state similar symptoms and have been diagnosed with lupus and/or sjogrens (sorry if misspelt). I am interested to know how this was diagnosed for you? How did you present your symptoms to your doctor and was it prior or after your fibro diagnosis, Equally, can I ask if you'd please share the symptoms you presented. I'd be very grateful for your… read more

January 25, 2016
View reactions
A MyFibroTeam Member

Hi Teresa, I was diagnosed with fibro quite a long time before my lupus diagnosis. The main things I recall being significant in the diagnosis were actually also fibro symptoms (fatigue, general malaise, swollen/painful joints etc etc), but I had, for a long time, had a rash like sunburn across my chest from my neck down to my breasts - I did actually think it was a sort of permanent suntan/burn & ignored it until it appeared across my cheeks & nose. It then dawned on me that maybe this was lupus as if heard of the 'butterfly mask'. I have lupus in my family but the relation was my mums cousin so not a close blood relative. I also had Raynauds & Sjorgens, both lupus symptoms too. Extreme exhaustion was really a problem, muscle weakness & wastage also. I also swelled up all over, including badly on my face & neck... Lupus is notoriously difficult to definitively diagnose as it mimics other illnesses including Fibro & Rheumatoid Arthritis...I think the skin reddening especially on my face was a deciding factor for my rheumatologist, taken with the other presenting symptoms. It has a horrible habit of lying low for a period of time (days or weeks!) and then flares up badly without warning. I wish you lots of luck in your quest to get to the root of your ill health; I'm sure you already know that Sjorgens is an autoimmune condition, as is lupus. Autoimmune conditions very often arrive in gangs, or one after another - I was told that it's quite unusual to have only one condition alone. I have several, and keep my fingers crossed that there aren't any others lining up to join the party!!!
I hope this helps a bit; good luck, kind wishes & hugs, Kate x

January 25, 2016
A MyFibroTeam Member

Thank you Kate, this is really helpful xx

January 26, 2016
A MyFibroTeam Member

In March my doctor ordered an AVISE test to determine for sure if I have Lupus. This test is new and it was all negative. So, I only have Fibromyalgia which is good news because that is enough!😏

April 6, 2021
A MyFibroTeam Member

I suffer badly with sinus and migraines which just makes the chronic fatigue worse and no amount of pain medication helps in fact the aftermath of ibs is horrible

January 6, 2021
A MyFibroTeam Member

I got sick with the flu in 1993. Mist of my 6 children and I got it. They were all well within about 10 days but I never regain my energy. Then I started having an irregular heartbeat but the heart tests were fine. I had chest pain but the artiergram was normal. By February of 94, I had a rheumatologist diagnosis me with Fibromyalgia but I wanted another opinion. A friend of mine said that I had the same symptoms she had when she wS diagnosed with Lupus. I went to see her doctor in Atlanta who was the head of the Lupus foundation. I have at least 2 cousins that have Lupus. After a few visits he diagnosed me with Lupus. From 7/94 through October 2000, I traveled 3 hours one way to see my doctor. My main problems were sinus infections and migraines that I couldn't get control of. I also had a TIA and they discovered that I have Factor 5 Lieden- a clotting disorder. In 2001, our family moved to another city and I started getting better. I found a local doctor that helped with the sinus infections and migrainesand they were getting under control. Stress seems to start a flare. In 2017 I had been symptom free for about 11 years. We had changed jobs in 2011 and by 2017, I was totally stressed out and started having the old familiar symptoms. I found a rheumatologist who examined me and told me that I only have a couple Luous symptoms. He diagnosed me with Fibromyalgia. He started me on Cymbalta and the symptoms eased up a lot. I don't like being on an antidepressant but when I tried to get off of it the pain was really bad and I was depressed to the point of crying for no reason. I've had to double the dosage since I started 2 years ago but I'm not willing to change because with rest, I can manage it. So I said all that to say that I don't know whether I have Lupus or Fibromyalgia or both. The symptoms are so similar but I would rather have Fibromyalgia than Lupus and at the moment my doctor is helping to control my symptoms. I really feel for those of you who live with terrible constant pain!! I pray you will find relief and rest!!❤❤

October 30, 2020

Related content

View All

Am I Suffering With Fibromyalgia?

A MyFibroTeam Member asked a question 💭
Otley, UK

Had Anyone Been Diagnosed With Lupus Alongside Fibromyalgia? How Did You End Up With Your Diagnosis?

A MyFibroTeam Member asked a question 💭
Ystalyfera, UK

What Do You Think About My Lab Results?

A MyFibroTeam Member asked a question 💭
Early, TX

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Lock Icon Your privacy is our priority.
Already a Member? Log in