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
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
Thank you Kate, this is really helpful xx
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
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!!❤❤