Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
So I have Lupus. Started many years ago. For 5 years, I felt AWFUL but they could find nothing wrong with me. Then my Kidneys started going down and low and behold I had 'Vasculitis". 10 years later my current Rheumatologist calculated that I had Lupus. Once diagnosed and put on Plaquinil, I've maintained good health for the last 9 1/2 years.
I lost my father who I was very close to at the end of April and my mom went into the hospital two weeks later but eventually got out at the end of May. She is sickly and requires care and my father was her caretaker. So, long story short, the end of Spring was traumatic. My father died of cancer and went fast, but painfully. Tough to witness.
In July, I started getting stomach pain and frankly did not feel so great and to be honest, that has carried through to this day. I've had my stomach scoped, abdominal scans, colonoscopy and other than some gastritis, things checked out. I've had blood draws and even my lupus checks, which haven't shown much change over last years.
But here is the deal and the question....can Lupus flair without strong test support? I have some of these annoying symptoms, such as puffy around eyes, hair that falls out easily, weight dropping without effort, tired, achy, the stomach thing, constant nose running, brain fogginess and trouble dealing with stress and anxiety. Whenever I become a medical mystery, I naturally flash back to my years where they couldn't find a thing wrong with me but I knew something was wrong. My doctor hesitates and says there isn't support that it's a lupus flare. Says I'm just dealing with the stress of losing my dad. Certainly I am. But doesn't stress also equal Lupus and oh baby, this has been stressful.
Curious what others that understand what I'm saying here, think. Thanks,
I lost my father who I was very close to at the end of April and my mom went into the hospital two weeks later but eventually got out at the end of May. She is sickly and requires care and my father was her caretaker. So, long story short, the end of Spring was traumatic. My father died of cancer and went fast, but painfully. Tough to witness.
In July, I started getting stomach pain and frankly did not feel so great and to be honest, that has carried through to this day. I've had my stomach scoped, abdominal scans, colonoscopy and other than some gastritis, things checked out. I've had blood draws and even my lupus checks, which haven't shown much change over last years.
But here is the deal and the question....can Lupus flair without strong test support? I have some of these annoying symptoms, such as puffy around eyes, hair that falls out easily, weight dropping without effort, tired, achy, the stomach thing, constant nose running, brain fogginess and trouble dealing with stress and anxiety. Whenever I become a medical mystery, I naturally flash back to my years where they couldn't find a thing wrong with me but I knew something was wrong. My doctor hesitates and says there isn't support that it's a lupus flare. Says I'm just dealing with the stress of losing my dad. Certainly I am. But doesn't stress also equal Lupus and oh baby, this has been stressful.
Curious what others that understand what I'm saying here, think. Thanks,
Lupus is insidious and stress never helps...still worse, auto immune diseases can run in "packs". Meaning if you have...you can develop another.
You might want to get your thyroid tested. Specifically, TSH, Free T4 and Free T3.
I have FIVE.
just to tell you that I am very sorry for what you go through and I do hope things are getting better for you in the near future...
To answer your question:
Yes, you can go through terrible flare-ups and they do not even show in your blood-tests, because blood-tests for SLE/MCTD-flare-ups are still rather coarse ...
But :
I have been in many flare-ups and was frustrated every time, that these flare-ups did not show in my blood-tests, but I became very quiet about "things", since the ambulance transported me to hospital when I was unable to move or walk, unable to look after myself or feed myself and I was in a terrible state of health and at that time for the first time it showed clearly in my blood-tests that I was in a severe SLE/MCTD-flare-up.
Ever since this "flare-up-episode" I have not complained about my flare-ups not showing in my blood tests and I am ever so grateful that the flare-ups do not show in my blood-tests, because if they would show, I would be in a medical emergency and in hospital......
... In other words: be grateful that your flare-ups do not show in your blood-tests, because if and when they show, you are very poorly and in hospital and that would be the time when you wish back the "more harmless" flare-ups which did not show in your blood-tests...
I know that this may sound very illo9gical, but that is unfortunately what we are dealing with when we suffer from SLE/MCTD-flare-ups....
I wish you good luck and send you my best wishes and all the best from Kristina.
... and please let u know how you are getting on...
Been feeling very tired the last two days. It is allergy season here so I am not sure how this is playing into everything now. I am starting to feel like an onion....so many layers of what could be going on.