Question about dormant lupus

Hello all. I am a 27 year old female and have been diagnosed with lupus for about 4 years now. I have only had one "major" flare up which involved extremely achy joints (mostly feet, ankles, hands, wrists and arms), hair loss, chest pains and fatigue. I was put on plaquenil and have remained stable since then. However, I still experience achy joints (hands and feet) as well as fatigue on most days. My symptoms aren't extreme but still cause a general feeling of lousiness and interfere with my day quite often. I saw my rheumatologist yesterday for a check up and she said she didn't think these symptoms were from my lupus but may be because of depression and lack of exercise. She told me because I wasn't having any symptoms that would classify a major flare up my achiness and fatigue must be from something else. She is going to check my blood work still but didn't seem to offer much assistance. I was under the impression that you didn't have to be having a major flare up to still experience symptoms of lupus. Is this wrong? I'm just frustrated with trying to understand this disease and diagnosis because the symptoms are so general. I do suffer from mental health issues but could my achy hands and feet be caused by depression? If anyone has any information it would be much appreciated. This is my first time connecting with others who have lupus.

It is my personal opinion that depression may increase the pain that you have (just like stress) but will not be the cause of the pain.
Personally I am in constant pain. I always have joint pain and have for years. It was one of my first symptoms. Even when I don’t consider myself in a flare I have the joint pain and fatigue. When first diagnosed I had the idea from reading that with lupus I would have spells when I would feel good and then go through “flares” when I felt bad. But with many of us (myself included) it seems that the joint pain and fatigue are our “normal” lupus and more severe joint, skin or involvement of major organs is a flare. Mild exercise can help. (Not that I have personal experience lol). I crash when I come home after a 9-10 hour day on my feet. But my daughter who also has lupus has benefitted from exercise. Best of luck. I am sorry that your dr isn’t more supportive.

Often the mild symptoms you experience do not warrant treatment with potent drugs which could easily be worse than your disease. Plaquenil helps to keep symptoms at a tolerable level and also helps prevent flares Usually for everyday aches the doctor will also recommend NSAIDS - Motrin, Aleve or similar Not to underestimate the importance of depression- depression can cause a rash of symptoms- sometimes horrific It is wise to treat the depression and eliminate this as a contributor And yes lack of exercise worsens the fatigue which then leads to more lack of exercise- a vicious cycle Walking is a great way to start building up your stamina

Just to share with you
I think we are all affected diffferently some suffer with major flares and ok periods in bewteen where life goes on others its most Of The time feeling awful With serious debilitating fatigue
I push myself to exercise and I dont suffer from Depression
But I constantly have very little energy and total fatigue with only a few hours a day I Am able to be productive I have muscle joint pain and wake up with severe headaches each day
I havent had a major flare for two years but everyday feel like this
I think it affects us all differently and its only natural one feels down when our ability to engage in life has been so reduced
I think it helps to To just try to control what we can as in exercise each day even if just stretching and walking and be diligent in gluten Sugar dairy free diet and eat as much natural close to the earth food as possible
Vitamins minerals vit D b group vitamins and be diligent With meds and check ups

Rheumy say Lupus is “mild” when a person has no organ involvement. That being said, I can speak from personal experience: it doesn’t seem mild to the person experiencing it. I have severe joint pain, chronic fatigue and headaches each day. I have an autoimmune syndrome that includes Celiac disease, hypothyroidism, osteoarthritis and systemic Lupus. I take plaquenil as well as Percocet each day. It’s the only way I can function. I also take 40 my of Celexa per day for depression. Yes, some say depression makes the pain worse, but Lupus is the reason for the pain. Remember, your doctor has studied Lupus, but he hasn’t experienced it. It’s easy for others to be judgmental about Lupus patients, because they often don’t “look sick.” To hell with their opinions. You know how you feel. Lupus is Lupus. There will be pain and exhaustion. BTW: good nutrition is essential, but not every Lupus patient needs to avoid dairy. It’s an important part of my diet, and I do well on it.

I have been diagnosed with lupus for six years but arthritis has been a major issue since I was a teenager. I am bipolar with severe bouts of depression but I can tell you these things do not cause the joint pain. They do not make it easier to deal with but the pain is not all in your head. If you can look for another doctor who is more sensitive to your issues. I also found that having a support group helps if only to have someone to swap horror stories with. If not one for lupus then one for your mental problems that you can share the physical with. Also you will always find support here. Good luck

Hi … I was diagnosed with panic disorder in 1987. I was diagnosed with lupus in 2013 I was having a huge flare. I am questioning more out of couriousity if lupus is what caused the panic. I think there is a correlation … The importance of this would be how lupus or panic anxiety disorder is treated. I have a depressive mood that I know is lupus illness. I know this sounds like which came first the chicken or the egg… To me it matters. Good question…

I was diagnosed almost 3 years ago with lupus SLE. No organ involvement. I was put on plaquenil. About 1 year afterwards I switched rheumy. His tests alone showed no signs of lupus. But, because he all the records from previous rheumy, he said that my lupus was inactive (dormant, in remission, etc) I still feel rough most days and fight fatigue constantly. I did go to rehab and found some stretches that helped and also found that my hands were hurting due to carpel tunnel. I wear braces at night when they are bothering me and it really helps. I was told that the plaquenil can make labs look normal, but that doesn't mean we are back to normal. Damage has been done, and we still have to deal with it.



Have your thyroid checked- not just TSH but the complete panel, including T3 T4 and Reverse and try a gluten free diet. I've found that when I have joint pain- exercise only makes everything worse!

Best of luck

Thank you so much for all of your responses!!! It means a lot to know there are people who understand how I feel and are there to offer support and knowledge in this area.

I too have join pain every day. Sore and stiffness in the mornings when getting out of bed. But with in 30 mins to an hour the stiffness eases. I have off and on again headaches throughout the week and I'm always tired! I take plaguenil as well and Prozac for depression. Most of the time the depression is fine but when I feel really lousy and have to lay around all day the depression is worse. I was diagnosed with Lupus 3 yrs. and I'm still trying to figure out the disease. But this group helps a lot.

Hi. I’m 42 and was diagnosed 3 months ago. I have had very minor aches over the years but nothing like the few weeks leading up to diagnosis. I was placed on Plaquenil and it has really helped with the aching. I ache on occasion but nothing major or unbearable. Still having hair loss which is just as bad as the day it started. Your situation sounds very similar to mine.