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.

2 Online
2 Online

Lupus flare up questin

hey guys i was just recently diagnosed with what they say is mild lupus . I was diagnosed with myasthenia gravis and pots syndrome last october also, I just wanted to know what a flare up is like for you and what you experience, It might kinda help me figure out what is flaring up for me. hahaha

Replies

amethystchic
amethystchic

Hi...I'veonly been dx for a little over 2yrs now but when I'm flaring I feel as if I've been run over by a 18 wheeler!! I hurt from head to toe, I usually have an unbelievable headache that doesn't get better no matter what I take, and I have no energy at all!! I can sleep for hours and I still feel like I've been up for days with no sleep!! All is want to do during a flare is sleep!! I hope this lil tidbit helps you!! Take care!!
~Phoebe~
deleted_user
deleted_user

I asked this question when I was diagnosed and I got a lot of helpfull feedback. Everyone agrees that it feels like someone punched you all over your body. In my case my joints feel very sensitive. I cant even touch the area around them, the headaches are very strong. When this happens I find very helpful to get in bed and turn on my warm blanket. I also feel pressure on my eyes and I always get a mild fever.
Like Phoebe said I can sleep for hours and not feel rested. Other times the flare up comes with amnesia- like right now lol- I drink a lot of water, cut salt out of my diet and get a lot of rest. When it happens it feels like is never going to go away but it will :)
mar1976
mar1976

Hello and welcome I am sorry for your diagnosis. My flares are all different, I get confused b/c I think I have been in a flare for two years but have additional flares on top of it. I am not sure if that makes sense being that my brain is obviously effected, LOL!! My joints, bones and muscles hurt everywhere but especially my hands, wrists, feet and legs, stomach pain, headaches, eye pressure, rashes (not so much since I have been on the meds), sun sensitivity I get sick from sunlight very quickly even in the cold, fevers, overall feeling of malaise, memory and cognitive problems, back and spine, neck pain, moody but that could be the prednisone, extreme fatigue, insomnia sleepless nights due to pain, chest pain, bladder pain and frequent urination, nausea and vomiting but the protonix and prednisone help with the vomiting, I am always thirsty can never quench it, PAIN PAIN PAIN!!! I am sure I have left some things out, I always feel crappy but it gets worse and more symptoms arise and get quieter. Lupus is so confusing and my brain is not ever working well.
deleted_user
deleted_user

I wondered about the the thirst thing mar1976. I am always dehydrated i can never hydrated it's so weird. thanks guys for answering my question. Pain I always get and the low grade fever. My joints in my hands anymore feel like a old women. Do you guys get tendon pain in your hands or feet or achiles?
tomsmom05
tomsmom05

Well, my latest flare began with a mouth sore that turned into 6-7 or them, severe stiffness in my limbs and unbelievable weakness and exhaustion. My spine felt swollen and hurt so bad it felt like I was going to pass out when I sat the wrong way. My ribs hurt when breathe deeply. I was so wobbly that I felt like a giant weeble when I stood up to cook dinner. It's been this way for the past week but today I feel a little better.
My mother in law and sister in law are flying in tomorrow for a visit and I'm trying to get my house in order. So I really need to feel better.
Flares sure are unpredictable and miserable. This one has been really bad for me. All of them aren't this bad though, thank goodness.
I hope you feel better soon aprylb :)
Allisonc79
Allisonc79

My flare ups are pretty much what Mar said. Joints are more tender and achy, back hurts, except I don't get any vomiting. I have more fatigue in general, can't do anything. When I feel my best I can get out but when I am flaring its terrible. Sometimes the extra symptoms come on before your menstrual cycle, or after being in the sun. Mine get bad after sitting in the sun too even when its cold. It has to be really overcast for me to go outside and be ok. Any direct sunlight after so long will cause me to feel nauseated, and in general more fatigued.
deleted_user
deleted_user

I have not been out of a flare in years but I know it when a worse one comes on. Temperature fatique weakness head pressure stifness the whole symptons all seem to get worse. Hugs Marilyn
deleted_user
deleted_user

I think a flair is starting with me right now. I am soooo tired and I'm sore all over my joints hurt my brain won't function I want to crawl under my duvet and never come out. Worse thing is I brought this on my self by over doing it. Resting up as much as I can and hoping it goes away.
deleted_user
deleted_user

I often flare with the weather when it shifts, I flare much more often in the winter, and also often flare when I am getting my period. I start off really sore, in my muscles and joints. It hurts to walk up the stairs or brush my hair. My eyes get puffy and I get what looks like pink eye. My hair falls out in clumps, the pins and needles that I always have get horribly worse, I get very weak easily and just unloading the dishwasher can take all day, I feel flu-like and run a low grade fever. I also get mouth sores and the malar rash. My stomach hurts worse when I am flaring, and my fingers, hands and feet are much more sensitive to the cold. My chief complaint though it the debilitating fatigue...it's the kind that knocks you on the couch and won't let go till it's done
deleted_user
deleted_user

I have RA with Lupus. The worst for me is the FATIGUE and swelling of tissues around joints in hands/wrists-causing loss of usage. Feels like wearing a lead suit-and all I want to do is sleep, sleep...No energy. Then there are the overall body aches like beginning of the flu. No comfortable position. I have a general malaise that lingers even before the pain begins- I use is as a precursor that a flare-up is on its way.
I don't get the nausea from sunlight that others speak of (so far). I hope this helps some. You are not alone, as I've found out lately myself. What are your symptoms out of the norm that you are questioning???
Scarlet (scardoo)
sharaninmd
sharaninmd

I was diagnosed with lupus in 2002. My flares usually begin with a low grade temperature, followed by extreme fatigue much like the other DS members has described. I feel very flu like and my endire body aches, particularly my shoulders, back, lower back and hips. It is painfull to sleep on either side. I occasionally do get the mouth sores, but not each time I have a flare up. I have noticed that the flare ups are often triggered by stress. I usually pretty much stay in bed until I start to feel better. Sleep seems to be the best medicine for me. My doctor has be on plaquinil which I have been told should help the flare ups to be less severe, but it will not prevent them. I have been offered predinsone and anti inflamatory meds, but I am trying to stay away from them for as long as possible due to the side effects. For a short period I did try a couple anti inflamatory meds, but I developed an allergic reaction to one, and the others cause stomach problems for me. Every person is different, of course, so just try what your doctor recommends and get as much rest as possible.
deleted_user
deleted_user

I've been in a flare since last Spring. I was officially diagnosed last summer with Lupus and diagnosed in November with Peripheral Neuropathy caused from Lupus.
I'm always tired, joints hurt, hands and feet hurt, extreme fatigue comes on by noon every day, headaches, low grade fever, I feel like I have the flu every day!!
I haven't had any Fibromyalgia symptoms since September - Every muscle in my body hurt; like I was bruised everywhere.
I'm looking forward to the medications that I'm on getting my health under control..............can't wait!!
I hope everyone feels better!
Smiles