Flare?

Debbie,

A flare for me means that the symptoms I typically have all the time -- joint pain, fatigue, muscle aches -- all get worse. Sometimes my symptoms are just a little bit worse and other times they put me to bed. I don't get sore throats but I do get little blisters/sores in my mouth.

I'm curious as well about what others call a flare.

Pat

That is exactly what I mean by sore throat. It is like I have a lump that I can't swallow. It's more annoying than painful and it doesn't always occur.

For me lately, I have "flares" twice a month (I hesitate to call it a flare because I do not have a dx yet). It's terrible. I don't know what I'm doing wrong. I know it's coming when I wake up in the morning and I have the feeling of being hungover but without the drinking. I feel like I haven't even slept. I am very irritable. The fatigue usually gets worse over the next few days peaking about day 3. And, all the other symptoms are worse as well. Increased joint pain, weakness, body aches, oh and always always as sure as anything I get mouth sores on day 2. I HATE HATE HATE them so much. They hurt horribly bad. I usually have them on both sides of my tongue, under my tongue, behind my lower lip and sometimes on the sides of my cheeks. It makes the whole experience triple as bad because I can hardly eat. I just feel like brushing my hair is comparable to running a marathon. I get worn out fast. I can't keep up with the house or my children. I get very grouchy. I find myself snapping at my husband a lot. Oh, and absolutely NO interest in anything sexual. It usually last about 5 days. I am actually getting over one now and I feel a lot better today, but not good by any means. It's sad when the way I feel right now, I consider a good health day. I miss the way I used to be and some days I have a hard time not breaking down and crying. I just feel like I'm never going to feel good again ever. I love my children, but I don't think I would of had children if I had known this is what would become of me. Is that selfish? I knew I would have a "flare" after I got back from Jamaica. I just knew it. It's why I wasn't as excited to go. That's depressing. 4 days without my kids in a tropical resort and I kept thinking about how I was so going to regret this in a week.

I went to the dentist today because I have a tooth that is very decayed in the back of my mouth and I've been putting it off. I actually got excited because I thought maybe it was the cause of all my health issues. Of course, it isn't. The dentist told me he thinks the mouth sores which I still have by the way even though I feel better, are auto immune caused and that this tooth would not be making me sick. It crushed me. I really wanted it to be that and be that easily fixed. Something tells me I will be living with this forever. Anyway, welcome to my big pity party. Anyone bring any chocolate cake?

My flare is joint swelling and my fingers draw down... my knees.. usually get terrible in the evenings... at night is when I fall apart.... and my eyes get puffy and sting.. the lids swell... I haven't had that terrible eye infection in a good while....I don't want it...

Dnvrangel,

I'm so glad you posted here and urge you to start your own thread so everyone can get to know you. Have you been dx'd? How long have you had an AI disease?

I understand the kind of bad day you're having and you've come to the right place to vent and seek support. I also understand your situation about your brother. My stepson and his (not housebroken) dog are staying with us while he deals with his drug and alcohol plus problems with severe depression. He was in the hospital because of the threat of suicide and we brought him home when he was released. Now he says he's not ready to go back to work, or to his apartment, and his complaining are such a drag on my energy. I love his dog but his bathroom manners are about to drive me crazy. And I'm watching my 8 & 10 year old granddaughters while their mom works, and I MISS my serenity! Wow - I needed to vent too, I guess. What I'm saying, is that I really really relate to you. I guess your brother has no other family member that can take him in for a while?

Sometimes being sick can be overwhelming, and then when life steps in and gives us added responsibilities it's hard to handle. Lucky for me, I know that my stepson will be moving out next week because we've given him a deadline. And we won't be supporting him any more either. And the grandkids will be back in school in the fall. But it sounds like you don't have an end in sight. I hope you can find ways to get some rest.

I'm sending you a cup of Rosie's hot tea and gentle hugs.

Pat

Like Pat I always feel badly, but certain symptoms become worse and sometimes horrible. So here goes: It starts with fatigue that sleep doesn't help, followed by a strong, diffuse pain at the back of my neck. Next I become so weak that I am SOB from walking up the stairs to my bedroom. Then the pain spreads over my body. Often elbows, shoulders & feet hurt. My tremmors, balance, clonic jerky movements & stuttering worsen. Brain fog makes concentration very difficult. I get sores on my tongue. When sjogrens is bad my mouth, nose & skin dry to the point of spliting. I get keloid sores at the corners of my mouth. My vagina is dry in a league of its' own. My mental health is maintained with prozac, wellbutrin, seroquel & ambien.   Oh, a side note: I always take my meds. I spent two days in a mental health facility for attempting suicide during my undiagnosed phase. The facility sucked big time so I learned my lesson.

I have prescription drugs I use as needed for mouth sores, keloid sores, splitting skin. Over the counter for dry mouth I use Oral Balance, Biotene toothpaste, mouthwash without alcohol. For dry skin I use Eucerin cream. Systene for my eyes. I've been flaring lots lately (like now), but it only lasts 2 days. Depression and Sjogrens is on going. If you've read this far you should get a commendation. As always to all my lupus sisters, I send lots of love. Butterflake