Flares?

[bebe127]

Hey all,

Hope you are as well as can be.

I have a question that I'm sure has been asked on here before and might sound silly, but I'm going to ask it anyway. Besides, for some reason I cannot look up threads using the forums search.

Anywho...

What exactly is a flare to you? I know everyone is different and experiences different symptoms, but I'm not sure I understand what a flare really is. I pretty much feel crappy daily, it's only the degree of crappiness that changes. I basically feel like I have the flu, menopause and a hangover simultaneously, daily. I do have "episodes" where I have "panic" like symptoms, but those are few and far between. I think I could handle the symptoms if they weren't all happening at once. Thankfully, I am not bedridden although if given the choice I would probably stay in bed all day. There are days that I do have to stay in bed though, is that what is considered a "flare"? I still don't drive all that much, and never on my own anymore. I don't faint, I don't think I have OI, I don't have exercise intolerance, I do have heat intolerance at times, I basically just feel really bad most of the time. Have I just been in a flare for four years? Maybe I'm just a lazy complainer

I'm considering going to the dr. again to begin the process of finding out exactly what is wrong with me, but I hate it when they ask questions like, "How do you feel?" or "Is there something specific that is bothering you?" or even, "What's the one symptom that bothers you the most?" I feel like the only response I have is "I just don't feel good/right." It's so hard to pinpoint one particular symptom because I feel so crappy daily. I have begun to chart how I feel and my symptoms along with my vitals daily in the hopes that it might help me and/or the dr. understand better what is going on, but everyday seems to be the same. I feel like just writing "ditto" on every day's recordings.

Just wanted to know what you all have experienced. Thanks in advance.

Be well,

Bebe

[HopeSprings]

I know what you mean. I don't think I have flares either. I feel unwell everyday, with pretty much the same symptoms. Some days or weeks are worse than others and some days are a little better than others, but I'm never symptom free and doing well and then suddenly have a "flare." I don't know if the really bad days can be considered a flare? I think there are people who do quite a bit better for a while and then get knocked down - which must be really frustrating. And you are not a lazy complainer - you don't feel well and are expressing that which is what we're here for.

[bebe127]

Thanks Naomi, sorry you seem to be in the same boat as me. What do you do might I ask? Do you just try to push through? Think positively? Do what you can when you can? Have you found your new normal? In short, how do you deal with all of this. I've only been going through this for four years, but believe me, it's been the longest, hardest four years of my life. There are times where I can push through and there are times when I just feel like giving up and resigning myself to the fact that something is wrong, even if no one can tell me exactly what, and that I just need to learn to live with it. UGH! So frustrating!

[Joann]

Well, I am in the middle( I would like to think at the end of, actually) of a flare. It is where the poopiness you felt is tons worse. I am unable to do much of anything. I was driving but now I cannot do this Some times all I can do is lie down and I still feel terrible. My blood pressure and heart rate are higher during the entire flare, but at times I have huge jumps. I feel like I am having a heart attack, or something similar. I have ended up in the ER twice in the past weeks with extremely high blood pressure and heart rate increased, feeling awful. I cannot lift anything or bend. Food is the enemy, I want to eat but often can't. What I eat does not want to digest correctly. All of your symptoms are worse and you get additional symptoms that worry you (extreme pain below rib, with any movement is new, one eye becoming completely blood shot and then clearing and reappearing is one that seems to only happen bad during flares). Basically, life kind of stops and you just try to survive the moment and hope it will pass.

Oh and there is usually no one who can tell you what to do. You know you can't let yourself get deconditioned, but yet your body isn't able to do anything.

Well, thats how I see flares.

[bebe127]

Thanks Joann. I know you've been going through a terrible time and I hope this flare of yours ends soon. I do have better days, but most of the time I have so many symptoms at once, it's hard to differentiate. It doesn't seem to matter what my vitals are ie: high bp and hr or lower bp and hr, I still feel poorly most of the time. Eating is hard for me too. I feel especially worse after dinner (which husband puts together) and can really only eat about a quarter of what I used to. After dinner, I'm on the couch for about an hour feeling like death warmed over until I go to bed and lay in my room for hours trying to relax. I sleep poorly, very restless and fragmented and always seem to wake with the shakes (on the inside if that makes sense), it feels like tremors that wake me each morning, but my hr seems fine. I just don't know anymore. I just want to feel better, as most of us do, but as much as I push and will myself to feel better, nothing seems to be working.

[HopeSprings]

I have no idea how I get through this. LOL. It is sort of normal to me because I've been sick for so many years, but I've never come to a place of acceptance. I just push through and do the best I can. Those better days help keep me going, allow me to rejuvenate and then push on. If everyday was like one of my worst days... I don't know what I would do. I think the thing that helps me most (mentally) is to follow the research, to know that they are working on it and just hope answers will come soon.

[MomtoGiuliana]

In my case, most of the time my symptoms are minor. I typically experience palpitations and exercise intolerance and fleeting sensations of weakness, but can go about my day more or less in a "normal" way. A flare for me would be suddenly starting to feel a lot worse, with these symptoms getting more severe, plus feeling dizzy, lightheaded, fatigued, body temperature dysregulation, typically.

[bebe127]

Well, I guess I'm in a "flare" then. Usually I feel pretty poopy most days, but today I've felt worse than usual, same symptoms just more pronounced I guess. Vitals have been fine as far as I know. I'm pretty stressed out at the moment, so I know that that is fueling the fire. I just always see people writing about "flares" and wanted a bit of a clarification. Thankfully, mine don't last too long.

Thanks to all of you for your responses.

Be well, tomorrow is a new day

Bebe