Hi...
I realize all of us are different and each disease process looks different to the individual.. but I'd like your opinion this question.. When is a flare really a flare ?
Is it when the symptoms you have had for awhile get worse ? or is it when new symptoms appear and exacerbate chronic symptoms ?
I ask because lately I've developed a ton of new symptoms such as stiffness in wrists, ankles and hips. My mouth and throat are drier than ever, I'm back to the cold compresses on my eyes every couple hours...My lower back is aching, and my knees are very painful especially in the middle of the kneecaps straight across (like shin splints but in my knees. My shoulders feel the same 'crunchy stiff'.. Its getting harder to work and do the exercise necessary to improve my cardiac status...
I did call my new rheumy, (we haven't met, I see her for 1st appt in 3 weeks)... She couldn't fit me in any sooner, and told me to call GP, my GP said I could stop the aspirin, double the protonics and take Aleve for a week or so and see what happens... I had some improvement but not much... It was too much juggling of aspirin and coumadin and blood tests to continue on the Aleve. He sent the new rheumy an email urging her to fit me in, he is going to use the 'heart attack' card lol ... sorry... way off track with all of that...
I realized from other posts that my new meds could be causing some of the weakness and balance issues so I'm going to speak with the prescribing doctors about it... but it seems like no one doctor will fess up to knowing how all of these meds are affecting me as a whole... I'm taking 15 meds and have 4 doctors now and each one wants only to address their specific meds and treatment....... :( I'm so frustrated...
I realize that any stress to my system (my heart stuff) could cause an increase in symptoms, I think its a combination of a lot of things... but this is getting scary...
thank you so much for letting me go on like this, but its been building up, I'm trying to stay positive, but with the heart, holidays, my kitty and finances my head is spinning...
I'm sorry Seabreeze that you are having a rough patch. I tend to experience symptoms in waves and have some times where I feel better than other times. I simply call a flare when my symptoms reappear. If I take it easy and not over exert myself I can actually feel pretty good for a bit. It doesn't take much to put me into flare mode however.
Good Luck with the new doc.
Steve
Hi SeaBreeze
Not much help here I'm afraid. I don't really have 'flares'. I have days that I feel worse than others and days when I feel better but no straight 'flares'.
Sorry you're feeling so bad. I'm sure the stress can't have helped.
Take care - Scottie :)
I too have good days and bad days.Late afternoon into evening everyday goes really bad but when a flare strikes it's way worse symptoms and I may not understand that it's an actual flare at first.I hope that's not confusing but then again everything about this illness is confusing.I can't push through a flare like I can a bad day.
Ruby
Oh Seabreeze ((((HUGS)))))
You are under way too much stress - I wish I could help.
I hope this new rheumy steps up to the plate and has the answers for you.
Sue
Hi SeaBreeze
We are all so different, aren't we. I'm not surprised you are in a state just nw, you have had such a lo going on in your life, I'm surprised you are even able to post.
Anyway, for me, I do get better days and worse days, but I have had two definite flares in the past year. Both times, I could do little but rest, sleep and eat.
At the moment, I'm feeling pretty good. I have had a ten day break from work for Christmas, so this may be the reason.
I hope life becomes easier for you soon.
Kathyx
Thanks for your responses... I think I would go 'really' nuts if I couldn't come here and post.
I have a busy week ahead, lots of phone calls and 'connections' to make. I put a lot off 'for after the holidays'. I have a couple of initial rehab visits to go to (PT and cardiac), prescription samples to fetch.. But I woke up feeling half decent today... I've removed all 'whites' (flour, sugar etc.) from my diet as of last Wednesday, maybe I've been in withdrawal...
I'm with Katybarstool on this...I have good and bad days...but the flare seems like a bunch of symptoms
start hitting one after the other...and it has put me out for two weeks before. Usually i have a few reg
symptoms...but just like this past week my BF and I split and all the stress just kicked up stuff
that isn't regular. Started tremors, rash, lower back and hip pain, along with my right and left knees
taking turns on which is going to hurt worse....but like everyone else says..each case is different....
it would be nice to get all this stuff nailed down...let me know what your new Rheumy says...
maybe you will get a good answer. I hope you get to feeling better soon.
JJ
I'm a bit curious what symptoms go away... for me, it seems like I'm just adding new ones to my list, and not marking old ones off.
Like, for anyone who's had joint pains, has it ever gone away? I'm going on 7 months, the last 3 on plaquenil, and mine aren't...
I too feel I'm adding symptoms to my list quickly. But have noticed one pattern. Can now recognise if my lips are turning a beautiful red it's trouble. Before long I'll have a red burning mouth, throat and within a week, painful long healing sores. Then burning eyes and nostrils and if untreated, eventually will involve my whole system is involved. By then I'm in bed and wiped out.
If I can recognise those lips and treat early the process will stop. Still have a time of great discomfort while healing. One day maybe I'll figure out what I do to trigger this cycle.
Chico
HI Nathan
Yes, I do have the joint pains. I also have arthritis pretty much everywhere. I use Celebrex 200 mgs each day, along with amitriptyline and upto 8 paracetamol each day. This mainly keeps the joint pain at bay, but sometimes I still have to use heat pads.
The arthritic pain had made my life a misery. When I started acquiring the fatigue, dry eyes, ears, nose, asthma etc, I thought I was going mad. However, when I was finally diagnosed with Sjogrens and realized that a lot of these symptoms belonged to the one condition, I found it easier to cope with. I suppose the diagnosis showed that it wasn't all in my mind, and gave me the strength to try to beat the symptoms, whereas previously I had 'given up' and was probably suffering more as a consequence.
This probably sounds loopy, but I hope you understand what I mean.
Kathyx
As far as pain goes, i usually have pain on a regular basis...however there are times
where it gets so bad, it takes a great effort to get up, move...or even want to do anything
and I start with the whole rash and tremors thing.
I call those time flares...maybe this isn't normal for Sjogrens. Like I can get through
the day for the most part..but on those particular days it seems imposable.
JJ
JJ... sorry to hear about the breakup with BF... that can add so much stress to your daily life.. when I split from my exh, it was partially relief and stressful... I'm learning that the stress is absolutely something I need to learn to reduce, but that's not easy either.. sometimes there is not enough 'time' to do stress reducing activities.. Yikes ! I've grown fond of a couple of meditation CD's, practicing my breathing and listening to them seems to take my mind off of everything for awhile anyway... good luck with everything...
Breezy,
Im not all that much help with the flare bit, but in regards to your meds try going to your chemist and have a chat with your pharmacist about all the meds. THey can have a look at what you're on and the side effects and how they interact.
I had this once and it was really helpful to know how things were reacting and what side effects i could expect
Pud
Hi Seabreeze
I'm so sorry that you are feeling as poorly as you are and send you a hug and some steaming soup!!
I have my good days and bad days, but when I have a flare it lasts for about 4-8 weeks and I can barely get out of bed, and when I do I have to get on the sofa to recover from the exertion of just walking down the stairs. I just feel totally fatigued, nauseous, can't concentrate, talking takes up too much energy, feel like I've got flu, have dificulty walking with weak legs and sore knees. My usual SjS problems seem to increase by 100 %. For the last few years I've had about 2 or 3 episodes like this a year. That's the best way I can describe it.
I truly hope you start to feel better very soon.
Love Wen x
I think we all get a little bit distracted from the main topicstarter's theme
This thread is almost two years old. I think it was retired. ;D Lucy
Hi... As Lucy said, this is an old thread that I started over a year ago..
I'm very sorry that you felt distracted by the theme.
Keep reading, there are tons of great threads and helpful information.
Best of luck to you...
Seabreeze2 a.k.a. Seabreeze ;D
MS has some premade terms that lend themselves quite well to Sjogren's issues.
An 'exacerbation' is a medium to long term resumption of symptoms or addition of new ones.
A 'pseudoexacerbation' is a very short term (typically 24-48 hours) aggravation of old symptoms
brought about by temporary factors such as stress, unrelated illness, diet, heat, etc.. A pseudoexacerbation
just highlights existing damage, it doesn't include anything new and typically passes fairly quickly.
Borrowing from that model one could say a true flare is anything over 48 hours or anything involving new
symptoms. It's a useful model for me and hopefully for others too.