Hi, everyone...
When do you KNOW you are flaring? I mean, does it not just continue to act up? I get some days where I feel better than others, and then one day it is harder to walk due to stiff, sore hips, ankles, etc. Is THAT flaring? Thanks. ???
CAT
I usually know when I'm flaring when I feel like I have the flu and feel feverish.
That are usually the first signs of inflammation appearing afterwards.
Mainly in my joints or musles, sometimes stomach or bladder issues.
I haven't had a single day that I felt better.
So I guess if you have a lot of pain and not really relief it means you are still in a flare.
I have kind of been wondering about that too.
What a 'flare' really means and if you still continue to have a lot of pain and aching if it is still 'flaring.''Although sometimes have better days)
Gentle hugs! :-*
As Shani says it is like sever flu symptoms. Everything seems to hurt at least 10 times more than normal. When this happens I focus all I can on managing the pain and bringing it under control.
OMG.. i am flaring when i have a hard time swallowing and my eyes are burning so bad even shutting
them doesn't help.. also i have an even harder time sleeping... i don't see how one could not know
they are flaring.... if you dont have the ext ups and downs.. be glad.. we need a cure...
I wouldnt kjow a flare if it smacked me in the face,, its been all downhill since 08 for me,, nothing has slowed the progression,,
I am with Navydad on this one. I have no flares. Steady downhilll course that now and then levels out....kinda like the economy.
I know I don't suffer from symptoms as badly as some do here, but I do know a flare when I feel it. Mine usually feels like a bubbly/flu like feeling all over my body. My muscles feel weak, I am tired and I just feel yucky. Almost queasy like. It usually lasts about 6 days and then subsides. This has been my experience now that I have been on meds for about 5 months. Before meds it was awful everyday. Like everything, I think it just depends on you.
These symptoms also flood upon me under stress. If I am in a stressful situation I find myself feeling this way almost instantly.
hey.. the bad thing about feeling better is that you are always waiting for the shoe to drop... i had about 9 months of pure misery and then i get a few weeks where yes i still had to do my warm compress and drops but felt a lot better... now i am back to where i was... i dont know what is worse.. i guess it is better to have some relief but sometimes it only lasts a few days.. ughhh i am sorry you both havent gotten any relief but dont give up hope.. i came down with this in the spring of 07-was horrible everyday until 2009-i had about 6 months off and on where many days i felt pretty good--it came back on with a vengence but now i sporadically have times where i feel better... it is still always a struggle... plus i have only been on 400mg of Plaquenil for about 2 consecutive months now--and i am hoping it will help my dry eyes as a few people on here have said it did...
Quote from: valene2009 on December 21, 2010, 06:51:33 AM
OMG.. i am flaring when i have a hard time swallowing and my eyes are burning so bad even shutting
them doesn't help.. also i have an even harder time sleeping... i don't see how one could not know
they are flaring.... if you dont have the ext ups and downs.. be glad.. we need a cure...
VAL, I DO have issues most of the time, but because I am "newly" DX, I also want opinions. THAT is why I asked. How fortunate you must be to have a Dr that explains everything to you. Blessings.
Everyone would like a cure. There is some research being done as to what is going on with AI diseases. Until a few years ago most doctors believed that what we were experiencing was all in our head and we just had to find the correct mix of anti-depressants and anti-anxiety pills and we would be just fine. The DEA had stepped in and said that we do not need pain pills. Besides we might become addicts.
While I know that a number of people here will disagree with me, I personally believe that AI diseases were developed as a bio-weapon by the Japanese during WWII from L-bacteria and Mycoplasmas. I also know that this does not fit the western model for diseases and illnesses. Yet some of the original research was done by the Lister institute over 100 years ago. When R. Rife brought this concept forward in the 1920's and 1930's (before weaponization), the AMA shut his research down saying "No bacteria has more than one form". The CDC has recently changed their position on this after the 1996 (?) red tide flair in Boston Harbor when their researchers started dropping like flies from AI diseases as reported in Popular Science Magazine.
As I have said before, find what management works for you. Do your own research. Before you start something new consult your health care professional. Most of the time you know more about you than your doctor does (24/7 versus 15 minutes/ once per month). Take care of yourself. Be kind to yourself.
I also have good days and bad days; I guess the bad days might be considered minor flares. To me, though, a flare is when the disease takes over my life.
I'm often tired, but I can stay up throughout the day when I'm not flaring. If I absolutely cannot do that, or if I take more than one nap, that's a flare.
If the symptoms that bug me a little in my day-to-day life are suddenly causing me significant pain, that's a flare.
If my eyes go from red to screaming red, that's a flare.
My flares won't go away without medication. The last one was a doozy, and it took a Medrol pack followed by four additional weeks on steroids to kick it. Fortunately, I'm doing OK now. I can't call myself a healthy person, but I can function if I make sure to take my daily meds and treat my flares. If I didn't treat my flares, I wouldn't be able to do much of anything.
Mornings are my worst,, I never know what pill to take
I just happen to be in my 3rd day of an awful flare... that is why i posted about my eyes...
i finally found a decent rheumy.. i have to travel 2 hours but the local docs here are awful.. One
of them asked me why i was there-and i told him i had sjogrens--he said because i didn't
have joint pain i was wasting my time.. i couldn't believe it.. i guess he had no clue what sjogrens was..scary..
My symptoms are mild compared to many of you here, but I used to get days when my eyes burned a lot or my muscles would ache like I was about to get flu. So I called those flares. Plaquenil and the various supplements my rheumy has recommended have helped me a lot and I seldom have problems with my eyes or with aching now.
What I still get once in a while is that sudden feeling of fatigue and know I have to sit down before I fall down. So I'd call those my flares now.
I'm usually somewhat bit tired most days -- depends on how well I've slept and whether I've overdone things for a couple of days. Learning how to pace myself has helped cope with the fatigue, but the sudden "falling-down" type appears out of nowhere for no apparent reason.
Prairie Gal-do you recall how long it took the plaquenil to help with your burning eyes? i have been on 400mg of Plaquenil for 2 months now and am hoping it will help with continued use.thanks..
Valene, the Plaquenil helped me produce more saliva after almost 5 months. It's hard to say for sure, but I don't think it helped my eyes because they improved very slowly -- took 4 or 5 years.
I therefore think my eyes improved because of the supplements (Black Currant Seed Oil, etc.) I take. If you check the eye drops section at a drugstore, you'll see a product called TheraTears Nutrition. It's high in Omega 3s, which are also found in fish like salmon and tuna, avocados, walnuts and flax seed meal. I eat all of those.
Many people like the TheraTears Nutrition because it has what they need for their eyes in capsule form. I also take 4g. of fish oil daily now, but didn't start it until this past spring.
Supplements take effect very slowly. For example, my rheumy recommended I take several B vitamins this past May, one of which is Biotin. I'd heard some years ago that Biotin helps your hair and nails. Lo and behold, about 3 months after I started taking it I noticed how fast my nails were growing and how much stronger they are now. I think it's from the Biotin, since I haven't done anything else that I can attribute it to.
Plaquenil helps ease some symptoms, but the main reason I take it besides that is because my rheumy said it helps slow the progression of this disease. I'm all for that! I hope you get some good results from it in another couple of months; some say they had to take it for 7-8 months before they had any noticeable improvement. Others say they didn't think it was helping until they stopped taking it and then their symptoms got worse. Some improvements happen so gradually that they're not easy to notice. Anyway, I hope you do well on it.
mmmmm
Flaring for me is related to two factors, usually.
1) something physical, like a new node forming for my osteo arthritis, triggers a whole body melt down and I'm in terrible pain for several weeks.
2) terrible stress just overwhelms my system. I often am oblivious to this until it takes me down to the point where I'm just out of it completely.
The flare is total body pain, exhaustion to the point of napping during the day which I NEVER do.
Difficulty sleeping at night.
Depression and irritability.
Difficulty walking.
no fun.
Elaine
Thanks, Everyone...
Elaine, I must be now then. I don't know. My body feels like I have been hit by a truck. My stress level is very high due to the holidays, finances, and my mom and one of my sisters not speaking. (I am a human screen door...) No one really cares how I feel. I'm a faker. :-\ Maybe I should stick a copy of my blood work in their stockings. ;) I'm sorry to be such a Debbie Downer.