Hello all,
It's been a while since I posted. This has probably been one of my best years health wise since I was diagnosed with SjS. I credit years of parsing out which issues are which (for example learning that I have SjS and sero-negative RA) and finding an excellent rheumatologist who placed me on a life changing medication (Imuran).
I've been able to work far more and enjoy life a great deal more than ever. I still tire far more easily than I wish and doubt I'll ever have the kind of stamina that I used to. That said, life is far better than I ever imagined it might be.
I wanted to share this article which was posted by AARDA on their FB page this a.m. http://onlinelibrary.wiley.com/doi/10.1002/1873-3468.12933/epdf
Best wishes to all for a happy or happier 2018.
Interesting article SjoGirl, but I take issue with this claim:
"Furthermore, analysis of these
individuals personality traits and psychosocial status
has shown that they are not able to cope and handle
stressful situations, their personality is characterized
by hypochondriasis, neuroticism, psychoticism, and
obsessiveness, and they express high levels of introverted
hostility..." :o :o :o
I don't think so!
On another note, so glad to hear you're doing better!
Any side effects with the med?
Does the Imuran help with the dryness?
I sort of skimmed the article and found the phrase mentioned by Sharon. I have to add that I assume the authors are anal retentive or else they had run out of anything pertinent to talk about. This reminds me of my nurses training many years ago where the orthopedic doctors said that 75 % of back pain was all in the patients head. They also said that the young men with ulcerative colitis were over attached to their mothers and their mothers babied them. These egotisical doctors were too self absorbed with their own importance to figure out that these young men were dying in front of their mothers eyes.....literally shedding blood and the liningfrom their bowels and there was nothing the mother could do but watch.
Stress and emotions are involved in all peoples lives in one way or another but to blame people for actively causing their own illnesses is beyond the pale as far as I am concerned. And yes, emotional issues need to be addressed but blaming the patient is uncalled for. My own opinion, of course. Irish
i also read the article and, while ive been " accused" by some of the doctors i met of being hypochondriac when i started feeling dry, i dont think the authors are blaming people for actively causing their illness. i found the article very interesting and i must say that i very much even if not completely,recognize myself in the description made.
I do agree that stress can be a culprit in any disease
though I don't think any amount of stress-coping abilities can necessarily prepare one
for the serious life traumas that may trigger these conditions.
I have long believed that illness causes stress rather than stress causes illness.
Katie1111
there are many simple examples- occasions about how a shock or big stress can struck... think people who loses hair or hair becoming white or straight in few days, or blood pressure going super high, or saliva that desappears before an exam or during an emotion, goose pumps etc... and they mention how illness itself gives stress so its an endless story. but there are also people who go through stress without getting sick, so probably there is a predisposition to sickness in our dna waiting for the occasion to come out
Well I am introverted and somewhat neurotic at times, and I don't handle stress as well as more outgoing people. I mean I tend to become physically sick if I have a lot of mental/emotional stress. So maybe that applies to me with the Sjogrens, but how can anyone ever be sure what has caused it?
I believe it goes both ways: stress can cause illness and illness can cause stress,
but you don't need to be mentally ill or lacking in normative coping mechanisms
for this to happen.
My autoimmune symptoms began shortly after I experienced a very traumatic event,
but this was not the type of event anything in life prepares you for.
I tried many things to calm my system down after the event but nothing helped.
Sharon et al goes to show that I should not post a link to a piece that I have not read thoroughly (boo for those who describe as as those docs did). There is from all I've read and my experience a clear connection between stress and illness, but it seems to me a chicken and egg matter (and if you've lead a highly stressed life and no one taught you healthy coping skills you might not be so good at coping -- it's not your fault).
I do know that I've learned about what my care team members called a spiral where one thing leads to another to another. My goal over the years that I've been ill is to stop the spiral before it becomes out of control (my husband and I actually refer to seeing the wall before I am about to hit it going 60 miles an hour).
As for how I am the Imuran has been a godsend, it's helped with many symptoms, particularly joint deformity and pain. I can't say it's helped with dryness, the Evoxac has been the game changer on that front. I also have to still take Lanzoprazole daily, but less than I used to. I also find that moving matters, it matters a lot (which is reinforces as I'm mostly stuck inside given the frigid weather here).
I ache the most after cleaning, lifting, etc., but use my heating pad, electric stim, good old Ben Gay and and Tylenol.
Here's wishing all of you a happier new year.
SjoGirl- It's actually a very good and interesting article. I'm glad you posted it.
It's just a shame the authors felt the need to stigmatize SS patients in that way,
but that is the trend with many other illnesses as well such as fibromyalgia and IBS.
I agree stress can be a spiral and you have to learn how to put the brakes on it so it doesn't cause a flare.
I'm also on a serious med for RA which has been very helpful for the joint and tendon pains.
Still, like you said, cleaning is still a problem.
Wishing you and everyone alse here a year of much improved health and happiness! :-*