tag:blogger.com,1999:blog-690850457652849477.post959482342768910582..comments2024-03-19T09:10:47.280-07:00Comments on Reasonably Well: Tufts Study: Despite Burden, Sjögren’s Syndrome May Not Impede FunctionJulia Oleinikhttp://www.blogger.com/profile/04857783768340014545noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-690850457652849477.post-8917515814693730172014-02-06T10:46:54.779-08:002014-02-06T10:46:54.779-08:00It is discouraging to read comments like that from...It is discouraging to read comments like that from researchers in vetted journals when you know from personal experience that it is not true. I agree with you that the fact that a longitudinal study was not done means that the information they collected doesn't include a lot of data that would have made for a much more accurate representation and perhaps changed the results of the study. Thank you, Julia, for giving us Sjoggies credit for the coping skills, positive attitude and perseverance that enables us to cope with our illnesses as well as we do.Triciahttps://www.blogger.com/profile/02601539669177463755noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-57669074768010446352014-02-06T07:13:38.208-08:002014-02-06T07:13:38.208-08:00Bubble Girl -Your doctor should have explained tha...Bubble Girl -Your doctor should have explained that neuropsych testing is to assess loss of capability in things like short term and long term memory, assessing information, forming patterns, speed of doing tasks (numerical, organizing, etc). I did it, and a number of issues were discovered. It may help to serve as proof that some of the brain fog issues are real. Google it and learn more.Kate Snoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-76098035355225108052014-02-06T06:43:12.592-08:002014-02-06T06:43:12.592-08:00Even though for me (so far), the fatigue I experie...Even though for me (so far), the fatigue I experience is not debilitating, I get offended by the "just dry eyes and dry mouth" statement that so many doctors make. My eyes burn constantly, and no amount of eye drops, ointments, etc. can make the burning go away. Punctal plugs in all 4 ducts did nothing, and neither did Restasis. Tests have shown that my eyes produce virtually no moisture, and I have to keep Lacriserts in day and night (and even these stick to my lower lids and refuse to dissolve unless I keep flooding my eyes with drops) and to avoid dry patches on my corneas. I also have mild kidney disease from Sjogren's that is being monitored and swollen painful joints. If I had listened to the first doctor I saw who said to chew gum, use eye drops, and live with it, I would not know just how serious this disease can be.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-5605402088814453622014-02-06T06:02:45.479-08:002014-02-06T06:02:45.479-08:00Guess my Rheum read said study cause I still haven...Guess my Rheum read said study cause I still haven't gotten past the lecture I received from him re: SJS is "dry eyes, dry mouth, and less than a 1% increased chance of developing Lymphoma" This from an MD who has been in rheum practice for many (25+) yrs in this town. Guess the fatigue and excrutiating joint & muscle pain are all in my head and the SSA/B antibody results that top the scale don't mean much. I have been overwhelmingly discouraged by my experiences w/t world of Rheumatology.Lisanoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-42261306450856907572014-02-06T04:51:43.722-08:002014-02-06T04:51:43.722-08:00I would rather researchers stop wasting time and m...I would rather researchers stop wasting time and money on these useless studies and focus instead on a cure or at least an effective treatment for this debilitating disease. Sorry for being snarky. Just having another bad day after another sleepless night.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-63697515515688832112014-02-06T03:24:55.162-08:002014-02-06T03:24:55.162-08:00This research clearly supports my hypothososis tha...This research clearly supports my hypothososis that is it very difficult if not impossible for healthy people to understand what it is like to live with chronic illness. :-)Hedahttps://www.blogger.com/profile/00953091713220195010noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-67320610884673883142014-02-05T21:03:55.421-08:002014-02-05T21:03:55.421-08:00A neurologist just told me my fatigue and forgetfu...A neurologist just told me my fatigue and forgetfulness are not related to any neurological problem and I should have neuropsych testing done. I was thinking here we go again, first the pain was all in my head, now my brain reacting slowly is because of psych issues? I already know I have PTSD and have had it since about 1999 and I wasn't this way till the last two years. And the PTSD is not affecting me because I've done years if therapy. So I roll my eyes again at yet another Dr. I have fibromyalgia and Sjogrens and I know they both cause brain fog, I just wish Doctors understood that.Christina https://www.blogger.com/profile/14573410980007011505noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-29901252226876314652014-02-05T17:00:59.282-08:002014-02-05T17:00:59.282-08:00I completely agree with your interpretation. I'...I completely agree with your interpretation. I'm able to function, because I'm one tough cookie. My life is MUCH harder than before my diagnosis, but I'm strategic and, if I'm careful, I can usually still lead a pretty normal life. I also know that I'm lucky, because that's not the case for everyone with SJS.Anonymoushttps://www.blogger.com/profile/00920839235404358348noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-12311501408403005622014-02-05T10:55:03.386-08:002014-02-05T10:55:03.386-08:00I agree with all that's being said in the abov...I agree with all that's being said in the above remarks. I get absolutely insulted to be told by healthy people like researchers and insurance reps that despite it all, we are well enough to work and function. I have news for them, let them walk in our shoes for a few days and see how well we function.<br /><br />Sure, I can get dinner on the table and do some odd chores around the house, but the chores take me days and weeks to do and then I pay the price by being so fatigued and brain fogged I'm completely out of commission.I have no social life and hence no more friends because there's a cost to being fatigued and being unable to socialize like normal people.<br /><br />Like someone mentioned, most of us are battling more than one illness, and I know for myself, being diagnosed took over 10 years, while I struggled to work and got sicker because no one believed I was sick, the darn test results were always good or borderline, never mind trying to get some disability. No one has a concept of what we suffer to get through the day...fatigue, sleep disturbances,food intolerances,gastro problems,pain,constant lightheadedness, dryness,sinus problems and the list goes on. This is on a daily basis,so please don't insult us by telling us we are able to function well with sjogren's. annienoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-7175202418437078532014-02-05T09:49:36.658-08:002014-02-05T09:49:36.658-08:00I find this pretty irritating. However, I am one ...I find this pretty irritating. However, I am one of those who is only inconvenienced by the dry mouth and dry eyes. Natural tears, lotion, a humidifier at night...all help fairly well. However, the fatigue is absolutely crushing. The joint pain adds to that and keeps me stuck in my house 5-6 days a week. We certainly CAN function compensate reasonably well. However, I've found when I attempt to function and compensate at my previous levels, I then 'pay' for my activities several days thereafter. Activity is now carefully planned far in advance so as to allow for ample rest time beforehand. This study also did NOT mention that most of the Sjogies I know are also managing multiple illnesses -- many of which came on as a result of the other. Yes, I admit, I'm irritated by this study and do not find it to be accurate. I also think this only adds to the the need to slam my head against the wall due to the preconception of "Sjogren's is just dry eyes and dry mouth". Grrrr....<br /><br />Julia, you summed it up well with your take on it: "Patients dealing with Sjogren's syndrome are tough and resilient people with an impressive cache of coping tools." LMnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-23141439303249238572014-02-05T09:10:51.534-08:002014-02-05T09:10:51.534-08:00Some Google searching indicates that the lead rese...Some Google searching indicates that the lead researcher, Lynn C Epstein, enjoys a very positive reputation as a researcher, and is an active participant in the Sjogren's community, including participating in Sjogren support activities. So my concerns about some inherent bias are quelled. Kate Snoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-1357024731104266422014-02-05T08:54:20.540-08:002014-02-05T08:54:20.540-08:00Without being access the full article, I don't...Without being access the full article, I don't know what to think. I guess the real question is the selection process and criteria for Sjogren's and control candidates. <br /><br />I will note that the two principal researchers are a psychiatrist and a dental doctor, which may mean that the patients were those with dental issues, rather than those who are focusing on the fatigue, joint pain etc. <br /><br />I'm facing a bias here - when a bit of research comes out that does not match one's own experience, there is a tendency to say "that's not true". And certainly the conclusion does not match my experience, nor my clinical testing, which includes diminished physical ability, reaction time, loss of various intellectual abilities, etc. <br /><br />However, there is a wide range of people with Sjogren's and I probably am close to one end of the spectrum. <br /><br />What I find unsettling is the press release statement "Our results suggest that people living with Sjögren’s still are able to maintain a reasonably high level of function, despite their perception of declining function over time." <br /><br />What I dislike is that there is no qualification to this - that many people may be able to... Or those with some set of characteristics, etc. <br /><br />This is the sort of thing that insurance companies will grab on to and use to say "it is all in your head". <br /><br />For another, very interesting survey article on Sjogren's fatigue, see Too Dry and Too Tired http://rheumatology.oxfordjournals.org/content/49/5/844Kate Snoreply@blogger.com