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HeatherinLC
New Member


Date Joined May 2014
Total Posts : 10
   Posted 5/21/2014 8:28 PM (GMT -6)   
I am new to all of this and trying to figure it all out as I go . Still rather confused but I have a question that I may be overlooking in the other posts (perhaps already discussed). I have many of the aches, pains, fatigue (flat out can't keep my eyes open at times), joint pains, swelling, etc. that have been discussed. My question is about memory and confusion. OH. MY. GOSH...my memory is HORRIBLE. I am a teacher and it is significantly affecting me in the classroom. I am having difficulty with my recall and I seem to be having a harder time putting a name with a student's face (I have always been great with remembering who is who & I have 60 students!). I can't remember information that should be ingrained in my memory by now. It is enough that I just feel like a complete dummy. Is this or is there a possibility that this could be Lupus related? I am only 41! Honestly, this has been the worst feeling. I have not mentioned anything to the Rheumy about this or my PCP but maybe I should? I am just embarrassed that this is happening and not sure how to explain it...Thank you for listening ;-)

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 5/21/2014 8:59 PM (GMT -6)   
YES! This is very much a part of Lupus! Please keep your Rheumy updated about *anything* that changes with you -- it may be either Lupus, one of the secondary diseases that often accompanies Lupus, and/or a medication side effect!!

It is a real issue, you aren't imagining it; you are not a dummy. At one point when my Lupus was very active I was tested by a neuropsych and they claimed my deficiencies were the equivalent of a 12-point loss in IQ. Thankfully once my Lupus became quiet things are back to (or almost back to) normal.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 5/21/2014 11:00 PM (GMT -6)   
Lupus can have anywhere from a mild neuro psychological impact to a severe one. It is affectionately called "lupus fog." Not really much fun for any of us that have the problem. You will have to learn to compensate for it and develop strategies to do your job and activities of daily living.

Some meds can also cause or aggravate the problem and prednisone is probably the worst.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/21/2014 11:58 PM (GMT -6)   
Sounds like me. I was an elementary school teacher for 12 years before it hit me. Mine scrambled me up really bad. I thought I had early dementia.
The last two years I felt so dumb from the fog. We were learning new teaching methods during that time and I couldn't retain the information to save my life.
I decided to go ahead with retirement about the time our school closed and merged with two others. I was one of the lay-offs.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

HeatherinLC
New Member


Date Joined May 2014
Total Posts : 10
   Posted 5/22/2014 6:54 AM (GMT -6)   
Lynnwood, Bill & Couchtater-Thank you so much for your responses. Really it has been the last couple of years that I have noticed this decline (the last 6 months being the worst). I chalked it up to many different reasons: stress, depression, anxiety, etc., whatever I could grasp to try and rationalize what was happening. I even thought I was just losing my mind. I pondered buying a subscription to Lumosity (which I still may need to do!lol). For those of you that are on the Plaquenil: does it seem to help with the confusion/memory loss? Thank you again :)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/22/2014 12:58 PM (GMT -6)   
Try bigfish.com for puzzle games. I use them for my mind exercises.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

HeatherinLC
New Member


Date Joined May 2014
Total Posts : 10
   Posted 5/22/2014 4:24 PM (GMT -6)   
couchtater said...
Try bigfish.com for puzzle games. I use them for my mind exercises.


I will definitely check it out! Thank you for the rec!

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 5/22/2014 8:01 PM (GMT -6)   
I am a teacher and I totally can relate to what you are going through. I went from full time to working 4 days a week, which has really helped. I still have days when the brain fog affects my teaching and my ability to work with kids. I work in Alternative Education, so I end up having students for a number of years, sometimes until they graduate. Because of this and the relationship we develop, I have been very open with my health issues. Having the kids understand what I am going through has really helped. They are very curious about my ups and downs and completely understand when my fatigue is severe or I have trouble getting my words out. I am on Plaquenil and I don't really notice a difference with my memory issues.

Laura

HeatherinLC
New Member


Date Joined May 2014
Total Posts : 10
   Posted 5/22/2014 9:10 PM (GMT -6)   
oreo11 said...
I am a teacher and I totally can relate to what you are going through. I went from full time to working 4 days a week, which has really helped. I still have days when the brain fog affects my teaching and my ability to work with kids. I work in Alternative Education, so I end up having students for a number of years, sometimes until they graduate. Because of this and the relationship we develop, I have been very open with my health issues. Having the kids understand what I am going through has really helped. They are very curious about my ups and downs and completely understand when my fatigue is severe or I have trouble getting my words out. I am on Plaquenil and I don't really notice a difference with my memory issues.

Laura


I am at a private (Christian) school and I really have some fantastic students!! I have only shared with my first block class (when we pray) what I am going through and really have made light of it because I still don't know for sure what is happening. Just that they are treating me for Lupus but without the diagnosis. I joke around basically and say "You know how bad my memory is these days!" haha! I haven't even talked to the Principal about what is going on because I am still not positive. I can tell you that I spent three days last week with trying to push through but at times with my head on my desk. I can push through ANY sickness but this is an entirely new "animal" to me. Honest to god, I have gone through gall bladder infection pains in the middle of class and still kept pushing through. This FATIGUE AND CONFUSION is just bizarre. I tested positive speckled pattern on the ANA, and positive on something else Lupus related (not sure what the heck it was though). Waiting for the results on a anti-DSDNA (?) test. It is like I just know I felt REALLY bad for the last few years and no amount of vitamins/juicing/healthy eating changed it. I am at the point of thinking, how serious is this!?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 5/22/2014 9:23 PM (GMT -6)   
What meds are you on? I noticed my memory & cognitive issues where the worst when my inflammation markers (from blood tests) were out-of-range. Sure hope you get the rheumy to treat you soon.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

HeatherinLC
New Member


Date Joined May 2014
Total Posts : 10
   Posted 5/22/2014 9:46 PM (GMT -6)   
Based on what I have read I think I am very fortunate where my Rheumy is concerned so far. After two positives (& many questions that he has had) he started me on Plaquenil (200 mg) & 5mg Prednisone (right hand joint pains/inflammation/side of the hand CRAZY/TWEAKING pains) but I don't think I fully indicated how achey & confused I am, to be honest. I am still in this mindset of "I am tough and can handle it" mentality and what I really want to tell him is "I feel like a mess." :(

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 5/22/2014 9:58 PM (GMT -6)   
TELL HIM HOW YOU FEEL, both mentally & physically!!!! This is a real disease, not some mind-trick you can power thru. You are only hurting yourself. If you want his best possible effort, you have to give him the best possible data!! That means tell him everything, don't decide on your own what is relative or not relative. That is his job, and you never know what little observation on your part may give him the key to a better treatment plan!!!

Believe me, I powered thru for years, and there is no reason for it! I think if he hears about your cognitive difficulties, he may increase your prednisone, which may lower the inflammation and decrease the confusion.

When is your next appt? If more than 2 weeks away, you might think about moving it up or ask to be put on the wait list for an appt. This stuff can really be crazy-making!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

HeatherinLC
New Member


Date Joined May 2014
Total Posts : 10
   Posted 5/23/2014 5:14 AM (GMT -6)   
Lynnwood said...
TELL HIM HOW YOU FEEL, both mentally & physically!!!! This is a real disease, not some mind-trick you can power thru. You are only hurting yourself. If you want his best possible effort, you have to give him the best possible data!! That means tell him everything, don't decide on your own what is relative or not relative. That is his job, and you never know what little observation on your part may give him the key to a better treatment plan!!!

Believe me, I powered thru for years, and there is no reason for it! I think if he hears about your cognitive difficulties, he may increase your prednisone, which may lower the inflammation and decrease the confusion.

When is your next appt? If more than 2 weeks away, you might think about moving it up or ask to be put on the wait list for an appt. This stuff can really be crazy-making!!


I have an appt. June 5th. I had more blood drawn a few weeks ago and the Rheumy said to call in 10 days and the nurse would give me the results. I called yesterday and the nurse basically said that "There is a lot that came back here and I will have to give it to the Dr. to review and have him call you about it." So of course I am thinking, 'What the heck!?' I did not hear from him yesterday but maybe he will get back with me today. I will definitely let him know how I am feeling when I speak with him though. I have such a Love/Hate thing going with prednisone (hate the weight gain/love the ache relief) but he indicated that he only wanted me on it for two weeks. I am a little nervous about what my aches are going to be like when I come off of it sad
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