Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi have severe brain fog too. Some days it seems worse than others, for me I think it depends on how much rest I get. But it still definetly there all of the time. Today I had to go and register my daughter for some classes, and even to answer some simple questions seemed to be a challange for me, and the guidance lady was looking at me as if I had two heads...2 heads covered in P LOL I was wondering if some of it was due to the pain I am constantly in, but it has to be more than that. I can't say much about enbrel, I was only on it for about 2 months before I got an infection and had to stop for awhile. I hope to resume it soon and I am hopeful for ALL of us that these new meds will be the answers we are all looking for. right direction with a good website to go to, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi , If you have a look back at the archives, its been mentioned quite a lot in the past. I personally have not been involved in the discussions although I know exactly what you all mean. lol. I can't make up my mind if it is my meds(MTX, Ciclosporin) or the PA itself. I think most people in the group lean towards the meds but I would be slightly inclined to blame the PA. I find I really struggle to think clearly when I am having a bad day (Like today) I feel that the shear effort it takes to ..........................??? What was I saying???.......................Oh yes, to keep going when I am in so much pain affects me that way. Little joke there. (Very little joke I hear you say) Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 , I had brain fog so bad while taking mtx that I was sure I had lost my once sharp mind and would never be able to function properly, ever again. But being off mtx and taking Enbrel and Arava has made a huge difference for me. I still have what we call " senior moments " around here but it is much more in line with what I think is normal age related short circuit than the devastating confusion I had before. Look back in the archives, I believe there is a lot about brain fog. It seems to be part of the disease and also medication related. You would find the archives interesting. Try not to worry too much and be thankful your family can finish you sentences when necessary. Good Luck with getting on to Enbrel. Cheri [ ] Brain Fog > I never hear anyone talk about " brain fog " . I'm I the > only one that has to have help from my family members > to finish my sentences? The words are there I just > can't seem to get them from my brain to my mouth. > > I am waiting for my insurance to pre-certify Enbrel. > I am so looking forward to all the benefits that I've > heard you all speak of from Enbrel. I know that I > will be terribly disappointed if it isn't as > successful for me as it has been for many of you. > What about " brain fog " ? For those of you taking it > with " mental impairment " , did it help you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 > I never hear anyone talk about " brain fog " . I'm I the > only one that has to have help from my family members > to finish my sentences? The words are there I just > can't seem to get them from my brain to my mouth. > I HAVE THAT! I don't know if it is related to posorisis or not. I have A.D.D. (adult attention deficit disorder) Sometimes I cant fine a simple word or name to save my life! It is really annoying. Often I just stop in the middle of a sentance... It drives me nuts! If anyone knows if this is related to " P " or " PA " please let me know! Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 In a message dated 8/17/2004 6:10:04 PM Eastern Standard Time, bathouse@... writes: Hi have severe brain fog too. Some days it seems worse than others, for me I think it depends on how much rest I get. But it still definetly there all of the time. I always considered myself fairly intellegent. I even had several more credits to go before dropping out of nursing school when the PA set in at full force. Now I feel like the biggest space cadent and can hardly read these e-mail, let alone study nursing. TALK ABOUT BRAIN FOG Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 , Bill, All, Brain fog is often present in Fibromyalgia (FM) which has many of the same symptoms as PA (but different causes). FM and PA are often found in the same patient. A good rheumy should be able to determine whether you have both. PA meds may help, if the FM is triggered by the PA. And FM does respond to some NSAIDs, hence, some PA meds. You really need to have the brain fog checked out. I'd go as soon as I remember what I was . . . uhm, well, have your rheumy check for FM. Correct diagnosis, even a bad disorder, is better than no diagnosis. JudiRose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Yes Bill, " Brain Fog " is a symptom of PA. I appreciate all the responses to my post. It makes me feel a little less alone. I wonder sometimes if we are in so much pain that our brains are in overloaded just trying to deal with that. My brain fog also is worse at times than others. I used to be the best elementary school secretary you could imagine, and I never brag about myself. I had to quit because of the pain but I also was getting where I my brain just didn't function as quickly as it needed to. It was terribly embarrassing. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 I have had a major problem with brain fog for years. I have been taking MTX since 1994 and Enbrel since 2001. I got relief from the severe fatigue that went along the brain fog when I started on the Enbrel. But, my memory really is a problem. Just today, I couldn't remember our janitor's name. I really like this kid and he empties my trash everyday. You'd think I'd be able to remember his name. While on a recent cruise, I made a spreadsheet in my Palm PDA so that I could remember the names of people we had our meals with. I'm finding that I am using my PDA more and more to remember things, I write everything down. I used to have an excellent memory but not anymore. Names are the worst for me. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 In a message dated 8/18/2004 11:46:42 PM Eastern Standard Time, juroma43@... writes: You really need to have the brain fog checked out. I'd go as soon as I remember what I was . . . uhm, well, have your rheumy check for FM. Correct diagnosis, even a bad disorder, is better than no diagnosis. HI Judirose, Are y ou familiar with what they use to treat the fibro. My rheumy diagnosed me with both. I tried taking zoloft for the fibro and I did not think it did anything so I went off of it. I get weekly massages at the chiropractors office and that make the fibro feel better but the brain fog..... what was I saying? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Has anyone got any questions answered from their Rhumy regarding brain fog? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 I suffered from serious brain fog when I was on MTX. Fortunately, when I stopped MTX (I'm now on Humira and Arava), the brain fog lifted considerably. However, I am quite forgetful and sometimes fear the early onset of Alzheimer's (my mother had it), but my friends and family assure me that I seem to be like every other 55 year old post-menopausal woman when it comes to these things. I therefore attribute my poor memory (it used to be superb) to being normal rather than to PA. There is no question that in my case, MTX magnified my brain fog and caused me a fair degree of fatigue. Kathy F. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 In a message dated 8/18/2004 11:47:51 PM Eastern Standard Time, maryjohnson1960@... writes: Yes Bill, " Brain Fog " is a symptom of PA. I appreciate all the responses to my post. It makes me feel a little less alone. I wonder sometimes if we are in so much pain that our brains are in overloaded just trying to deal with that. My brain fog also is worse at times than others. My rheumie's theory on brain fog is related to how much fighting our bodies are doing...we never are at rest because we are too busy attacking our joints...so the brain fog is akin to feeling out of it when you are sick and fighting a cold or infection...I noticed a big improvement when I got my fatigue level under control (through sleeping 10 hours a night instead of 8, napping as needed, and adding 2 folic acid pills a day). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Janet, As my Fm is triggered by the Pa and the PA is mild, I have gotten by with the NSAID and with one Flexeril at night to promote sleep. My sisters and niece are taking either Celebrex or Vioxx with a tricyclic antidepressant (Zoloft is one) or Flexeril. Keep up the massages if you can. And explore with the rheumy for something to do what the Zoloft didn't. We need all the help we can get. The need for something to promote the deep (REM lelvel) sleep is important in controlling FM. The lack of that deep sleep may play a part in the fog, but I don't know for sure. Just bring up with the DR that you aren't taking the Zoloft and you do have the fog. We sometimes think they know what we didn't tell them from our fogs. JudiRose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Kathy, I'm no medical person, but I wonder if the lack of the mental fog after you went off of MTX can be because your symptoms are now being treated appropriately. I know that the FM fog is cleared by getting rid of pain and getting enough sleep. If the fog you had was similar, just getting the right medicine for you would help. I feel (IMHO) that we must be our own advocates with our doctors. They do their best, but even if they see a couple dozen different patients with PA regularly, we seem to all be different and that has to make coming up with appropriate treatments hard for them. Any help we can give them through feedback is important. You say the fog is gone but the memory is not back to where it was. Ask the doctor. There may be something else that would help. Nothing ventured, nothing gained. Hoping for a better memory in your future, JudiRose - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 JudiRose, Thanks so much for your concern and suggestions. You are so right about our needing to be our own healthcare advocates! I am actually quite organized about my health care. The medication I'm currently on (Humira and Arava) has me feeling better than I've felt in years. I visit the rheumy every two months. In between visits, I keep a daily diary of how I felt each day, what activities I did and what other things were going on. The day before each rheumy visit, I make a list of the prescriptions that need renewing and I come up with an agenda of talking points. I give him feedback on what I've been feeling, what I've been doing and what my body's reactions have been. We also go over any questions I might have and then we make time to talk to each other about nonsense things - his son's soccer match, my dog's prowess in the pool - in other words, we spend a couple of minutes talking to one another as people rather than as just doctor/patient. As far as the brain fog is concerned, I didn't have it before MTX, nor did I have it after I came off MTX so I think I can safely assume it was the MTX. Regarding my memory, my rheumy and my gyn both believe it is a function of my age as well as the body's stress from living with PA since I was 16 (I'm now 55). My doctors believe that chronic physical stress creates its own set of chemical problems and that in concert with my age and heredity, my memory is not what it was. I am an SVP in a major bank in NYC so I guess I still have a reasonable degree of brain function (and stress!) and I put in about 200 hours a year on volunteer work. I do the NY Times cross word puzzle every day (but I can't always complete Saturday or Sunday puzzles as they are just too tough) and I read vociferously to keep the brain juices flowing. Most nights I manage to sleep OK, so I think I am doing what I can to keep my brain active. Despite all of that, I have done things like leave my hairbrush in the refrigerator. I hate to think what I used to brush my hair. I sometimes forget the names of people I know well. Now if only I could remember where I live... Wishing you wellness, Kathy F. Kathy, I'm no medical person, but I wonder if the lack of the mental fog after you went off of MTX can be because your symptoms are now being treated appropriately. I know that the FM fog is cleared by getting rid of pain and getting enough sleep. If the fog you had was similar, just getting the right medicine for you would help. I feel (IMHO) that we must be our own advocates with our doctors. They do their best, but even if they see a couple dozen different patients with PA regularly, we seem to all be different and that has to make coming up with appropriate treatments hard for them. Any help we can give them through feedback is important. You say the fog is gone but the memory is not back to where it was. Ask the doctor. There may be something else that would help. Nothing ventured, nothing gained. Hoping for a better memory in your future, JudiRose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi Jane, That reminds me of a friend of mine, Jim. We were at work one day and he was talking to another of my friends, Willie and Jim was saying to him, " I bought a book last week. It's called, How to improve your memory " Sounds good " said Willie. " Can you loan it to me? I wouldn't mind reading it " to which Jim replied " Er................I can't remember where I put it! " lol Absolutely priceless, Cheers, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 See that Sue? A side effect of this disease is that it eventually gives you the ability to read minds. (I bet you knew I was going to say that. Lol) Welcome to the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 > , Bill, All, Brain fog is often present in Fibromyalgia (FM) > which has many of the same symptoms as PA (but different causes). FM > and PA are often found in the same patient. A good rheumy should be > able to determine whether you have both. PA meds may help, if the FM > is triggered by the PA. And FM does respond to some NSAIDs, hence, > some PA meds. You really need to have the brain fog checked out. I'd > go as soon as I remember what I was . . . uhm, well, have your > rheumy check for FM. Correct diagnosis, even a bad disorder, is > better than no diagnosis. > > JudiRose Very interesting. My MD also diagnosed me as having " FM " ... he call my problem finding the words, a condition called " word search " ... that can have many causes. But I do also have general memory problems, mostly short term but some longer. My MD does worry a bit about me occationally forgeting " extended activities " I have been known to completly forget a movie I have seen! Sometimes I will remember it somewhere when watching it again. A few times I have not remembered it at all! Since there is a history of some dementia and suspected Alzhiemers in the family history, the doctor is concerned. Oh, well.... Life goes on... hopefully I have forgotten some things I would rather not remember... LOL. Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 > I have had a major problem with brain fog for years. I have been taking MTX > since 1994 and Enbrel since 2001. I got relief from the severe fatigue that > went along the brain fog when I started on the Enbrel. But, my memory > really is a problem. Just today, I couldn't remember our janitor's name. I > really like this kid and he empties my trash everyday. You'd think I'd be > able to remember his name. While on a recent cruise, I made a spreadsheet > in my Palm PDA so that I could remember the names of people we had our meals > with. I'm finding that I am using my PDA more and more to remember things, > I write everything down. I used to have an excellent memory but not > anymore. Names are the worst for me. > > Becky Just checking back on " brain fog " I found this. I get very distressed losing names! I don't mean someone I have just casually met somewhere. I am talking names of people I have know for YEARS! It is not a matter of losing the name completely. Just cases where I start to say something like " Yesterday ?????? was telling me he... " I usually find the name in 10 seconds or a minute or two. But I feel like a total idiot when I stop on a name have have to say something like " you know?? errr.. the my friend that works at Lowe's in plumbing? " ARRRGGGHHH... I hate that! Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 I've always had a bit of a memory problem. Can never remember names, sometimes forget past conversations - but I always thought it was just laziness! Fatigue is a problem for me, as I don't get enough sleep, and I'm sure I've dropped a number of IQ points over the last 10 years. I read a paper in which people with arthritis had worse nutritional status than the control group, even though they had a healthier diet! [sorry if I'm repeating something I mentioned a couple of weeks ago.] I think the lesson is that sleep and nutrition are very important for us. Take a sleep aid if needed (there are mild things you can get without prescription), and try to cut out the junk that makes up so much of the Western diet. Your body needs every advantage it can get. Doing this should have a positive physical and mental effect. Also, as others have noted here, get in the habit of making crib notes for yourself! Neil > > In a message dated 8/18/2004 11:47:51 PM Eastern Standard Time, > maryjohnson1960@y... writes: > > Yes Bill, " Brain Fog " is a symptom of PA. I > appreciate all the responses to my post. It makes me > feel a little less alone. I wonder sometimes if we > are in so much pain that our brains are in overloaded > just trying to deal with that. My brain fog also is > worse at times than others. > > > My rheumie's theory on brain fog is related to how much fighting our bodies > are doing...we never are at rest because we are too busy attacking our > joints...so the brain fog is akin to feeling out of it when you are sick and > fighting a cold or infection...I noticed a big improvement when I got my fatigue > level under control (through sleeping 10 hours a night instead of 8, napping as > needed, and adding 2 folic acid pills a day). > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Dave, I don't know that it is gone entirely, but I started seeing improvement about a month into a more aggresive treatment schedule (250mg every 2 weeks). I am now on 200mg every 10 days. Will get retested in the next month or two. When I was originally on 200mg once a month, I saw no improvement at all. But I've also been diagnosed with CFS. Hard to say how much of it is due to hypoG at this point. They think I have some immune problems as well, so I don't think the shots are going to solve my problems entirely. But they have definitely helped. My primary problem now is " post-exertional malaise " . I do have more energy than I did before starting on shots, but I get sick when I try to do much with it, either physical or mental. Kind of a catch-22. Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 > > > The brain fog is what I am having the most difficulty with at this > point. I am off the TRT awaiting next weeks Endo appointment. Most > of the time I feel it's all I can do to get out of bed and function > through the day. I was wondering from the guys here who have been > successfully treated with HCG or TRT …I assume the brain fog > eventually goes away? How long did it take once you started treatment? I just started Androgel 1% this week. The one thing that struck me was the " fog " that I am experiencing. I have not noticed any improvement in energy or libido. In fact it worries me that my libido has seemed to decreased. My GP that prescribed the Androgel did not seem to be very knowledgable on TRT. Should I go see an Endo? How do I find a competant Endo? I live in the Detroit area. Does anyone have any recommendations? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 > What have people found to be useful in reducing brain fog and improving > focus? For my son, once he tolerated it, B6 helped very much. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 , you are getting some good ideas from everyone - may I suggest you get the book " Prescription for Nutritional Healing " third edition by Balch and Balch around $20 to $23 I too would have like to known what you son was taking already- but I will give an over view of what and why; First from Balch's book Calcium and Magnesium has a claming effect Coenzyme Q10 improves brain function DMG an oxygen carrier to the brain SAMe critical in manufacturing of brian chemicals Vit. B complex Essential for normal brain function Vit C with bioflavonoids A powerful free radical scavenger Amino acids are needed for normal brain function and are the building blocks of life MSM increses alertness mental calmness helps the ability concentrate (my son to this day can not tolletate this supplement because of the sulfer problems he has) Multvitamin and mirneral complex with out copper all nutrients are need in balance I would read and print the paper( 50 pages or so) by Jepson M.D. called " Understanding Autism " he can help with doses and an overview you will find it at the Children's Biomedical Center of Utah cbcutah.com In your research you will come across this like GABA, 5HTP, DMAE, and lets not forget Zinc or Essential fatty acids these are things my son takes also. I like to shop on line at a place called iHerb the have great prices and free shipping some products I like from them are Gaba Calm( source naturals brand) sometimes are kids neurotransmitters are always firing or on. Another source natural product I really like is a supplement called Attentivechild it has the DMAE someone else has suggested in it with other helper items for the use of the DMAE. I will cut and past someones overview of a great speaker I have seen in this thread- you will soon be and expert in your own right give yourself some time to read and learn. My 2 Cents Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 Home About Us Contact Us Site Map Support Us What is Autism? Quick Facts About Autism Medical Diet and Autism Search the Site Booklist Newsletters Catalogs and Other Information General Resource List ABA Resources For Friends and Family News - Updated Daily DAN! Medical Flowchart Action Plan for Parents of Newly Diagnosed Kids Feedback Upcoming Conferences Autism Caucus Important Web Quote Link to comment Share on other sites More sharing options...
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