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Brain fog is common with autoimmune conditions. Often one of the first symptoms that cause people to seek a diagnosis. Have Sjogrens. Cognitive decline is a
by treeman79 6y ago
Brain fog is common with autoimmune conditions.
Often one of the first symptoms that cause people to seek a diagnosis.
Have Sjogrens. Cognitive decline is a real issue for me. Treatment and lifestyle changes make a huge difference.
Basically controlling inflammation becomes your life. Or you won’t have much of one.
- MetalGuru 6y agoWhat have been the most effective lifestyle changes you've made? And how long did it take you before noticing their effects? Hope they continue working for you!
- treeman79 6y agoSupport groups are best. Knowing your not alone. A safe place to ask questions. Facebook groups are biggest and best. Reddit has a lot too. Various podcasts and foundations. From these you start seeing patterns in what works for people, how to find doctors. For me. In order of improvement. Prescription: plaqunial. Blood thinners. Avoiding flare triggers, Sun, heat, most foods. Diet is huge. Autoimmune protocol diet is best for me. Similar to keto, etc. Personally I’ll eat a lot of sweet potatoes when I need relief. Safest food I have found. Supplement: Vit D, magnesium, Vit E, fish oil, B complex, CQ-10 turmeric. Autoimmune often means a lot of secondary conditions, or autoimmune is the secondary. Increased cranial pressure is somewhat common with Sjogrens for example. High pressure is brutal on the mind and body. Went from bed ridden in horrific agony all day to kayaking or equivalent every weekend.
- datameta 6y agoIt makes me so happy to read this! I too have had a drastic transformation in terms of life quality. I second the Anti-inflammatory diet and exercise (even just walking contributes greatly). I echo the supplement suggestions and also recommend glucosamine+chondroitin (which happens to lower all-cause mortality significantly). Red meats (high omega 6 content), deeply fried foods, gluten (plenty of grain alternatives to wheat and corn), uncultured dairy (cheese seems ok, plenty of alt-milks out there), and sugar not from fruit can trigger inflammation for me. I might describe my diet as vegan+eggs+fish (ovo-pescaterian?) There is a wealth of information online to tailor one's diet. Honestly - this is a diet that everyone can benefit from health wise.
- dualthro 6y agoI'm jealous that you can eat grains! Any kind sets me off unfortunately. And yeah it took me a while to realize but any kind of fried food is bad for me. So even eating coconut tortilla chips sets me off, despite the fact that they contain no grain. I am hopeful that in the future, more paleo / autoimmune paleo targeting brands come out. There was already a pleasantly surprising amount of brands catering to this, last time I was at a whole foods. For those who can't tolerate dairy, or any kinds of nuts or seeds or grains, one kind of food that you might enjoy is coconut yogurt. Not cheap but it helps to break some of the dietary monotony.
- datameta 6y agoAh, that's a shame... Nuts and seeds actually make me feel a lot better (was my only snack for a while, when I couldn't eat fruit) and I feel lucky to be able to eat brown rice. If I eat wheat-based pasta or bread however, my body will let me know in minutes. It really is awesome that we can find what fits us with large store brands that deliver! Never knew how many forms of vegan protein exist out there
- elcritch 6y agoI found following a "yellow / red flag" system helps me. Some foods will trigger my inflammation (many of the ones on your list), however it often requires multiple overlapping stressors or triggers. So on any given day, eat one bad food item it's a yellow flag. Eat two bad food items I'm on a red flag condition. Or perhaps it's work stress and food, etcetera. The reason for the yellow/red flag system is to not impose a strict limit, but as a way to inform myself I'm in a danger zone. Primarily because many foods I love (ahem brownies!) are a flagged food. Telling myself "no", when I'm stressed or foggy state, often fails. However a "red" flag state helps bring out my inner engineer: “Can'nae take any more, Captain!”
- datameta 6y agoThat's a really good way to formalize things! I've been following a form of this subconsciously, it seems. It's great to fall back on a tried and true system when the willpower or appropriate state of mind isn't there to make the choice simple. Sometimes one just needs a way to ensure the yellow flag one would really enjoy doesn't turn into a red one. There's probably a terrible joke to be made here about red shirts but I can't muster it
- dualthro 6y agoCould you please provide links to these reddit support groups, and podcasts and foundations? Have you tried using the mushroom [extract] Cordyceps as a supplement? It seems to help abate some symptoms when I eat an autoimmune triggering food.
- 7thaccount 6y agoWait...isn't cordyceps the fungus that takes over ants, bursts out of their skull, and then cause them to effect others? That sounds like something I'd run away from at full speed.
- dualthro 6y agoDo you have a link with more info? I just popped 2 of these [1] an hour ago as I had eaten some kind of food/protein bar that tasted like it contains pea protein, a known trigger of mine. I live in a country where I can't read the language so I'm not sure exactly what I ate. https://www.nowfoods.com/supplements/cordyceps-750-mg-veg-capsules https://www.nowfoods.com/supplements/cordyceps-750-mg-veg-ca...
- wizzwizz4 6y agoThe Wikipedia article contains basically all the information in this bit of the thread, but accurate: https://en.wikipedia.org/wiki/Cordyceps https://en.wikipedia.org/wiki/Cordyceps
- 7thaccount 6y agoGoogle zombie ants. Maybe it's ok for people?
- treeman79 6y agohttps://www.facebook.com/groups/476448932387693/?ref=share https://www.facebook.com/groups/476448932387693/?ref=share /r/Sjogrens /iih Podcast Sjogrens Strong Good resource Sjogrens foundation John Hopkins Sjogren foundation for more up to date testing and articles
- wtetzner 6y agoHave you looked into the Carnivore Code in regards to autoimmune issues? https://carnivoremd.com/book/ https://carnivoremd.com/book/ It's full of useful information even if you don't intend to go full carnivore.
- shock 6y ago> Went from bed ridden in horrific agony all day to kayaking or equivalent every weekend. Did you have muscle pain?
- atian 6y agoI haven't found anything else to be as helpful than Redbull (with actual sugar) for inflammatory brain fog. More on the sugar, but the B6 and Niacin help to bypass whatever it is wrong with brain energetics when inflamed. It doesn't have to be Redbull, but where else are you going to get 30g of sugar and a few helpful vitamins out in the wild.
- datameta 6y agoAn alternative would be to make some tea/coffee/yerba mate, sweeten it, and take a B-complex vitamin. Now you know exactly what you're getting and what you aren't. For the record, excess sugar and processed/packaged/canned goods highly correlate with inflammation in my own experience. Also there was a study that showed greater than 160mg of caffeine per day may increase inflammation in those predisposed to it, whereas the group that consumed <120mg had no negative effects. Can try to dig it up if someone is interested.
- nitrogen 6y agoNow you know exactly what you're getting and what you aren't. If I remember right, the only ingredients in Red Bull not listed by name are the artificial flavors (and maybe some colors). And those have to be drawn from GRAS don't they? It's always seemed strange to me that we are more willing to trust plants with thousands of unknown chemicals, over a simple energy drink with like ten chemicals, all listed.
- datameta 6y agoVarious flora have been in a push and pull balance with fauna for hundreds of millions of years. I find it more likely that something whose very reproductive cycle depends on being eaten by animals is the healthier alternative to something engineered for a singular purpose without long-term testing on humans. I was once a multiple-a-day energy drink consumer. The fizzy caffeine+sugar+choline+inositol mixture in a can has barely been around a few decades. Do you know what compounds the artificial flavors are? I've since switched to getting my caffeine from plants. It's been verified by a plethora of civilizations over thousands years.
- uyt 6y agoHow do you bring up the topic of brain fog to your doctor? Can I really just say some days I feel dumber than usual and he'll be able to diagnose and fix me?
- treeman79 6y agoMy experience was that almost all doctors will declare you depressed. I printed out 4 page list of all the weird symptoms I had, and what affected me. One crazy old neurologist-ophthalmologist read the list and declared I had Sjogrens. Something I had not considered. Through research and Support groups I found out my symptoms were normal, and mostly ignored by doctors.
- AQuantized 6y agoThis has been my experience with some ongoing/recent neurological symptoms. Ahidrosis, brain fog, reduced sensation, the list goes on. No doctor has outright said it was wholly a mental issue, but they're basically only willing to prescribe antidepressants or benzos. Sadly for most obscure problems you have to seek out help yourself.
- erentz 6y agoWRT reduced sensation and sweating: you may want to find a neurologist who deals with dysautonomia, and maybe get autonomic function testing done. Also look into small fiber neuropathy. There are support groups for these on FB and the like that may have useful information or referrals to good doctors. A lot of doctors hear small fiber neuropathy and only think diabetes. But it’s frequently associated with dysautonomia, progressive and autoimmune/inflammatory in origin.
- treeman79 6y agoI have reduced sweating. It sucks big time. Best I can tell its from Sjogrens Or neuropathy problems from Sjogrens. Also dysatonomia is often caused by IIH. Treating IIH, drastically improved symptoms. Literally draining off spinal fluid.
- Abishek_Muthian 6y agoI wish you well and hope the treatment is successful. > Cognitive decline is a real issue for me. How do you track this? Do you have any self tests to keep the cognitive state in check or are they standard medical tests?
- treeman79 6y ago2 ways. I started tracking my memory score over time. https://memtrax.com/ https://memtrax.com/ At my lowest it would frighten people to watch me take the test. “You just saw that image 3 times in the last 60 seconds” Me: I have never seen that image before. At my best I could outscore most anyone in the office. Second is more arbitrary, but more important. Been programming for decades. Since I was a kid. A task that normally would take me a few minutes might take me a week. Harder concepts were beyond me, felt like I was trying to tackle calculus after learning fractions. I “knew” I could do it, except I couldn’t anymore. Then I would have some good days, and I would go around the office solving all the really hard problems for people.
- Abishek_Muthian 6y agoAs person with disabilities and physical health problems people are often at awe at me for how I go on with my life and now I'm looking at the same awe at you. Do you feel there's anything missing with memtrax or any other tool which can make your life easier i.e. help track your cognitive health or help your current lifestyle?
- treeman79 6y agoTime to diagnosed is one of the biggest things. Gig economy kept family off the street when I was at my worst. I had symptoms 20 years ago, serious problems 10 years that were warning signs of autoimmune. When it got really bad it was 20-40 doctor visits to get a diagnosis. It’s the Second most common autoimmune condition, behind lupus. Also getting ride of American diet. A lot of people are predisposed to autoimmune, but need a trigger.
- RobRivera 6y agosorry to bother, but have any good source for identifying anti-inflammatory dietary choices? an old boss went antigluten to great effect (knee issues)
- treeman79 6y agoLook up Auto immune protocol diet. Theme is few carbs, but not exactly. Chicken, green vegetables and sweet potatoes are my life. I always regret cheating.
- agumonkey 6y agoThese days I piled up on veggies (my system just couldn't tolerate most sugar/salt/fat heavy food in stores). That said I found that 80/20 green/carb is a sweet spot. I'd bet a few dollars that vegetables help your system process the carbs too so it's less an issue than normally (according to the 'too much carbs is bad' trend). I too regret cheating most of the time.
- dualthro 6y agoFollowing the below diet changed my life for the better. Like night and day. I was able to get back into the software industry. I remember the summer that I started it, literally every week I felt like I was 10% smarter. And I also was regaining memories that I had completely lost prior to that. Kind of surreal. https://drknews.com/autoimmune-gut-repair-diet/ https://drknews.com/autoimmune-gut-repair-diet/
- DoreenMichele 6y agoThere are a lot of different sources out there. I recommend you read a few and start a journal to track diet and symptoms and figure out what works for you as an individual.
- dualthro 6y agoAbsolutely, I'm right there with you. I had 3 different doctors tell me I was crazy before I said fuck this. The most helpful book that I have found is "Why Isn't My Brain Working?" [1] by Dr. Datis Kharrazian, he is both an MD and a naturopath. Lots and lots of insights into why the brain fog is happening, and even more advice on diet, lifestyle and supplementation measures to minimize it. I seem to have some dietary autoimmune stuff going on as well which is incredibly difficult to deal with, my friends know me as that person who brings home cooked food around everywhere, as I know there are no spices or grains that will set me off. Eating out I usually just order a salad with no croutons, no cheese, no nightshades, no dressing outside of olive oil, and a meat to go on it. But even then, if the meat has spices, I'm in trouble. [1] http://brainhealthbook.com/ http://brainhealthbook.com/ -- also available on the large book piracy site
- ketamine__ 6y agoIt doesn't list MD on this page. https://kharrazianinstitute.com/dr-datis-kharrazian/ https://kharrazianinstitute.com/dr-datis-kharrazian/
- dualthro 6y agoOh you're right, my apologies. I would still argue that he knows a thing or two about autoimmunity: As a researcher, Dr. Kharrazian earned a PhD degree in Health Science with concentrations in immunology and toxicology and a Doctor of Health Science (DHSc) degree from the Department of Health Care Sciences at Nova Southeastern University. He completed his post-doctoral research training as a research fellow at Harvard Medical School and worked as a researcher at the Department of Neurology at Massachusetts General Hospital, where his research focus was in autoimmunity and neuroimmunology. Dr. Kharrazian also earned a Master of Medical Science degree (MMSc) in Clinical Investigation from Harvard Medical School. Dr. Kharrazian is an active member of the Harvard Medical Alumni Association and the American Association of Immunologists.
- coldtea 6y agoAnd it doesn't list PhD on Simon Peyton Jones page!
- dsizzle 6y agoThere's a lot of discussion of "inflammation" in this thread, but does this mean anything other than "feeling bad" in practice? It seems C-reactive protein (CRP) is the main biomarker for inflammation. Do people get tested for CRP to diagnose their triggers? I don't think I've ever been tested for it. Will a typical GP give you a CRP test if you ask for one?
- nowandlater 6y agoI see it in my lipid panel (there's heart disease risk in my family) so that may be one way to get it. But INAD and welcome other comments on how to ask for this; it may just be my gp.
- treeman79 6y agoAt some point “feeling bad” turns into organ damage. CRP, is limited value test. In general my blood work is great, yet I have lots of internal damage. It’s just not progressed enough to show up on typical blood tests. Various antigen tests can pick up on it.
- dualthro 6y agoWhich kind of antigen tests? I have had a CRP test that wasn't really indicative of any problems. I would love to be able to get a doctor to agree with me that there is something wrong.
- nojs 6y agoCould you explain in some more detail how you know you have lots of internal damage?
- treeman79 6y agoVarious Ultrasounds, cat scans. I basically don’t sweat. Tears are very rare. I cried for first child born, I didn’t for second, even though I felt the same. Was an early symptom. But felt bad for years. In case of pancreases, I got pancreatitis. Turned out that was an early sign of Sjogrens. At that point ultrasound was clean. Years later, Now it shows damage.
- forgotmypw17 6y agoWhat are your strategies for avoiding inflammation?
- tunnuz 6y agoCan you elaborate on treatment and lifestyle? How does one know if they have brain fog? Sorry if the question is silly.
- solaxun 6y agoVery interesting to hear your experiences. I have long suspected some sort of autoimmune condition (specifically undifferentiated spondyloarthropathy) resulting in me having similar symptoms. My first symptom was tendonitis, but I was 22 back then (37 now) and very physically active so doctors just attributed it to overuse. Then both elbows tricep tendons developed enthesis and ossified at the insertion point. I have similar enthesis in basically every major joint now, and they still think it's from the exercise. I did push my limits with weights when younger but it's difficult to imagine that being the cause of all the issues I've had. Similar to you, CRP tests were fine and bloodwork was all good, however they did find I was positive for the HLA-B27 antigen which is a known marker for autoimmune conditions and only present in about 5% of the population, but present in 90-95% of those with spondylitis, so there's one red flag. The issue is as you mention, there is no definitive diagnoses until they see joint damage on X-ray, and by then you've missed years of potential intervening treatment. Eventually I developed brain fog like you describe, but it was gradual and difficult to tell if the symptoms were related. It's not always debilitating but I'd say 4/5 days I'm foggy to varying degree, and then one day where I'm about 3x sharper. I've learned to just ride the productivity wave those days and do mundane stuff other days. I thought it may be sleep related, and although getting more sleep does seem to give me a higher probability of a "good" day, it's not a panacea. There are days where even after 10 hours I'm still foggy, and I can tell immediately upon waking up how the day will go. While I'm sympathetic to those who say googling your way to diagnoses can be harmful (and no doubt it may frustrate some doctors), I don't entirely agree. You have to live with your body and mind 24/7, and you have one and only one patient to care for - yourself. You will always be more motivated to find the answer than your doctor. A doctor cannot read your mind or feel your pain, and simply pattern matching symptoms is something anybody can do. It can never hurt IMO to go into the discussion informed and ask pointed questions. The medical field is an evolving science, they don't have all the answers, they don't even have most of the answers.
- o-__-o 6y agoHow do you manage your job with so many days being out of commission? I have noticed a drastic difference since catching COVID and fear the days of my youth being able to churn anything out on a whim is over
- quotz 6y agoHad loads of brain fog for 2-3 years straight in college. Kept gradually getting worse, changed about 20 docs, nobody knew how to treat it and they thought I had mental health problems. Then I took matters in my own hands, joined some forums and subreddits, turn out loads of people were like me. Literally thousands of people in online communities had undiagnosed Low Testosterone. Most docs are uneducated about this as they just look at the blood test lab results, and group everyone from age 20 to age 70 in the same category. Went to a mens health doc, gave me TRT, symptoms gone in a week. Literally saved my life and career, I almost dropped out of college. I put my dad on TRT too, and litterally I tell everyone about this. The Low T epidemic is a really serious issue!
- danielscrubs 6y agoI was very tired all the time. Doctors took blood tests and found out I was low on testosterone, called in a specialist that looked at the same blood tests and said it was ok because I had enough free testosterone if I remember it correctly. Never did solve it. Any advice?
- quotz 6y agoOf course, join r/testosterone read the info. Then, go do blood tests again. Total T has to be >600 ng/dl no matter ur age or what anyone says. If you dont want to bother diagnosing yourself, find a mens health doctor in your area on the subreddit. If you cant, then I can advise you further I will give you my contact. I am on it for 2 years already, I put my 60yo dad on it as well, I have a doc in NYC called Dr Rotman, I can give you his contact if you live nearby
- the_drunkard 6y agoDid you have blood work done to diagnose low T? My understanding is that T levels can vary based on the time of day they're taken, so they likely need to be taken multiple times. In any event, glad you arrived at a solution!
- quotz 6y ago
- agumonkey 6y agoCan you share your knowledge ? diet, lifestyle etc ? Good luck anyhow