Sjogren's Syndrome and Hashimoto's. SEVERE FATIGUE! ANY SOLUTIONS?
Posted , 6 users are following.
My brain fog has been getting out of control for the past month and a half. It is literally impossible to do pretty much anything. I need to find another job but I can't function.
It feels like my head weights twenty pounds, heavy and full of nothing, just air (if that makes sense) along with an intense pressure that's always there. My forehead feels even heavier like it feels that its drooping, even though physically nothing looks different. Dull headaches are normal for me now including these creeping sensations, like there's something crawling on my scalp. Thinking is impossible, talking is a serious struggle.
I have no idea when my doctor can see me next, all I'm asking is if you guys tried something like a supplement or anything else that helped. Just something to try until I can get another appointment.
Also any mention of sleeping more, healthy diet, I already know. I sleep well and my diet is good. I'm taking care of myself as much as I can.
0 likes, 12 replies
martha989
Posted
Also, anyone who does have both Hashimoto's and Sjogren's Syndrome, please personal message me, I'd love to talk back and forth with someone who is in a similar situation as me.
diane03050 martha989
Posted
vicki123456 martha989
Posted
how is all your blood work? because I felt like this when I was really anaemic for about a year, it was impossible to function, I literally spent all my time on the sofa with my head in my hands unable to talk or concentrate even something like peeling carrots took 100% of my concentration. it was awful. if you already have a good diet, is it an anti-inflammatory diet limiting carbs and dairy and meat, and high in good oils? You could look into taking healthy organic fish oils or even a multivitamin if you're missing a key area. Since autoimmune diseases tend to be based around inflammation I suggest taking a supplement that is specifically designed to be an anti-inflammatory or at least incorporate more than one into diet. I do a spoonful of Manuka honey a day but am not switching to an anti inflammatory diet. Switched butter for avocado oil, reduced meat consumption, cooking curry once a week etc. Tumeric is a good anti inflammatory.
Megheart martha989
Posted
In the early days of my illness when fatigue was a huge issue, I stumbled across repeated references to acetyl-L-carnitine for mitochondrial depletion.
For some reason I purchased it and tried it.....and oh my goodness it helped the fatigue sooo much. It was quite expensive though. I bought the powdered version in order to get a larger dose and I used to mix it with V8 juice as it is on the vinegary spectrum, which blends better. I would not mix it with orange juice.
Obviously we all come into our illnesses with various depletions and because of this what works for one will not necessarily work for another.
I feel for you as I know what that dreadful fatigue and word loss is like. Perhaps you may take comfort in knowing that for me that part of my illness has eased over time. Hopefully it will for you also. 💐
martha989
Posted
Thanks, everyone.
I have seen a Neuro Dr before, had an MRI and blood work done, MRI was fine and he said he thought that there was nothing he could do for me. Besides the fact that my Anti-Nuclear Antibodies were possible along with a few other things that pointed to something being wrong.
My blood work is all over the place my TSH is at 0.03, a few different tests say my liver isn't functioning correctly, its a nightmare.
Have tried Tumeric before over the span of a few months sadly it didn't seem to do anything. I'm trying to work into a better diet but my appetite is at a serious low as of late, I'm eating now just because I know I need too and not because my body is telling me to eat.
Yes hopefully it will get better but as of today, it's just worse.
jeremy04366 martha989
Posted
I have sjogrens and celiac. My sjogrens is extremely aggressive . I have serious major brain fog. I'm not sure if it's the SS or celiac or both. I went undiagnosed for so long that it's taken a toll. I take all the basic anti inflammatory vitamins and even tumeric. Of course I eat a whole foods Paleo diet. But....nothing has helped me right now. It's frustrating for sure.
aitarg35939 martha989
Posted
Hi Martha
I hope Lily pops in here as she knows a lot about the 2 kinds of thyroid numbers & how they should be viewed together, not just separately.
For my brain/speech problems I use glutathione. It comes 2 ways: Reduced Glutathione or L-Glutathione. As far as I can tell the only difference is that the "reduced" is cheaper. An acupuncturist with a background in neurology suggested I start on it at 100mg/day. 6 or 7 yrs later I went up to 150mg/day. Any day I skip is noticeable in terms of how long it takes me to finish a sentence (much less a paragraph, lol) & also in task completion.
As to the sleep: did the neuro test for sleep apnea? I ask because we usually don't know when we have it. A friend had a series of 8 car wrecks in a year. They tested everything, always asking her how she slept, to which she always replied, "just fine." After the 8th wreck, she got a sleep apnea test. Bingo! The lack of good, restorative sleep was causing her brain to short circuit.
Good luck, I hope you find something helpful soon.
martha989 jeremy04366
Posted
I've always found that to be the most depressive part. For me, I've known that someone was wrong with me ever since I was 13 years old. I don't think that doctors really understand the damage they do to people when they say that we are fine and we know we aren't. Mentally it really as you say takes a toll. But at the same time not only are you suffering from your symptoms you are having to deal with them. So even if you start out strong and determined to find the cause, you get worn down by the people who are supposed to help you.
I've often wonder how different a person I would have been if one doctor years ago would have believed me and strove to help me.
I've said this for years that doctors are the smartest stupid people out there. And that's terrifying because to them, we are just a patient but to us, those who are trying over and over again to find out what is wrong. To us they could be the one who ends our torment, so even if you go and see them with zero hope of anything good happening. In the end, when you are disappointed you find yourself faced with the fact that even though you've been hurt so many times before by doctors and them not believing that you had a little bit of hope that maybe just maybe you were going to be wrong this time.
It's a vicious cycle, and then they ask you why your severely depressed, humm, I don't know maybe for the fact that I've been living in hell for years and years and you don't believe me.
It's actually funny you commented Jeremy because yesterday I was diagnosed with Celiac Disease too. Which at the moment I'm just laughing my ass off about, because like seriously I know people look at two for one deals and are like awesome! But come the f--k on, hahaha. It's like a bad infomercial! You've got Hashimoto's! But wait there's more call right now and you'll get Celiac Disease included!!........ But wait! Hahahaha, we'll add Sjogren's Syndrome free of charge...Like really... I want to go back to all the doctors that said I was "a perfectly healthy young woman" and just sit in their office and go "Hi, you f--k-- up buddy."
Honestly, my dark and sarcastic humor is really the only thing keeping me going some days. And other days even that doesn't help. And unfortunately the cycle beings again.
martha989 aitarg35939
Posted
I'm just in the process of getting referred to another Endo who's actually competent because my brain fog is really bad right now and it's greatly impacting my job.
And yes, I've been to a sleep doctor and had two sleep studies done, one at home and one at the hospital. The one at the hospital the doctors said that my brain when I sleep is constantly waking me up in the night without my knowledge. But past that, they said I was fine and normal without any explanation to why my brain would be doing that.
aitarg35939 martha989
Posted
Oh, geez, Martha, you've hit the lottery again for crap medicos because if your brain keeps waking you up when you are asleep, then you are not getting proper restorative sleep. Period. Guess they had extreme tunnel vision: " it's only harming her sleep cycles if she stops breathing; no other sleep interruption counts." That is bunkum. If you can stand the hard work & afford it, find someone, a neurologist I guess, who specializes in ALL sleep disorders. Quiz the staff before going because if all they care about are apnea & snoring, no point wasting your time, your hope.
Loved the infomercial!
jeremy04366 martha989
Posted
You're telling my story!! I too knew things were wrong with me since I was a kid. Anxiety, brain fog, nervousness, freaking out, oh...I've had the celiac rash and classic buttocks wasting for 20 years and doctors gave me stupid cream and said my buttocks was just from "genetics" uh...yes...defective ones.!!!
They all ignored me because of normal labs and my sjogrens was seronegative. Finally, tested for celiac and dna salivary test for sjogrens positive. I'm expecting hashimotos at some point as well. I've been on disability for a year due to the severity and I'm trying to get my life back. And yes, I lost family and friends along the way who disowned me because they said " nothing was wrong with me" now? Theyre like "well we figured something was wrong but we didn't know what"...yeah, all I have to say is.....I've kept them out of my life now. We need supportive docs and family as well, not ones who tell us we are crazy. I'm always here on these sites and love to talk. Message me whenever you like.
martha989 jeremy04366
Posted
Same to you Jeremy may take me a while to respond but this site I find is very helpful. It's sad that so many of us are labeled as fine when we know we aren't. Constantly fighting the people who are supposed to help us.