Sjogren caused my unreasonable fatigue - full stop Glad to hear physicians agree about exercise As a patient just get up can be an extreme exercise I fully appreciate the comment here ‘telling a fatigued person to Exercise as like offering a drowning person a glass of water’
Before I knew I had Sjogren’s and before symptoms started becoming more prominent, I would get up early 4 days a week and either do HIIT training or cardio and strength training. I eat healthy and adopted a lot of very healthy eating habits and take good quality supplements to help fight inflammation. Then I started to notice I started wanting to sleep in more, started pressing snooze and couldn’t get out of bed. So I agree exercise is a great habit, but for me, it doesn’t seem to help the symptoms of Sjogren’s.
Unrelenting discomfort, fatigue and pain. I might have a good day here n there, but mostly it's pretty bad! Even if I'm doing all the right things I can feel terrible.
No, it isn't. If you do it the way he describes, it will help. Because if you DON'T do anything your muscles, circulation etc will definitely get worse. I started 35 years ago when I had two children to take care of, if I hadn't kept it up, I couldn't have made it.
@@ursulacook9883Ich gehe jeden Tag zweimal täglich mit meinem Hund spazieren. Nichts wird dadurch besser. Nur selten gibt es gute Tage an denen ich meinen sehr kleinen Haushalt säubern kann. Wenn ich die körperliche Tätigkeit übertreibe kann ich oft zwei Tage danach garnichts mehr unternehmen.
I had a pre-existing neurological disorder before I got diagnosed with Sjogrens. I’ve dealt with pain and fatigue for years already but this fatigue is like nothing I’ve ever experienced. I hate watching television and I’m not very good at doing nothing. I do my best to take 2 - 20 minute stationary bike rides early every morning. Then I just try my best to get moving and try to as much done as I can. When I’m completely exhausted, I give in and I close my eyes for 45 minutes to an hour. Then I force myself to get moving again. Some days are better than others but I accept what life throws at me. I’d love to sit down and cry but I already know that doesn’t work. For me, attitude is everything.
My doctor totally ignored my fatigue as well as pain. Opiates do indeed provide some relief for muscle pain and headaches. If more docs educated themselves or had this disease, you can bet they'd start prescribing some pain relief.
I was treated for RA from my 25, last 17 years I was finally diagnosed Sjogren. I also have high pressure and tahikardia . My doctor use everything but for a whole year I am without dexason shots. Elicea, resohin, b12 complex and doreta. I am 52 now and I do not have strength to fight with fatigue anymore. So, I stopped for th first time. I am sad but I can only lay down in my bed and do nothing at all. All the best to all seek people from Serbia 🇷🇸
Address sleep apnea, b12, vitamin d, fresh veg diet, no smoking, stress, but once these are all optimised Sjögren’s is still there like flu and won’t leave. Please research more as it’s devastating in its effect.
To hear someone validate me/us is rather overwhelming... i gave up reaching out to docs n friends long ago... the healthy just dont 'get it' ...i also have hashimotos ( thyroid) just for good measure...i am often zinc defficient. Sleep is great..when my over tired body actually gives in to it! The spoon theory is great. Prioritise... be kind to yourself
I absolutely agree that exercise is the best way to combat (some of) the fatigue. I tend to exercise late afternoon when I'm at my most tired, and I really get a second wind after exercising. Also you need to be forgiving of yourself - when I first was diagnosed, I spent a few years fighting against the fatigue thinking I could will it away. That, of course, didn't work, and I finally figured out that I needed to be listening to my body. It's complex, but you and your body can figure out best how to manage this complicated disease.
Thank you for speaking up. Yes the fatigue is rough. It just goes sleep now and my body shuts down. I will try exercise if possible. Do you gave a special eating plan?
I used to work with older people & I started before I turned 18. I’m very short, 148 cm & I’ve weighed 43 kilos almost my whole grown up life - all muscles because I’ve always loved to exercise. Especially horse riding. I shouldn’t have been allowed to have such a heavy job, due to my size & there was barely nothing to help you move a patient but your own strength. I was constantly working with my arms over my head because almost all my walking patients were taller than I am. & then all the cleaning & carrying etc. My body was worn out so just before I turned 24 I got badly injured from this heavy job. Neck, shoulders, lower back etc. I kept working with pain killers & cortisone shots, on & off for 12 more years & I had 2 kids also during this time. C-sections. Finally a doctor forbid me to work any longer. I was devastated & relieved at the same time. I did work one more year, night, from 98-99. After that I was too bad off. I was then 36 years old & all my dreams of becoming a singer went down the drain. I could barely sing anymore because of my ruined neck & all the inflammation & I couldn’t sit & play the piano for more than a few minutes. My arms just stopped working. I was diagnosed with Sjogrens 2016. It took 5 years… I’m always totally exhausted & I don’t get any help except for pain killers & cortisone shots. Since I can’t work, doctors don’t care. My stomach is ruined from all the inflammation pills for over 30 years so I don’t have anything for my inflammations. The nerve pain never goes away & I barely sleep at all. I can’t walk because of my injuries in my lower back. I can’t work with my arms. It’s really hard to get dressed or take a shower or wash my hair. I believe that eating Healthy Keto & doing Intermittent fasting helps a lot. When I went through menopause I gained 26 kilos in 10 months?! I couldn’t move! Not even turn around in bed! I started following Dr. Berg on RUclips & I went immediately to eat only 2 meals/day & no snacks! My 2 meals I had in a 4 hour window so I was fasting for 20 hours every day. My hunger & cravings went away in 3 days! In 3 months I’d lost 21 kilos! Sadly, I fell off the wagon when my dad passed & I gained weight again. I’m going to try & get back on track. I can strongly recommend Dr. Berg & Healthy Keto + Intermittent fasting! It helped with my chronic constipation also! To heal the gut I believe is essential! I’ve heard a doctor/scientist say that Sjogren’s has nothing to do with Rheumatism but it’s a neurological problem! I also got Asthma, Psoriasis & joint pain - both big & small joints. Sorry for this long story & sadly enough it’s just a start… I wish there was more I could suggest for all of you, but I’d like to finish with that when it comes to exercise - don’t do it every day! It’s when you let your muscles rest they get stronger! Exercise one day & rest for 2 days! If you can go for walks you can do that every day 👍🏼! Walking backwards (at a safe area) is really good! You use other muscles & it gives your brain a workout also! I wish you all the best 🙏🏼❣️❤️
Thank you for sharing. I felt like I was reading about myself first a minute there! I can totally relate to not being able to move, literally! I'm 51 & feel like I'm 91...it sucks & what sucks more is having no quality of life, not to mention people assume you're lazy.
Recently diagnosed at the age of 48. I have been taking 2 hard classes at the gym everyday for years and eating healthy. The only self care I had to adopt is to stop working full time. Always had an abusive employer my entire life working for Asian companies. I now work part time but hope to never having to work again one day, that will make my fatigue go away
“Defined by who I AM”. Most profound statement to me. I’ve worked military and now civilian DOD for a combined 28 years now. Odd schedules, horribly long hours, extremely high stress. Then I tried to make up for “lost time” and then try to make up the lost time - with my family. Also, my oldest daughter struggled with severe onset Crohn’s Disease in a flare for about 10 years (thank god for surgery). My body quit.
I am hearing this physician saying No! to helping sjogrens patients with pain medications and even possibly a stimulant for fatigue. On this Sjogrens platform it’s disheartening to listen to a physician disregard our pain and often real need for a stronger, yes even a narcotic, opioid prescription. I have safely taken oxycodone only as needed for years. I am thankful my Primary Care Physician has been an integral part of my Sjogren / Lupus healthcare team helping me manage pain, mobility, fatigue, lung disease, autonomic dysfunction and peripheral polyneuropathy per EMG. This AI is systemic and can be very disabling. I have been disabled since 2017, I worked 25 years, FT as a LPN. Telling people to just listen to their symptoms and exercise, rest eat healthy… is not the answer for all that they may face. It’s been a long road for me. My family, husband & sister and I have had to advocate for the many tough unknown health challenges I have faced. Thanks for letting me share☺️
I went to a new Rehumatologist. Rude and hateful. Told me it only involved eyes and mouth. Nothing to do with pain or fatigue and he would only see me once a year. I felt so beat up leaving his office. He talked down to me. Mine is so severe I can't hard function. Pain, brain fog, memory, always exhausted, depression and more. I knew more than the Doc.
I have sjogrens for 15 years now. I used hydrochloriquine but unfortunately after a few years it affected my eyesight. I ache a lot. I walk briskly half an hour 5 days a week, do stretches, exercises as I can. Sjogrens affected my GI. Now I have esophageal motility. I stopped eating gluten and dairy. Sjogrens affects my sleep. Never sleep deeply or sleep through the night without going to the bathroom 2-3 times a night. I drink close yo a gallon a day. I used restasis now I shifted to xiitra.
Modafinil is a miracle for the fatigue. Talk with your doctor. Studies have been done. look them up, print them out and take them to your doctor. I also take melatonin at night.
@@KMx108 ask your doctor to check ANA. Auto immune would decide if you have it. Hopefully not! I don’t wish it for anybody. May God heal us all. He can!
The fatigue is totally so hard to deal with, there is nothing to compare it to .. I also have type 1 diabetes that does not help my situation and plus the fact I am older.. I will not give up.. ever!
Since 1982 I’ve been diagnosed with ME/CFS, Fibromyalgia, Atrial Fabulation, Sjogrens Syndrome, Postural Orthostatic Tachycardia Syndrome aka Pots etc. After a Pots related faint in the garden in 2018 I broke my thumb, cracked some ribs, broke my knee (Tibial Plateau Fracture) sprained my wrist and ankle. I’m now in a wheelchair full time, unable to walk, weight bear, bend my knee and I have a dropped foot. After an EMG test it showed damage to the perennial and sciatic nerves. I’ve now been diagnosed with Complex Regional Pain syndrome (aka the Suicide Syndrome) and Osteoporosis. I can’t get out of the house independently because of steps and the high threshold. I can’t access many rooms now or even wear shoes. How am I supposed to exercise while coping with so many life altering conditions and disabilities?
I'm 26 and fatigue is my main issue. I can't take stimulants because I get tachycardia. I can't even get out of bed most days. I can't sleep well either. I've been on hydroxychloroquine for six years but doesn't make a difference fatigue wise.
Did you ever find a solution or supplement that helps your Srojren's Syndrome? I'm age 30, but at age 26 I developed what I call "Nightmare Srojren's" overnight, essentially my skin moisture glands no longer work. This means I have to take six to ten showers every single day, and can never work a normal outside job for the rest of my life (because my skin is extremely painful unless I shower once an hour or two.) I wake up in horrible pain every single day since my dry skin hurts so badly. I tried parasite cleansing but sadly it didn't help, I wish so badly there was a way to somehow "reactivate" my moisture glands. Lion's Mane apparently regenerates nerve endings but it gives me awful brain fog. I feel like my entire life is over and my potential for happiness in this timeline is completely gone.
@@vvvios did u try Johnsons after shower moisturizing gel? Seems to keep the skin moisturized. Did u try cyclosporine? Did u try the anti inflammatory diet? Did u try intermittent fasting? Did u do any stress relief exercises? Did u stop coffee and any diuretics? Are there any food sensitivities? Did u try Salagen? Dont quit there must be a solution.
Have you tried a gluten and lactose free diet? If you aren't already taking care of the other symptoms as the ones mentioned. The are some ways to take care of dryness
@@MariSegato u mean milk or lactose only? And i believe cutting it out completely can make the situation worse. In terms of gluten but lactose free milk seems fine in small quantities or like a cup a day
My worse symptom. I do exercise, yoga mostly, and eat correctly. I can't take Plaquinil. Everyday I walk bc I'm still working. Lately, I've been so fatigued even with still exercising that I can't barely work. It's terrible. Stimulants barely work for me as well. I'm also only 38.
I started having symptoms at 38 also. I’m 45 now and wry little has improved. Exercise makes it worse for me too. Every once and awhile it helps but changing my diet and taking salivastim doesn’t take away fatigue. Stimulants do not help. It doesn’t help that these men are discussing something that rarely affects men. The biggest problem is the lack, of research because women are the ones mainly affected. In the US, most medical research is only focused on men.
@@amypoff8589 I so agree with you Any extra exercise just causes another flare up I actually got annoyed at these men particularly when they said physicians agree about exercise How many of these experts actually suffer from or have experience the fatigue. I guess they agree so it must be right Just come live my life for a day and let’s see
I am a gardener. I have a seven bed garden, I grow vegetables I can them I cook, I do a lot. I also have a really disabled spine. I push myself. The only meds are three opiates a day. If I didn't have that, I would not be able to do the things I do. Right now I'm going through a flare and I have been diagnosed with Sjogren's for about 20 years now. I'm 64.
You're lucky to have pain meds. Most can't get them anymore. Because they took mine away, I stopped being able to exercise and function properly. Now I'm in an electric wheelchair which would could have been avoided! My back and legs are so damaged they will never improve according to doctors. This is the fault of the CDC and DEA.
i hope one of the subjects you guys explore on this channel is the correlation between sjogren's and memory issues. my memory used to be sharp as a tack. now i'm constantly repeating questions or not remembering if i did something or not. i've recently gotten more testing done through the neurologist to ensure it's not something else.
I feel the same way, I'm a lab and Radiology manager and I've had Sjogren's and autoimmune for a number of years and the last two years I had some horrible brain fog. I had a bad flare-up several years ago and it created a lot of problems for me. I had synovitus and vasculitis, had to have fluid drained from my knee and my RCRP was super high along with my ANA and ESR. They believe my Sjogren's us secondary to another autoimmune, most likely lupus and RA. I had massive amount of joint destruction back in the 90s when I suffered from autoimmune and it left me with erosive arthritis, I've had shoulder surgery on both shoulders. At that time I was bedridden and super sick, every joint in my body swelled up so bad I couldn't even walk... my knees wouldn't bend enough for me to even sit on a toilet. my feet were so swollen I couldn't get my shoes on and I couldn't hold a glass because my hands were swollen straight out and the fingers wouldn't hold anything. (I had been playing sports and running about five miles a day and one of the first symptoms I noticed was my knees hurting worse when I was walking up the stairs.) My general physician gave me steroids and an anti-inflammatory and then later on I got sick again and I started on Plaquenil but then I had liver damage. which they thought was from the Plaquenil so they took me off. My liver enzymes were all between 400 and 600. I got off the Plaquenil and got some better. All along I think I just tried to deny what was happening to me. One rheumatologist wanted to put me on Methotrexate and I didn't want to do that so I refused...at the time I thought I was doing what was best for me but maybe I wasn't. I've struggled with joint pain and horrible dry eyes and mouth. Fast forward 22 years ago when I had significant eye problems again and they were terrible. I already knew I had failed all the eye tests as far as terrible dry eyes no tear production but they were so bad they were scarlet red I had corneal abrasions and then I also developed Synovitis and vasculitis. After having blood tests and going to see a new rheumatologist I went back on Plaquenil...he put me on a lower dose and I have had no problem with the liver enzymes going up and I do take steroids for flare-ups I also have horrible ringing in my ears which drives me crazy. I continue to take xiidra for my eyes twice a day and I also put lotemax in my eyes at night. My mouth is so dry at night and it just drives me crazy. I also take a very low dose of Gabapentin, 100 mg. I was very skeptical about that because I am not a Pill Popper... I take a ton of supplements which I believe has helped me. Like I said before I'm still working full-time long hours especially with covid it was horrible. I do suffer with horrible debilitating brain fog, sometimes I feel like I asked the same questions over and over and I can't stay focused on tasks as much as I used to. I would do anything to have just a good restful night sleep. I feel like I need to take the pilocarpine for my dry mouth but I'm a little worried about that as well I don't know if it's helpful or not. Anyway that's where I'm at on my journey. my mother and her sister both had pulmonary fibrosis and another sister had an autoimmune as well so I wonder if it runs in the family. I am 64, it will be 65 in November. I'm 5 foot 4 and weigh about 125 so I'm not overweight. Any other thoughts or ideas about how to help with what we're all dealing with would be appreciated. Does anybody else deal with horrible tinnitus? I have to put on sleep music at night to try to get to sleep because of my ears ringing so bad.
If I don't exercise my immune system or something deteriorates my muscles and if I exercise i will be in great pain for days. Just glad I'm old and it's almost over.
I am not only happy am alive but also glad that "DrMadida" was able treat and cure me with his herbal medication🌿 of my parosmia 👃🏻👃🏻, Meniere disease and Parkinson disease(PD) with their herbal treatment.
When I say I'm "fatigued," I mean I feel like someone dropped a safe on my head. I am spent, wiped out, flattened. It's a whole different thing than "not getting enough sleep."😒
I have had lupus for over 30 years. Steroids were used as the only treatment that helped me through horrible flares. I don’t know the difference between all my illnesses. I can say right now when I wake every morning, l am already exhausted physically and mentally
Modafinil is a miracle for the fatigue. Talk with your doctor. Studies have been done. I recommend looking them up, print them out and take them to your doctor.
I am waiting to get tested for POTS and SS. I can sleep for 12 hours or more. I slept for 14 hours last night. Yes I have extreme, extreme fatigue and extreme ,extreme pain. I have passed out and don't remember it at all.
I often wonder if my workaholic life cause my adrenal fatigue which then triggered my Sjögren’s? My body just gave up from overworking , lack of sleep, stresses in meeting work and family demands. Maybe I did this to myself?
Same...autoimmune diseases are often queried as being stress or trauma related? My mother had sjogrens. I worked my backside off for years n once menopause hit n my mother died...bamm.. it hit me hard
I have 2 autoimmune disease vitiligo and Sjogrens both cause fatigue. People do not understand fatigue. I work hard physically everyday but then there will be that day (way to often) that I hit a brick wall and I literally cannot function. How I try to explain how I feel is: I have 12 spoons, that represent my energy level for the day. It takes one to get out of bed and dressed. If I am busy cleaning multiple houses in a day I cannot plan anything for after I am done. I don’t go to bed but I cannot move or think. But I keep moving.
When walking around where i live a feel dizzy, like i m going to faint. I do stretching ... plaquenil does not help with fatigue or muscle pain all the time for me. I have a question, i heard and read articles or people saying that they cure Ra by taking care of their gut. When your gut is linking it causes you to get Ra or other immune disease . Is that true? If tour gut it is healthy it may helps but i don’t know if it can cure a such disease like Ra or Lupus for instance.
Gracyas1. I too have heard this. The connection to most diseases lie in the GI tract. It’s cleaning that out and eating different is probably the ticket.
i usually get up tired in the morning and the only exercise i can do is brisk walking for 30 minutes, otherwise, i get really bad numbness in my limbs and get even more tired!!! still dont know what to do
I have been using salivastim for the last 3 weeks and it has helped with saliva production. I also take turmeric for inflammation and pain. I cannot take any of the other meds
I’m always super tired and my kids and friends just don’t understand. I was doing yoga before being diagnosed with Sjogren’s but some days I just cannot do it. I try to do yoga 30-45 mins a day. I have to take at least a day or two with no exercise though. Otherwise I have flare ups, my legs hurt really bad and are very warm to the touch. My body sometimes aches and I’m just overall tired during the flare ups. It’s no rhyme or reason to it. I just wish I could figure it out. Took the doctors 5 yrs to diagnose the sjogren’s. ☹️ I switched to a new rheumatologist and he put me on plaquenil recently. I don’t really see the difference.
@@naanortey3869 it's been about 3-4 months since starting the plaquenil. my symptoms aren't any better or any worse, but since i've begun having some issues w/my eyes i don't see me being on it long term. but thank you for the advice.
Same here. My family don’t understand and they think i am making excuses. There are the days when you don’t feel like working at all. Its so hard to explain, i started exercising daily but after few days i am not even able to get out of the bed. My legs and arms hurt so bad
I was diagnosed with Sjogren recently. Yet started losing my hair about 4 years ago. I have been on Plaquenil for 2 months ( 400mg per day) . Rheumatologist said Plaquenil should help with hair loss. Got my hopes high. Well I am losing so much hair , i am devastated. I will have to cut my hair short also. Anyone has stopped hair loss with Plaquenil ? Any Advice would be appreciated.
Minoxidil is an old hair loss drug contained in messy Rogaine. It is now available in low dose prescription tablets and has been found to be very effective.
Fatigue conjures up a message of tierdness, with myself . Thats not a correct description, its total exhaustion to point where it like your body has just had its enery switch flicked off.
The doctors put me on plaquequnal ,: Hydroxychloroquine: And it’s starting to make me go blind. They tested my eyes before they put me on it and they tested me at six months and said I must must must get off of it. I can’t have that medicine it’s ruining my eyes. And that was the first time I ever had to get glasses in my life.
I get fatigued then go outside and walk 3 miles a day even though I'm not supposed to because I have malignant Melanoma but oh well right? I walk because I'm trying to reverse the diabetes. My A1C numbers are much better. I'm just waiting to see what else I get diagnosed with.
Fatigue is not visuele so People and even doctors do not understand it well also because of the dryness mouth, lips ,throat skin. I have sleepingdisorders from these but also from pain. Dvn and so on also my eyes with Macula
The one Dr. isn't very likable, you can't put everything in a neat box patient-wise like he wants to. We're all unique all different...something ineffective for one may help another and vice versa. I want you to exercise even though you feel like s-‐-90 percent of the time, isn't helpful.
That guy obviously had no idea what real severe fatigue is 🙄 it's not oh I'm tired fatigue, it's a you wake up with zero energy, do not get energy from caffeine, do jot get any energy or fuel from eating food. It's complete severe exhaustion with no energy from any source. It's like putting gas in a car, a new battery and new parts and the car still won't run at all. No one knows why. Exercise 🤣😂🤣😂 wow he's clueless!! It doesn't work. He needs to experience Sjogren's himself.
Just listened to this. Hydroxychloroquine ha? Isn’t that what some recommend for Covid? If that’s the case, logic tells me that vaccinations for auto immune sufferers (not medicated) is not a good idea. Lolz.
I’m not tired I’m totally exhausted all the time. 😞
Sjogren caused my unreasonable fatigue - full stop
Glad to hear physicians agree about exercise
As a patient just get up can be an extreme exercise
I fully appreciate the comment here ‘telling a fatigued person to Exercise as like offering a drowning person a glass of water’
Before I knew I had Sjogren’s and before symptoms started becoming more prominent, I would get up early 4 days a week and either do HIIT training or cardio and strength training. I eat healthy and adopted a lot of very healthy eating habits and take good quality supplements to help fight inflammation. Then I started to notice I started wanting to sleep in more, started pressing snooze and couldn’t get out of bed. So I agree exercise is a great habit, but for me, it doesn’t seem to help the symptoms of Sjogren’s.
Sjogrens is NOT taken as seriously as it should be. These doctors have NO idea how debilitating this disease is 😑
Unrelenting discomfort, fatigue and pain. I might have a good day here n there, but mostly it's pretty bad! Even if I'm doing all the right things I can feel terrible.
Telling a person with fatigue to exercise is like telling a drowning person to have a drink.
No, it isn't. If you do it the way he describes, it will help. Because if you DON'T do anything your muscles, circulation etc will definitely get worse. I started 35 years ago when I had two children to take care of, if I hadn't kept it up, I couldn't have made it.
I agree with you
Amen !!
Exactly.
@@ursulacook9883Ich gehe jeden Tag zweimal täglich mit meinem Hund spazieren. Nichts wird dadurch besser. Nur selten gibt es gute Tage an denen ich meinen sehr kleinen Haushalt säubern kann. Wenn ich die körperliche Tätigkeit übertreibe kann ich oft zwei Tage danach garnichts mehr unternehmen.
I had a pre-existing neurological disorder before I got diagnosed with Sjogrens. I’ve dealt with pain and fatigue for years already but this fatigue is like nothing I’ve ever experienced. I hate watching television and I’m not very good at doing nothing. I do my best to take 2 - 20 minute stationary bike rides early every morning. Then I just try my best to get moving and try to as much done as I can. When I’m completely exhausted, I give in and I close my eyes for 45 minutes to an hour. Then I force myself to get moving again. Some days are better than others but I accept what life throws at me. I’d love to sit down and cry but I already know that doesn’t work. For me, attitude is everything.
My doctor totally ignored my fatigue as well as pain. Opiates do indeed provide some relief for muscle pain and headaches. If more docs educated themselves or had this disease, you can bet they'd start prescribing some pain relief.
I'm 100% with you.
I wish they could all could just walk in my body for 1 week especially if it was during a flare but only take about two days
I was treated for RA from my 25, last 17 years I was finally diagnosed Sjogren. I also have high pressure and tahikardia . My doctor use everything but for a whole year I am without dexason shots. Elicea, resohin, b12 complex and doreta. I am 52 now and I do not have strength to fight with fatigue anymore. So, I stopped for th first time. I am sad but I can only lay down in my bed and do nothing at all. All the best to all seek people from Serbia 🇷🇸
Swimming slowly helps me a lot, partly due to the actual exercise but also having conversations with others.
@lindah8838
Yes! Being tired is isolating.
Address sleep apnea, b12, vitamin d, fresh veg diet, no smoking, stress, but once these are all optimised Sjögren’s is still there like flu and won’t leave. Please research more as it’s devastating in its effect.
My vitamins he helped me tremendously. D3 b12 probiotics and a multi vitamin
For sure wtf
To hear someone validate me/us is rather overwhelming... i gave up reaching out to docs n friends long ago... the healthy just dont 'get it' ...i also have hashimotos ( thyroid) just for good measure...i am often zinc defficient. Sleep is great..when my over tired body actually gives in to it! The spoon theory is great. Prioritise... be kind to yourself
I absolutely agree that exercise is the best way to combat (some of) the fatigue. I tend to exercise late afternoon when I'm at my most tired, and I really get a second wind after exercising. Also you need to be forgiving of yourself - when I first was diagnosed, I spent a few years fighting against the fatigue thinking I could will it away. That, of course, didn't work, and I finally figured out that I needed to be listening to my body. It's complex, but you and your body can figure out best how to manage this complicated disease.
Thank you for speaking up. Yes the fatigue is rough. It just goes sleep now and my body shuts down. I will try exercise if possible. Do you gave a special eating plan?
@@cindyriehm7411 My only diet plan is to avoid processed foods and I do pay attention to foods that are good for your immune system.
I used to work with older people & I started before I turned 18. I’m very short, 148 cm & I’ve weighed 43 kilos almost my whole grown up life - all muscles because I’ve always loved to exercise. Especially horse riding. I shouldn’t have been allowed to have such a heavy job, due to my size & there was barely nothing to help you move a patient but your own strength. I was constantly working with my arms over my head because almost all my walking patients were taller than I am. & then all the cleaning & carrying etc. My body was worn out so just before I turned 24 I got badly injured from this heavy job. Neck, shoulders, lower back etc. I kept working with pain killers & cortisone shots, on & off for 12 more years & I had 2 kids also during this time. C-sections. Finally a doctor forbid me to work any longer. I was devastated & relieved at the same time. I did work one more year, night, from 98-99. After that I was too bad off. I was then 36 years old & all my dreams of becoming a singer went down the drain. I could barely sing anymore because of my ruined neck & all the inflammation & I couldn’t sit & play the piano for more than a few minutes. My arms just stopped working. I was diagnosed with Sjogrens 2016. It took 5 years… I’m always totally exhausted & I don’t get any help except for pain killers & cortisone shots. Since I can’t work, doctors don’t care. My stomach is ruined from all the inflammation pills for over 30 years so I don’t have anything for my inflammations. The nerve pain never goes away & I barely sleep at all. I can’t walk because of my injuries in my lower back. I can’t work with my arms. It’s really hard to get dressed or take a shower or wash my hair. I believe that eating Healthy Keto & doing Intermittent fasting helps a lot. When I went through menopause I gained 26 kilos in 10 months?! I couldn’t move! Not even turn around in bed! I started following Dr. Berg on RUclips & I went immediately to eat only 2 meals/day & no snacks! My 2 meals I had in a 4 hour window so I was fasting for 20 hours every day. My hunger & cravings went away in 3 days! In 3 months I’d lost 21 kilos! Sadly, I fell off the wagon when my dad passed & I gained weight again. I’m going to try & get back on track. I can strongly recommend Dr. Berg & Healthy Keto + Intermittent fasting! It helped with my chronic constipation also! To heal the gut I believe is essential! I’ve heard a doctor/scientist say that Sjogren’s has nothing to do with Rheumatism but it’s a neurological problem! I also got Asthma, Psoriasis & joint pain - both big & small joints. Sorry for this long story & sadly enough it’s just a start…
I wish there was more I could suggest for all of you, but I’d like to finish with that when it comes to exercise - don’t do it every day! It’s when you let your muscles rest they get stronger! Exercise one day & rest for 2 days! If you can go for walks you can do that every day 👍🏼! Walking backwards (at a safe area) is really good! You use other muscles & it gives your brain a workout also! I wish you all the best 🙏🏼❣️❤️
Thank you for sharing. I felt like I was reading about myself first a minute there! I can totally relate to not being able to move, literally! I'm 51 & feel like I'm 91...it sucks & what sucks more is having no quality of life, not to mention people assume you're lazy.
Recently diagnosed at the age of 48. I have been taking 2 hard classes at the gym everyday for years and eating healthy. The only self care I had to adopt is to stop working full time. Always had an abusive employer my entire life working for Asian companies. I now work part time but hope to never having to work again one day, that will make my fatigue go away
It will help a lot. I am sorry to say it won’t go away. At least it didn’t for me. Everything takes energy. EVERY THING.
😂I hope that’s not a dig at Asians!
“Defined by who I AM”. Most profound statement to me. I’ve worked military and now civilian DOD for a combined 28 years now. Odd schedules, horribly long hours, extremely high stress. Then I tried to make up for “lost time” and then try to make up the lost time - with my family. Also, my oldest daughter struggled with severe onset Crohn’s Disease in a flare for about 10 years (thank god for surgery). My body quit.
Is there any medication to slow down the Sjogren’s?
F’n POG
I hope and pray there is an affordable cure for SS soon.
I am hearing this physician saying No! to helping sjogrens patients with pain medications and even possibly a stimulant for fatigue. On this Sjogrens platform it’s disheartening to listen to a physician disregard our pain and often real need for a stronger, yes even a narcotic, opioid prescription. I have safely taken oxycodone only as needed for years. I am thankful my Primary Care Physician has been an integral part of my Sjogren / Lupus healthcare team helping me manage pain, mobility, fatigue, lung disease, autonomic dysfunction and peripheral polyneuropathy per EMG. This AI is systemic and can be very disabling. I have been disabled since 2017, I worked 25 years, FT as a LPN.
Telling people to just listen to their symptoms and exercise, rest eat healthy… is not the answer for all that they may face. It’s been a long road for me. My family, husband & sister and I have had to advocate for the many tough unknown health challenges I have faced. Thanks for letting me share☺️
I agree and feel your pain daily. As a former nurse, l am in dismay at the coldness of physicians.
I went to a new Rehumatologist. Rude and hateful. Told me it only involved eyes and mouth. Nothing to do with pain or fatigue and he would only see me once a year. I felt so beat up leaving his office. He talked down to me. Mine is so severe I can't hard function. Pain, brain fog, memory, always exhausted, depression and more. I knew more than the Doc.
@rober . . .
I wonder if that "rheumatologist" is an interloper. It's been known to happen. I love both rheumatologists I've had.
Exactly same boat now
Glad you ran away from that doctor. 😊
I have sjogrens for 15 years now. I used hydrochloriquine but unfortunately after a few years it affected my eyesight. I ache a lot. I walk briskly half an hour 5 days a week, do stretches, exercises as I can. Sjogrens affected my GI. Now I have esophageal motility. I stopped eating gluten and dairy.
Sjogrens affects my sleep. Never sleep deeply or sleep through the night without going to the bathroom 2-3 times a night. I drink close yo a gallon a day. I used restasis now I shifted to xiitra.
I haven't been diagnosed with this but wow, you described my life over the past 6 years to s tee.
Modafinil is a miracle for the fatigue. Talk with your doctor. Studies have been done. look them up, print them out and take them to your doctor. I also take melatonin at night.
@@KMx108 ask your doctor to check ANA. Auto immune would decide if you have it. Hopefully not! I don’t wish it for anybody. May God heal us all. He can!
I have the same condition exactly like you. Hydrochloroquine affected my eyes. I go to Retina doctor every 3-6 months
The fatigue is totally so hard to deal with, there is nothing to compare it to .. I also have type 1 diabetes that does not help my situation and plus the fact I am older.. I will not give up.. ever!
Since 1982 I’ve been diagnosed with ME/CFS, Fibromyalgia, Atrial Fabulation, Sjogrens Syndrome, Postural Orthostatic Tachycardia Syndrome aka Pots etc. After a Pots related faint in the garden in 2018 I broke my thumb, cracked some ribs, broke my knee (Tibial Plateau Fracture) sprained my wrist and ankle. I’m now in a wheelchair full time, unable to walk, weight bear, bend my knee and I have a dropped foot. After an EMG test it showed damage to the perennial and sciatic nerves. I’ve now been diagnosed with Complex Regional Pain syndrome (aka the Suicide Syndrome) and Osteoporosis. I can’t get out of the house independently because of steps and the high threshold. I can’t access many rooms now or even wear shoes. How am I supposed to exercise while coping with so many life altering conditions and disabilities?
I totally hear you.
The fatigue and Pain eat up any energy I might have had.
PS. So sorry you are suffering. I hope they find something to help us.
Iv ketamine therapy has changed my life. The nurse infusing me had whole body crps. It’s so helpful
I'm 26 and fatigue is my main issue. I can't take stimulants because I get tachycardia. I can't even get out of bed most days. I can't sleep well either. I've been on hydroxychloroquine for six years but doesn't make a difference fatigue wise.
Did you ever find a solution or supplement that helps your Srojren's Syndrome? I'm age 30, but at age 26 I developed what I call "Nightmare Srojren's" overnight, essentially my skin moisture glands no longer work. This means I have to take six to ten showers every single day, and can never work a normal outside job for the rest of my life (because my skin is extremely painful unless I shower once an hour or two.) I wake up in horrible pain every single day since my dry skin hurts so badly. I tried parasite cleansing but sadly it didn't help, I wish so badly there was a way to somehow "reactivate" my moisture glands. Lion's Mane apparently regenerates nerve endings but it gives me awful brain fog. I feel like my entire life is over and my potential for happiness in this timeline is completely gone.
@@vvvios did u try Johnsons after shower moisturizing gel? Seems to keep the skin moisturized. Did u try cyclosporine? Did u try the anti inflammatory diet? Did u try intermittent fasting? Did u do any stress relief exercises? Did u stop coffee and any diuretics? Are there any food sensitivities? Did u try Salagen? Dont quit there must be a solution.
Have you tried a gluten and lactose free diet? If you aren't already taking care of the other symptoms as the ones mentioned. The are some ways to take care of dryness
@@MariSegato u mean milk or lactose only? And i believe cutting it out completely can make the situation worse. In terms of gluten but lactose free milk seems fine in small quantities or like a cup a day
Modafinil is a miracle for the fatigue. Talk with your doctor. Studies have been done. look them up, print them out and take them to your doctor.
Thank you. My fatigue comes and goes, muscle weakness is hard to deal with too. I'm 72 and have been on Plaquenil for 8 years.
My worse symptom. I do exercise, yoga mostly, and eat correctly. I can't take Plaquinil. Everyday I walk bc I'm still working. Lately, I've been so fatigued even with still exercising that I can't barely work. It's terrible. Stimulants barely work for me as well. I'm also only 38.
I started having symptoms at 38 also. I’m 45 now and wry little has improved. Exercise makes it worse for me too. Every once and awhile it helps but changing my diet and taking salivastim doesn’t take away fatigue. Stimulants do not help. It doesn’t help that these men are discussing something that rarely affects men. The biggest problem is the lack, of research because women are the ones mainly affected. In the US, most medical research is only focused on men.
@@amypoff8589 I so agree with you
Any extra exercise just causes another flare up
I actually got annoyed at these men particularly when they said physicians agree about exercise
How many of these experts actually suffer from or have experience the fatigue.
I guess they agree so it must be right
Just come live my life for a day and let’s see
I startd taking Plaquinil a month and a half ago and tis made my symptoms worst! Doctor just told me to stop today.
I am a gardener. I have a seven bed garden, I grow vegetables I can them I cook, I do a lot. I also have a really disabled spine. I push myself. The only meds are three opiates a day. If I didn't have that, I would not be able to do the things I do. Right now I'm going through a flare and I have been diagnosed with Sjogren's for about 20 years now. I'm 64.
You're lucky to have pain meds. Most can't get them anymore. Because they took mine away, I stopped being able to exercise and function properly. Now I'm in an electric wheelchair which would could have been avoided! My back and legs are so damaged they will never improve according to doctors. This is the fault of the CDC and DEA.
i hope one of the subjects you guys explore on this channel is the correlation between sjogren's and memory issues. my memory used to be sharp as a tack. now i'm constantly repeating questions or not remembering if i did something or not. i've recently gotten more testing done through the neurologist to ensure it's not something else.
I have had sjogrens for 5 years now and have experienced significant memory loss. Based on what I’ve read, it is a common issue with sufferers
me too
I feel the same way, I'm a lab and Radiology manager and I've had Sjogren's and autoimmune for a number of years and the last two years I had some horrible brain fog. I had a bad flare-up several years ago and it created a lot of problems for me. I had synovitus and vasculitis, had to have fluid drained from my knee and my RCRP was super high along with my ANA and ESR. They believe my Sjogren's us secondary to another autoimmune, most likely lupus and RA.
I had massive amount of joint destruction back in the 90s when I suffered from autoimmune and it left me with erosive arthritis, I've had shoulder surgery on both shoulders. At that time I was bedridden and super sick, every joint in my body swelled up so bad I couldn't even walk... my knees wouldn't bend enough for me to even sit on a toilet. my feet were so swollen I couldn't get my shoes on and I couldn't hold a glass because my hands were swollen straight out and the fingers wouldn't hold anything. (I had been playing sports and running about five miles a day and one of the first symptoms I noticed was my knees hurting worse when I was walking up the stairs.) My general physician gave me steroids and an anti-inflammatory and then later on I got sick again and I started on Plaquenil but then I had liver damage. which they thought was from the Plaquenil so they took me off. My liver enzymes were all between 400 and 600. I got off the Plaquenil and got some better. All along I think I just tried to deny what was happening to me. One rheumatologist wanted to put me on Methotrexate and I didn't want to do that so I refused...at the time I thought I was doing what was best for me but maybe I wasn't. I've struggled with joint pain and horrible dry eyes and mouth. Fast forward 22 years ago when I had significant eye problems again and they were terrible. I already knew I had failed all the eye tests as far as terrible dry eyes no tear production but they were so bad they were scarlet red I had corneal abrasions and then I also developed Synovitis and vasculitis. After having blood tests and going to see a new rheumatologist I went back on Plaquenil...he put me on a lower dose and I have had no problem with the liver enzymes going up and I do take steroids for flare-ups
I also have horrible ringing in my ears which drives me crazy. I continue to take xiidra for my eyes twice a day and I also put lotemax in my eyes at night. My mouth is so dry at night and it just drives me crazy. I also take a very low dose of Gabapentin, 100 mg. I was very skeptical about that because I am not a Pill Popper... I take a ton of supplements which I believe has helped me. Like I said before I'm still working full-time long hours especially with covid it was horrible.
I do suffer with horrible debilitating brain fog, sometimes I feel like I asked the same questions over and over and I can't stay focused on tasks as much as I used to. I would do anything to have just a good restful night sleep.
I feel like I need to take the pilocarpine for my dry mouth but I'm a little worried about that as well I don't know if it's helpful or not.
Anyway that's where I'm at on my journey. my mother and her sister both had pulmonary fibrosis and another sister had an autoimmune as well so I wonder if it runs in the family.
I am 64, it will be 65 in November. I'm 5 foot 4 and weigh about 125 so I'm not overweight. Any other thoughts or ideas about how to help with what we're all dealing with would be appreciated.
Does anybody else deal with horrible tinnitus? I have to put on sleep music at night to try to get to sleep because of my ears ringing so bad.
Dr Thomas . Love his book❤
I exercise regularly and I still have a hard time getting out of bed. Now I am so tired I have taken a break from exercise because it's too much.
I experience the same issue. Fatigue is the worst especially when ppl act like your making it up because I don’t “look” sick
@@amypoff8589 We all have 'Oscars" for our acting normal....
@@285Turtle agreed
I have to use what energy I have to do daily tasks like housework etc. I couldn't do that and an exercise routine. There are bad days.
If I don't exercise my immune system or something deteriorates my muscles and if I exercise i will be in great pain for days. Just glad I'm old and it's almost over.
I am not only happy am alive but also glad that "DrMadida" was able treat and cure me with his herbal medication🌿 of my parosmia 👃🏻👃🏻, Meniere disease and Parkinson disease(PD) with their herbal treatment.
I'm so tired😒
me too all the time 😪
I feel so tired too and depressed at times.
When I say I'm "fatigued," I mean I feel like someone dropped a safe on my head. I am spent, wiped out, flattened. It's a whole different thing than "not getting enough sleep."😒
I have had lupus for over 30 years. Steroids were used as the only treatment that helped me through horrible flares. I don’t know the difference between all my illnesses. I can say right now when I wake every morning, l am already exhausted physically and mentally
Modafinil is a miracle for the fatigue. Talk with your doctor. Studies have been done. I recommend looking them up, print them out and take them to your doctor.
I am waiting to get tested for POTS and SS. I can sleep for 12 hours or more. I slept for 14 hours last night. Yes I have extreme, extreme fatigue and extreme ,extreme pain. I have passed out and don't remember it at all.
Word salad for " we have no idea, but we need your money to offer no help."
I often wonder if my workaholic life cause my adrenal fatigue which then triggered my Sjögren’s? My body just gave up from overworking , lack of sleep, stresses in meeting work and family demands. Maybe I did this to myself?
Same...autoimmune diseases are often queried as being stress or trauma related? My mother had sjogrens. I worked my backside off for years n once menopause hit n my mother died...bamm.. it hit me hard
I have 2 autoimmune disease vitiligo and Sjogrens both cause fatigue. People do not understand fatigue. I work hard physically everyday but then there will be that day (way to often) that I hit a brick wall and I literally cannot function. How I try to explain how I feel is: I have 12 spoons, that represent my energy level for the day. It takes one to get out of bed and dressed. If I am busy cleaning multiple houses in a day I cannot plan anything for after I am done. I don’t go to bed but I cannot move or think. But I keep moving.
I have no good days. Oh, I had two good days last year.
Exhaustion x 3. Add RA and Hashimotos 😢
Any recommendations for a rheumatologist near Atlanta that really understands Sjögren’s?
Sir if u are in severe pain. You will take anything
When walking around where i live a feel dizzy, like i m going to faint. I do stretching ... plaquenil does not help with fatigue or muscle pain all the time for me. I have a question, i heard and read articles or people saying that they cure Ra by taking care of their gut. When your gut is linking it causes you to get Ra or other immune disease . Is that true? If tour gut it is healthy it may helps but i don’t know if it can cure a such disease like Ra or Lupus for instance.
Gracyas1. I too have heard this. The connection to most diseases lie in the GI tract. It’s cleaning that out and eating different is probably the ticket.
@@phyllislen thank you! Have you tried it?
Abusive work place is deadly for autoimmune fatique.
i usually get up tired in the morning and the only exercise i can do is brisk walking for 30 minutes, otherwise, i get really bad numbness in my limbs and get even more tired!!! still dont know what to do
If I am not able to take to use the medication that is gone to, what kind of meds can I take
I have been using salivastim for the last 3 weeks and it has helped with saliva production. I also take turmeric for inflammation and pain. I cannot take any of the other meds
I’m always super tired and my kids and friends just don’t understand. I was doing yoga before being diagnosed with Sjogren’s but some days I just cannot do it. I try to do yoga 30-45 mins a day. I have to take at least a day or two with no exercise though. Otherwise I have flare ups, my legs hurt really bad and are very warm to the touch. My body sometimes aches and I’m just overall tired during the flare ups. It’s no rhyme or reason to it. I just wish I could figure it out. Took the doctors 5 yrs to diagnose the sjogren’s. ☹️ I switched to a new rheumatologist and he put me on plaquenil recently. I don’t really see the difference.
Plaquenil takes about 3 to 4 months to start working, maybe you should give it sometime if it hasn’t been that long since you started 😊
@@naanortey3869 it's been about 3-4 months since starting the plaquenil. my symptoms aren't any better or any worse, but since i've begun having some issues w/my eyes i don't see me being on it long term. but thank you for the advice.
Same here. My family don’t understand and they think i am making excuses. There are the days when you don’t feel like working at all. Its so hard to explain, i started exercising daily but after few days i am not even able to get out of the bed. My legs and arms hurt so bad
I’m exhausted too. I can sleep for days and still feel drained. I have found that drinking milk and eating sugar makes all the symptoms worse
I was diagnosed with Sjogren recently. Yet started losing my hair about 4 years ago.
I have been on Plaquenil for 2 months ( 400mg per day) .
Rheumatologist said Plaquenil should help with hair loss. Got my hopes high.
Well I am losing so much hair , i am devastated.
I will have to cut my hair short also.
Anyone has stopped hair loss with Plaquenil ?
Any Advice would be appreciated.
I have had Sjogrens now for 25 years and I heard Plaquenil can cause hair loss???
Minoxidil is an old hair loss drug contained in messy Rogaine. It is now available in low dose prescription tablets and has been found to be very effective.
@@francessiranovic4088
Thank you
Fatigue conjures up a message of tierdness, with myself . Thats not a correct description, its total exhaustion to point where it like your body has just had its enery switch flicked off.
I took plaquinal (sp?) for 11 mos for sub-acute Lupus. Last month of treatment I got mildly nauseated. Luckily sub-acute Lupus went away.
The doctors put me on plaquequnal ,: Hydroxychloroquine: And it’s starting to make me go blind. They tested my eyes before they put me on it and they tested me at six months and said I must must must get off of it. I can’t have that medicine it’s ruining my eyes. And that was the first time I ever had to get glasses in my life.
I can’t stand the pain anymore
I get fatigued then go outside and walk 3 miles a day even though I'm not supposed to because I have malignant Melanoma but oh well right? I walk because I'm trying to reverse the diabetes. My A1C numbers are much better. I'm just waiting to see what else I get diagnosed with.
Ya that’s not fatigue if your walking 3 miles a day. Fatigue is when you can’t get out of bed!!
Fatigue is not visuele so People and even doctors do not understand it well also because of the dryness mouth, lips ,throat skin. I have sleepingdisorders from these but also from pain. Dvn and so on also my eyes with Macula
Exercise ?? Sounds great BUT then the joint, bone and muscle paint kick in! 😑
Plaquenil is shit. Didnt help any symptom...
Exercise????
The one Dr. isn't very likable, you can't put everything in a neat box patient-wise like he wants to. We're all unique all different...something ineffective for one may help another and vice versa. I want you to exercise even though you feel like s-‐-90 percent of the time, isn't helpful.
Exercise you people are crazy
That guy obviously had no idea what real severe fatigue is 🙄 it's not oh I'm tired fatigue, it's a you wake up with zero energy, do not get energy from caffeine, do jot get any energy or fuel from eating food. It's complete severe exhaustion with no energy from any source. It's like putting gas in a car, a new battery and new parts and the car still won't run at all. No one knows why. Exercise 🤣😂🤣😂 wow he's clueless!! It doesn't work. He needs to experience Sjogren's himself.
This right here.
Just listened to this. Hydroxychloroquine ha? Isn’t that what some recommend for Covid? If that’s the case, logic tells me that vaccinations for auto immune sufferers (not medicated) is not a good idea. Lolz.