I have overwhelming fatigue I can barely walk ten metres without having to sit down.
I currently take Hydroxychloroquine and pilocarpine but neither help with the debilitating fatigue. I’m waiting to go on Mycophenolate but need an operation on my foot so can’t start it until after.
Has anyone had overwhelming fatigue and what worked for you? I’m getting desperate, I’m trying to look after my mother who has dementia and I am really struggling, she lives with me and can be really demanding.
Also I’m pinning my hopes on Mycophenolate, has it worked for fatigue on anyone using it?
Any help would be greatly appreciated! 😜
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rosserk
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Ohhhhhh dear me rosserk how I feel for you as I am struggling with the very same and severe reactions to any meds for Sjorens so I would love to hear from others as well. Go gently as possible. I am finding this so depressing as unable to function
I have been adding salt to my flavoured water for the last few days to treat POTS. I am not 100% sure yet but I feel 99% better! Im able to stay in my feet for a lot longer than before and the heavy feeling in my legs has gone. Salt is supposed to be beneficial to people with PoTs. Fingers crossed it carries on working because this is the best I’ve felt in years! I’m actually gob smacked that something as simple as salt could help so much.
Google salt and POTS for a clear explanation of why it works. Maybe you could try it and see if it helps you too? 😀
Tally I’m definitely 100% better adding a teaspoon of salt to my drinks over the course of the day. I add a pinch to my flavoured water every time I have a drink. I can’t believe the difference it’s making. Do you have POTs?
PoTs is common in people with sjogrens. My blood pressure drops through the floor when I stand or walk.
Google explanation:
It is often recommended to increase both fluid and salt intake in order to increase blood volume, which is typically low in POTS patients. ... Except for the hyperadrenergic subtype of POTS, a fluid intake of approximately two liters and an intake of three to five grams of salt is typically recommended per day.
I have a diagnosis of POTs but was never offered salt tablets which they normally prescribe for people with POTs!
The difference it’s made over the last 5 days is astounding! It has almost eliminated the overwhelming exhaustion I was getting, I’m just hoping it continues to improve but I actually feel great!!
Hi Rosserk, I too have struggled with fatigue and muscle weakness (particularly in my legs) for a long time, was actually diagnosed with CFS back in 2001, long before all my eye symptoms of SS started. I havent been able to take medication for it due to my extremely delicate stomach but I found I could tolerate Viridian high five multivitamin and mineral formula along with their vitamin C formula, they come in capsules, so easier to swallow than tablets. They are expensive but they have helped me a lot with the muscle weakness, I feel I get some strength back when I'm on them, and certainly notice when I don't take them 😖, its worth a try! 😁
Overwhelming fatigue? This was one of my early symptoms (along with a cluster of others). I basically could not get out of bed for four months. Eventually it started to ease up and I would get a couple of good days per week, then a couple of bad days per week until all good. However......
Just a question, do you have a pounding heart rate as well sometimes? If so, you may need to look at POTS (postural orthostatic tachycardia syndrome). It often goes with Sjögren’s Syndrome as part of the neurological insult it inflicts. For me a low dose of Propranolol was WONDERFUL. It eased the dreadful fatigue which accompanied the pounding heart. I am still on Propranolol after about six years and these symptoms do not happen to me anymore.
I wonder if those who get very bad fatigue with Sjögren’s are the same people who eventually get POTS. It would be an interesting research study.
I was diagnosed with POTS before I was diagnosed with sjogrens. I wasn’t given any medication I was told there wasn’t any and I just had to learn to live with it! If it turns out that POTS has been causing my fatigue I think I will probably explode!
Why do some doctors denigrate symptoms which are debilitating to their patient? I know I mentioned to my Endocrinologist once that I was having episodes of a rapid heartrate whereby I would simply get up from a chair or bed and my heartrate would soar and simultaneously I would get a dreadful slumping fatigue which would drag me to the ground. Her response was “a rapid heartrate has no ill effects.”
I knew it was not right. Within 48 hours of starting the beta blocker (Propanolol) I felt like a new person (apart from all the other SjS symptoms - lol). Every effective treatment helps when you have multi faceted symptoms.
Hi I didn’t want to respond until I was a bit more sure but!
I read up on treatment for POTs and found an article that said 5mg of salt per day could help symptoms. So I started putting salt in my flavoured water, I stick to a level teaspoon spread out across the day and I think it’s working! I hope I’m not imagining it but I definitely feel better and I can tolerate being in my feet a little longer each day. I can’t understand why my doctor didn’t start me in salt tablets when she got the confirmation I had POTS!
Like you I explain how I feel to my Doctor and she just looks at me like I’m going mad. I don’t blame her to be honest I have so many strange symptoms it does sound like I’m making it all up!
I also have Hashimotos which is likely secondary to SS. My doctor prescribed 25mcg levothyroxine and when my numbers were back in the range she refused to increase my medication. I had to switch to NDT imported from thailand and dose according to my symptoms and not my test results. It’s really common for people with thyroid issues to abandon their doctors and self treat because the medical profession don’t understand thyroid problems and only treat according to test results and not patient symptoms!
Anyway thanks for helping me I am really grateful! Fingers crossed the salt is working! 🤪
Salt is an intriguing idea. I have always craved salt and I don't sweat much so my body seems to want to conserve it. (Have to be very careful as prone to heat exhaustion even when resting.) With all my other SS and various symptoms, treatments and supplements, I stopped worrying about salt intake several years ago. I don't have high blood pressure.
And the thyroid medication is great to hear about. I had tested in the low normal range for thyroid function but the traditional clinics and Drs. wouldn't prescribe anything even though I had moderate fatigue that was making me depressed. But I found a Naturopathic MD who feels that low normal should be treated. I now take Liothyronine and feel much better.
He also prescribed me a low dose gel of Testosterone (also tested low enough for this). It also has made a big difference in how I feel. My yoga practice had been getting harder. Now I feel as though I can maintain, even increase my muscle mass. And yoga is fun again. I tolerated the testosterone well. Not everyone does.
Along with increased Vitamin D, which we probably all take by now, the thyroid medication and Testosterone has greatly improved my days. And I sleep much better. I am in the USA and my insurance pays for most of this except the Testosterone. But many Naturopaths here do not accept or aren't covered by health insurance. I had to search him out. His clinic is aligned with a hospital wellness program which seems to be pretty unique.
I hope this is the start of traditional medicine opening up to these personalized, alternative practices. I'm going to try accupuncture next as I can afford it. Keep being self-advocates!
i carried salt tablets after heart just dropping out after being in really high altitude when i was 40, the cardiologist back then, said wait till u are older there'll be better pacemakers on the market ! I recently started passing out again (70!) back to the cardiologist who says no pacemaker, wont fix it yet '
!! take elctrolite drinks - i don't bother in winter- but the last few days thought hmm the heart might be the cause of this added exhaustion and im on my first bottle today and am noticing the difference. it nicer tasting than the salt and has a better balance of trace elements so today its bright blue powerade that i buy as a powder. there's also gatoraid. Cardio suggested trying different as they all taste different and have different mixes.
Dont think mines pots rather more vasovagal posture drop. pretty unpredicable has lessened as ive aged as it goes with low blood pressure and low bl volume and age, lucky for me, increases cholesterol and narrows the bl vessels
Hi Rosserk, I completely understand. Having been there before I know exactly what you mean. The only way I got to dealing with it was rest when your body tells you to, do not fight it. Stay well hydrated modify your diet, Yoghurt (live) everyday aids your good bacteria and strengthens your immune system. When you can do something do it then, eg walk, housework etc, but don't over do it. Please listen to what your body is telling you. I would never arrange anything beyond a day because I would not know if I was going to be up to it. My experience of Hydroxy wasn't good, it made me feel worse. I only know this because I feel better off the stuff (it has been 2 years). Hydroxy affected everything. I would start with the basics and modify everything slowly. Vitamin D can also be beneficial. One last tip, have you given Acupuncture a go! It may be worth a go. Keep chugging along, you will beat it.
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