The Australian Sjögren's Syndrome Association
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How do I deal with Extreme debilitating fatigue?

Hello. I experience symptoms such as severe body aching all over and fatigue, along with other issues. I will be seeing a rheumatologist in 2 days and realize that it will probably take months before I get a diagnosis and treatment. The fatigue however is extremely debilitating and I am not able to do much of anything. I tried a light workout at home but I felt much worse after. Does anyone know what I can try to keep the fatigue at minimum?

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I wish I knew. I have same issue. Been to doctor. No answers.

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I also suffer from extreme fatigue and could not stay awake during normal daylight hours. For about 2 years my condition got worse until I saw an immunologist who sent me for all kinds of blood tests and confirmed I have Sjogrens, along with joint inflamation. I was prescribed Plaquenal. I had to start this medication slowly, half dose for one week, then full tablet for 3 months. After a few weeks, I really noticed the difference, and can now manage a full day, as long as I don't forget a tablet. I'm told however, that I need to come off the tablets for a while, and I'm coming to that stage soon but I'm not looking forward to that as I really don't cope very well while fatigued.

I too had an appointment with a Rheumatologist but was advised correctly that an immunologist is better for my condition. There is also the question of being screened for the development of leukaemia, which an immunologist is better qualified to check for. I did however also get a steroid injection into my knee joint which was badly sprained and would not heal and after 4 weeks I opted for the injection which worked like magic after a few days. I was referred to a knee surgeon who gave me the injection into my knee joint.

I hope this is of some help to you.

Roswitha.

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Hi there , i had severe fatigue before i was diagnosed with primary sjogrens and could hsve spent days in bed as could hardly function. I was started on Hydroxychloroquine to begin with which help a little bit but my lymph nodes were still extremely enlarged so i was recommended for rituximab infusions which did take a number of months to work but i now have alot more energy, lymph nodes reduced and pain reduced . It is not the right treatment for everyone but has helped me . In the meantime I would suggest you break up your activity into small pieces so you can take breaks to rest , it is frustrating but may help as alot of activity can wipe you out for days. I really hope you get a diagnosis and get started on treatment as fatigue is very debilitating and hard for family to understand , best wishes 🌸🌸🌸🌸

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Hi there. I was diagnosed with primary Sjögren's by 100% positive lip biopsy last year. I'm on the highest dose of an immunesuppressant called Mycophenolate for my neurological symptoms. I don't know if it's working at all to be honest but am staying on it because I've tried everything else they can offer me now. My rheumatolgist explained to me last week that the awful fatigue specific to Sjögren's is due to high levels of inflammation 24/7 due to high levels of IgG antibodies in our blood. This means we are battling inflammation round the clock and have nothing left in reserve at all often. I think I also have sleep problems though - possible sleep apnoea - do that doesn't help. This symptom has progressed more than the others have for me. I am also hypothyroid and was previously diagnosed and treated for RA.

This is now thought to have been a misdiagnosis though. Best of luck with your forthcoming appointment.

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I hope you have a good rheumatologist who runs comprehensive blood tests and you get some help. Fatigue was one of the many symptoms which led to me being referred to an endocrinologist, who then referred me. By then it was clear I had v low blood pressure and chronic anaemia , which after 2 years of tracking/ diagnosis, has now been identified as a character of my sjorgens. Have you had a basic full blood count done? At least it can rule out certain factors. I am now a year down the line of taking hydroxychloquine, which I have had to gradually build up the dose, due to stomach issues. A year on it has helped my fatigue and a number of other problems. It is not a solution , but it has improved it.

My rheumatologist recommended B100 vitamins ( a mix of b fits, with big amount of B6) . Solar are good , as are Holland and Barrat slow release version. I also combine this with a big daily dose of vit C. It may be worth a try for you. I noticed a big difference after 3 days, I was pretty sceptical about giving it a go, but glad I did. it may give you a boost prior to getting diagnosis / treatment.

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The rheumatologist couldn't really do very much yet, he needed to take lots of blood tests. He did take a full look at me and noticed my hands were cold and took a closer look at them using a device and some oily solution. Joints and muscles were not painful to move and I could move them easily. I'm not sure if he diagnosed me with raynauds...at least he didn't tell me, but he did write "Fatigue, Ranyauds, weight loss" on the document with marked blood tests that I needed to give to the nurse. I'll have to wait 3 months till next appointment. I've been thinking about taking b vitamins and folate, so I think it's a good idea. Maybe I'll also include vitamin C, thanks : )

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Fatigue can be a killer almost literally! I have found dietary changes help alot. Not a cure at all but make enough of a difference. I don't eat dairy or gluten and follow a low carbohydrate diet. So no bread, mainly meat & leafy veg. Cutting out refined sugar helps loads too. Takes a bit of getting used to as usual diet is very carb heavy!

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