How do I deal with Extreme debilitating fatigue?

[WK1010]

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?

[Xxxxxxx]

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

[Roswitha]

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.

[weathervane]

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 🌸🌸🌸🌸

[Hidden]

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.

[25clai]

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.

[WK1010 in reply to 25clai]

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 : )

[Aquamarine88 in reply to WK1010]

just make sure you don't have MTHFR gene as then you'll need particular B's and methylfolate !

with this genetic 'bump' i cant absorb B and folate so the body doesnt repair that well and more likely to have autoimmune yep thats whats happened

[Jaydee1507]

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!

[Nousernames]

I would love to be able to answer this.

I have had Sjogrens syndrome and RA for years.

Four years ago my son started having episodes of fatigue, but only when he did something physical.

He now has fatigue so bad, he cannot drive or do much without help.

He researched and diagnosed himself, but we can't find a doctor.

The few online that list chronic fatigue syndrome as part of their practice don't know me anything about it.

He found out when he started calling to make an appointment.

I have really bad fatigue, but his is different. He literally has to lay down and is unable to even lift his head up.

He also has all over body pain.

Like fibromyalgia.

Between both of us we haven't found anything that helps the fatigue.

I have found that when my joints are swollen more than usual (what is called a flare), if I get a steroid injection, it helps more than anything.

I spend a lot of time online searching for information on chronic fatigue.

I have a hard time knowing my son is suffering, so I assure you that I will do my best to get any information I can..

I am thinking about contacting the AMA to ask what is being done to research this horrible disease.

I will keep you in my prayers and thoughts and will pass on everything I can.

[SamTheTurtle]

I was diagnosed with Sjögrens about 4 years ago in Canada. I have the blood markers but very minimal signs otherwise.

I wear prescription glasses for everything except sleeping. My eyes are not that dry because my glasses shield my eyes. I have been diagnosed with dry ARMD and the herbs and vites supplements that I take, the antioxidants, have kept that at bay and actually improved my eyesight per my opthamalogist.

Occasionally, my saliva glands ache but that is infrequent.

I have minimal dryness of my mouth. I stopped smoking 11+ years ago and I still chew gum (non-nicotine). That helps keep my mouth moist. I have said goodbye to many of my teeth however, absolutely no pain, but the teeth deteriorated at the gum line. I brush my teeth and mouth for the last couple of years with Aloe Vera - it kills the staph that causes tooth decay, no more infected teeth.

I used to have issues with recurrent sinus infections (that also caused my teeth infections). I use turmeric with black pepper supplements and that has stopped the sinus infections, no more clogged sinuses. It also helps with the almost persistent headaches I was having.

The major issue for me was extreme fatigue. I do the herbs and vites routine and that helped curb the fatigue somewhat. Then I found using acetyl l-carnitine and beetroot powder supplements to help remarkably with the extreme fatigue. I can manage 4 out of 5 days with those without having to take a daytime nap.

Just recently, I discovered Magnesium Malate and have taken the recommended dosage for about 3 days. Now that has clearly helped with the fatigue. It also helps with the headaches, inflammation of my hands (osteoarthritis), any residual brain fog is gone. It also helps increase the amount of saliva, although I'm not drooling yet. I feel as if a heavy caul has been lifted off of me. I now can manage day after day without having to nap during the day. I actually feel alive. I live off the grid and I am dependant on myself to cut my own wood for heat and haul my own water - it is an active lifestyle.

Apparently, as I have read, about 75% of us are magnesium deficient and with any amount of digestive issues, we might not be absorbing the magnesium given by the food we eat.

The Magnesium Malate as a supplement is possibly worth a try. Check it out with your rheumy if you are interested in trying the supplements (to make sure that the supplements are not interfering with any meds you might be prescribed).

Best Wishes on Your Journey!