Sjogren's fatigue or chronic fatigue syndrome or both?

[Tempname]

Hi guys,

I wonder does anyone else's Sjogren's fatigue make them feel physically sick (like you're coming down with the flu) after activity/ exercise? In my case I get sore throat, headache, muscle ache, foggy head, buzzy ears etc.

3 years ago I had glandular fever/mono, then due to the fatigue I was diagnosed with post-viral syndrome, then ME/CFS, and more recently Sjogrens. My Rheumatologist says I don't have ME/CFS and all my symptoms are due to Sjogrens.

However the defining symptom of ME/CFS is feeling sick after activity or post-exertional malaise (PEM). I still feel this is my main symptom, and has had a huge impact on my life. I need to pace very carefully and spend roughly 8 hours in bed everyday (on top of 10 hours sleep at night) or else I will feel truly awful, which means I've been off sick from work now for months. I'm in my mid 30s and largely house-bound at the moment, due to feeling so crappy.

I started on Plaquenil 6 weeks ago for SS and haven't noticed any improvements yet, but am hopeful that with time it might help.

My question is: does anyone else with SS get this type of fatigue? Is it normal for this condition too? In a way, you could say it doesn't matter, however the advice for Sjogrens is for graded exercise to increase energy, and the advice for ME/CFS is to avoid exercise if it worsens symptoms. So I've been playing it safe, with the assumption I have both conditions.

Thanks in advance for your help!

xxx

[Littlemisssunshine87]

Yes I do, it is all part of it and can be the worst symptom for some. CFS/ME have a whole bunch of symptoms that overlap with a lot of (if not all) autoimmune diseases. The fatigue and exercise intolerance came as one of my first symptoms. Similar to you I had shingles (wasn’t even that unwell with it just felt a bit tired) but then my health slowly declined over the next 18months. My eye symptoms didn’t become more apparent until later. That’s why it can take so long to get the correct diagnosis. I was on the road to receiving a CFS diagnosis when my dr did every test she could think off to rule everything else out. That’s when my ANA and SSA bloods came back positive and my dr had a light bulb moment and realised that a diagnosis of Sjögren’s made perfect sense. My background and degree is in exercise and health. I used to love going to the gym, pushing myself hard. Lifting weights, spin classes etc. I was fit when my fatigue kicked in it was like one day my legs just wouldn’t work the same, they became tired and heavy. I couldn’t finish my workout and it just got worse from there. I often feel flu like symptoms as well.

[Tempname in reply to Littlemisssunshine87]

Thanks for your comment, really helpful to hear your experience is similar to mine. Can I check, have you found anything helpful for fatigue? It seems from what I've read that it can be the hardest symptom to treat effectively.

[Littlemisssunshine87 in reply to Tempname]

Hydroxychloroquine has helped ever so slightly. I’ve only been on it just over 6months myself. I can clean my house without becoming sick and shaky on that, but if I push it too much I get big painful flares of all symptoms. However, I suffer so badly from my symptoms I’m unable to work but I have severe light sensitivity. Relaxation such as yoga and meditation have helped, and diet, i know people always say things like that but it’s true if I don’t do those things I feel even worse. I also find cbd oil quite helpful. Not quite sure what it does but if I don’t take it for a while I do notice a decline so it must be doing something.

[Tempname in reply to Littlemisssunshine87]

Yes I have found diet, relaxation, pacing etc helpful too. And fingers crossed the plaquenil will help me as well. Thanks so much for your help & advice.

[SusieW2]

Sorry to hear of your fatigue. I've not heard of this level in people with SS at least not at your age. I hope you can find another cause so that you can address it. I've had increasing fatigue as I've aged (68 years). I have found a great Naturopath (USA) who first said to increase my Vitamin D levels. It helped a lot. I have my Vit D levels checked annually.

I also tested a bit low in Thyroid hormone levels. While regular MDs would not prescribe supplements at my levels, he believes that people with hypothyroidism and fatigue should be treated. When I got my prescription, I started feeling more energetic within a few weeks.

The other treatment I get from him is Testosterone. This may be harder to get as it is so unusual. But after testing, my levels (yes, women have T levels) were low enough to get a prescription for a cream. Insurance does NOT pay for this. My muscles strength has been improved when it had been flagging.

These treatments don't treat Sjogren's Syndrome. I don't know what actually does, But I feel so much better. So they were worth fighting for. I also recommend probiotics and Omega supplements.

[Tempname in reply to SusieW2]

Thanks Susie for sharing your experience. I will look into those supplements etc. Glad your fatigue improved 😀

[NorthAtlantic]

Yes, exactly the same with exactly the same symptoms. I am always torn between the desire to get out for fresh air and a walk and extreme fatigue - it's difficult to know what to do for the best and very limiting but I have to say that I generally feel better once outside, even if I can't go as far as I would like.You are very lucky that you can sleep so long, this should help - my sleep has been poor for ages and this makes things worse.

I am not on Plaquenil so far but from what I gather, reactions are very diverse with some people feeling little or no benefit and others substantially better. Do be aware that you will need regular eye check-ups on this medication as it can harm your retina if taken for long stretches.

[Tempname in reply to NorthAtlantic]

Thanks NorthAtlantic. Sorry to hear you have this desperate type of fatigue too. Yes getting outside (even to sit in the garden) helps so much.

[MichelleHarris]

Hi Tempname, I would get a comprehensive private blood test done. I was told all was well for years by my GP’s and suffered a lot of poor health and found I was actually physically poorly x

[SusieW2]

I do have SS and have had it for many years. I do occasionally have nausea but not so severe symptoms. Sometimes it happens when doing yoga when my head is lower than my heart or after a big meal or a combo!

I'm convinced that exercise is crucial for those of us with autoimmune conditions. The trick is to find what works for you.

It's hard to determine the source of fatigue. Almost as hard to have a definitive diagnosis. But it is common with SS. My vitamin D and thyroid hormone levels were low and I was post menopausal when the fatigue got to me. After increasing those levels and getting an Rx for a low dose of testosterone, I'm feeling a lot better. I do take the recommended dose or 30% higher of Omega 3, 6, 9. It really helps dry eyes!

I think one thing to remember is to treat your symptoms and support those systems rather than to get stuck on the treatment of a diagnosis (except when necessary/critical).

Persevere!

😆

[Tempname in reply to SusieW2]

Thanks for the encouragement Susie, glad you found a combination that works for you.

[Cas70]

Get tested for Lupus ! I have both Sjogren’s and Lupus and suffer the same symptoms. Good luck

[Tempname in reply to Cas70]

Thanks Cas70. Good advice, next time I'm getting bloods I'll ask them to include the ones for lupus again.

[Di01]

Hi fatigue has been a major part of my life since dec 2020 bed bound for months but today i pushed myself even tho i'm leathered now took the first steps to do a bit of shopping which took loads of energy out of me yawning all morning then got home & decided to rest by sitting in my garden in a shaded area but when got up i felt really dizzy & head felt odd i need to sit down again wasnt out there long about hour i'm new to sj condition but could this be linked to that ?

[Tempname in reply to Di01]

Yes, it could well be linked to Sjogrens unfortunately. I know exactly what you mean about the dizzy feeling on standing. I find it really important after a flare up when I've been bed bound to increase upright posture GRADUALLY. So I will stay at home for a few days, and lie down every hour or so for 10 -30 mins. Your autonomic nervous system gets used to being horizontal and needs to be trained again how to adjust blood pressure for being vertical. I know its a pain to be so careful, but its worth it to avoid another crash.

[Di01 in reply to Tempname]

Thank tempname I'm literally driving myself crazy with this condition i dont kno much about it tbh & i'm suffering with loads symptoms & i'm not even sure if there all interlinked plz tell me it gets better at some point feels like i've got several disorders how long u had this disorder & any advice on how to handle it ? Much appreciate ur fedback

[Tempname in reply to Di01]

Sorry to hear you're having a tough time with Sjogrens. I was diagnosed last Sept, but I've been sick for nearly 4 years since I had glandular fever. It actually felt like a huge relief to get diagnosed with SS, as finally a Rheumatologist was taking me seriously, and started me on Plaquenil. It took 5 months to work, but in the last month I've noticed an improvement in my energy levels & eyes, less dizzyness & feeling fluey etc. So fingers crossed things are finally looking up for me.

I found this video by Dr Elizabeth Price really helpful in learning how to manage my eyes and mouth better bssa.uk.net/live/news/news7.... And the Sjogrens Advocate blog sjogrensadvocate.com/ is written by a Dr with SS and she explains autonomic problems (dizzyness etc) really well.

Unfortunately a lot of Drs don't really understand SS and think its just dry eyes and dry mouth. But its really important to remember its a systemic illness that can effect other organs. I see you're wondering about chest pain below for example, you should get this checked out as SS can sometimes damage lungs or heart, so best not to take any chances.

Hope you get some answers soon xxx

[Di01 in reply to Tempname]

I just dont think its just sj with me been avin some hormone issues 2 im neva feeling well just feel like my full body is leathered wake up now not wanting to be here & that i dont feel nobody is listening even my hubs is getting fed up with me because ill all time & feeling like i can do this hard work feeling ya body is failing

[Tempname in reply to Di01]

Sorry you're feeling so low at the moment, that sounds really tough. If SS doesn't feel like the right diagnosis you should think about getting a second opinion from a different Dr. It's really important with all this to listen to your body. Hopefully you will find some answers that will help.

It seems like you're feeling low and you should also seek support for this. Maybe you could try an antidepressant or talk therapy to help with that? Lots of us on here have had major life changes as a result of illness, and we all react differently. But the one thing everyone needs is understand and support. We can't do it on our own xxx

[Di01 in reply to Tempname]

Tempname i'm beginning to think i aint strong enough to handle all these health issues atm suffering with two illnesses happy pills i call them bad tried a few times on them but omg they use to knock me straight out without having the fatigue holding out maybe i need a low dose as dr started me off on 100mg dont think my dr really cares tbh aaked him for test after test but he just denies me them, he tried telling me i ave fnd when it was sj 🙈its just all frustrating in no meds & still waiting on drs to pull his finger out!..hopefully i'l adjust at some point & life will get that bit easier glad i joined here because gives me the chance to get a few answers & a bit of valuable advice! Xxx

[Di01 in reply to Tempname]

Aw what a battle 4 yrs of being ill must of been very frustrating & i'm guess u was like need answers to why u was ill or what was happening really taking a lot on board makes u anxious but i'm glad u got there in the end & got a proper diagnosis i heard it takes some yrs to find out whats really going on with ya i hope thats not in my case the fatigued actually is a lot better the dizziness is getting more often need to find something decent to take for my dry mouth because in middle of the night feels tight i ended up waking up from sleep just to drink to soothe the back of my throat i have a spray & some sugar free sweets but last thing u want is to suck sweets half sleep 🤣 anyway take care hun & thanks for the advice much appreciate it xx

[Tempname in reply to Di01]

That all sounds so tough going for you. If you feel your Dr isn't taking you seriously then maybe think about changing Dr or even paying privately for a second opinion. The first Rheumatologist I went to was really dismissive & said I definitely didn't have SS, so I went to a different Rheumatologist who took me seriously and said he was 100% sure I did have SS! I was really glad I got the courage up to go to a second Dr, and the advice I got on here really helped. Hope you start to improve soon xxx

[Di01 in reply to Tempname]

Ano dr was like that with me in end told ent they look my symptoms on board dr still not done much had to buy all the stuff myself but my throat keeping that refreshed is a different issue alone i then lost sensation in my throat can swallow just couldnt feel it going down says that my brain tells me not to feel it i didnt understand him feel i've been fobbed off yet again 🙄 x

[Di01 in reply to Di01]

He actually rule it out due to because i could cry sometimes can i just ask if any one has been on anti depressants with sj condition ?

[Di01]

Other question related or none related 2 sj centre chest pains ?