Does any one else find that their most troublesome symptom is fatigue?

[timmysmom]

I have been recently diagnosed with ss but have been having problems for a number of years now. I get intermitant joint pain, I've had bouts of dry eyes & mouth but they've never lasted too long, I recently have been having a dry cough but I can cope with all these problems. The problem that never goes away is the fatigue, I can only work part time & even that's a stuggle. I have to sleep and rest a lot. Is this usual with ss? ..

[qazx]

Yes, my most troublesome symptom is also fatigue.

[Tally in reply to qazx]

The fatigue is the hidden symptom to the world but it does not hide from us and to me personally very debilating no meds have given any relief and of course the concentration is woeful.Have had SS for 8 years and hope you find some relief ..take care

[DJEUSA]

Timmysmom - it seems and has been my experience that fatigue is a hallmark of most autoimmune problems. I started much the same as you are doing 20 years ago. At one I slept 16 to 18 hours at the worst part of my ILLness and I was previously sleeping 6 to 7 hours a night. Your body is dealing with the symptoms occurring and gets rundown quicker ( in my opinion ) and then requires more sleep to recover. The aches and pains come and go - weather affected I think and every part of you life affects also - what you eat, allergies started for me, stress loads take their toll also. The dryness of mouth and eyes is a constant for me and I use Restatis eye drops ( RX ) and over the counter Biotene mouth gel and toothpaste to help. Plaquenil is used often to help the fatigue level and pacing yourself and prioritizing can help also. NSAIDS or Cortisol ( prednisone - RX ) helps the joint discomfort in flares that come and go. I also became Photosensitive to the sun and Florescent lights and require sunblock outside and to go to a store. Photosensitivity comes with Sjogrens in some patients - royal pain dealing with it. I also have Fibromayalgia, Raynauds OA and RA which is controlled in a study drug with Pfizer labs for almost 5 years now which has benefitted me so much. The drug is called Xeljanz and is FDA approved in the USA in 1/2 the dose I take for the study. It is available in the pharmacies now for 5 Mg. Twice a day. I take 10 Mg twice daily. Take your time figuring what works for you - trail and error seems to be part of the bigger picture. Some times the meds work for some but not everyone or in some cases the meds work for awhile and then don't as the body gets used to them and then changes have to be made. Take Care of you - rest - listen to your body - find time to relax - use sunblock outside – go to see a rheumatologist and ask questions. I hope you feel better soon - Diane

[Tally in reply to DJEUSA]

diane I normally do not comment but thank you for the above you have written nearly all the associated issues that go with autoimmune diseases...again thank you so much as sometimes I think I am going insane and must be imaging all that is happening and feeling thanks Tally

[Tally in reply to DJEUSA]

Worded so well and sounds so familiar thank you

[granny08]

Hi, thanks for your post. Each day is different for me. I am photosensitive to fluro lights and the sun I carnt believe how many places I go to that has fluros, leaving me no option but to leave as the heat I feel on my skin is horrible. I am more or less stuck at home especially through the heat and usually only go out at night. I have given up working , driving, reading, limited time on the computer and my independence has just about disappeared. I have panic attacks if I am in a situation that makes me hot and uncomfortable as my body's themostat is faulty. My biggest problem though is my dry eyes and mouth I use celluvisc eye drops which has no preservatives as I react with anything that has preservatives and biotene products including the mouth spray. I am on predisolone, plaqenil, polocarpine, iron, vitamin d , methotrexate and panadol osteo ease, and just this week I have had my blood pressure tablets doubled in strength doctor explained that one of my tablets was causing me to hold on to fluid which increases my bp. Then there is sleepless nights , too hot, too achey or any number of things. Fatigue like I have ever known and aching joints that I didn't even know I had , I hope this doesn't sound too whingy but somedays are worse than others and guess which one this is. This site makes me feel normal.

[DJEUSA in reply to granny08]

I have been saying that body thermostat is broken for years now. I have not figured out if the heat or cold triggers it and the many fluctuations I feel and yet my temperature is the same - low at 97.6 and yet I feel cold or hot on and off. forever putting my socks on and off to keep up with the chilled or over heated situation I am experiencing. I thought it was Raynauds causing it as when I flare I go chilled first and then over heated

Feeling. It is so frustrating and annoying - I ask the Rheumy about it and he mentioned maybe Vasovagal systems - something to do with dilation or constriction of capillaries and veins - looked it up and I can not understand what they are saying exactly - was too technical read for me. Diane

[Tally in reply to granny08]

Has your doctors given any suggestions for the photsensitive as I like you find it terrifying and yet no one as yet has acknowledged that is associated with SS thank you not feeling so alone now

[Beverly]

I take a whole food supplement from the USA called Laminine and I use a Zen Chi relaxerciser machine I don't know what country you are in but the Zen Chi can be bought from the shop on my website sjogrens.org.au and as I became a distributor for Laminine I can order it for you, I can do things now that i didn't have the energy to do before.

[Tally]

Sadly the fatigue is debilating and have had SS for close on 8 years and at times the fatigue is there from morning till night and my specialist recently decided to try me on the lowest dose of Lyrica 25mg in the evening and yes I do sleep a lot better and find am getting through the day far better than previously.do not get me wrong the fatigue ios still still but to a lesser degree.When Fibromyalgia flares and pain is simply awful the fatigue foe me is then far worse and like you now only able to work casual so it really does affect all we do in far too many ways.Hope that helps and to know you are not alone ...take care

[Tally]

Sadly I too find the fatigue totally debilitating and wish there was a little bit of reprieve .I hope one day there may be. Good luck with your daily routine it becomes hard at times. Care and empathy to you.

[Froogle]

Hi - having had Sjögren's for around 40 years I would say that this is par for the course. It's one of the major symptoms of the disease and probably the most life changing. It's also, strangely, the one that most medics are least aware of and seem least interested in - in my experience. I've learned over the years to pace myself, but that is easier said than done! I've also learned to prioritise and 'trade' - for example 'if I want to go to beach with the family tomorrow I shouldn't try to make tonight's meeting' etc. Hope this helps.

[SusieW2]

Wow! This post has been going for 5 years. I hope you all have found some bit of relief.

I'm repeating myself from previous posts but hope I can give these ideas and some hope to some of you.

I went to a Naturopath about 16 months ago. To address fatigue and poor sleep (and bone loss), he gave me a Rx for low dose of Testosterone and a low dose of a thyroid medication. I was just a bit low on Thyroid hormone and my GP and Rhuematologist would not prescribe it. He believes that nobody should have low thyroid. He also told me to take more Vitamin D even though I wasn't low in this. My sleep improved right away and fatigue became only occasional and not so dramatic.

I'm waiting for my next bone scan to see if loss have been slowed down. I hope you can get access to try some of this. Take the Vit D anyway if you aren't already. I also have some things to try for sluggish sinus drainage and post nasal drip which can interfere with my sleep. Good luck!