Utterly Exhausted - Need Help

[Trooper]

I'm new to this forum and have read through a lot threads so far.  I have sjogren's, and mixed connective tissue and/or seronegative spondylarthopathy depending who you ask.  I am 44 and have been sick since I was 28.  The last two years have been the worst.

The worst side effect that I experience is utter exhaustion.  Not tired.  Not sleepy.  But utterly exhausted.  I feel like it takes too much energy to breath.  I now only have about 1 good day a week and then I spend the next 3-4 days in bed sleeping 18 hours a day.  The remaining 3-4 days I'm able to maybe run an errand or two but that's it.  Nobody seems to understand.

My rheumy does not think this is "normal" but offers no suggestions and my friends/family think I should start exercising.  They don't understand.  If I walk around the block today, I'll be in bed for 3 days.  I try to just conserve my energy by doing nothing.  It's miserable.

Does anyone else suffer from this type of exhaustion and what do you do?  I'm on a low dose (7.5) of prednisone and we are appealing our insurance company's denial for Humara.  Is the exhaustion from a flare?  Should I try to do a higher dose of prednisone for a while?  Do you think Humara will help?  I'm at the point where I will try anything.

I appreciate any responses.  Thank you.
(I just reread my post and it sounds awfully sad.  I'm usually pretty positive but this exhaustion thing is killing me.)

[cccourt1942]

Hi!  I am not a doctor, nor do I play one on this forum.  From what you are describing it sound more like Chronic Fatigue Syndrome (CFS).  I am not familiar with all the conditions which attach themselves to SjS..I know there are a lot.  I had to look up the Sponydl-long word...and wow.  If your mucous and saliva are compromised..along with your joints and synovial fluid....I don't see how you are able to stand.  The CFS causes people to never be rested..no matter how much time in bed.  The most I know about CFS is from these boards.  Google Laura Hillenbrand (the author) to see how this condition has altered her life immeasurably.  You will also see she is quite a productive member of society.   Hers is an inspiring story for all of us who hurt all the time.

Again..I am not saying this can't be from your two diagnosed conditions...I am NOT a doctor.  It just hit me in the face that you are suffering CFS.  With all our conditions, it's hard for doctors to consider one more thing. 

This is just my 2 cents.  In fact, the entire post is "thinking out loud" more than saying what is wrong with you.  Have you ever consulted a pain management dr?  I understand they are quite good at differentiating.

Good luck dear..and have as good a day as you can.   

[MarieB]

I just want to say hello and welcome!   

I'm fairly new and not well informed but many others here are and are very helpful.

I will say that you described my life perfectly.  I felt good this morning for some reason so made a Wal-Mart run.  Got home and can't finish putting up the purchases.  I'm worried someone will have to take me to town Friday to keep a cat scan appointment because I'm not sure I can drive myself. 

Don't mean to take over your post -- just want to say I'm having the exact same exhaustion. 

Take care. 

Marie

[Trooper]

CCCourt1942 -- thanks for your reply.  I've thought about CFS but I don't meet all of the tests.  I have chronic fatigue but don't seem to have the syndrome because I don't have the other symptoms like swollen glands, sore throat, headaches -- BUT I definitely have the exhaustion after very little exertion.  I'll do some more research on CFS and maybe I can find something that helps. 

MarieB -- Thanks for letting me know you're in the same boat.  I'm sorry you feel the same way but I feel a little bit better knowing that other people are out there feeling the same way.  It looks like you are newly diagnosed so hopefully some medication will do the trick for you.  I have found that changing my diet to a lot of fruits and veggies has made a bit of a difference.  I also do not go out in the heat.  Best of luck with the CT scan on Friday.   

[brooks1teacher]

Fatigue has been terrible for more for the majority of the past 10 years.  I take Provigil for it to keep me working.  It is generally a med for narcolepsy.

You may want to look into it and see if your doctor would try it.

Best,
B

[shea]

I feel like I could have written your post myself.  Hope you get answers soon.  I'm scheduled at the end of August to meet with another rheumy at my current rheumy's office that also specializes in immunology, so I'm hoping to use it at a second opinion as well.  I just am drained waiting to feel better.

[Carolina]

The THREE major symptoms of the inflammation of autoimmune/immune mediated conditions are:

PROFOUND FATIGUE.

PAIN.

DEPRESSION.

I cannot advise you about medications.  I can tell you what works for me.  Fatigue is probably the hardest of all the symptoms to deal with because there are few direct medications.

Some people do take stimulants prescribed by their doctors in order to meet the challenges of very demanding jobs while dealing with autoimmune/immune mediated conditions.

Others find help from Plaquenil and Methotrexate which suppress the immune system, and with Prednisone which counters the inflammation of immune system attacks on our bodies.

These are ways to counter fatigue by reducing the attacks and resulting inflammation that produces fatigue.

You are not depressed just because you are fatigued.  That may be part of it, but also the same inflammation that causes your fatigue is causing your depression.

Cymbalta and other antidepressants are very effective both with depression and with pain.

Please keep positing, Utterly Exhausted.  We are here for you.

Hugs,  Elaine

[Helene]

I have the same symptoms too. For years I thought it was CFIDS, but then I was diagnosed with SS. I have one or both and now I have an immune deficiency. The exhaustion is real and like no other kind of tiredness. You are so tired, it hurts. Resting barely helps. Overdoing is disastrous. It is a bit cyclical so sometimes it's better than others.

[warmwaters]

You are not alone. Whether it's Sjogren's or some other aspect of your health, I'm in no position to figure out, but I have Sjogren's and axial spondlyarthritis, and there are days where I'm delighted that I got up, put on on clothes and brushed my hair and teeth.

Not always, but there are days when I get up around 9, watch some TV for an hour or two, have lunch, go back to bed for the afternoon, and get up when my family gets home at 6 as groggy can groggy can be.

And when I'm in phase like that, a small thing like taking a 15 minute gentle walk can wipe me out for days.

I had problems when I reported to PT for my back that doing the exercises put me in bed for 2-3 days. They didn't believe me. But it's true.

Possible approaches - stimulants which will give you a buzz/keep you awake.  For me, it's a fake energy, and when I come off I'm even worse. But they do help some. Prednisone at higher dose. Sometimes you can take a high dose for a relatively short period of time (like a week), and it will help break the cycle. Immuosuppressants to tamp down the inflammation.

My rheumy, who treats a lot of Sjoggies, says it's a pattern that she sees with some frequency.

You need to talk with your rheumy to see what options might make sense for you.

[finallyadx]

Trooper - so very sorry to hear that you are so very exhausted...I can relate though.  Before being diagnosed with sjogrens (going through testing, drs, etc.), I would lay on my couch day after day and fall asleep.  It was a struggle to stay awake during the day and then at night I was sleepy as well - it was a horrible thing for me.  I have anemia as well and low vitamin d which can affect your energy level as well. 

I started plaquenil after being diagnosed and I have to say within 6 months of being on it, iron supplements for my anemia and vitamin d, my fatigue lessened dramatically.  What I will say though is when I am in a flare my crushing fatigue comes back with vengence and can stay anywhere from a week to a month at a time. 

Have you had your iron levels checked?  Vitamin d?  Your B vitamins?  Do you take plaquenil? 

Prednisone made me have high levels of energy at times but also helped me to sleep better at night (I know not what most folks encounter with this). 

I am not a dr and cannot say what is going on with you, only offer my personal experiences.

It certainly would not hurt to have more bloodwork drawn to check for any deficiencies that can be fixed or at least lighten your symptoms some if treated.

Please keep us posted.

Fatigue/exhaustion is a horrible thing.

I do not take any of the stimulants currently but I do know some folks on the board do and have good results with them.

Sending positive thoughts your way.

[susanep]

I read what you said about it feeling too hard or took too much energy to breath, because he has heard me say this many times. I do understand, because I feel like life is passing me by just, because of not able to do much. Sometimes I feel like I am dying from the inside out.

I do hope you find something that helps. At first provigal seemed to help me a bit, but not now and I am on a double dose of it.

The people around me say the same thing, "do you exercise?" I was ask that last night, and my answer was if and when I can I do, but I am not able to do much.

That same person ask if I was ok, and this person just lost her husband who is my cousin. She ask this, because she said I sound like a person about to give up. I told her it is probably the way I sound due to lack of energy. No one understands.

I have given up on family etc. except for people here to understand. If I didn't have this, maybe I wouldn't be able to understand either if I was full of energy.

Hang in there. You will have better days, but much simpler.

susanep

[Jenny1960]

I just want to suggest that you try going gluten free (if you haven't already); that and taking Turmeric are the 2 things that have made the biggest difference to me.

Wishing everyone the best day they can have.
Jenny.

[aussie mum]

I'm sorry to see that you are feeling so unwell.

It might be worth getting a 2nd opinion. Surely there is something the Doctors can do to help you through this horrible time.
Also, please ask the Dr to check your Thyroid levels.

Hope you feel better soon

Aussie Mum

[Thea]

I didn't not realize how extremely fatigued I was until I recently started to get some relief. I used to have to sit down a few times just washing the dishes! I couldn't do a "big" grocery shopping in the city because I was too tired to push the cart for more than a few minutes.

Hydroxychloroquine helped me somewhat. What seems (at least the moment) to be REALLY helping me is accupuncture. I haven't even had to lie down in the afternoons for the past week. Not a normal level of energy, but so much better.

Rheumy says the fatigue could be from any of the auto-immune things I have going on. He's pretty good because he says getting to the bottom of "why" isn't always possible, but finding something to help often is.

[Trooper]

Wow!  I can't thank all of you enough for your responses.  I hate that others are suffering but it definitely makes me feel like I'm not alone and that in itself makes me a little less tired .  To answer some questions -- I can't take the stimulants because of a heart issue.  My blood work is always low on vitamin D.  I've been lazy about taking supplements but I didn't know vitamin D could affect the fatigue so I will start on those.  Also, I've heard of turmeric and can start that.  I am gluten free and that has helped a bit. 

I really appreciate everyone's responses!  If anyone else has any ideas, let me know.