Tired!

[Ark mom]

Autoimmunity, I took Wellbutrin and then Savella for a while and had great results for my fatigue.  It was gone!!!  I felt so energetic and could do anything.  Then I couldn't sleep well anymore, like you, only sleeping a few hours every night.  I had to give them up, too.   I might have to look into Nuvigil. 

[jazzlover]

Is there a good reason to stand up while you brush your teeth? I sit down whenever possible.
Sharon

Haha! I do too! I have a stool in my bathroom because my feet are so terribly painful. I have to sit in the shower too. Pathetic.

[Autoimmunity]

Is there a good reason to stand up while you brush your teeth? I sit down whenever possible.
Sharon

Is there a good reason to stand up ever?   

[Lesley_x]

irish I have told my rheumy about this pain which initially started in my back and has moved to a more generalised feeling all over my ribcage. Even right now if I breathe too hard it's painful. He did not seem phased by it at all.

I feel like a hypochondriac/nuisance and that's why I generally put off seeing doctors.

I needed a lot of help with my steroid dosing last summer/early this year (every time they tried to get me off them I would get sick again and would have to see rheumy again for adjustment of dose) and when I went to sjogren's clinic with my rheumy he said 'maybe you can stop bothering me' then backtracked and said he was joking and it was good I bothered him.

Made me feel like a total idiot, he made a major difference to my life and yet still seemed to view it as an inconvenience lol.

[ktfabian]

I've been going through a period of extreme fatigue, also.

I have lots I can blame it on:
hubby lost his job and we're both quite uptight about money;

my new family doctor wanted me to try to go off Lyrica for my fibromyalgia since I'm on Cymbalta. I was taking 100mg 3 x a day and as I weaned off, I was so tired and achey I could barely move. So I'm taking 75mg 2x a day and sort of getting by. I'll have to talk to my family dr. and pain dr. who prescribed it next week;

I just started working. I only work 2-1/2 - 3 hours on Sat. and Sunday doing demonstrations at Michael's, a craft store, but by Sunday night and Monday, I feel like I spent the weekend running back to back marathons;

My new insurance only allows 2 muscle relaxants on its formulary: Zanaflex, which causes me to hallucinate and have terrible nightmares, and Valium, which I'm using, which leaves me feeling hung over.

Allergies: We're having a very bad allergy season and the only medicine that works for me is Benedryl, which dries me out terribly and puts me to sleep.

And last but not least, I'm overdue for my second of 2 Rituxan infusions. I had the first one in January, then had to postpone the second because of surgery, illness and an insurance change. I'm waiting to find out if my doctor wants to go ahead and get a series of 2 now since I'm due for my next series next month.

So, for me, it could be any or all of these, but it's a really big effort to get myself up and moving just about every morning.

Off to take a nap,
Tracy

[Carolina]

Reading these posts about fatigue and the complexity of AI conditions has me nodding AND shaking my head.

Nodding because I recognize it all.   And I KNOW from experience, but now also from EXTENSIVE reading just how intertwined and complicated the AI conditions are. 

When my new Immune Deficiency was diagnosed in March, I went back to reading everything.  And believe me there is SO MUCH TO READ.

I shake my head at:

Such foolish doctors who think Sjogren's is "only dry eye and dry mouth", as if that weren't more than enough misery, but we would take it, if ONLY it were all.   

I have NEVER met a doctor who has had dry mouth, for example.  When you wake up 25 times a night with a mouth like sandpaper, or worse.  It doesn't even FEEL like your mouth.  Then there is the joy of taking a bite that you can't swallow.  AND the sores and pain, the hoarseness.  I could go on and on and on.

Such foolish doctors who think only tests count!   Tests are a small part of the diagnosis process.

Such foolish doctors who dismiss us because we're women!  Mostly women have Sjogren's (I know, guys get it too).  The vast majority are women 50+, just the group that doctors identify with their mothers, and NOT in a good way, trust me.

When you have one AI condition, you are open to the entire world of AI conditions and co-conditions, and honestly I think we're in the infancy of true understanding of the immune system.  Better than when people with Pernicious Anemia (AI condition) automatically died because Vitamin B 12 injections weren't available.  Now your life is SAVED with vitamin B.  Amazing.

We're Tired, hot, cold, numb, tingly, dizzy, we have difficulty with the entire gastro-intestinal system, and every system (pulmonary, neurological, urinary, skin, ears, eyes, skeletal, you name it) can be and often is attacked.   And we have pain, pain, pain, AND problems with our teeth that would break your heart!

Did I mention itchy!?  I have been treating myself with mega doses of Methyl Vitamin B-12 and my nerves are actually healing.  And you know what?  That hurts, tingles and burns AND itches!   

And I'm shaking my head, too!   I was so fortunate to get the really hard parts of these conditions at age 60.  I want to cry for 25 year olds with the full blown process already underway.  The mommies who have to manage jobs, families, homes and community AND autoimmune burdens.

Not everyone gets the full hand dealt, thank goodness!  Many do have dry mouth/dry eye and it stop there.   Others get treatments that really stop the progress of conditions like Rheumatoid Arthritis.  I have known very successful people with Lupus, in remission. 

We also have many medications, treatments, and coping skills that help us.

This forum is the BEST I've seen, by the way.  I've been looking at lots of them.  It's all right here, IMHO.

Because you know that Sjogren's part of a much larger picture, the members here offer so much to those fortunate enough to have found the forum.

Thanks to all of you!

Hugs

Elaine

[slccom]

Don't forget the foolish doctors (and family member and friends) who think that if you just get off the drugs you'll be fine!

Tracy, you should be able to get your doctor to get an exception for you from your insurance company. And don't be afraid to apply for any financial assistance you are entitled to, including for medications, food and put your money only towards a roof over your head, utilities and food. I bet there is a food bank in town, too. Use it! And when you get back on your feet, donate back.

Best to everyone, so hang in there, everyone!
Sharon

[SjoGirl]

Extreme fatigue was one of the first symptoms I experienced. As described by a healthcare professional who spoke with our SjS support group yesterday said, it's not the kind that sleep cures.

The following have helped me, though everyone is different:
Good sleep hygiene, including not watching action or violent TV movie/shows after 8 p.m. (or reading similar books)
Checking Vit D and B12 levels
Having iron checked (I learned I also have autoimmune anemia, hereditary) and now take multivitamin with iron
Eating a very clean diet, fruits, veggies, meat (with anemia I got have it), complex carbs like oatmeal, very little refined sugar or even honey
Exercise (I know we're tired, but exercise can help)
Pacing myself -- I tell my husband when I'm out of spoons (see Spoon Theory on line)
Plaquenil (now on generic version for four months, I'm starting to have a life again).

As the person who spoke yesterday said, topic was fatigue, cause can also be hormonal (particularly at your age they could be fluctuating a lot - might check to see if you are more tired at certain times in your cycle). Could be a need for other supplements.

I too am older and feel sorry for those affected at such a young age. God love you.

[4Kids]

Well said Elaine. *clapping*

Leslie you need to find a doctor you can trust enough to be honest with. They are out there.  I am hoping one crosses your path very soon.

I hope you find some relief soon.  Good luck to you.

[bdnews2]

I to have been having a really hard time with fatigue.  I am on ritalin to help fight it.  I take 5mg in the morning with an option to take 5mg more in the afternoon.  I try not to take the afternoon dose but lately I cant seem to get around it.  I am still working and trying hard not to fall asleep in front of my computer. Thats why he gave me the Ritalin.  I have my first appt with  a rheumy on June 12.  I do so hope she can help me with some answers and options.  I cant really afford the disability but I cant continue on like this either.  2 weeks out of the month, my job is physically demanding.  I had one of those days yesterday and didnt think I would make it home.  Thankfully, my husband understands most of this and isnt too fussy about his meals.  I am sure he will have some questions for the dr when we get there.  Does anyone have anymore suggestions in the meantime?  I still have about 3 weeks before i can see the rheumy.

[Lesley_x]

Thank you so much for all your replies It's reassuring to know I'm not alone!

Today I have managed to get up at 8 and be up for an hour then fall asleep on the couch again, and I was awoken by my dog walker coming in.

My fatigue really worries me. The guilt of not doing anything and sleeping all the time is horrible.