Question

[trector1955]

Hello
    I am pretty new to Sjogrens, I also have Fibermyalgia. I take Cymbulta for my pain for Fibermyalgia and it works pretty good.  The worst problem I have now is being so tired all the time. Today was a bad day. I felt so nauseous all day. and tired too. Laid on the couch all day. I do sleep alot I don't work and I usually sleep until 10:00 sometimes later. I also take a nap. I can't sleep at night.so thats why I sleep in in the morning. My family thinks I sleep too much. They say its really bad. I do get some stuff done somedays.  Does any one else sleep like this? I use to have energy and get so much done. Now its hard to clean. My eyes have been a little better the last couple of days I don't know if its the re staystis or the meds I am taking. But I am not to question why just be Thankful. The Dr. plugged my top tear ducks a while ago. maybe thats it but I don't think so. we will see at my next appt with the eye Dr. I am differently going to have my Vitamin d level checked. But the sleeping has me worried. I know I am subposed to be tired but everyone says I should get up any way. forget about being tired. It is so hard all I want to do is sleep I don't even want to go any where anymore. I used to love to go shopping. The SS is going to call me at 12 tomorrow to put in a claim for disability. Wish me luck. I really need this. We are so broke since I can't work. I am so tired of being sick I have been sick my whole like. but its getting worst. before I would still get stuff done. but now is terrable. I also am just venting here thanks for listening to me it makes me feel better.  I am waiting for the lady in the Dr's. office to get me my records. for my test I took for my ADD. That alone should get me my disability!!!!!
I really have ADD pretty bad and had several learning disabilities. Last night was the first time that my mouth was so dry I could hardly talk it was so weird. I do st-udder alot but last night was different. weird feeling. well thanks for listening to me. I am so glade I have people who listen and believe me. My Mom is like the only one to understand. but I don't like to tell her everything. I have a sister who is sick all the time. I feel so much for her. my other sisters think is is a nut. everything is made up.
Theresa

[Scottietottie]

Hi Theresa 

Being tired all the time is part and parcel of having Sjogren's. In fact it seems to go along with quite a few autoimmune conditions. It's also a symptom of fibromyalgia I believe.  I don't find your description of when you sleep weird at all. It all sounds very familiar.  Your family thinking you sleep too much seems really familiar as well - and I'm sure will resonate with many!!

Has your Doctor put you on Plaquenil? I found that it helped the fatigue levels quite a bit. Good luck tomorrow.

Take care - Scottie 

[lynnmarie219]

Hi Theresa!

Vent away if it makes you feel better.....thats what this place is all about and we have all done it from time to time. I know it has helped me to get things off of my chest here when I needed to so don't worry about it......you can feel comfortable here!

Good luck on getting your disability and working through that process. I hope it goes fairly easy for you!

Let us know how its going for you! 

[Pooh]

Hi Theresa,
Please don't feel guilty about venting.  You go right ahead and vent all you want.  That's what this forum is all about. 

And NO you are not nuts because you sleep so much.  The overwhelming fatigue is something only those of us who experience it can understand.  Yes, the fibro will add to it.  My daughter goes through spells where she sleeps for days on end.  She only gets up to take another med or go to the bathroom.  She has fibro also, plus lots of other problems, but the fatigue and joint and muscle pain are the worst. 

The one med that has helped her a great deal is Lyrica.  I don't think she could function without it. 

I hope you find something to help you and good luck with the disability.  Let us know how you do with it.

Hugs, Pooh

[mquijada]

Theresa,
You are not alone! I too have SjS and Fibro. The sleeping is part and parcel to both. I would ditto the Lyrica plug. I have been on it for over a year and am so thankful to get some semblance of a normal life back. So far the only really bad side effect has been weight gain.
I know this sounds completely counter-intuitive, but exercise really does help. For me it has helped with my sleeping habits. Days that I exercise in the morning or afternoon, I sleep soundly through the night. I admit I fought my rheumy on this because I didn't feel good enough to exercise. Now I am a believer! I can't do what I did before, but even a quick 5 minute walk can help on some days. My new rule of thumb is, if I feel like I need a nap, I probably need a bike ride or workout session on my WiiFit.
I know you are probably thinking, this lady is nuts. I feel like crud and I don't want to exercise. I felt the same way when I read the advice in books and fibro boards. Just start small*, don't overdo it and you will be amazed.
*Starting small means 3-5 minutes a day, not 1/2 hour like normal people can do.
Q

Oh, yeah, don't forget, no exercise before bedtime. Revvs you up too much and makes the insomnia worse.

[irish]

Theresa, I ddon't know what kind of medications you are on. The one thing is that people with chronic illness and autoimmune disease are prone to depression. Sometimes people with depression will have a hard time sleeping at night and then feel the need to sleep during the day. Worth checking with your doc about this.

Also, people with autoimmune disease frequently need to have sleep studies done to see what is going on to cause them to be so tired. Many times people need to have the CPAP machine that helps them breath better at night. When they breath better they sleep better and feel more rested.

Talk with your doctor about these issues. It may be that a medication like Cylert or Ritalin will give you more energy and help you to stay awake during the day and get you back on a regular sleep schedule.There are so many reasons for all this upset in our schedules. I don't sleep well at night and haven't for 8 years and I can't sleep during the day so I am just wiped out also much of the time. I had a sleep study and will be starting a CPAP next week so should be interesting. Let us know how things turn out.

Tell your family that it takes time to get all these things sorted out when a person has these darn diseases. Irish