Weakness with Sjogrens

[heljell]

I have been diagnosed with sjogrens. I have had no treatment of any kind. I just want to know how to handle the sever weakness and fatigue, its so bad that it scares me.

[daph900]

I can relate wth so many of you.  I know I feel so alone sometimes.  Nobody, even my family can not understand how I feel.  I think it is because I look so normal on the outside.  The joint pain and the fatigue is just horrible.  Some days I really have to force myself out of bed.  I hate feeling that Way.  If I do have a rare occurrence and I have a good day, I really do not even want to go to bed that night,because I know the next day will more than likely not be a good one.  I very rarely have 2 good days together. I wish I could find a local support group.  I do not have a support group here in my area nor have there been any seminars around my area.  I will be praying for you all.  Maybe one day they will find a cure.

[mollyadelaide]

I just wanted to suggest maybe a second opinion is in order? I've been struggling with an autoimmune disease for too many years now. I just went to a new rheumatologist a few months ago who slapped the sjogren's label on and then ran bloodwork. Anyways I am waiting for my follow-up but the bloodwork seems to indicate limited scleroderma (which can also cause dry mouth, etc.).
I wanted to offer my sympathies to both of you on dealing with the fatigue and weakness and lack of understanding:( Especially when it's a doctor who really ought to know better than to brush it off on anxiety!
I hope you start feeling better and find the answers you need.

[heljell]

Well the man seems to think its just anxiety.

REALLY what a waste of time if he only knew I was a mental health nurse for 5 years

[Sjoggie]

I think that is the common lament of sjogren's.  You look good so people don't understand how you feel.

I'm glad you are seeing a neurologist.   Sjogren's can affect many different areas of the body.

I don't blame you for being grumpy.  It is very frustrating and of course stress is the enemy.

The Sjogren's Foundation has monthly newsletters and they also has seminars.  I think there is going to be one held in Virginia but I cannot remember when.

I hope you find some answers to help you soon.

[heljell]

Thanks for  you comment.

I have givin up on trying to find a doctor to help me, but with my last bout of symptoms which are mainly neuro related. Im getting back into the fight. I have fatigue and weakness that prevents me from doing much more than walking to the bathroom and for get making food, and just to scared to get in the shower. I have dizziness, very poor cordinations which makes walking difficult (look very drunk) hand tremors with fine motor skills, numbness tingling and the pins and needle feeling, feeling of cold water dropping on my hands, some times I stutter which is new. When every little bit of living is so tiring and so difficult I have become grumpy.

In my search for answers for me personally I have found that I need a nerologist to deal with my neuro symptoms and to ensure Im not having something more than just a sjogrens flare up.

I get where its scarey to plan anything, I never plan things because the odd that I will not be able to follow through is high, then adds that much more stress.

In my search I did find sjogrens support groups. None in my area but check it out. I feel isolated because no one seems to get how dibilitating it is at times. I can barely move but I dont look as bad as I feel. www.sjogrens.org/home

[Sjoggie]

Hi,  

I don't have a good answer for you except to talk with your Rheumy about this.  Mine told me sometimes they try plaquenil or prednisone.  Plaquenil take up to six months to find out if it is going to work and prednisone has its own set of problems, which is why you need to be working with a doc on this.

Maybe someone will come around with a good answer.  I have crashing fatigue that just seems to come out of nowhere and I never know when to expect it.  It really makes planning things impossible for me at times.

Wish I had the answer.  I'm looking too.

Good luck