What is going on with this?

[DesignerS]

Hi everyone.
Just wanted to get some opinions on all of this.  I was diagnosed 5 months ago with sjogrens, psoriatic arthritis, have Raynauds, sleep apnea, and asthma.  The reason I say this is because I am so confused as to which one is causing what problems.
But right now, I cannot sleep more than 1 1/2 to 2 hours each night.  That's it.  I am exhausted and losing my sanity.  My mouth is really bad, taste wise, and dry.  Eating is more of a chore since everything is bitter and salty.  I am sweating like crazy.  I am drenched when everyone else is freezing.
I am already through menopause, but still taking a bit of bioidentical hormones, so shouldn't be from that.  Also having a lot of trouble breathing.  It "feels" like my lungs are made of cardboard.  Any advice??

Designer

[Linda196]

Designer, are you taking any medication for SjS? Sometimes the treatments can be as annoying as the disease, but the good news is, most of the time any mild medication side effects mellow out with continued use. Prednisone or other steroids are known to cause sleep disturbances, but with autoimmune bodies, just about any drug can cause any side effect!

The bitter salty taste is quite common...there's no saliva diluting any other oral secretions or sensations, so salt and bitter show up quite regularly. If you can find it, enzyme toothpaste, like Biotene can help, but it's pricey. Sometimes rinsing the mouth with hot water and mint before eating will lessen the sensation. I've wondered if using OTC digestive enzymes as a rinse, instead of swallowing, would make any difference, but I'd hold off on trying that without information from a nutritionist, pharmacist or doctor who understands the enzymatic action...ones meant for digestion in the stomach might be too harsh for the mouth.

If all else fails, the sensors for bitter and salty are in specific areas of the tongue...bitter is center back or base, salty is along the edges, just back from the tip and at the base; maybe giving those areas a good brush before eating and then trying to keep food in the center near the front will avoid stimulating them.

As for the sweating...many of us have that, too, and so far, few of us if any have found a cause or solution.

The stiff lungs should be assessed by your doctor...people with SjS can have "infiltrates" in the lungs that don't have the usual wheezes and whistles, because those sounds are caused by secretions, and we just don't have them, so it's possible to have some lung problem that might only show up on x-ray. Please see your doctor and let us know if there's any improvement.

[Pooh]

There isn't much I can add to what Linda has already told you, except for me the sweating will lessen.  I use to sweat extremely bad, with water just running off the ends of hair, down my neck and chest.  I still sweat a little but not as bad. 

I think you will find that with Sjogren's, just about every system in your body goes haywire at one time or another.  I wish I could help you more, but just chalk it up to another gift from Sjogren's.

Pooh

[Scottietottie]

Hi designer 

I was wondering about medications also. I have a lot of trouble getting to sleep but was also getting nerve pain up the back of my neck to the base of my skull. The Dr gave me a low dose of amitriptyline which seemed to help both a bit. Getting to sleep can still be problematic but I'm staying asleep for longer.

When I was going through menopause I was waking really frequently with hot sweats.Thankfully I'm through that now. I never took HRT because I wanted to get one lot of symptoms out of the way. It wasn't fun but I've got there.

What does your doc say about the inability to sleep? There may be something that could help.

Take care - Scottie 

[pudmott]

Designer

I second,third and fourth everything that as been said


Pud

[DesignerS]

Thanks so much everyone for your input.  As far as medications, I am not taking anything for SJS.  I do take many inhalers for asthma right before bed, but that is nothing new.
It sounds like I should at least have my lungs checked out.  You all seem so familiar with these symptoms.     What a strange disease.  Something that who ever heard of before getting it   Take care everyone and thank you so much for the support.

Designer

[irish]

Designer, The inability to sleep is part of the autoimmune disease. For some reason we just don't sleep like we used to. I went through the period of the 2-3 hours of sleep and it was awful as I was still working. I take antidepressants and instead of taking a sleeping pill I was put on another dose of antidepressant for the insomnia and to help the restless legs which is another story.

If you are taking your inhalers at night just before bed and have just recently started them you might find that a couple of them make you a little wired. Usually this subsides in time. If you have sleep apnea I would assume that you have a CPAP.

I have had such a time with insomnia that I slept in my recliner for much of the time over the past 5 years. For some reason I always slept better in my chair. If I find I can't sleep I go to the chair, turn on the TV to a very low key program such as the home channel, etc and just wait it out. I usually fall asleep before I get a chance to turn down the TV.

The lungs are affected much of the time in sjogrens and need monitoring. The latest treatment for sjogrens is Plaquenil which docs are starting much earlier. This has been known to help the aches and pains and slow the inflammatory damage to the body. The lungs are found to be helped by this drug also per some docs. I would push to get started on this. They usually put you on Prednisone to help with the inflammatory issues at the same time as the Plaquenil. The plaquenil takes many months to kick in and when it does the Prednisone is tapered off.

Hopefully you can get things adjusted and find some relief. I would make sure to get the insomnia treated as soon as possible. Sleep deprivation is very hard on our bodies. Ask about a low dose antidepressant at bedtime for sleep. This can be taken long term much better than the sleeping pills. Good luck Irish

[DesignerS]

Irish,
Thank you for all of the good information.  I need to call my rheum. dr. and have a talk with him.  If I can slow anything down, I would like to be working on it.  Yes, I am on a cpap.  I completely understand about the recliner.  In fact, I just got up from it    I also find it is the only place that I can get any rest at all.  It makes you wonder why we aren't more comfortable in our beds, but you do what works.  Thanks again.

Designer