Pain getting to Me

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Regular Member

Date Joined Jun 2008
Total Posts : 59
   Posted 3/5/2018 8:10 AM (GMT -6)   
Morning all, wishing you all a wonderful ALMOST SPRING day!
I spent Saturday in the car and it was bright and today I will take it nice and easy.
It’s funny how quick it all comes back along with the realization of strict limits regarding sun through the next
I have been struggling through the winter too. Less sun but more dry heat and dehydration.
I have two other issues to join in with the lupus, addison’s disease and sjogrn’s syndrome.
They both contribute to severe dryness, dehydration and thus inflammation.
I have humidifiers throughout the house but it really doesn’t seem to help much.

When my moist tissues become dry my sinuses, throat, lungs and GI tract are just indescribable.
Sinus just dry and burning all the time so my face hurts and is rosey.
My lungs become dry and I get this dry hacks cough and it is aggravated by chemicals of any kind and the coughing gets quite bad. I have to carry water where ever I then I am also peeing continually.
I try keep activeso I started swimming at the YMCA....about 2 weeks of the chemicals in the facility had me gasping with shortness of breath so I had to start on puffers. My rheumy said nono

Then there has been the stomach and GI stuff. When sjogren’s Is bad my stomach just stops working.
The smooth muscle that is supposed to move food along is almost stopped. I have had motility studies
and am told that my stomach empties about a third a fast as the norm.
So I eat two bites and am full. A lovely dinner begins to look like “oh, it’s you again”....
and of coarse if that isn’t working the gut doesn’t either so I am on motility drugs and laxatives to combat painful illieus.
So back doubling my prednisone and all the gifts it brings....insomnia, hunger...but I can’t eat, puffiness so my clothes pinch me, but it has settled the inflammation so I am not in pain and not in danger of the destruction and cancer it can cause.

So my goodness we do what we have to.
I am now looking at purchasing an despite all this fun and games my joints and mobility are not too bad. In 2016&2017 my platelets dropped so I was on high dose pred for 10months, 100 mg daily then tapering after a couple of months to see if that would fix the problem, it didn’t so I did chemo all last Christmas. No complaints it did the job and my platelets are good, but the high dose pred deconditioned my muscles. I am like a limp noodle and as weak as a kitten.
Then this past summer we moved and the packing and lifting just did wonderful things for my spine because of the deconditioned muscles...who-hoo! Ended up on lyrica and baclofen for that. Then I read about fibromyalgia treatments because it finally joined in....and osteopathy saved was awesome.
I could actually stand and move without pain after the first treatment. She said my spine was out of alignment. You got to try is so great.

So goes my life....but I am determined slowly to get back to where I was....I tried an elliptical and it is fun, gentle and feels so good to move. For me gentle movement (like the swimming I can’t do for chemicals)
is better than any pain medication I have tried. Except when things get past the point where I lose my determination then a nice IV of morphine at the ER is the only thing that breaks the pain cycle so I can get back up, dust myself off and go fight some more. It is all worth it...
After all it is a lovely SPRING day!
Hugs to you all for listening. Wishing you well.

Veteran Member

Date Joined Feb 2014
Total Posts : 2152
   Posted 3/7/2018 11:57 AM (GMT -6)   
Jeeez you poor thing!

I was only recently diagnosed with Lupus and so I cant offer up any advice except to say that you sound like a real trooper and I wish you the best!
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/7/2018 1:35 PM (GMT -6)   
I wonder if you can find a salt water pool, that may work better for you. In my town, the hospital has one at it's rehab facility that the public can use for a nominal membership fee.

Keep at it, it does get better. I was so weak after years of prednisone and cellcept that I couldn't even stand on one foot. It's taken quite a while (2+ years), but I'm pretty much back to previous strength levels with moderate endurance. I'll never have the endurance to run a marathon again, but it's great to be able to go on short hikes with friends.

Just be careful not to increase too quickly -- in running, they say no more than 10% increase per week. I found about 5% increase was all my body could take after/during Lupus. Still can only be active every other day, if I try every day I end up back in bed!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined Jun 2008
Total Posts : 59
   Posted 3/15/2018 11:29 PM (GMT -6)   
Well it has been a while and the tummy stuff has’t gotten better.
It did help to increase the steroids, but it cameback as soon as I tapered back off.
Liver enzymes are elevated, electrolytes are a problem...
My rheumy is guessing irritable bowel....which I have never been told before...
I see a gastroenterologist in May so fingers crossed.
Holy Moses I’m tired of it ...thefatige is terrible.
I have had to give up on the exercise idea for now....
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