Author Topic: Still another month until I can see the rheumy. Help...  (Read 269 times)

LIZARD66

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Still another month until I can see the rheumy. Help...
« on: May 01, 2020, 07:57:18 PM »
Hey, everyone! :)

I'm brand-new here but have had some signs of Sjogren's for about 4-5 years. I thought they were from other issues I knew I had, especially estrogen dominance, but in learning more, I'm completely convinced I have Sjogren's or something very similar. I have a bunch of symptoms, including most of these:

Dry eyes.
Dry mouth.
Joint pain, swelling and stiffness
Swollen salivary glands ? particularly the set located behind your jaw and in front of your ears
Skin rashes or dry skin
Vaginal dryness
Persistent dry cough
Prolonged fatigue

As of late, my legs and feet are swollen, too. I'm going crazy because, on top of all of this, after losing 115 on keto, 85 have plopped back on, and I still had a lot to go even then. What can I do besides white-knuckle it for the next month??  :'( TIA! <3

Carolina

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Re: Still another month until I can see the rheumy. Help...
« Reply #1 on: May 02, 2020, 04:03:57 PM »
Dear Lizzard,

You describe symptoms that seem like Sjogren's, and whatever the cause, it's NO FUN.  Your symptoms are like those on the list at the Mayo Clinic, for Sjogren's.     

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216

Your new Rheumatologist will do extensive blood work, since there are specific diagnostic factors that confirm Sjogren's Syndrome and other autoimmune disorders.

However, a great number of people have Sjogren's without the blood markers.  The insistence on finding the blood markers is designed to identify candidates for research.   It is important for research quality to have very similar patients, hence the stress on the blood work. 

However, as I said, many have Sjogren's or something very like it, without confirming blood work.

There are medications that will help with dry mouth and to some extent with dry eyes as well: Salagen and Pilocarpine.

I use Ultra Systane eye drops for my eyes, during the night. And keep water next to the bed.

When the heat is on in the winter, I rely on a humidifier to help keep the air from being so dry.

Of course, I always have water with me.  If I'm going into a meeting, I tuck a Xylimelt lozenge between my lower jaw and my cheek.  It stays there and  slowly melts, adding moisture to my mouth.  I haven't tried sleeping with it yet.

The three hallmarks of any Inflammatory Immune Disorder are:  1. Profound fatigue, 2. body pain, especially bone pain, and 3. depression.

There are medications to help with the pain and the depression particularly OTC NSAIDS, and prescription antidepressants.   But the profound fatigue is harder to treat.

By the way depression is a symptom of many Immune Disorders.  Not a result of the illness, but a defining symptom.

The surest way to interrupt a 'flare' of inflammation is with a brief course of Prednisone, by prescription.

There are some medications that ease all the symptoms for many people, particularly Plaquenil, and some of the monoclonal antibody infusions.

You may never feel 'perfect' but you can have relief from the worst of many of the symptoms you described.

Please keep us posted, Lizzard.

Stay safe and well.

Elaine









« Last Edit: May 02, 2020, 04:06:15 PM by Carolina »
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Kathy57

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Re: Still another month until I can see the rheumy. Help...
« Reply #2 on: May 06, 2020, 12:39:11 PM »
Lizard,

I think we?ve all been where you are!  It?s terrible to have to be so uncomfortable and have to wait to see the doctor.  I was able to call my doctor and was willing to take a cancellation appointment if it could get me in sooner.  I was lucky because someone cancelled and they called me!  I came right in and considered myself lucky.  Worth a try but then I was looking at a three month wait.

Xylomelts helped me and especially at night.  I use two xylomelts - one on each side for night.  Can?t sleep without them, and I?ve started using a mouth guard at night after urging from my dentist.  At night when I am so dry and uncomfortable, I grind my teeth and they are showing wear and tear.

I use Genteal eye ointment and especially at night.  Always have something to drink (hopefully sugar free) and sip swish and swallow to keep your mouth moist.  My favorite go to is plain cold water or flavored sparkling water - always sugar free.

Ibuprophen helped with my pain (before I got started on Plaquinil) but it was very hard on my stomach.  Luckily Plaquinil really helped my pain so I have cut way back on the Ibuprophen.

My feet never swelled up, but you should elevate your feet while you are sitting and resting.  Try to get lots of rest and to decrease any stress if you are able to.

Good luck with your appointment!  I hope all works out for you.  Hang in there.  Talk to us anytime.

Kathy
« Last Edit: May 06, 2020, 12:42:22 PM by Kathy57 »
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

LIZARD66

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Re: Still another month until I can see the rheumy. Help...
« Reply #3 on: May 17, 2020, 08:58:40 PM »
Thank you so much! :)

Honestly, I'm trying to be calm while I wait, but I keep getting more and more signs, and it's frustrating because I was working so hard at getting healthy after a barrage of new dxs over the past 13 years. I was even keto for diabetes and gluten-free for Celiac (still am and will always be), but I'm hearing now that I have to change my eating AGAIN, and I'm freaking out. I have always had sensory issues, particularly oral, due to a violent high forceps birth, and I'm a fairly picky eater as a result. I'm hearing that I need the Anti-Inflammation Diet now. That means giving up so many foods I love and having to eat many I really don't care for. I know it sounds stupid for a 53 yo woman to be so keyed up about such things, but I am. I even did the Anti-Yeast Protocol for a hellish 4 mo to kill severe candida and stopped because it wasn't helping. Then I learned it was because my hormones were completely upside down. It's been a nightmare.  :'(

Kathy57

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Re: Still another month until I can see the rheumy. Help...
« Reply #4 on: May 19, 2020, 10:28:25 AM »
Lizzard66,

Sorry that you are having such a tough time.  Can you let us know when you have your appointment of how everything turns out?  Many people here are wishing the best for you.

Hang in there.  There will be light at the end of the tunnel!

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

LIZARD66

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Re: Still another month until I can see the rheumy. Help...
« Reply #5 on: May 19, 2020, 11:30:54 PM »
Thank you, Kathy! It's 6/8, 2 pm. Still feels so far away...