It’s Time To Be Brave

Sjogren’s Syndrome has been causing me more trouble lately. My eyes have been dry for years. But, my mouth is now getting noticeably dryer. I’m needing water twice with every bite of food. Without all the extra water, I can’t get the food down my throat. And I need more water to try and swallow. My throat is getting dry, too.

Time to be Brave

Having heartburn, reflux, and dry mouth is something I knew about. I have them all, but now I’m seeing that Sjogren’s patients can also suffer from problems, such as Esophagitis. The esophagus can actually be damaged by inflammation. I hope that’s not happening.

I feel a lump in my throat often and food feels like it’s stuck when I’m eating a meal. Dryness from Sjogren’s can be all over the body. There was already an awareness that it can cause severely dry skin. I have that. Dry flakes of skin are all over, even though I moisturize daily. The skin on some of my fingers is so very cracked. I have open tears in the skin and it’s so painful.

I can’t seem to get past the cracking skin on my fingers. Nothing seems to help, and the cracks don’t fully heal before they crack open in a new spot. Sjogren’s can cause many types of pain.

My joint pain is a symptom of Sjogren’s, because many of us have arthritis. I haven’t been able to sleep much this week. My shoulder pain and arthritis pain have been so bad that I can’t sleep. If I don’t take 3 or 4 Ibuprofen before bed, I’ll wake up in the middle of the night…..painsomnia.

water

I know it’s time to see my Rheumatologist, but I’ve hesitated to go in person to get the blood work. With the worsening of my symptoms, my Sjogren’s may be attacking my body in a new way or going after one of my organs. This is the time when it is really important to see the doctor about adding something else to my treatment.

Plaquenil has never made any change in my symptoms. Low Dose Naltrexone has been a life-saver! It has given me tons of energy when I had none left. But, having energy doesn’t protect my body from an immune system gone wrong. I’ll need to get brave and wear my mask and shield and see the rheumie. It’s time.

@2020, copyright Lisa Ehrman

Disclaimer: I’m not a medical expert. This post contains my opinions only, and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.

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6 Responses

  1. Marielle says:

    Hi Lisa, I don’t know about this condition, so thank you for sharing your experience. I’m sorry for what you’re going through. May you have the courage to do what’s best. (Visiting today from the Friendship Friday link up. Have a great weekend!)

    • Lisa says:

      Thanks for coming over to visit 🙂 Sjogren’s is very similar to Lupus, but not as well-known. I like to share my journey, to hopefully help someone else.

  2. Joanne says:

    If it makes you feel any better I just had bloodwork done today at our local hospital and I was so impressed with all their protocols they had in place. I thought I’d feel “dirty/germy” afterwards and want to shower when I got home but a good squirt of hand sanitizer and a good hand washing when I got home felt like enough. I barely waited even 1 minute in the waiting room and there was only 1 other person in it– waay farther than 6 feet, everyone had a mask, I had nothing to sign and other than the actual blood tech no one came anywhere near me. Though I don’t have an autoimmune disease and am not high risk so I realize what you’re facing is not the same. I hope when you do feel brave enough to get your bloodwork done you get some answers that will help ease all these symptoms.

    • Lisa says:

      It sure sounds like your hospital has their act together. I’m thinking if anyone does, it should be the hospitals. Not having to wait long sounds marvelous, because we always worry about exposure to other’s germs. I feel encouraged to brave it. Thanks, Joanne.

  3. Maryann D. says:

    I have Sjogren’s and RA. I really knew I had Sjogren’s and the RA diagnosis was a bit of a shock. I take Methotrexate and it seems to be helping. I have had the cracks in my fingers for years especially in the winter. My rheumatologist said it is dry skin and not Sjogrens, but I really think Sjogren’s causes the skin dryness and the cracking. My eyes are terribly dry and painful, I do see a Retina specialist each year. I hope you will feel better, but I for sure understand about the dry mouth and throat.

    • Lisa says:

      I’m glad that the Methotrexate is helping you. It’s good that it helps the RA, too. I was always thinking it was dry skin, because of the winter symptoms. But, now I get it in the summer, too. I hope that your eye specialist can find you something to help.

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