What Having Sjogren’s Means for Me.

As I stated in my last post, Sjogren’s (pronounced SHOW-grins) syndrome is the second most common autoimmune disorder and affects as many as four million Americans. Unfortunately, it usually takes quite a long time to get diagnosed. One of the reasons: there just isn’t much awareness of it. Because moisture is so vital to maintain a healthy body, this delay can cause some pretty serious complications.

The hallmark symptoms are dry mouth and dry eyes due to decreased secretions by the glands. Some of the other symptoms include:

  • dry, gritty, or burning sensation in the eyes
  • sensitivity to light
  • difficulty talking, chewing, or swallowing
  • sore or cracked tongue
  • dry or burning throat
  • dry, peeling lips
  • dry nose
  • vaginal and skin dryness
  • change in taste or smell
  • increased dental decay
  • digestive problems
  • joint pain
  • fatigue
  • cold fingers, toes, and/or nose

Symptoms often vary from person to person and can worsen, stay the same, or, very uncommonly, go into remission. Some people might only experience mild discomfort and others may have damage to internal organs from the dryness. For me, my symptoms have slightly worsened over time. These symptoms include:

1. Dry, gritty, or burning sensation in the eyes.

I’ve always had slightly dry eyes and a need to sip on something rather frequently, so it took me a long time to realize that it wasn’t normal and that the level of dryness I was experiencing was way beyond normal. I have experienced the dry, gritty, and burning sensations in my eyes so often recently that I’ve found myself almost completely unable to wear my contacts. It’s not like I wear the regular disposable ones either. My contact brand is designed for people with more sensitive eyes or drier eyes and I still have troubles wearing them for more than a few hours. I’m constantly rubbing “eye sand” from the corners of my eyes and I’ve been told by others it’s not normal to have to do that as often as I do. At one point, I even had an eye doctor prescribe me prescription wetting drops and I think I may need to seek those out again.

2. Sensitivity to light.

I’ve had issues with bright light for quite a while. It’s one of the reasons I own so many pairs of sunglasses. I’ve always blamed having blue eyes for it, but it turns out it is probably more related to the Sjogren’s than my light eye color.

3. Difficulty talking, chewing, or swallowing.

The first time I read this symptom I thought, “Oh, no, I definitely don’t have that.” It actually took people pointing things out to me for me to realize I experience this. On occasion, I find myself have to sputter out words because it feels like my tongue is sticking inside my mouth and not forming words properly. I’ve also had a sense that I was struggling to chew but always blamed it on having mild TMJ disfunction. Finally, swallowing. Oh man. I get what I refer to as “bubbles in my throat” and that feeling makes it hard to swallow. I’ll swallow hard and you can actually hear it. I guess that’s not normal either. =P

4. Dry nose.

What a weird sounding symptom this is. Seriously. But, I do have it. I find that, especially in the winter when the air is drier and the heat is turned on, my nose feels so dry the inside of my sinuses and nasal passages ache. It will give me headaches and weird aching sensations. It’s rather unpleasant, as you can imagine. If you catch me with my face buried in my shirt in the back of your car in the middle of the winter, chances are my nose is dry or cold or both.

5. Vaginal and skin dryness.

At the risk of giving you a little TMI, I’ve got to say I have this one for sure. My ankles, elbows, and hands have a tendency to get so dry they get almost like sandpaper and dark in color. I have also developed dyshidrotic eczema on my hands and elbows, which is worsened by dryness. As far as vaginal dryness, I won’t go in to the gory details, but suffice it to say I definitely do experience that.

6. Change in taste or smell.

I’ve noticed over the last year or two that I’m having more sensitivity to smells. I can smell things before others do and that they smell stronger and more pungent to me. This is particularly true of spicy smells, foul smells, and perfumes and colognes. It makes it pretty hard to go anywhere near those stinky stores in the mall (I’m talking about you Abercrombie!).

7. Increased dental decay. 

I’ve always been pretty anal retentive when it came to my oral care. I have a real fear of my teeth falling out or something along those lines so I’ve taken pretty good care of my chompers. So when I went to the dentist last time and found out I had spots of decay all over my mouth and needed a ton of dental work, I was floored. It made me so sad and anxious. To know I take care of my teeth better than other people who have no cavities really upset me.

8. Joint pain and fatigue.

When I first started experiencing increased joint pain, aches, and fatigue, I attributed it to my long-standing diagnosis of depression. I reported it to my doctor and my dosage of antidepressant was upped. It didn’t help. I tried to brush it off as “I’m getting older” but I’m really only 27 now, so I’m not that old. Even my doctor indicated that the level of fatigue I’ve been experiencing is abnormal and that’s one of the reasons I was tested for lymphoma (beyond the crazy big lymph nodes I had).

9. Cold fingers, toes, and/or nose.

While I don’t have cold fingers, I have feet that get so cold they ache. Every night I wind up having to crank my heating pad and lay it across my feet under the covers. John likes to joke that they feel like ice blocks. It’s incredibly uncomfortable. My nose also gets exceptionally cold. I’ll pull my shirt over it or wrap my fingers around it the best I can in an attempt to warm it up. Yes, I look ridiculous, but when it gets that cold, I’ll do anything to try and make it feel better.

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