Sjogrens - My story

General Blog
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Thank goodness for this website. There is a support group near me, but only one in the State of Minnesota, and only meets once a month.

I have had dry mouth for over a year, and had other symptoms as well. At the end of December, I was at the dog park, when I was short of breath, having chest pain, quite fatigued, and had pain down my arm. My husband then took me to the ER, where I waited for 2 1/2 hours, thinking I was having a heart attack. They then decided I had a seizure and sent me on my way. I told my doctor that I know how seizures feel, and my husband knows what they look like, and disagreed with the doctor, but she was insistent, and sent me on my way.

Going to see my primary doctor, he basically told me (after some tests) that this is something I had to live with. Random pain, take some Tylenol. I then went for a second opinion, where this doctor told me that "there is obviously something wrong, and we will figure it out. She tested for Sjogrens, and then sent me to a Rheumotologist and a hematologist to see if they can help out with my low white blood count, and Sjogren's.

What a relief to have a name, and a course of action!

My fatigue is the biggest problem. I have been off of work for 2 months, and go back part time next week. I am afraid that there will be fatigue problems once I go back full time. I am looking at Yoga for help in this. I want to start on the DASH diet too, however my husband is a picky eater, and I usually do the grocery shopping, and cooking.

I am also needing to go to an optholmologist, and get some insight there. Have some cavities that need to be filled, but I am no longer being "talked to" for poor dental hygiene. I feel overwhelmed with the amount of medicine I am on

It is very hard for me to say no, and set boundaries. I am a caretaker, and want to help out, and go,go,go. This is the hardest part for me.

Any words of wisdom are helpful.

Thank you,

Leah

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Hi Leah,

Sorry this is happening to you. I know about the go, go, go, and not being able to say no. We all do! It's the most difficult part of not feeling well, not being able to keep up anymore, especially when it comes to caring for loved ones!

I have been through similar, been to the ER, had the stress test and all, which was perfectly normal, but the chest pain got so bad, I could not even pick up a dinner plate, or lift my arm to reach anything. My husband finally took me to see my Internist, who used to be his Dr before he was accepted by the VA. The Dr listened to me, to my husband, examined me, and diagnosed me with Costochondritis, those two big men laid me down on the table, held me and he gave me a shot of Demerol in the sternum ( I'll never forget it) and it knocked it right out of me. It may bother me sometimes, but never to that extent. I guess that broke the pain cycle...

I am not making a diagnosis here, just letting you know about me. Here is some more info on it:

http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454

It's worth asking about. I hope that you can continue to get answers, I'd stick to this Rheum and give them a chance to help you. There is nothing better than finding 'your Doctor'.

Wishing you well,

SK

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P S One step at a time...

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Hang in there! Sjogren’s sucks but there are still beautiful days! I’m sorry for your pain & long long journey and frustrations some stupid medical science we have to butt heads with:)

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Just take it one day at a time. Your body will tell you when you need to rest, I feel better when I exercise on a regular basis. I had to start out slow and build up. I also have to make sure I get plenty of sleep. I hope this helps. Good luck with your treatment :slight_smile:

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I am lucky, as I have a very supportive husband in this. I think this is natures way of telling me to SLOW DOWN! That will be hard for me, working full time with 3 kids and a husband. On top of that 2 pets (dog and cat). I know that I am fortunate to have GREAT insurance, and support. It is just nice to have a path to follow now.