Need to vent...

[Jeigh44]

I am a 35 year old male, who was recently diagnosed with Sjogrens.  I work as a personal trainer, and to most people, I appear very healthy.  I has become very frustrating to try to explain to people how badly I really feel.  They look at me as if I am exaggerating or being a hypochondriac about my disease.   

I have been dealing with constant, constant nausea, headaches, fatigue, difficulty chewing and swallowing, tingling in my feet, facial pain, and photophobia.  It is really a nightmare, and I feel like it is always something.  When I see the rheumy, I tell him that I am experiencing so many symptoms that I am afraid he thinks I am nuts.   

I am currently on rayos 4mg at night, Imuran 100mg,  Plaquenil 200mg, and Evoxac.   I do feel like these medications are helping, but I never have a day when I feel normal.   

I just wanted to vent to my fellow sjogrens suffers, and tell them that I completely understand how frustrating this disease can be.

God bless!
-J

[Kathy57]

J.,

So sorry that you have joined our ranks and at such a relatively young age.  I know exactly how you feel and I know that most of us have been made to feel like hypochondriacs.  It sounds like you are getting some serious treatment and that is good.

I don't know how long you have been on the Plaquinil, but I felt better after a year.  I also take several supplements that I think help.  I've learned a lot from the people here, and I hope you will too.

It is difficult to reconcile yourself to the fact that there is no cure for this.  Some days are better than others and I try to enjoy those days. 

Keep fighting the good fight and I hope you have better days ahead.

Kathy

[WhatYouSjo]

Hi J,

I can certainly relate to your frustrations. I am a male in my mid-30s, and I haven't felt 'normal' for years. I had to work with a number of skeptical doctors before I found a sympathetic rheumatologist. That being said, I have found some treatments that are helpful, and can still manage to live my life without too many modifications. There are precious few who know how frustrated I can be, particularly during flares, and I've generally found it to not be worth the trouble to explain to most people.

I remain hopeful that better treatments will come along in the next several years. There are promising signs in the clinical trial pipeline. In the meantime, I do my best to remain positive and hold together as well as I can. Having a community to share our experiences is definitely helpful.

[Joe S.]

I understand your need to vent welcome to our forum.

Some of us have listed what we take in our signatures.

I will sugest that you read " Spoon Theory" on the web to help you understand goodays and bad days.

As you learn to manage it things usually get better.

[SunshineDaydream]

Sorry to hear you are having a rough time.

Your plaquenil dose is low. Have you talked to your rheumy about increasing it? Depending on your weight, you'll probably be able to go up to 300 (splitting a pill or alternating days 200/400) or 400 per day. If you look up plaquenil dosage guidelines you'll be able to calculate. Guidelines were updated in 2011 so be sure to check date of source.