Introduction/Venting/Advice

[DarthBlazer]

Hello all! I am a 32/m who was diagnosed with Sjogrens about 6 months ago, after years of symptoms, which no doctor seemed to have been able to figure out up until recently. After a bunch of visits to my rheumatologist and a LOT of bloodwork, they did confirm I have sjogrens. I was prescribed Plaquenil, which I take twice a day. I have been on the medication for about 6 months now, and don't really know if I can tell any difference. My most obvious symptoms are mostly soreness, at any part of my body, whether it is my joints, muscles, even my testicle sometimes, but most noticeably is within my abdomen and chest. It almost feels like my body isn't digesting properly, which causes me to get backed up and have excessive gas pressure which causes the pain, but that's only a guess on my part. I'm constantly fatigued, and weak. Because of all of this, I'm always down in the dumps and depressed, along with having anxiety, which only gets worse because of the symptoms, which in turn makes the symptoms worse. Its like a snowball effect.

Now, I know, I don't take care of myself as well as I should. I smoke, and have a few beers every night, which helps me forget my symptoms a bit. I feel like I need to exercise more, but I never have the energy, and when I do, I feel my symptoms worse the following day.

I'm just so sick of being sick all the time. I'm only 32 years old, and am so upset that I may never feel "good" again. I'm always in pain or just generally uncomfortable. I feel guilty complaining to friends and family about it all the time. There are days where I just wish I would die so I don't have to be miserable constantly.

Thank you all for listening. I just need to vent.

[Joe S.]

Welcome to the forum. When you reach the point were you can manage your symptoms your life will seem better. Some of us have posted what we take in our signatures.

I try to keep my paragraphs short as my eyes need the white space. At 64, I am a bit older than you. There are others older than I am. You can live a long live with this disease.

I have SPF 50 clothing that I wear. My wife found a wash additive that will expand the SPF rating of any clothing so we will try that this summer on our trip to Campbell River, BC.

I wear blue blocker sun glasses when I am outside. I also have a big floppy had to shade me from sun. Compression gloves for my hands and a black out cover for riding in the car.

[araminta]

So sorry you are having a bad time.

Having read your post, I would suggest you look into mindfulness and meditation.   You just need to put aside 20-30 minutes a day.   The benefit is that you start to get less caught up in negative emotions like fear/panic/depression/anger.   You can't eliminate those feelings, but you can stand back from them and relate to them in a different way, and stop them snowballing as you put it.   This can even apply to physical pain (you can see youtube videos of pain management courses such as those run by Jon Kabat-Zinn, they do seem to work for at least a large number of people).

Also I would suggest at least give up the smoking, even if you keep having the occasional beer!

[DarthBlazer]

Thank you. I do plan on quitting smoking in the next few months, it?s just hard to think about that when I?m already down and stressed out, but, I will do it. I will look into the meditation as well. I think part of my issue is when these symptoms occur, I always worry that there is something else causing it, and then I freak myself out. Like, when I have chest/abdominal pains, I convince myself there?s something wrong with my heart or that I have lung cancer etc. My doctor has reccomended mood stabilizers, but I want to take as little medication as possible...

[Carolina]

Dear DarthBlazer (love your name)

So much to think about, and where to start.

"It almost feels like my body isn't digesting properly, which causes me to get backed up and have excessive gas pressure which causes the pain, but that's only a guess on my part. I'm constantly fatigued, and weak"

1.  Immune Disorders like Sjogren's can attack any organ/system in our Body.  If there is neurological damage to the gastric system several problems can occur.  One is called gastroparesis, where food is not moved out of the stomach into the intestines properly.  This can be tested and perhaps helped.  I don't have it, so don't know much about it.  But I have several other problems related to my gastric system, due to neurological damage.

2.  Plaquenil can take a long time to work, I've read here.  I don't take it, so I can't comment.  You should be in touch with your doctor(s) about this.  You will need to talk to doctors on a regular basis and should always be prepared for this.  Sorry, but it comes with the territory.  You are your best advocate, since you know yourself best.

3.  Keep a daily diary of your symptoms, pain level, bowel movements, everything.  Start now.  It will help you understand yourself, and will provide information when you see your doctor(s).

4.  The three major symptoms of chronic inflammation and of inflammatory flares are:  Pain, Fatigue and Depression.  Sounds like you've lucked out with all three! (sorry, that's 'humor')

3.  So, for pain and inflammation you should be taking an anti-inflammatory medication like Ibuprofen or Aleve, if you tolerate them.  A course of prednisone will clear up pain, fatigue and depression very quickly since it is a powerful anti-flammatory.  Ask your doctor.   Most anti-depressants will help with both pain and depression.  do not be afraid to ask for and try medications, Darth.   You can always stop if they don't help or have side effects.

4. Mild exercise, in a warm water pool, may help without making you feel worse.  Exercise is essential to my physical and mental health, and I'm 76 years old and disabled from damage caused by my Immune Disorders.  I'm talking GENTLE EXERCISE.

5.  Meditation/Relaxation/Journal writing are all ways to focus your mind and relax your body.  Read up about it and then try it.  There are YouTube and other sources of ways to meditate and relax.

6.  You have a chronic condition, but it probably won't get any worse that it is now, since it usually doesn't.  Don't worry about what happens to others, especially those who post here since we are among the very few who have had some progression.   Each of us is different.

7.  You have a chronic condition and you will learn to live with it.  It is very hard to accept and you are very young and you are a man, so won't find many to relate to.  There are guys here, and young men, so I hope they reach out to you.

Welcome to our Forum.  We are here for you.  There are people here with so much knowledge, compassion and humor and they have been a lifeline for me, Darth.

Regards, Elaine

[Kristina09]

Hello Darth and welcome,

   You have come to a caring place, this is exactly the location to vent and share your symptoms. I know it seems like it?s one thing after another and there?s anxiety in wondering what?s next.  My personal advice is just take one day at a time. Everyone experience is different here yet there is always people to relate to.  I am new here as well and it has helped me tremendously. 
   
    We are here for you. Mood stabilizers may be a good idea, if you can emotionally tackle this the physical gets easier.  Being chronically ill is adapting to a new way of living.  Acceptance was always a huge challenge to me. I hope you find some answers and support here.

     Thank you for sharing.


   

[DarthBlazer]

Thank you all for your kind responses and advice. It?s nice to know there are people who I can talk to that are dealing with the same issues. I will try and frequent this board often and help others in any way I can. Elaine - your reply brought a tear to my eye. Accepting this is difficult for me, but I will get there. Once again, thank you all.

[Deb 27]

Darth, it is very hard at first. First, I should say that I am seronegative, so my disease may be different. At one time, I was so fatigued and depressed. It's been a long road. Functional Medicine really helped me. I can't say it would help all people but I am grateful. I had some food intolerances, the top ones were gluten and dairy. I got a big boost when I cut gluten, dairy and processed foods out of my diet, along with MSG. I take a variety of supplements and a multi vitamin with a fish supplement. These are the things that have given me the biggest help.

I also found out that I had a problem with folate metabolism. So I take methyl folate and methyl B12.     

[DarthBlazer]

Thanks Deb. How would I go about finding out if I have any of those issues???

[markt]

Hi,

Just wanted to check on you as well.  It's a hard, unexpected thing that like you, I never imagined dealing with auto-immune disease at 31...  I had just finished building our house, my wife was

pregnant with our second girl, and to top it off, I was getting ready to deploy right when I mysteriously got sick.  It was scary and unsettling considering everything that was going on.  I am sure

what you are dealing with is not much different.  That said, you can learn to deal and manage it much better a little time and perspective.  Everyone here is giving solid advice... just hang with it

for a bit.  It's a busy time in the world of cancer and immunology;  before long there will be several systemic treatment options just for Sjogrens.  In the meantime, advocate for your care as best

you can... and when all else fails, you can fall back on folks here for advice, I get the feeling there isn't much they haven't seen!   

[irish]

Good advice Caroline. Know that all of us here have had pretty much the same symptoms but not in the same order or severity. There are so many symptoms that can show up and so many of these were almost unheard of in 2003 when I was diagnosed with Sjogrens. I was 60 years old at the time and had doctored since age 21 from 1964 on. The doctors had no clue and just always waved me off as a nut. I am a registered nurse and I always felt that I was dealing with autoimmune but no one would listen to a smart mouthed know it all nurse.

The summers were always the worst with the heat. I would always tell my hubby that my body was off kilter for some reason.....I was right. Sooooo, all I can say is to document your health issues, Tell the doctors in your own words how you feel. Try tooo encourage the doctor to work with you to identify the problems and treat you to keep you comfortable.

If you don't get sympathy, understanding, testing to help identify problems, then find another doctor. I went to a whole slew of doctors in my part of the state and was insulted by half of them and fired a lot of them. My hubby told a big specialist one time (this guy told me I needed psychiatric care) that doctors are the only profession that are guaranteed to get paid for doing nothing. Unfortunately, it was true in his case and he was dead wrong. You should be able to tell in a couple of visits if a doc is going to work with you.

You can also do the online research to find doctors and also call and ask to talk to nurse manager and find out if the doctor you are wanting to see takes patients with hard to identify illnesses that could be autoimmune. Some doctors don't want to deal with autoimmune at all as it is time consuming. Keep on keeping on and do not panic. Do not think that every thing is cancer as worry wears a person out and you need energy to keep on task. It takes time to find the right doctors but it will happen. Goode luck Irish

[susanep]

Hello Darth,

You certainly did come to the right place, and have received some great advice. I will add my two cents.

I am almost 65, and have felt like you when this started for me, and still have those moments. We all do. I had to accept a new way of life.

When I was first put on Plaquenil, I didn't know if it would help or not, but what let me know it did help me was when I could raise my arms again to brush and wash my hair. Before being on it, I was so out of it fatigued and weak that I struggled to do that. Taking a shower was horrible.

I went from being diagnosed with sjogren's to also diagnosed with fibromyalgia, because I was so sore all over, and had lots of muscle pain. I now take regularly gabapentin which helps my muscle pain so much. At first I didn't want to take it, because like you I did not want to be on a bunch of medicine.

I already was taking a antidepressant for clinical depression before any diagnosis of these. I now know that autoimmune disorders can cause the depression too, and not just because of dealing with all of this, but how our bodies are effected all over.

I also now have an added diagnosis of Lupus, and the latest as of last year of Rhuematoid Arthritis. My Rhuematologist said they can over lap each other as they turn up through the years, but not every one has them all.

I use to work as a Special Education Teacher that I went to school for later in my life so it was really important to me. I had to retire early in 2010 due to my severe fatigue, pain, and the brain fog I was having that stopped me in my tracks when it came to working on student files. That was something I had always thrived on (working on the files), and that last time it was like, please someone get me out of here.

Oh how I struggled thinking what will we do if I can't work. These people here helped me so so much when I was going through that.

I kept thinking the worse. See I am married to a wonderful man, but he is disabled and though he got medical help, he did not get a check that would have helped. (long story)

That last day with the files just starting a new year in the fall, I went home, and went to bed, and told my husband to call the people at the central office and tell them I will not be back. I told my husband I did not know what would happen, but I needed to rest.

I was awarded total social security disability after only 5 months with no attorney due to my record at school of having to miss a lot with illness, and letters from my doctors, seeing their doctors, and I think they could see that I was not someone who wanted to not be working, but had no other choice.

We looked for help wherever we could to hold on until things fell in place. We don't have the money now as we did then or the added benefits, but I sure can lay down when I need too, and don't have pressure on me.

I now do simple things with a lot left undone, but that is just how it is. I have a strong faith so that helps me the most.

I did get to teach for 15 years so I am so grateful for that. I am grateful for everyday. I also worried about pains being something more serious as you described, my son is that way too.

You take care, and come back whenever you can.
You will make it, and it will be your unique journey.

susanep

[DarthBlazer]

Each day when I?m down I come back here are read your responses, and other posts, and it gives me hope. I?m hanging in there and am researching ways to alleviate my symptoms when they occur. I will keep you all updated.

[Kristina09]

One more thing Darth. 

   This week I started a daily journal. I?ve been writing down my symptoms, pain level and location,  my mood, my sleep pattern, my dreams that I remember and what I?m grateful for that day.  It has helped me very much. I can organize my feelings and not feel so overwhelmed. It feels like a release without having to feel like I?m burdening my love ones with every single detail.   I wanted to share this with you because it?s something so simple but I?m glad I started it.   

     Hang in there. We are all in this together.