New guy here. I have questions.

[Rock Sexton]

Hey there everyone.  I feel like I've been around the world and back again during these last 5 years trying to figure out what is wrong with me.  A couple notables:

- Never got sick as a child, however did have problems with intense headaches/migraines and mysterious abdominal pains to the point where I couldn't straighten out at walk.  Eventually these subsided as I got into my teens.

- Had mono in college that lasted 6 months which obviously has life long lasting effects

- Was working as a corporate trainer for a restaurant chain up until 2005-2006.  On a 4 week trip to open a new location in Seattle became violently ill.  We only got paid for the hours we put in so I tried to work thru it for about 8 days before I finally checked myself into a hospital.  Symptoms included:

*100+ degree fevers
*Body aches
*Infection in the gum line of my back bottom left widsom tooth
*Gums bleeding
*Swollen Arm Pits
*Tongue Swollen

I can confidently say that I was never the same after that Seattle trip.  It took me three weeks of resting and taking antibiotics to recover, but strange symptoms started appearing after that.  Started out as an issue where I was bloated all the time.  Then I started feeling strange numbness in the tips of my toes and fingers.  Legs and arms would go dead all the time.  Then the debilitating fatigue started setting in...........and then everything else under the sun.   You name it, I was feeling it.  I was so frightened and paranoid because there were just so many things.  You can't even begin to understand the fears I had about what it might've been.  It's like my body completely went kaput.  Working in the serving industry probably didn't help.  All that high stress, poor sleeping habits, and caffeine.

I started being really proactive about my health.  I must've burned thru at least 8 or 9 doctors because I wasn't going to accept this turn-and-burn style patient treatment.  One doc was trying to prescribe me LexaPro within 5 minutes of our conversation.

At any rate........... my research originally led me down the Thyroid/Adrenal path, but as time has gone on some interesting things have turned up.   Apparently I have what's considered a benign condition in the liver known as Gilbert's Syndrome - where my liver doesn't know how to process bile correctly so I have unusually high numbers of bilirubin.  Then after getting the cold shoulder from one progressive Dr. (she thought I was pining for a chronic fatigue treatment, why I don't know) ...........she discovered I potentially have a blood condition known was Antiphospholipid Syndrome aka Hughes Disease aka "sticky blood" ............apparently it's an autoimmune problem which attacks certain proteins in red bloods cells causing them to clot.  Unfortunately I lost my insurance at the time she made the discovery and haven't been able to get treated yet.

Sticky Blood obviously started causing me some concern because it's also associated with Lupus, not to mention people have been misdiagnosed with MS who really just have sticky blood.   Also, once you have on autoimmune problem it becomes likely you can develop another.

My point in posting in this forum is that there's a couple of symptoms that have been persistent throughout, of which really got bad in the past 8 days as I was fighting some sort of flu.  You see my skin is always so dry.  It doesn't even feel like my skin anymore.  I can barely hold color.  My mouth is always dry, tongue often dries up, and my eyes are gritty and dry a lot.  One particular thing about the eyes which I noticed starting to happen a few years ago is that one of them will get blood shot out of nowhere.  I believe it's probably schleritis(?)......My left eye currently looks like this right now.  I'm always thirsty, in fact while I was sick I swear I felt like I was practically dried from the inside out.  My throat was like a piece of leather sitting out in the sun for years.  I couldn't drink enough water and no matter what did,  it wasn't doing anything.

Another weird system is the feeling like I'm not getting enough air.  My upper chest tightens up so hard it's painful when I sneeze (like sharp, intense squeeze)...........the inside of my nose is always so dried out.

Does any of this sound familiar to anyone?  I've grown quite perceptive about my body and reading everything about Sjogren's is really hitting home with me right now.

[missyb]

In a word, yes it all sounds familiar but could sound familiar on some other forums too 
There are 2 forms of sjs, primary and secondary, secondary sjs goes along with other auto immune illnesses. So, to say yes this is the answer may not be correct. It may be it, or it may be part of a combination of autoimmune issues, or maybe something completely different. You need to see a rheumatologist with a good reputation. Perhaps if you post your location, we can advise you.
To get a work up by a good rheum is probably about $400-500 if you do not have insurance. Money well spent. Once you are established, it isn't so bad, an office visit every 3-4 months.. I have ins, but choose to see a Dr who does not "do" insurance, so we pay cash. He saved me over $500 on presciptions last year alone, plus helping me feel better is priceless. He pays for himself, as they say 
Mine was a 6 year "journey" to diagnosis.
I get it. It's time for you to know.

[Jules48cats]

Hi Rock
Sorry to hear about all you have been through.   You sound like you need an appointment with Dr House.    
So you have no insurance.  That is scary, when you have health problems.   Can't you get Cobra insurance?
One usually has SJS for a long time before it is diagnosed, and it tends to go with other autoimmune diseases, So you could well have it.  Good luck and I hope you can get insurance again and go on your quest to find what is wrong and get some relief.  
Jules

[Rock Sexton]

Hi Rock
Sorry to hear about all you have been through.   You sound like you need an appointment with Dr House.    
So you have no insurance.  That is scary, when you have health problems.   Can't you get Cobra insurance?
One usually has SJS for a long time before it is diagnosed, and it tends to go with other autoimmune diseases, So you could well have it.  Good luck and I hope you can get insurance again and go on your quest to find what is wrong and get some relief.  
Jules

House?  From the tv show? LOL.......

I recently got my old job back, but I have to wait until the end of July before my insurance kicks in. 

All those dryness symptoms that I mentioned and the eye flare ups were very bothersome from this cold/flu that I had.  Whenever I get sick it feels like various organs flare up as well. 

It's always been my gut feeling that this is something I'm going to have to tough out until I find somebody who'll get in depth and really listen to me.  It's slowly evolved over the past 5 years and I need to nip this in the bud already.  It's significantly lowered my quality of life.

[Rock Sexton]

In a word, yes it all sounds familiar but could sound familiar on some other forums too  
There are 2 forms of sjs, primary and secondary, secondary sjs goes along with other auto immune illnesses. So, to say yes this is the answer may not be correct. It may be it, or it may be part of a combination of autoimmune issues, or maybe something completely different. You need to see a rheumatologist with a good reputation. Perhaps if you post your location, we can advise you.
To get a work up by a good rheum is probably about $400-500 if you do not have insurance. Money well spent. Once you are established, it isn't so bad, an office visit every 3-4 months.. I have ins, but choose to see a Dr who does not "do" insurance, so we pay cash. He saved me over $500 on presciptions last year alone, plus helping me feel better is priceless. He pays for himself, as they say  
Mine was a 6 year "journey" to diagnosis.
I get it. It's time for you to know.

That's the thing.........the general symptomology is hard to place because it's so familiar to a broad range of problems, specifically autoimmune.  However, the dryness problems are really standing out right now.........specifically in the past 8 days as I've fought of whatever this thing is.....cold/flu....don't know.  My left eye has been super scary looking.  I know that the dryness isn't diabetes related because doctors already ruled that out.

I've had questionable thyroid panels in the past, which suggested I needed to be monitored.  And after the autoimmune blood clotting problem, I pretty much knew to look in the lupus area...... because Lupus is closely associate with APS (sticky blood) and Sjogren's as you well know.  I tested negative for Lupus about 3 or 4 years ago for that, but who knows how accurate it was.  

I'm over in Scottsdale, AZ.  It's tricky because I'm not in any position to be dropping thousands of dollars immediately so I need somebody who has a workable set up.  400-500 sounds somewhat doable.  I just want to get this over with already.  I'm tired of feeling like this.  It's been so long since I've woken up feeling refreshed and healthy.  I'm 5 years into this and still fighting for answers.

[irish]

Rock, You have certainly had problems. All of us can understand because the people that get diagnosed rapidly are few adn far between. I guess if it was me I would have my GP refer me to rheumatologist, hematologist, neurologist and an immunologist that specializes in autoimmune diseases. If youo have these specialists and they are good-keep them---if they are not ask for referral to new ones. Life is too short to tolerate doctors who aren't trying to help you.

There are so many AI diseases and the symptoms can overylap which really makes it tough for the docs. REmember that you can have symptoms but still have negative blood work.

THe dryness problem in mouth can be greatly helped by using a med called Salogen or its generic. Once you have been diagnosed I would expect that the docs would put you on prednisone for a while to get you more comfortable and slow the autoimmune attack on your body. Remember, your immune system is in overdrive and trying to kill you off. Your goal is to find a doc who will slow it down. Medications generally need to be taken to slow the autoimmune diseases down.

Drugs called DMARDS or disease modifying anti-rheumatic drugs, are the drugs that are used. These are drugs like Imuran, Cellcept, Methotrexate,etc. I can't remember generic names of these. Also, sometimes Plaquenil is used to slow the AID but it depends on how severe your symptoms are.

If you are having eye problems see your opthalmologist ASAP as you don't want any issues that can result in vision loss. Restasis is an eye drop by prescription that really works great to improve the dryness in the eyes. It will sting and burn--sometimes for months but eventually most people get relief. The sooner one can start on this med the better it is for your eyes.

Sjogrens and other AID can affect the lungs. Make sure that you see pulmonology also to get worked up and treated. Also make sure to be checked for Scleroderma which can affect lung tissue.

I know you are sick and tired of being sick and tired---we all get that way. Sometimes I go into a temporary denial and don't go to the doc unless I absolutely need to.  Last but not least you may have to change professions. Many of us have had to because of the stress and long hours. It is good if you can find something and become educated prior to "needing" to change jobs. We have all had to make adjustments in our life style and non of us have the best quality of life or get to do what we thought we wanted. The best thing we can do for ourself is to accept what we cannot change and go with the flow and laugh a lot. Our attitude can do us more harm than a disease sometimes. Also, we don't need to make all the money in the world to be happy either. Medical insurance is very important for sure and if you can't get it, etc visit your local social services office and talk with them about alternatives. Good luck and keep us updated. Irish

P.S. I was raised in the restaurant business and became a Registered Nurse so I know about the stress and bad hours.

[Linda196]

Hello and welcome, Rock.

One of your comments particularly caught my eye

Never got sick as a child, however did have problems with intense headaches/migraines and mysterious abdominal pains to the point where I couldn't straighten out at walk.  Eventually these subsided as I got into my teens

Change never to rarely, Add extensive nosebleeding, and you have my childhood. When I did get sick, it was a doozy (measles encephalopathy, rheumatic fever).

I'm concerned about the lack of treatment for APS, since in most cases of non-symptomatic (no history of active clotting) disease, treatment can be very inexpensive, often just daily low dose aspirin. Even prednisone, which can be used also, is an inexpensive drug (one of the few I take that doesn't require a maximun co-pay and costs me less than $5 for 3 months, so full cost would be less than $25). Warfarin is also an old standby, and, although I've not had to pay for it myself, I don't think it's one of the pricier drugs either.

Hopefully when you get reinstatement of your insurance, you can follow up on all these docs, and get some effective treatment and some truly diagnostic testing. Meanwhile, try to optimize your general health...rest when you need to, eat properly, use lots of sun protection, and use whatever OTC products bring you relief (lubricating eye drops, moisturizing mouth gels, skin lotions, etc.)

[Rock Sexton]

I know you are sick and tired of being sick and tired---we all get that way. Sometimes I go into a temporary denial and don't go to the doc unless I absolutely need to.  Last but not least you may have to change professions. Many of us have had to because of the stress and long hours. It is good if you can find something and become educated prior to "needing" to change jobs. We have all had to make adjustments in our life style and non of us have the best quality of life or get to do what we thought we wanted. The best thing we can do for ourself is to accept what we cannot change and go with the flow and laugh a lot. Our attitude can do us more harm than a disease sometimes. Also, we don't need to make all the money in the world to be happy either. Medical insurance is very important for sure and if you can't get it, etc visit your local social services office and talk with them about alternatives. Good luck and keep us updated. Irish

P.S. I was raised in the restaurant business and became a Registered Nurse so I know about the stress and bad hours.

Looking back on things I came to conclusion just how disastrous the restaurant industry can be on one's health.  I generally stay away from them now, even as just a patron.  It always conjures up awful, anxious feelings and I genuinely feel bad for people who have to endure that as their career.  

After I graduated college, I spent all of the next 4-5 years waiting tables.  I'm normally somewhat of an anxious person.......somewhat of a worrier who's "always thinking" (kind of runs in the family) and it was probably the worst style of work for me.  Constantly up on my feet, working 10-12 hour doubles, running around, dealing with all the stress.  I started to eat poorly because I only had short breaks.  And obviously at times I'd abused stimulants like sodas, energy drinks, etc to keep it going.  Sleeping habits were terrible because of all of that, not to mention I'd often go out for a drink or two after work with co-worker.

Everything was rush rush rush...... at work and when I got out of work.  After I recovered from being sick during that Seattle trip, I probably had the most stressful stint of my entire life:

- Financial problems (Making ends meet, bombarded by collectors)
- Family problems (Parents near divorce, father drinking too much and developing a gambling problem)
- Relationship problems
- Health problems (Was so scared to not know what was wrong with me)
- Trying to get into law school (intense pressure from the family and DESPERATELY wanted out of waiting tables)
- Keep in mind I was also heavily in personal fitness and weight training so I'm sure this was even more added stress on my body

It was just one giant smorgasboard of pressure and my body cracked under it.    I didn't get into law school (or at least haven't tested well enough on the LSAT yet) so I sought refuge in the financial lending industry.  There may not be any running around so to speak, but it's still high on the stress levels dealing with all the clients and meeting numbers.

Thank you for your kind words though.  I'm just at that point where I cannot continue on like this anymore.  

[irish]

Rock, If you are getting to the end of your rope and have run out of lemons you might consider going for some talk therapy at one of the mental health clinics in your area. There is no need to be ashamed about this as people with chronic illness have high stress levels and their coping ability sort of flys the coop from being tired and in pain. Also, just the fact that we are ill every day of our life wears us out.

Most of us end up on antidepressants and they do help. They help with the nerve pain and help with sleep and mood.When we get better sleep we are more able to cope with issues.

I am truly sorry about your parents. It just goes to show us all that trouble never stops knocking at peoples door, no matter what the age. I'm sure this must put some pressure on you also. The bottom line is that they will have to work this out themselves. Seems like as parents we can't solve our kids problems and as kids we can't solve our parents problems.

Remember that with all the stress you are under now and with trying to get your physical health and employment straightened out it doesn't pay to make any big decisions. Once you get feeling better you will find that decisions are easier to make. Please try googling or going to the library to find a list of all the jobs one can do. Stress is not the sjogrens friend. Lawyers are under huge stress. Keep coming back and let us know how you are doing. Irish

[Scottietottie]

Hi Rock 

You've had some good advice from the others, that I really can't add to. just wanted to say welcome to sjogrensworld too!

Take care - Scottie 

[Rock Sexton]

Hi Rock 

You've had some good advice from the others, that I really can't add to. just wanted to say welcome to sjogrensworld too!

Take care - Scottie 

Thanks Scottie!

[Rock Sexton]

Rock, If you are getting to the end of your rope and have run out of lemons you might consider going for some talk therapy at one of the mental health clinics in your area. There is no need to be ashamed about this as people with chronic illness have high stress levels and their coping ability sort of flys the coop from being tired and in pain. Also, just the fact that we are ill every day of our life wears us out.

Most of us end up on antidepressants and they do help. They help with the nerve pain and help with sleep and mood.When we get better sleep we are more able to cope with issues.

I am truly sorry about your parents. It just goes to show us all that trouble never stops knocking at peoples door, no matter what the age. I'm sure this must put some pressure on you also. The bottom line is that they will have to work this out themselves. Seems like as parents we can't solve our kids problems and as kids we can't solve our parents problems.

Remember that with all the stress you are under now and with trying to get your physical health and employment straightened out it doesn't pay to make any big decisions. Once you get feeling better you will find that decisions are easier to make. Please try googling or going to the library to find a list of all the jobs one can do. Stress is not the sjogrens friend. Lawyers are under huge stress. Keep coming back and let us know how you are doing. Irish

I will agree that stress is the kryptonite to getting better.  It's just so hard to find that sanctuary to allow me to get better so that I'm healthier and able to handle more.  It's like the racket doesn't stop.  For example, just when I thought I was really starting to make it at work and making good money - I got laid off.  So I never I feel like I get a chance to kick back on my heels.

You're right about the Law profession.  I'm generally very quick witted and love to argue, probably why my family has been pushing for it for years.........but that is indeed such a high stress environment.  I've tried to explain to my family multiple times why I've not shown the amount of dedication to it as they'd wish, but they're just not getting it.  My mother of all people should understand.  She went thru a terrible bout with what they thought was Fibromyalgia back in 2002-2003.  She was practically bed ridden for a year.  Instead of sympathy, all I get is doubt about what's bothering me.  She doesn't listen.

I think the biggest thing with me is trying to get back to a normal bill of health without so much reliance on pharmaceutical drugs.........if possible.  I have to admit the doctor who tried to prescribe LexaPro to me within the first 5 minutes of consultation really left a sour taste in my mouth.  I have quite the progressive belief when it comes to our bodies that we were designed to heal if proper health is promoted.  Much of the nature of pharmaceuticals simply allows us to live with conditions.

It's in my opinion that the combination of all that stress, mono, and being sick up in Seattle was what broke my body down.  It hasn't caused irreprairable harm yet, but if I let it go anymore it's sure to. 

BTW, have anyone on this board ever read up on some progressive treatment called Ozone Therapy? 

[Linda196]

Ozone therapy has been around since the late 19th century, in one form or another, and since the early 1970's there have been established guidelines for it's use in Europe where it is considered a well established alternative and complementary therapy, but not well enough established to be a part of mainstream medicine, or to be covered by health insurance.

One major concern is the toxicity of ozone to human tissue, especially blood and lung cells. In the USA, there have been statements issues by the American Cancer Foundation to the effect that (in 1993/94) although ozone has been subject to legitimate research there is no evidence that ozone is effective for the treatment of cancer in humans and could possibly have harmful effects. In the UK and Australia as recently as 2001 also suggest that knowledge regarding the potential benefit and harm of ozone in cancer patients is insufficient. For that reason, they don't recommend ozone therapy as an alternative form of treatment for cancer patients. Unfortunately there have been no controlled studies as to effectiveness or risk in autoimmune or inflammatory disease.

[Rock Sexton]

Ozone therapy has been around since the late 19th century, in one form or another, and since the early 1970's there have been established guidelines for it's use in Europe where it is considered a well established alternative and complementary therapy, but not well enough established to be a part of mainstream medicine, or to be covered by health insurance.

One major concern is the toxicity of ozone to human tissue, especially blood and lung cells. In the USA, there have been statements issues by the American Cancer Foundation to the effect that (in 1993/94) although ozone has been subject to legitimate research there is no evidence that ozone is effective for the treatment of cancer in humans and could possibly have harmful effects. In the UK and Australia as recently as 2001 also suggest that knowledge regarding the potential benefit and harm of ozone in cancer patients is insufficient. For that reason, they don't recommend ozone therapy as an alternative form of treatment for cancer patients. Unfortunately there have been no controlled studies as to effectiveness or risk in autoimmune or inflammatory disease.

Linda,

Was that  a copy and paste?

I have actually spoken first hand and in person with people who are using it for their ailments and they are raving about.

[lynnmarie219]

Hi Rock!

I'm so sorry that I missed your post! Everyone here seems to be giving good advice....so I will just say Hello and Welcome!

I hope you get some answers soon...its terrible to not know what is going on with our bodies when we feel so poorly!

Keep us posted!