New to Forum - Very Ill With Sjogrens

[shelby]

Hello Everyone,

I have been a longtime lurker here, reading the forum posts and occasionally participating in chats,  but never have posted.   

I am a male in my 50's, and am going substantially downhill now from Sjogren's and am seeking support.

I have been progressively ill for 8 years and was first diagnosed with Sjogren's in year 5 by numerous positive Ana's, a series of pos SSBs, and a positive lip biopsy.  I am negative for all Lupus indicators, and negative for R. Arthritis and all other auto immune indicators. 

I also have hypothyroid, mild degenerative disc disease with four herniated discs and mild stenosis, two lumbar spinal tumors assumed to be benign, and a head MRI with 50 hyperintensities in the white matter, none in the grey matter.   I have textbook fibro, pushing on the trigger points makes me react strongly. 

I have a compatible suite of medications, and am almost pain free at the moment for the very first time in 8 years, but am taking substantial doses of my relatively mild medications to achieve that (no narcotics, MTX, or imuran, etc).   This set of medications was the result of eight years of trial and error, and works as well as I could realistically hope, however, I am becoming increasingly ill. 

Most of the time I am housebound, and increasingly I am spending consecutive days in bed.  I worry about becoming bedridden, but do have my wife as a caretaker. 

I think the Sjogrens is entering my lungs/heart,  and am just starting to enter that series of tests and imaging. 

I have done massive amounts of reading about Sjogrens, such as the abstracts on pubmed and other sites, and after 8 years feel I should be some kind of wise, experienced, old hand at it, however, I do not feel like that at all -- I am actually frightened now.

I suppose I have figured some things along the way, but now my illness is progressing into new territory that I am not so familiar with except by reading things that may, or may not, define my situation.  You know, that doctor/patient guessing game as to what is going wrong this time. 

I am now frightened enough about what is happening to actually make a public post and introduce myself.  I don't have any immediate questions.   

So, hello everyone!  I hope everyone who reads this is as well-as-is-possible today!

[Linda196]

Hi Shelby, welcome to Sjogren's World.

One very important thing to remember is the extreme individuality of this disease.......you may never experience the symptoms you read about, just as others may never have to deal with the ones you do, so please try not to let what you research frighten you...on the other hand, it never hurts to be prepared and aware of possibilities!

Another factor is the ebb and flow of any autoimmune disease; wether aided by medications or not, the symptoms can improve...I was once at the same point, almost completely bedridden, requiring a cane when up, and relying on family to care for me ( a bitter pill for anyone, but "Mom" is supposed to look after everyone else!) and now I'm able to live a fairly normal, if extremely sedentary, lifestyle.

My gameplan is to optimise everything (thyroid function, nutrition, vitamin levels, weight, rest, etc) and hope that the symptoms of AI will regulate based on my body's underlying health... if that makes any sense at all.

You have definitely found the right place for support, and let your wife know she is welcome as well, if she is curious about what you are living with, or just wants some social time.

[Joe S.]

Welcome Shelby. I hope that you can find what works for you to manage this health challenge. Some of us post what we are taking in our signature line to help others.

Be kind to yourself and take care of yourself.

[Scottietottie]

Hi Shelby 

Welcome to Sjogren's world.

You don't say what doctors you are seeing just now or what medications you are on. Are you sure your thyroid is stable right now because I'm hypothyroid and my meds seem to need to be adjusted about 3 times a year and when they are 'off' is when i feel worst.

I'm sure you will find support in this forum.

Take care - Scottie 

[CK]

Welcome Shelby to the site -- there is so much to learn and I am totally new to all this.
I guess we get to grow and learn all together

[Shani]

Welcome to the boards Shelby.
If you ever need a shoulder to cry on or a listening ear, we'll be right here.
Please keep that in mind.

Gentle hugs and spoons to you.

[Bucky]

Hi Shelby - I believe I've met you before in Sunday night chat.  Welcome!

I believe you are a neighbor to the north of me in Wisconsin, as I'm in Central Illinois.

There is a wide range in ages from 5-70+ of fellow Sjoggies (what we call ourselves) - both female and male, from literally, around the world.  None of us are exactly the same in our Sjogren's journey - but, we're all on the same road - which helps.  We "get it".

It is scary when you travel in unfamiliar territory.  There are several members who have dealt with or are currently dealing with lung and heart issues related to Sjogren's.  I, myself, have recently had some heart tests - which showed nothing conclusive.  Just waiting for the tests is stressful - not knowing what to expect.  Usually, there is someone here who has undergone a specific test and they can offer support to you.

With winter weather here, I find being outside and breathing the cold air makes my lungs hurt.  I try not to be outside for too long when it's really, really cold.

You can type in certain things you might be interested in, in the Search box to the top left and it will take you to previous threads about that topic.  Like Linda said, you may never experience any of the symptoms others have, and vice versa.

I'm glad you introduced yourself - welcome!

Bucky (who is female and used to live in Ohio, the "Buckeye" state  )

[Pisces24]

Right that Sjogrens is very individualistic.  It shows different symptoms for everyone.
Reading about all the different symptoms etc. can make your imagination go wild. I look at reading about Sjogrens more as a vindication that I DO have it and am not crazy.  I can understand about being frightened.
For about a year I had a "specialist" diagnose me as having some type of lymphoma cancer. The minute I had certain symptoms I was supposed to get myself to the emergency room ASAP. Well for about 1 yr I was just waiting for those symptoms to manifest - I just wasn't myself at all - absent minded, worrying, not as active, not eating as well and just plain not enjoying my life.  After that year I decide the heck with waiting for the roof to cave in. I was just going to take things as they come. Two years later in March 09 I was positively diagnosed with SJS - my #s were so high there was just not doubt my immunologist said.

Stress doesn't help either. I am working on serenity but it is tough at times.
I also have some lung involvement with Sjogrens though no symptoms but am being monitored for that among other stuff.

[Patze]

Hi Shelby,

I'm so glad that you've found us and am also welcoming you to the SJS World and family!  Please continue to look around as the others are so right, there are a tons of topics that you just might find interesting.  And lets not even mention all of the wonderful members that we have here as well.

The others are so right, don't let it get to you (I sure know, much easier said than done!). 

Take care of yourself and I hope to chat with you soon -

Patze

[shelby]

Thanks everyone for the warm welcome.  

I always liked reading this forum.  When I was first diagnosed with Sjogren's I felt it might be secondary to something else that is worse, so I held back from posting anything here.  Now I have learned that Sjogren's alone can potentially explain most of my worst symptoms.  

I could not endure the pain without the pain meds I am taking, and they only barely keep it under control.  However, they do, and I am excedingly grateful for that.

My fatigue was clearly post-exertional for the first 6 years or so, now it is just all the time, but still proportionally worse after exertion.  I do almost nothing now, but am happy to have the internet.

I am tired of going to new doctors.  They all like to run these huge auto-immune panels, along with CBC, thyroid etc.   I am always negative for everything except ana and SSB.  I traveled 1200 miles to Johns Hopkins several times this year, with no progress.  I gave up there as I was getting referred from doctor to doctor, so I never really let them finish -- but I wasn't getting anywhere and spent thousands, even with being insured.

I had some slightly highest-normal protein (56), maximum white cells (5), and faint IGG banding in cerebrospinal fluid, but that was apparently not worth commenting on. I realize these numbers are not that elevated, just slightly.  I have little idea what those would mean, but I didn't have lyme, syphillis, MS, or a bunch of other things they tested the CSF for.

Thyroid is deteriorating very slowly.  Synthroid never does anything except produce numbers on my blood tests.  If I would miss taking a morning dose of synthroid, I am sure I wouldn't notice it.  It never did do anything for any pain or fatigue.

I had definitely low white cells on a recent CBC, but they are back up higher than ever just a few weeks later, which seems weird -- they about doubled in one month, and samples were analyzed at the same lab.

I think I am at a point where I just want my prescriptions refilled, such as they are, and then wait until anything else, specifically breathing and pressure on chest, gets really bad; maybe just have the CBC checked a few times a year.  I have no hope of remission or anything -- it has all been progressive for 8 years.  

Chest pain and scary intermittent shortness of breath can be almost anything - pericardis, bad heart, costochondritis, pleuresy, lung fibrosis, lung cysts, pulmonary hypertension, on and on.  I hardly care any longer, but the shortness of breath is scary at times.  It is not caused by anxiety.

I take:  1800 mg/day gabapentin, 400 mg/day tramadol, 50 mcg synthroid, 10 mg cyclobenzaprine, and 400 mg plaquenil, as well as St. Johns Wort and vitamin D3.  The gabapentin kept me alive for 8 years but I was still was in tremendous pain  -- the recent addition of tramadol has mostly relieved the non-gabapentin pain, which is heaven to finally get some relief  -- I really suffered horribly for years simply with the pain part of the illness.  I am doing the monthly self-exam cancer checks as I was told to do by the doctor.   The cold has awakened the Reynauds, and I am starting to wear winter coats and gloves in the house again, which seems perfectly normal to me now.

I am starting to just stay in my house.  I can still go out for shorter and shorter trips, and can even still drive, but it all is getting sufficiently difficult and painful to do it that I just really enjoy staying home, and especially lying in a comfy bed.  This is not classic agorophobia.

I have this weird thing for years where my forehead has like a cold sweat, and my hands and feet are freezing from Reynauds.  This is normal to me too, very familiar.

Ok, this is me.  I am happy to be here, and have learned a lot of good information from this chat room and forum.  Thanks for the warm welcome and replies.

[Joe S.]

With your chest pain you missed the one that I have. I went in thinking I had a heart attach. You know, pain in chest, left arm, etc. It turned out to be Schatzki's Ring.

The most important thing to remember as long as you live is, to breathe!

[navydad]

Welcome Shelby,, I am sereonegative Sjygrons,, at least that what they tell me,, but I have read over your post a few times and cant much to it except welcome,, I am in constant pain also,, tried every med, and not much came from it,, went to Mayo,, that was worthless,, the only thing I can tell you is this,, Iknow it hurts like he** to move,, I do know,, but you have to do it,, when you stay in bed,, just the added weight to the chest makes it hard to breath let alone the thought of pneumonia settling in
  No,, your not agorophobic,, you sick and just dont want to go anywhere,, and I also cannot tolerate cold,, I think the nerves in my hands have died enough that touching things cold doesnt boher me as much,, but i cant hold onto tools or eating utensils very well,
I am glad your wife is tehre to help you,, and I know the frustrations of going from doctor to doctor,, I;m at teh point where once I fall over,, its not my problem anymore

SS is in my opinion a disease that is considered more of a annoyance then a real problem,,, ya right,, tell that to people like you, me and a bunch of other people on this board,, it feels like your slowly dying,, but please try to get up and move around,, the less you use it,, you will lose it,, there are days I am almost reduced to crawling around,, but I keep tryig,, call me stubborn,, or stupid,, but the pain aint ging to get any better if i;m sitting in a chair,, laying in bed or walking around the hosue,, I drive too,, when its absoulately nexessary,, and thats not often,, I am tired of fisxing teh back wall of the garage where I tried to shove the freezer though witht he car,, I thought I was pushing the brake,, but I wasent pushing hard enough