First, I want to say how glad I am to find this forum. I'd never heard of Sjogren's until about three months ago, and my family and friends all seem to think everything is in my head. I know from reading that many others here have had the same problem.
I am a 46 year old woman, married with three children ages 16 - 23. I work as a school bus driver and educational assistant for 30 hours/week.
A few years back, I went to my GP for a refill on my Rx for IBS. The Dr. saw I'd lost weight and asked me how. I didn't know, it just came off. I was happy about it, and didn't think anything of it. He sent me for tests. And more tests. I wound up with an oncologist who couldn't pinpoint anything, but wanted to send me for staging and offered to start chemo. He suspected NHL, but couldn't prove it other than markers in my blood. I declined, and told him I'd be back if I had any other syptoms. I didn't go back to my GP for years, either.
I've felt for a long time that I had something AI-related going on, probably fibro as I have several friends that have it. I never went in with complaints or to be diagnosed because I drive a school bus, and can't take Rx pain meds or any of the other Rxs my friends were given. I just pushed on through from day to day, and trying to make up for the energy spent on the weekends. It doesn't work all that well, btw.
So last November I woke up one morning with my left eye watering and very painful. I'd had gritty-feeling and painful eyes for over a year, but this was worse, and I could hardly see out of my eye. My boss wouldn't let me drive, so I stopped by my eye doctor's office thinking I had pinkeye or something. He did the slit lamp test and said my eyes were extremely dry. I had ulcers on both corneas, with a really bad one on the left. I knew I had dry eyes, I'd been told years ago by an ophthalmologist. I've never been able to wear contacts, either. I also have a very dry mouth, dry enough that my teeth decayed prematurely, and at 45 years of age I had to have what was left extracted.
The eye doctor (he was new to this particular practice) asked if I'd ever been tested for Sjogren's. I'd never heard of it before. He gave me a Rx sheet with Sjogren's written on it so I could Google it. As soon as I got home, I Googled, and couldn't believe it. Since then, I've been learning SO much.
(cont'd... sorry so long)
When I went back a couple days later, I let my eye doc know that I thought he was on to something. We talked about my symptoms and he said he wanted me to go see my GP. I don't like going to the doctor. Period. I don't unless it's a must for work. But my GP called ME and said he'd gotten a referral and wanted me to come in. So I did.
I was in his office for over 2 and a half hours. They took 10 vials of blood, urine and five x-rays of my lower back. I'd come in prepared with a list of all of my "complaints" and he read it through. He said he thinks there is more than Sjogren's at work, likely an "Overlap of AI disorders affecting the connecting tissues." That's as close as I've gotten to a dx at this point.
The bloodwork all came back clear. Hormone levels were "remarkably good." I was admittedly disappointed because I was hoping for answers, but he said it didn't matter. Positive results would have given us a direction to go in, so we'll just have to do without the map. The xrays showed severe degeneration at L5-S1, and moderate degeneration at L3 and L4. Doc ordered MRIs of my lower spine and brain (because of chronic migraine and the fact that I had a brain tumor removed in 1990.) Because my insurance took forever to approve them, and then they canceled my appoinment so I had to get everything REapproved and rescheduled, it was quite a while before I got my scans.
Results of the brain scan showed lesions in the white matter. From my reading it's probably just from my migraines. Or, if you add in some of the neuro problems I have, it could be something else entirely. When my doctor called, he said he wasn't worried about the MRIs, but wanted me to see a neuro surgeon about my back asap. There is what he called "extremely severe" damage to the L5-S1 facet joints that needs to be fixed if I want to keep working. I asked about the AI stuff and he said, "Let's hold off on that for now and get your back taken care of." Another week's wait and I got a call from the surgeon's office to schedule my consult. When they did call, the earliest appointment they had was April 12th. Ugh.
I called my GP's office to let him know when the appointment was, and to give him an update. I was concerned about my finger prints disappearing, and although I was embarrassed to bring it up, I felt he should know in case it was something the would help with the puzzle. He'd never heard of such a thing, so that was no help. He wasn't pleased with my consult being so far out, but decided to go ahead with a referral to a rheumatologist in the meantime. That was a week ago, I still haven't gotten a call to make an appointment. I think I'll call the GP's office today and see where things are at.
I took the kids to the dentist last week and told him what was going on. He agreed that I likely have Sjogren's due to the condition of my teeth. He never suspected anything AI, however, because I hadn't mentioned any other complaints and because my teeth started decaying from dryness twenty years ago. At one point, he even suspected me of using Meth because my teeth deteriorated so fast despite having the best of care.
So that's three health care professionals that agree on Sjogren's just due to clinical signs and physical damage. But I have a lot of back pain from damage there, and the chronic migraine thing going on, too. I've also had IBS since my early 20's, and what I was told was an overactive bladder. Since I've been reading up on AI issues, I think it would be better described as "Painful Bladder." I cannot stand to have any urine in my bladder. It causes pain. When my bladder is empty, it feels fine. Something to bring up with the rheumatologist because it's a very serious issue for me when driving a school bus.
From what I've read here, it'll probably take a long time to get in to the rheumatologist. The waiting and hurting while I wait is exhausting in itself. I can't whine to anybody on this side of my monitor, so it's SO nice to know there are people here on this side that know what it's like.
Getting a diagnosis of SJS is both a relief and a downer at the same time. It's terrible that we have to work so hard to get it! Waiting is so hard. There are many of us on the forum who have blood tests that keep coming up negative. For me, the only diagnostic sign was a lip biopsy. It was definitive for SJS (relief and downer). There is a discussion topic on losing fingerprints - be sure to search for it. Check out the dryeyeshop.com for products that can help your eyes. I just had my 3rd and 4th gumline cavities filled. Patience is a requirement for these conditions (but then there are the times for direct action!!). Take care.
Hi Smudge
Yes, this is a brilliant place to come. I take my hat off for you being able to continue driving the bus with your back problems. Do you have to drive long distances, or are they short trips?
Have you spoken to your GP yet today?
Kathyx
Dearest Smudge!
Welcome, darling.
And do NOT apologize.
We dump every imaginable thing here.
OK do YOU HAVE Sjogren's?
Do see a doctor and get tested. I have Sicca which is extremely dry eyes and mouth, but I do not test positive for Sjogren's.
There is a blood test and also a lip biopsy for the diagnosis.
OK,I read your second Post.
We sound a lot alike
I have severe degeneration in my back and neck, which causes neuropathy in my hands and legs and feet.
I have interstitial cystitis in my bladder, which causes frequent bladder infections and pain.
I have white matter lesions in the MRI of my brain, which aren't important for me, as they are related to normal aging (I am 68)
I have my teeth cleaned and checked three times a year due to the dryness.
And I had corneal ulcers from contacts when the Sicca (dryness) developed almost 9 years ago.
I have a medication for the dryness in my mouth. I use Systane and Nature's Tears in my eyes.
I keep my sinuses clear so I don't have to breathe through my mouth with Nasonex and Simply Saline nasal spray.
I take Cymbalta for both depression and physical pain, and Oxcarbezapine for pain.
I also take Aleve for pain, and Omeprazole to protect my stomach from the Aleve!
You see Smudge, even if you don't have Sjogren's, you will treat the Sicca a bit as if it were Sjogren's caused.
And the effects of the degeneration of your back is serious and needs to be addressed at the pain and discomfort level.
I am not willing to consider surgery yet but do want to talk to an orthopedist about my neck and back, knee and hands.
I have severe osteoarthritis.
WHINE HERE.
That's what we're here for
WE UNDERSTAND.
Doctors do NOT always understand, trust me
I am and highly educated woman with all the resources in the world. I have run into Rheumatologists that didn't KNOW that half the people with Sjogren's develop interstitial cystitis (inflammation of the bladder) and half the people with IC develop of Sjogren;s
She also didn't know that people with Sjogren's develop of Peripheral Neuropathy. Doctors simply do NOT KNOW.
But people here know tons and tons and tons. (not me, I just hang out and listen).
Many of us don't have straightforward diagnoses.
And even with a straightforward diagnoses, the treatments are varied and depend a lot on each individual.
Just relax, know that you're on the right track now.
Stay tuned.
Keep us posted.
Kisses
Elaine
Dear Smudge just like Carolina we have almost the same story... Welcome, Welcome you will get a lot of your questions answered here for sure!!
Feel Well
Mary
Thank you SO much. I'm so glad to have someplace to voice things where others will understand. :)
Carolina, I hope you don't mind me picking your brain a little?
The having to pee all the time is just horrible. I was told many years ago (by a doctor that did no tests, he was just guessing) that it was "overactive bladder" and given a script for Detrol LA. It didn't help very much, maybe cut down on the frequency by 20% or so, and it was terribly expensive. At the time I didn't know there was any thing else besides overactive bladder that caused similar problems.
Lately I've been reading more, of course, and I'm not sure if it's overactive bladder or something else, like IC. I was hoping you could share a little more with me, or at least give your opinion?
I have to pee 20 to 24 times in a day. I get up several times a night to pee, but I CAN sleep through on a rare occasion if I take a sleeping pill and knock myself out. I always have trace amounts of blood in my urine when tested for my annual DOT physical. This has gone on for years.
I have NO incontinence issues. I've never leaked or wet myself, but I feel like I might sometimes.
If there is ANY urine in my bladder, my bladder feels full and I have to pee. I can go from just having emptied my bladder to a full bladder in the course of 10 minutes if I've had something to drink before noon. It's always worse in the morning than the afternoon/evening.
Consequently, I keep my self slightly dehydrated to cut down on trips to the bathroom. I don't drink a thing between 7pm and 9am (after my morning bus route.) I've had to cut out trips on the bus because I can't stop for restroom breaks. My morning route is approx. an hour, and that's as long as I can go after withholding liquids. I empty my bladder just before leaving for my route and as soon as I get back.
My fluid intake is approximately 36oz/day. Any more and I'm up all night long.
My kidneys were tested a few years ago, but not because of the urinary problem. I was being tested for cancer and they did a test to see how fast my kidneys passed fluids through. In the test, I was given a dye concoction to drink while on x-ray (I don't remember what the test was called.) The liquid went straight through to my bladder so fast the tech called other people in to watch. Nothing ever came of it.
If I drink, say, a cup of tea, starting with a totally empty bladder, I have to use the restroom before the cup of tea is gone. If I wait, my bladder will be aching and my eyes watering before I've finished. If I hold it too long, I develop a UTI and I have to pee even more often. When it's empty, It's totally fine (unless I have a UTI.)
Carolina, or anyone, for that matter, does that sound like overactive bladder or am I calling it by the wrong name? I also have IBS, and when that flares, I'm a mess and life is sheer he!!, which is at least once a week or more.
I almost forgot! I got my rheumatologist appointment yesterday! It's next Thursday, the 10th! Whoot!! ;D ;D ;D
Smudge
I'm no expert, but I have some experience of bladder problems, having had a bladder repair last summer, and having had to self-catheterise for a while.
At one time, I was feeling like I needed to pee all the time, even when I had just been. Turned out that I was retaining over 400 mls due to a large cystocele. This was fixed last summer. My suggestions to you would be to do an inut and output diary over a couple of days to see how much your bladder is holding. You can have proper uro-dynamic tests that do this, and scan your bladder when you have had a pee, but doing your own chart might tell you more. And a urologist would only ask you to do that to start with.
I'm doing fine now, although when I need to go, I get a burning/sore feeling, but I've been told I have a slight urethrocele, so that could be the cause for me.
Would be interested to know your thoughts.
Hugs
Kathyx
Well, Smudge,
IC is diagnosed by a bladder cystoscopy, which is done out patient.
The biggest issue is that there isn't really any treatment for it. I mean you can read up on it, and there's a
drug (Elmiron, which sounds like a bad country song title) but it isn't that effective. I turned up allergic to it anyway.
The key is you should maybe ask if that possible? And get a diagnosis. Cause it can get worse and be scary. But it usually doesn't, of course.
Mine is only bad if I have a UTI.
But some people have the problem with peeing constantly so badly that their life is disrupted completely. It has been compared to life disruption of end stage renal disease. I dunno,, cause I don't have it very badly.
So I HAVE an IC diagnosis from observation of my bladder. But I'm sero negative for Sjogren's.
And it turns out that all of the PN that I have (peripheral neuropathy) is from nerve damage due to deterioration of my spine, particularly my neck.
And here I was thinking it was a continuation of the Autoimmune conditions that I never test positive for anyway.
Go figure
I do have dry eye and dry mouth, and my first rheumatologist called it Sjogren's. But now I think probably it's not. It doesn't seem to make much difference.
The meds I take manage it pretty well (the dryness), and I manage to pain of everything else OK most of the time.
Now I want to see an orthopedist to discuss the options related to my neck.
I'm the last person to want spinal surgery. But if it would reverse my numb feet, and legs, and stop some of my pain, I might give it a shot.
I guess it's just so iffy. Doesn't work a lot of the time, and sometimes makes things worse, even.
I dunno.
just keep chatting and doing research. And generally, if possible with three kids and major job requirements, try to RELAX.
This is a process, Smudge. And lots to be learned and experienced along the way.
Hang in there.
Keep us posted.
Kisses
Elaine
Thank you, Carolina. I appreciate the time you've taken to help.
I'm one of those whose frequent trips to the bathroom are ruining things. I have to plan every single day around where I will be and when and how much fluid I've had and where the bathrooms are located. My own personal he!! is living in a small house with three teenagers and ONE bathroom. LOL
I have a consult with a neurosurgeon in April. One of my first thoughts was, if he decides to operate on my back, I'll have a catheter for a little while and won't have to use the bathroom! Sad. Especially when I know once that catheter is removed, my bladder will be irritated and I'll pay for it dearly.
This will be one of the main points I bring up with the Rheumy. I have a long list of equally annoying problems, and I'm afraid I won't know where to start. When I gave my list to the GP, he went directly to the damage in my spine and acted as though the rest didn't exist. And quite honestly, the bladder thing and the IBS disrupt my life overall just as much as my back does. I don't blame him, though. The MRI showing the damage was something tangible he could help with. The rest, not so much.
Thanks again and have a great weekend!
Smudge, Welcome to sjogrens world. I am glad that you are getting some answers to your health problems and that everyone is working hard to get you diagnosed and operated on.
The bladder thing is interesting. I have had trigonitis over the years and it is very painful. My urine always tested negative for infection but yet I would have pain and have to urinate a lot. I also had a lot of back pain from it. The trigone is a small triangular shaped piece of tissue that lies at the very bottom of the bladder just above the little valve between the bladder and the urethra. (the tube that transports the urine from the bladder when you urinate).
In trigonitis this little piece of tissue gets inflammed and causes the feeling of needing to empty the bladder. There are different methods of treating this. I had mine treated several times and it was better, but never totally gone. When I started my zoloft 20 years ago my trigonitis problems disappeared and have not returned since.
I had talked to some doctors about this and they told me that people can have trigonitis without having the symptoms of pain and the need to void. My feeling is that the zoloft decreased the message from my bladder to my brain. All I know is that I was and am very happy. Trigonitis is walking around gritting your teeth all day and you don't even realize it.
If this is what you have I would bet that you would need some bladder instillations. Silver nitrate is often used to help clean up the trigones scabby issues. It is somewhat painful when you have to hold the silver nitrate (argyrol) for an hour or so but the treatments really help. I think I had them for 5 days in a row. I would advise you to see a good urologist who deals in womens issues if possible. I am also of the opinion that this condition is autoimmun in origin. Good luck. Irish ;D
Thank you, Irish. I'll definitely be seeking answers at my next appointment, and this will give me some direction. I'll be reading up in the meantime. :)
Hi
Smudge,
I don't have a lot of time to read the full story but I did read a part of it.
I'll get back at it later.:)
Just wanted to welcome you to the boards and hope you'll find a diagnosis very soon.
I know how stressing it can be, knowing something is wrong with your body.-
And you're just looking for confirmation that there is indeed soemthing going+What.
Hugs!
You have found yourself a great place here with lots of information and lovely, helpful people. ;D
Another thing I want to post, I saw you mentioned that you have an overactive bladder?
Or well, that's what they thought.
This is what my Rheumatologist is suspecting aswell.
I'm getting my Cystometry on the 21st but my Rheumy has not mentioned what he thinks it might be-
After seeing the results of my Uroflow test.
He seemed quite concerned.
I have issues such as frequent urinating, especially at night.
I sometimes need to go many times after eachother and only little bits.(Like having an Uti)
My bladder-lower tummy also always hurts, but it hurts more when my bladder is getting filled/full with urine.
I do think my case is something such as 'Painful bladder syndrom' or also known as Interstitial Cystitis.
Thank you, Shani. I appreciate your input. I'm thinking I've got a chronic irritation of some kind going as well, different than spasms. I have an anti-spasmodic to take for IBS and OB, but it doesn't help the frequent urination at all. I have a very long list to present to the rheumy. I've tried to narrow it down to just those things that affect my everyday life, and what I'm doing to cope.
I called my GP's office this morning and they're faxing me the test results I got back in December. They'd already forwarded them, but I want a copy as well. The clinic lost my 20+ year old medical file, so I'm starting over. ::) And from here out, I'm keeping copies of everything.
Hi Smudge - welcome.
As you have seen, our members are very helpful in sharing their experiences, product ideas, etc. with other fellow Sjogren's members.
This Sjogren's road we all travel is easier when we know others share our struggles, trials and frustrations dealing with this disease. A disease that many don't understand - doctors included.
When you come here, understand we "get it". ;)
I hope you find this site helpful to you on your Sjogren's journey.
Bucky
Smudge,
1st, never worry about writing too much. ;) It's good to get background on people. You'll find great info. here and lots of people who understand. I think that's one of the best things about this forum.
Most of us have either thought we were crazy or been told so before we got some answers. Your story sounds similar to mine, too. My eyes were really bothering me over a few weeks time. I thought it was because it was winter and I was working overtime (under bright lights and on a computer all day). One day I finally had to leave work early because I felt pain in both eyes, they were very red and swelling around them. I got to an opthamologist who told me my eyes were extremely dry, so much that the corneas were scratched. She said they "looked like I'd taken a Brillo pad to them." :P And so began my journey...
I'm glad you are getting into a rhuematologist this week. That's great! I'd advise you take all those med. history reports and write down some questions first. Try to be short and to the point...that's the way they seem to like it.
Please keep us updated about your appt. Feel free to ask anything and vent or whine anytime. We support and encourage one another.
Take care and again, welcome!
Melinda