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I have had symptoms of sjogrens for past two years. I have been to multiple doctors, for dry eyes, mouth, dry skin, cracked lips, chronic fatigue, anxiety, depression, stomach issues, insomnia and hair falling out. I went to a rheumatologist and all my test came out good. My rheumatologist referred me to ear, nose and throats specialist. He said he could do a lip biopsy, but I didn't want to go through the procedure due to infection or complications. I have been researching this disease and reading forums, and have become very depressed and can't stop crying. I am having a hard time accepting all this. I have always been a strong person, but I feel like I have no strength right now and I'm losing all hope,
2 likes, 17 replies
tj268 dianne12100
Posted
Hello dianne, I am so sorry to hear what you are going through but do not feel alone because it happens to sooo many of us! Un dx, miss dx, etc. I am curious to what tests your drs ran....like ANA, ESR, and more. Many times you can not have a postive and still have SS.The lip biopsy is controversial and imo can be risky because of so many nerves there. I didn't do it but many have. What did the rheumy seem to think it was? Are you taking any meds or eyedrops?
lily65668 tj268
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Hi TJ! Good to hear from you again. How're you doing? No more nosebleeds I hope. And how is the new diabetes treatment working out?
tj268 lily65668
Posted
Hello lily !!!!!!!!!!! SO nice to hear fromm you too! My insulin is working wonderfully but still so many problems. It's like when I have a good day it is really good and the same fot the bad. No killer nosebleeds
Have a nasty uti and was using my walker,couldn't bend my neck etc. Tons of joint mucle pain and really dry eyes. The funny thing is I am not complaining and have a pretty good outlook knowing it's something I just have to deal with. Things can always be worse. How are YOU doing?? Please let me know when you have time to write back
Hope you and everyone here is having a pain free day!
lily65668 tj268
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Hi TJ. Sorry to hear you're going through the mill at the moment. How do you manage to stay so upbeat?! Glad you haven't had any more of those awful nosebleeds though. Glad too that the new insulin system suits you.
I'm OK. Had an attack of positional vertigo (BPPV) the first 2 months of this year. That's the one where the crystals in your inner ear get displaced and tell your brain your environment is spinning violently etc. I don't think it was SS related. Fortunately, my GP sent me to a wonderful vestibular physiotherapist who fixed me completely with the Epley manoeuvre.
Now I've gone down with a really bad respiratory infection - cough, sore throat, sinusitus, headaches etc. Been going on for 3 weeks now, every time I think it's over the darned thing comes back! Haven't had so much as a cold for 14 years (!) so I'm a very bad patient, as you can imagine.
A bit of a problem with my tendons at the moment, at least I think that's what it is. The thing that's been going on in both arms for several years now seems to have spread to one leg. I keep getting severe pain, with a feeling of something "caught" somewhere and pulling from ankle to hip. When I waggle the arm or leg about I eventually feel - and almost hear - a kind of pop, then it's OK till next time. Not so funny in my leg though - I've fallen over twice while walking in the street when my whole leg kind of locked. Don't think it's the hip joint, as it's completely different from the pain and sensations I've had in RA flare-ups. Anyway, I have to see my doctor next week as I'm nearly out of thyroxine tablets so I'll get him to have a look at it all. I don't doubt it'll go away again if I wait long enough - I usually find my assorted flare-ups sort themselves out eventually!
Apart from that and a bit of peripheral neuropathy I'm fine. My optometrist recommended some new OTC eyedrops for the dry eyes and they're near-miraculous, I only have to use them 2-3x per day. They contain trehalose and sodium hyaluronate - and no preservatives, which is great.
I really hope you'll be feeling better soon. I often think about you.
Much love,
Lily
tj268 lily65668
Posted
Oh lily, that doesn't sound ok
Actually that sounds awful 
So sorry you are getting by all of that at once! # weeks is a long time for a respiratory infection...I can't imagine how frustrating that is for you...geeze! Your ankle and leg and hip sound very scary. I have fallen a couple times and know it's scary but with you having this happen more frequently I just feel bad for you! My dad had something like that and 2 days ago received a Cortizone shot because his pills didn't work...maybe you can inquire? They said it was possibly his tendons were strained. What OTC drops are you using? I am using Visine I think about 3 times a day. It's funny too because I never had this sympton until about a month ago and now it feels like I always have grit or something in my eyes. Hoping it wasnt because of SS , my dr stained my eyes and they were fine. I tried to deny but is SS...argggggg!!! But anyway, aside from all the multiple problems we are having, I do try to stay up beat. I think of my sister who had a kidney transplant at 41, and loved who have had cancer. Im not saying it makes me feel better but that it makes me appreciate each day a little more. BUT believe me, when I am in a full on flare from SS or my HS- to wear I can't move my arm, hand legs, when I can't walk or feel like I am choking to death on my food----my outlook is different and I tend to invent new swear words and cry a lot. We ll need to release our emotions at some point. Just please know I am here for you whenever you need to talk or vent or celebrate a pain free day! I will pm you my email also. Take care and let me know the results please 
Your friend and partner in ss-JA
tj268
Posted
frustrated61 tj268
Posted
Hi tj
~
I saw that you use otc visine. Is that helping your problem? I use refresh liquigel 4 times an hour and then at night, refresh nighttime ointment. I've had pretty good luck with that...I also use autologous serum eye drops 4 times a day.
Best of luck!
Frustrated
lily65668 tj268
Posted
Oh it's not so bad, TJ - and nothing at all in comparison to what you're suffering. The throat thing will go away, and my pharmacist has now given me some homocysteine tablets for it. They're much better at thinning down the solid gunk (yuk!) oozing down into my throat than the bromhexine I was taking before.
Not mad keen on the idea of cortisone shots, and in any case I'm not sure where they'd inject it in my leg. When the pain starts, it feels like it's pulling all the way down. Still, I have a fantastic GP - far better and more knowledgeable than the rheumy I saw years ago - so I'll tell him all about it when I see him.
My goodness, you're having problems swallowing too! I'm still OK with that, provided I remember to take small mouthfuls, chew them well and - in the case of bread or potato - make quite sure I wait till the last mouthful has gone all the way down before I take another one. Being greedy and a fast eater, I sometimes fall foul of that one! One day the other week a bit of bread got stuck for several hours. I could feel it about 1/3 of the way down my oesophagus. I thought I might have to go to the hospital when it hadn't moved after the first hour or so, but I just kept taking tiny sips of hot water and it eventually broke down enough to move through. Phew! For anyone else reading this - if this happens it's quite safe to take SMALL sips of hot WATER. But no big gulps, and absolutely nothing with milk or sugar in it, in case it backs up and overflows into the trachea. A tiny drop of water going down the wrong way will make you splutter but it won't do any harm. A big cup of coffee with milk and sugar, on the other hand...!
I doubt whether it would be worth mentioning the brand name of the eyedrops, as they're made in Poland, somewhat surprisingly, and I don't think the brand would be available stateside. That's why I mentioned the formula - trehalose and sodium hyaluronate. They also do a version with carbomer gel in it that you can use at night. That's reassuring. I don't normally have any problems overnight, but if I ever did I'd know what to use.
If anyone in UK/Europe wants details I'll be happy to send the product name and link by private message.
Closing down now as it's nearly midnight here. Good night!
tj268 frustrated61
Posted
Hello frustrated..great name btw
...yes I am in the US and use visine. It helps quite a bit and I am thankful its not another prescription 
I don't think my eyes are nearly as bad as yours but I hope it is working for you!
lily65668 dianne12100
Posted
Hi Dianne,
Welcome on board! Sorry to hear you're going through a bad patch at the moment, but if it is indeed Sjogren's there's no cause for despair. Only a small proportion of sufferers get it very badly. Unfortunately, sites like this one can give the impression everyone with it is very ill, but that's because forums on any illness are naturally more likely to attract those who are most seriously affected.
Many of us are let down quite lightly by the condition. I got the first symptoms 22 years ago, and was finally diagnosed 12 years ago, which is about par for the course I'm afraid. In my case, the disease has only advanced very slowly, with a few remission periods too, when my symptoms have been barely noticeable. That's true for quite a lot of people on here, though some have been less fortunate.
Like a few others on here, I would question the usefulness of a lip biopsy. I only saw a rheumatologist once, and decided against it when it was offered. It's not a very pleasant procedure, there's a small risk of permanent nerve damage (one or two cases on here) but more to the point, it's often inconclusive. We have a lot of people on these boards who clearly have Sjogrens, but who had a negative lip biopsy.
However, if you're set on having immunosuppressant drugs, then it's my understanding that you more or less have to have a positive lip biopsy. (I'm sure someone will correct me if I'm wrong.)
Have you tried treating your symptoms separately? Many of us find that's a more useful approach. And I'm assuming the more serious ones, like the "stomach issues" you mention have been investigated to make sure there's nothing else going on.
I also assume you've had blood tests for thyroid function, as an underactive thyroid is a frequent cause of hair loss. Sjogren's - like many other autoimmune conditions - can attack the thyroid. Hypothyroidism also causes dry skin, fatigue and depression. It's easily treated by taking a daily dose of synthetic thyroid hormone for life. This made a big difference to me when I was put on it 7 years ago. The hair I'd already lost didn't re-grow, but it stopped further losses and generally brightened me up.
Please don't allow this to overwhelm you. Many of us with Sjogren's live normal lives, albeit with a few annoyances and general aches and pains.
I'm also wondering how old you are. Some of the symptoms you describe could be down to the menopause.
Tumtum1963 dianne12100
Posted
Hi Dianne,
while its true that for some, these autoimmune diseases such as Sjögren's, MS, Lupus and RA can allrelapse and remit - and some have them mildly - I think that the need to be believed and treated can be really profound. And I can see that in your case the uncertainty is driving you into depression - and also your symptoms obviously are impacting badly on your life. This is my experience of Sjögren's but I have found that having a firm diagnosis has helped me enormously. I was previously diagnosed with RA but this changed last year, when my ANA showed clear positive and I had a lip biopsy which was 100% positive. So I was rediagnosed with primary Sjögren's.
I had already tried 3 immunesuppressants and Hydroxichloraquine and had severe allergic reactions. I'm now doing well on Mycophenolate (Cellcept in the US), another immunesuppressant. I'm also finding that the autoimmune protocol diet is helping me. I have Hypothyroidism too and I think I've probably had Sjogren's and Hashimoto's since I was young - which may be why my lip biopsy result was so conclusive. I'd previously bailed out of getting it done several times but I'm very glad that I did have it done the end.
brenwag68 dianne12100
Posted
Hi Dianne,
so sorry for your ordeal... hope you can be encouraged by the hopeful advice on this forum... it sure has helped me... I hope this will help you, I have sjogrens & UCTD... my blood work sometimes shows that I have these diseases while other times it shows that I do not & my blood work is fine... I had the lip biopsy but it came back inconclusive because I have so much scar tissue on my lips due to extreme dryness... so be assured that even though it does not show in your blood work that you have the disease doesn't mean that you do not, you are not going crazy, your disease is real, just hope you can find a good doctor... I have been to sooooo many, they all have their own opinions, so I just keep searching... take care & keep your spirits up... you always have "friends" here to help... 😊
Megheart dianne12100
Posted
Hello Diane,
As someone else has said, when a confirmed diagnosis is not forthcoming due to negative blood results, treating the individual symptoms is the way forward. For instance has your opthamologist done a Schirmers test? If so, and the results show dry eyes I'm sure he or she would then advise the appropriate eye care.
Depending on what your stomach symptoms are, a gastroenterologist may uncover for example, delayed GI motility......and then treat accordingly etc.
As someone else has said getting a confirmed diagnosis really validates all the symptoms one is experiencing. For this reason I think getting a diagnosis is so important. For me it took eight years to get postively diagnosed.....I got sick in 2007 (and remained sick) and my Sjögren's markers were all negative at that time. However in 2015 when I asked for them to be done again they (ANA, anti Ro's etc) were unquestionably positive. I don't know when those markers actually rose in those intervening years as those specific SS blood tests were not repeated until 2015.
So keep hanging in there and eventually something will reveal itself. I agree it is miserable when it seems that no-one believes you, as we know our bodies best.
frustrated61 dianne12100
Posted
Hi Dianne ~
I was dx'd with Sjogrens in 2013, however, I had symptoms at least two yrs prior. My eyes became so bad that I was in fear of losing my sight. I mean, my eyelids would stick to my eyeballs while sleeping and that was with ointment. My mouth and nose were so terribly dry as well. In addition, I have stage 4 Sarcoidosis which does mimic some of the Sjogren's symptoms.
In any case, you will find the right dr but don't give up!! I finally said to my eye doc that I want a referral to see so and so at the Kelloggs Eye Care because that's all that center works on...eyeballs :P Upon my first visit, the cornea specialist said my corneas were so dry...no kidding, I said to myself, here we go again another coo-coo doc. But, I was totally wrong about that. He hooked me up with some awesome drops and ointment and I used it for 2 days and I felt wonderful. That's how long it lasted 2 days.
I did go right back in on day 3 and he said according to my history with sarocidosis and all the symptoms I'm displaying, he did a test and yes, indeed, I have Sjogrens. I did see a specialist he referred me to in that same building. I had to promise to see her for 6 weeks 3 times a week or she wouldn't bother. So after the agreement, she started introducing the "Prose Lens" and the process was long but omgosh, it was what I needed..the lenses keep your eyes moist all day plus I have 20/20 vision...I haven't had that since High School! The only downside with the lenses is that if the white of your eyes are red, you cannot wear them. If they continue to stay red for 3 or more days, get in and make sure it's not an infection.
Anyway, dealing with any (AD) autoimmune disease, is not an easy task. The thing about it that is so frustrating, ppl with AD usually look fine so people think it's all in our head. I say, flibbitdiieey to them! I am tired of explaining that I'm not a healthy person and if that bothers them, then they aren't my friends. So here I sit all alone bhahahaha! (
) humor is always important!
Anyway, I hope you can take something from all who have written you and perhaps make a decison to see a cornea specialist.
Warm regards,
Frustrated
tj268 frustrated61
Posted