Sjogren's Syndrome :: (sicca) Syndrome And Dry Eyes
Having been officially diagnosed with Sjogren's syndrome about a year ago, I think back on ALL the diagnoses I have had related to it: "nutcracker esophagus and severe GERD", "esophageal spasms", polyarthritis, fibrotic lymph nodes, fibromyalgia, Prinzmetal angina, benign parotid tumor excision (trabecular adenoma), dry skin, dry mucous membranes, etc. and now know they are all part of the same syndrome, which has been steadily worsening and becoming more malignant (and I am only sixty). There are many other more serious difficulties, but now I'm wondering if I, too, will get non-Hodgkin's lymphoma, since that is what some people progress into. It is NOT that this frightens me at all--but now there is something of which to be aware (and I'm not certain my M.D. knows of this). I also have glaucoma and cataracts--so I really have to protect my eyes (and I have had a vitreous bleed into one of them).
My ophthalmologist (a retinologist) placed upper and lower tear duct plugs in my eyes--which has helped, but I still have to use lubrication. Since I am a writer and use the computer extensively, I find it quite hard on the dry eyes. I am extremely careful to drink lots of water and often mix pure fruit juice with my water to avoid calories (sugar) and to make the water more interesting. This does, however, exacerbate my stress incontinence gained after fracturing my back--for which I stay close to a toilet (but my writing is done at home.)
Sjogren's Syndrome? Dry Eyes Are The Only Symptom I Have
I have had dry eyes for about 2 year now (I also had lasik in 2005). Within the last 4 months my have have gotten really dry. I have all 4 tear ducts plugged and I am on Restasis. I also use sclera lenses (more for vision but also helps the dry eye). My eye dr said he thinks I may have Sjogren's even though I have never has a Schirmer's test (I am not sure how accurate that would be since i have had lasik anyway). tested positive for ANA 1:80 titer with homogeneous pattern but negative for RF and SSa and SSb. Should I pursue this further? Dry eyes are the only symptom I have.
View 40 RepliesSjogren's Syndrome :: No Treatment Options
i have had sjogrens since I was 41 years old, I'm now 74 . I've been told there's nothing can be done for it, it's just as I've got older I ache more and get extremely tired,I do go out walking with my dog to get some exercise, have a sit down , then do a few jobs , then sit down and so forth , sjogrens is not life threatening, but it changes your life completely .but it's nice to keep in touch with people who has this horrible condition.
View 21 RepliesSjogren's Syndrome And Hashimoto Thyroiditis - Dry Eyes
I was tested for Sjogren's due to my eyes being so dry. I was negative for SSA and SSB but my ANA was 1:80 w/ the hemo pattern. I have read that anything less that 1:100 on an ANA test you can rule out CTD. The only symptom I have is dry eyes. Every now and then my feet tingle a little but that has been going on for as long as I can remember. I do have antithyroid antibodies and have been diagnosed with Hashimoto Thyroiditis. So with only the ANA being 1:80 and only really symptom dry eyes (mainly the right one). Do you think I should see a Rheumy Dr?
View 14 RepliesSjogren's Syndrome :: Hormone Replacement Therapy Increases Symptoms (dry Eyes)?
Has anyone heard that HRT increases SS symptoms? I'm on a HRT in the form of a low dose patch. I've been experiencing dry/irritated eyes and read that HRT can make your eyes dryer in addition to the other risks associated w/SS.
View 14 RepliesBlepharitis :: Dry, Stinging, Bloodshot Eyes For 2-3 Months
Earlier this year, I noticed I was blinking a lot more than usual but it wasn't having any negative impact. In the summer I noticed the blinking getting worse and then I went to the optician who said I had moderate dry eye disease. She recommended lubricating drops. Nothing was improving and I went to another optician who said I had Blepharitis. He recommended a warm eye pad and regular cleaning of my lids. This hasn't improved things either. I went to my GP who confirmed the blep and put me on a 4 week course of Doxycycline. I've been on them 3 weeks and guess what, no improvement! It's affecting me quite negatively, have to wear my glasses all the time (previous wearer of lenses for 14 years with no problems). I'm not wearing eye makeup either in case it exacerbates my symptoms. I hate not being able to look groomed, sorry if that's shallow! I'm interested to read that it could be a candida overgrowth, I have suffered fungal infections before. I eat quite well, but suspect there might be a little to much sugar (alcohol etc). My eyelids looks a little red and slightly swollen, my eyes constantly look tired and a little bloodshot, this is worse during the week when I am working at a screen. Any advice at all? I am trying to eat more Omega 3 in my diet as well because I've read this might help. I suspect if it is candida that the antibiotic will be making me worse!
View 133 RepliesPosterior Blepharitis - Bright Red Lid Margins, Bloodshot Eyes
I believe I have posterior bleph since it affects my Meibomian glands and I've had it for around 5/6 years, although I wasn't aware I had the condition until I saw a fantastic independent optician who also has it (note: don't both with any of the 'fast-food' opticians e.g. Specsavers - they haven't got a clue!).
Until recently, I never really had much of a struggle with it - it was generally more of an irritant, but recently it's become worse despite me upping the usual maintenance. My current routine involves the warming bag + cleaning with Blephaclean pads. There used to be an excellent product called Lid Care but they seem to have disappeared now unfortunately. Other than that, I take Omega-3 supps.
My symptoms lately are the usual e.g. soreness, grittiness, bright red lid margins, bloodshot eyes etc. However, recently I'm struggling a bit as I keep developing badly blocked glands that become a little inflamed and uncomfortable - is this quite common with the condition because I've never really had that? If so, does anyone have any alternative methods to counteract it?
Sjogren's? Eyes Don't Produce Tears Anymore
my eyes don't produce tears anymore (haven't cried in years, don't cry when i cut an onion). my mouth is dry. i seem 2 get oral thrush when i go down on this one girl who has problems with yeast infections but as far as i know i am not HIV+. my penis is usually dry too and i need lots of lubrication or lubricated condoms for sex to be good. my knees and ankles and sometimes hips are often sore, especially in the winter, even tho i am only 25 yrs old. could i have sjogren's or some other autoimmune disorder? how could i find out or get tested or treat it?
View 1 RepliesChronic Fatigue Syndrome :: POTS With Sjogren's Syndrome
I have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Beighton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side
View 4 RepliesDentures Due To Sjogren's Syndrome?
My dentist told me today that I need upper dentures due to Sjogren's Syndrome. Has anyone else had to get dentures and how did you deal with it?
View 1 RepliesSjogren's Syndrome :: Sea Buckthorn Oil?
Anybody tried it? I've just started. I'd been reading up on it on-line for some time. It's supposed to be the bee's knees for the whole sicca syndrome, and dry eyes in particular. As I was due to spend a few days in London last week, I debated getting some, but decided it was too expensive.
Then fate took a hand. As I haven't had dry eyes for months now, I didn't take my eye drops with me. That's the trouble with remissions - you forget you've got the wretched condition and get cocky! First night in the place where I stay it was a bit stuffy, so I turned on the air-conditioning for half an hour. One of those individual ones that blows air out fiercely however low you set it. I sat up in bed, facing it, watching the TV for just half an hour before going to sleep, but that was enough. I managed to get replacement eye drops the next morning, but now I'm in big trouble. Decided to invest in the sea buckthorn oil anyway, and have now been taking it for a week.
They say you're supposed to take four capsules a day for the first two weeks then cut down to two, but I'm being careful. Took one a day the first week, will start on two tomorrow and build up to four by the end of the month. I once had a terrifying experience on a low starter dose of Siberian ginseng. Just because something is "natural" doesn't mean it won't harm you!
Sea buckthorn is also said to be good for RA. The main ingredient is Omega 7, btw, but it also has Omega 3, 6 and 9 - though a different type of Omega 3 than fish oil. I'll be interested to see how that works out. I'm actually having an RA flare-up at the moment, but it seems to have peaked since I started my usual homeopathic treatment a few weeks ago. As I'm taking the oil alongside the homeopathic remedies, that will muddy the waters, of course. But I'll stay on the homeopathy for six months because it always works.
I hear you have to wait three months for Omega 7 to kick in, so I may be in for the long haul with the dry eyes. My right eye is already starting to bleed from a crack at the outer corner. We're having high winds here at the moment, which isn't helping things, particularly as my hips and knees have now improved enough to stand a 45-minute walk most days. I finally caved in today, and put on my wrap-around industrial goggles (provided by an optician in the UK). But I feel a right berk wearing them when walking around city streets - especially as it's not considered rude to stare in this country!
Biotene Really Enough To Contain Sjogren's Syndrome?
My mother has been diagnosed with Sjogren's syndrome. Her main symptom is dry mouth and someone recommended us product called Biotene. Is Biotene really enough to contain this syndrome?
View 1 RepliesSjogren's Syndrome :: Often Bladder Infections
I get bladder infections quite often. For the last year I've had 6. I get very sick with them. I run a high fever and am in alot of pain. They last for a couple of weeks. I have to take antibiotics for them and worry about having to take so many. Does anyone else experience this problem or have any suggestions?
View 4 RepliesSjogren's Syndrome? Depression Is A Symptom?
I was wondering whether depression is actually a symptom of this illness. I understand that it is natural to feel depressed when receiving a diagnosis of chronic illness, but my current mental state feels like something much more insidious and severe. I have never felt depressed in this way before, even when I got a diagnosis of another painful AI condition 8 years ago. I also know that mental stress can negatively impact symptoms so it is vital to 'feel better' quickly in order not aggravate the condition. I am not sure how to start to do this and wonder whether systemically something is going on that is affecting my brain chemistry to feel this bad.
View 11 RepliesPossible Sjogren's Syndrome? List Of Symptoms ...
I have had chronic bronchitis/sinusitis for years.
Had sinus surgery due to level of sinus issues.
I don't get a cold, I get bronchitis - pneumonia/pleurisy, etc.
I have cold sores on my lips often.
In june I was diagnosed with an eye ulcer - I have never had any problems with my eyes. Ophthamalogist did test and said my tear ducts have stopped working.
I have blurred vision and my eye sight is deteriorating.
Exhausted
Joint paint
Tingling toes and fingers
Migraines for years
CT of chest shows enlarged lymph node in lower right pre tracheal region 2.5x1.4x0.8 and they want to do another ct in march
sore throat and coughing they just prescribed prilosec for acid reflux and although I've never had heart burn or anything like it, it's working....
I have testing borderline positive for lupus one time and negative the next. 1:80 Homogeneous Pattern
RA factor was -9.0
Igg subclass 3 LOW at 21 everything else normal
No lyme disease
White blood count tends to be a little high
Seg tends to be at about 80%
Lymph tends to be low
SED rate was elevated
CPK was normal
First appt with rheumatologist on the 24 of Feb. any thoughts on what this could be? Sjogren's seems close but I have no dry mouth Would really appreciate it.
Sjogren Syndrome - Living And Coping With It
My daughter was diagnosed with Sjogren's Disease I was just wondering if there is anyone that has this Disease, and to inform me how they are living and coping with pain and day to day living. She is only 20 years of age.
View 1 RepliesSjogren's Syndrome :: Exhausted And Confused
I have been in pain for about 8 years now. Whole body hurts, mainly back, traps and neck. Dry mouth and down there where it matters. I never feel good, cant remember when last I did. Often dizzy, always very tired, I can't exercise at all, used to be a personal trainer and now I can't even walk to the shop. I feel dead and hating every minute of it. Don't have a lot of faith left in doctors as they have been giving me quite the run around. Now, I am on a mission to sort all this out, went for blood test, twice and both times came back positive for Sjogren's, but the Rheumatologist still doesn't think I have it as I don't have dry eyes. Can I have it without dry eyes? I don't even want to ask her questions anymore, seems like you not supposed to ask doctors questions, just sit, listen, accept and feel like poo for the rest of your life. I also have 0.00 testosterone.
View 34 RepliesUnbearable Burning On Top Of My Head, Sjogren's Syndrome
I was told i have Sjogren's syndrome and now about a week ago i got this burning on top of my head and to be honest it is unbearable i need to know what can i do please help me it reach to the stage am always crying the burning is too much it feels like it is going inside my head and also i have alot of face pain.
View 1 RepliesUnder Active Thyroid, Sjogren's Syndrome, IBS And Memory
I was diagnosed with underactive Thyroid 18 months ago by a doctor who was just standing in for my regular doctor, I had been going to the doctors for 2 years with little complaints but nothing was done as I had been on antidepressants. Since starting the Thyroxine 100mg daily I don't feel any better. My doctor even told me depression can do things to the body like the symptoms I am having.
10 months ago I started a new job 3 months into the job my hands began to swell and I have pains in my fingers the doctors took a blood test but said there was nothing wrong however I saw another doctor at my surgery and she referred me to the hospital rheumatology . The specialist took another blood test as the one my doctor took showed an abnormality, she also sent me for several other tests. Once all the tests where back the specialist diagnosed Sjogren's Syndrome and mild rheumatoid Arthritis in two fingers that don't hurt as much as the others! I have been on Naproxen & Plaquenil for 2 months and due to go back to the specialist in September.
But I still don't feel any better!! and my IBS has become worse. I have changed my doctors practice as I have lost confidence in my previous doctors however I am not sure this new practice will be much better!
I had my first appointment with the doctor I told her my symptoms and for the past 3 weeks I have been in pain with IBS, she concentrated on this problem and stated that I should come back again as "10min appointments were not long enough to go through all the issues I have." Told me to book for another blood test which will be next week.
Long and Short- does anyone else relate or recognise these symptoms?
1. For the past few years I have been having problems with my memory. I forget what people have said to me, forget to lock the door, where I have put things what I was going to do next. I have always been a little scatty but it seems to be getting worse and many times it is only other people reminding me that I realise that I have forgotten or not done something.
2. Lethargy, weary even after just waking up but gets worse around lunch time and by tea time I feel like I should be in bed. I have always slept approx 7-8 hours but I don't feel refreshed after sleep.
3. Painful cramps, wind, constipation I will only go to the toilet if I have Movicol or a few halves of Guinness. My urine is dark and sometimes cloudy
4. Dry Skin and itchy spells where I could scratch the skin off, Dry eyes and mouth
5. Aches and stiffness all over and clicking wrists, elbows,shoulders and knees