My gp diagnosed me with Sjogrens in January after seeing a Dr in the UK while visiting my parents last year, he suggested I visit my gp & mention this when got home, however because my bloods didn't show anything the Rheumatologist would only diagnose sicca ( never mind Mt tooth that snapped off) so have to have blood test every 6 months "until something appears" he said.
What I want to ask is my L eye is the driest & Im having trouble focusing & my vision is blurred for a while.
Is this normal with Sjogrens. I'm taking Thera capsules, using hylo forte & systane eye drops & ointment at night but wake up at least three times to put eye drops in & drink.
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Persiankiwi
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Hi..yes that definitely sounds like you do have sjogrens as focusing and blurred vision is a huge problem for me...i was finally diagnosed after almost 5 years, as as with you my blood wasnt showing that i had sjogrens until then. Hilo forte have been the best eye drops for me and the gel at night time and i too wake up lots with painful eyes and often have to put more of the gel in to get back to sleep. Hope this is helpful to you, rather frustrating for you i do sympathize!😏
I have sjogrens as a secondary condition, RA being the primary. I went through nearly two years with dry eyes affecting my vision so badly I thought I was going blind. I was under Moorfeild hospital when my consultant suggested I try Cyclosporine, at the time I had to buy from Turkey as you could not buy in the Uk. However it is now available on prescription and it has been my saviour.
The trouble with getting Sjögren's diagnosed is that there are only two tests that rheumatolgists will accept as definitive if you don't already have a rheumatic disease.
After 5 years of being misdiagnosed and treated for RA with secondary Sjögren's - my ANA, IgG and IgA all showed clear positive (it probably always was but all the RA drugs skewed it) and so I agreed to have a lip biopsy - which was 100% positive. I was then told that the Sjögren's was my primary disease and it had mimicked RA for a few years.
I've had dry eyes since I was a kid and poor teeth too so these really are just an ongoing nuisance but I manage them pretty effectively. Sjögren's is a systemic disease so just the Sicca symptoms alone aren't enough to achieve diagnosis. It has to show in your blood or by lip biopsy - and sometimes early lip biopsy won't show positive either as the lymphocytes won't have yet invaded your salivary glands and there is a small risk of this procedure making the affected part of your lip numb.
Topical meds are probably the best thing anyway and I have Hyloforte, Celluvisc and best of all, Artlelac gel which I use during the day for longer lasting effect. I use lacrilube at night. I also find using a gel eye pad which I warm up everyday in the microwave and wear lying down for 15 minutes, very soothing. Afterwards I use a silicon eye massaging tool to ease my Mybomean Eye Disease.
For me the worse aspect of Sjögren's is the severe neuropathic pain in all my limbs and face. Also the GI problems. Tinnitus, dry eyes and dry mouth are all just nuisance symptoms I have to keep on top of by carrying round my Sicca kit to work and on work related trips. But you can buy artelac gel over the counter in some opticians or order a tube to see if it helps.
Hi, thanks for advice. When you say neuropathic pain, what exactly, tingling or shock pain ?
Had a work accident two years ago, fractured ribs, back, whiplash & elbow, rotor cuff injury left me with fibromyalgia, back spasms, electric shock type pain in twenty areas, including L Jaw & up my ear, tinnitus comes & goes, fuzzy soles of my feet & my hands go absolutely numb if I lie down ( sleep or MRI) also metallic taste & can smell smoke ( no one else can) Had ibs & migraines since teenager. Also got severe brain fog, thought it was dementia but MRI says not.
Sounds absolutely awful. But not necessarily autoimmune as this usually shows as high inflammation levels in blood ((ESR/PV and CRP) - are your markers raised or high do you know?
I don't believe in benign pain. But I also think most pain has a mechanical rather than a systemic cause. Have you had nerve conduction studies done at all? So are you feeling that this terrible accident has triggered autoimmunity perhaps? Because multiple nerve entrapment might otherwise explain.
There was a programme the other night on BBC called Doctor in the House where a doctor stays with families struggling with severe health problems and tries to help them by looking at every aspect of their lives. There was this women - mother of two kids and night worker hubby. Their whole existence revolved around this poor woman's cluster headaches and after five minutes you could see just why these are known as "suicide headaches" - seeing curled on the ground her on the ground screaming and having spasms while her husband and young kids held he hand abs rubbed her back was just terrible. Anyway it turned out that being passenger in a car accidevt at age 15 had caused her cervical spine to curve the wrong way. But no doctor had ever managed to identify this until the doc in the house sent her to a neuro chiropractor who showed them x-ray from the side profile. The doc adapted her diet and the chiropractor worked closely with her and by the end of the programme she had got these suicide headaches down from 76 a week to 4 or 5 a week. So this confirmed to me that doctors need to work far harder on finding the cause of pain and other symptoms before doling out diagnosis such as Fibro and CRPD.
Mine is classic Sjögren's small fibre (SFN) neuropathy - one of the worst types of pain I feel. It's burning and cold/ wet tingle and crawling all same time - like a gripping scalding toothache in my feet and legs and same in my gums, lips and sometimes my hands and arms.
Used to get the shooting pain mostly in fingers, knuckles and wrists but don't anymore. I'm on an immunesuppresant and other meds for Raynauds, reflux, gastritis constipation etc too. For me dry eyes and mouth are just a big nuisance. X
Hi, sounds interesting cost too much to have dr to do this in Australia especially with our government. Bloods didn't show anything unusual, had two nerve studies, sleep study, MRI for ms & dementia, all clear except for two bulging discs but neurosurgeon says not impinging anything. The soles of my feet burn & legs weak, feel like have something hanging off my skirt touching my legs but nothing there, can't pull myself up slopes but stairs bit easier. Up until accident was running 6k every day & doing 4 spin classes a week then wham haven't got energy to have shower some days. Just wish could get back to how I was.
Hi it sounds as though you may have had a closed TBI. MRI scans can only show major things like bleeding, swelling, shrinkage and not the micro/nerve damage that means our brains have a major job reorganising the ship! Your (subconscious) brain is not doing all this for fun - it perforce must interfere with what your conscious brain wants to do. In my experience if you cooperate it gives you the best deal and doesn't 'pull the plug' so easily (make you sleep). Once something like this is labeled 'neurological the irony is that the Neurologist cannot do any more....
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It's weird TTs, but I was trying to sleep the other morning and it felt like someone was driving a spike through my forehead above my left eye.. I get the tingling and pain in my legs too but that was a new one. I ended up taking something stronger to get past it. Do you ever do that? It's only happened one time (thank Goodness) so I haven't hiked out to the doc yet.. Just wondered if it was normal with Sjogrens....
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I've had similar once or twice. Just replied again to this post above describing mine. Nerve pain is the worst I feel x
Hi, not sure where you are but in Australia you can see a specialist who can prescribe Cyclosporine eye drops (Restasis). They have to have special Government approval and be for severe dry eye but they work for a lot of people. I was having very severe dry eye symptoms and using eye gels through the day, now I rarely need additional drops other than one Restasis drop morning and night. Vision can still be blurred at times, especially when you are tired or stress. Good luck
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