Why is it every illness seems to bring complications with sjorgens? on top of Shingles, I've now got Bells Paulsy. Was pulled in dramatically quickly yesterday to see the doc , they seemed to think I had a stroke....I haven't . Half of my face where I have shingles rashes etc, seems to be paralysed. My left eye is permanently open as a result. Not great with dry eyes ( my left has virtually no tear function left on Shirmers Test) . I was told to wear a patch until I recover , assuming this goes.
Should I be seeing an optician re this? Get the impression the doctor treats this as a one size fits all. Been thrown a mega dose of steroids to deal with it. I have to go back for a follow up with GP in about 2 weeks. Any questions I should fire at GP at that stage?
I am now officially fed up. All the joint pain isn't good, as I am not moving around so much, going a bit stir crazy. Can't drive, eat, drink easily or it seems sleep with steroids in my body very well. What's left????
At least the agonising pain of Shingles seems to be wearing off, but the extra 20 tablets a day are hard to manage on top of everything else.
Really fed up , as every day is sunny at the moment and I can't get into the garden to enjoy the sun. Light sensitivity will make shingles worse apparently. Of course the family find it highly amusing me wandering around looking like an extra from pirates of the Caribbean , with all the face rashes for extra effect.
Yet another curveball, oh well keep calm and carry on I guess!?!
Claire
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25clai
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You poor thing Claire , i really hope it clears up soon . Its horrible when you are hit with one thing after another. Can you enjoy the sun with sun block on ?? Sending you lots best wishes 💐💐💐💐
Thanks for your reply, Weathervane. I am hoping for a swift recovery, but docs don't know. I can't even put on sunblock and go outside, as the rashes are painful and it can make shingles worse apparently. Something I really don't want to risk. Wouldn't wish this on my worst enemy.....
I think you know, as many others do too, how soul destroying one health problem on top of another can be. I hope you're doing ok.
Aaah claire , its hard to be positive but you do have to be as its the only thing that keeps you going . I keep my sense of humour, read lots of books and veg out with crime thrillers on tv when not fit for much else . I don't like to worry my boys as forsome reason they are very sensitive to when its a bad day. So im sending you all my positive thoughts and wishes as im feeling not to bad , and i hope they pick you up xxxxx🌸🌸🌸
An optI Cian won't do much, maybe you need a referral to a Neurologist because Bells Pauley effects the nerves. Try taking Black Seed Oil it's fixed everything I had so far and I have only been on it 3 months.
Thanks Beverly, I took you up on the idea of black seed oil, I like you can only take the am dose, but I am nearly 4 weeks into it and I can see a difference, so have been taking it , hoping it will increase benefits over time, but I am so pleased with it for 1 reason, I have spent ages dealing with debilitating low sodium levels, and you were right, it seems to be help it me to regulate BP. Thank you!
What an awful combination to have on top of Sjögren's Claire. And why are your family laughing at you over this - cheeky beggars they should step in your shoes for five minutes?! I had Bell's Palsy many moons ago and it was horrid. But eventually it went away and then other rubbish superseded it. I hope your doctors are good and know about the neurological manifestations of Sjögren's? Fingers crossed the steroids really help. X
Thank you Twitchytoes, sorry to hear you've been through this bells paulsy dreadful experience. I'm trying everything to keep my eye protected / moist, but it's hard. My GPs have been dismissive about the eye care for this , in spite of me pointing out I can't do much to find shields etc myself, had hoped for a prescription . They told me to go to my optician , who thankfully gave me a clear eye shield with vents in it for moisture , so that's helpful, but for further support they. Said back to GP. I'm going to see how it got over the weekend, but I am tempted to roll up at the emergency eye clinic at the hospital where my rheumatologist is based, and see if I can engineer a follow up with her in light of everything. She is aware in any case, as the GP wanted to check the meds she prescribed on top of the steroids he wanted to prescribe. I think my GPs are not specialists on chronic neurological complaints , so I reckon back to rheumatologist, unless you have any bright ideas?!
I was going to suggest going to the emergency eye clinic as well ! It must be very frustrating for you as no one is taking responsibility for this part of your care . I hope that the bells palsy settles down soon along with the shingles xxx
Thanks Weathervane, I'm definitely going to emergency eye clinic, but early next week, as I will be no longer contagious with shingles, assuming no more rashes develop. Feel like I can manage my eye for next 48 hrs, but if anything changes , I will be straight off. Really need my GP to call them, as they are on a completely different IT system, and won't have access to GPs notes etc. ss my heads not straight, it would be good for them to have a clue before I roll up.
I've checked NICE guidelines , and it is listed as part of the treatment plan to refer to eye clinic......I'm not going to be fobbed off anymore. Your comments have given me more confidence to do this, I thank you!
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newly diagnosed with SS. i live in scotland uk
Optimel Manuka eye drops and gels
Should I fight to have this taken seriously?
A cold Kiwi with Raynaud's and now Sjogren's syndrome, needs help..?
Sjogrens or not?