As from my eatlier posts ive been suffwring with dry eues and mouth. This week ive been going dizzy when moving my head out of the blue i got a buzzing noise in my right ear thos lasted now stop for about 2 hours then disappeared that was 2 nights ago. Tonight i have a throbbing pain on the bone directly behind my ear and i feel so drained. Has anyone experienced this before?
Thank you
Yes I’ve experienced all of this - I have Sjögren’s.
Thanks for you reply it must be awful go have sjogrens how do you manage your dry eyes and mouth. I use hyco duo through th day and a gel bed time. For my dry mouth I use biotene replacement gel it's the best one I've tried.
Well I guess mine doesn’t change that much so I just use drops and gel abd saliva stimulants and privately curse Sjögren’s every time I do! 🤷🏼♀️😊
My ear stuff is due to some high frequency hearing loss and a structural abnormality on my jugular I’m told. My ears have almost no wax and I think the dryness affects then and my nose too. Even that (constant tinnitus plus pulsatile) I’ve got used to apart from in some rare darker moments when it all just gets too much. I’d get your hearing tested as a first and also report the dryness to your rheumatologist when you see them very soon.
It sounds awful when we're you diagnosed with sjogrens did it show up in your blood tests as well as the symtoms. The dryness for me just started at end of April very suddenly and not gradually ive never had before. Thank you for you for getting back to me. Take care.
I was diagnosed about 6 years ago with secondary Sjögren’s having first been misdiagnosed with RA in 2011. Only my Rheumatoid factor and ANA have ever been positive not the antibodies for RA or Sjögren’s. I was diagnosed by symptoms for both and have long-standing diagnosis of hypothyroidism.
Then I was rediagnosed with primary Sjögren’s in 2016 by a very positive lip biopsy. By this time my symptoms were very like MS which does happen with Sjögren’s, similarly to Lupus but not with RA. For me personally the dry eyes and mouth are just the tip of the iceberg and haven’t progressed much - they are what they are.
The worst of the dryness for me is at night when I wake and my eyes won’t open for swelling and stick to eyeballs until I’ve used drops. My mouth is very unpleasant too - lots of dental work - but worst thing is the dry throat and cough. I sip water all the time especially when eating and speaking.
I’ve had Sjögren’s for a very long time so I’m kind of used to the ongoing dryness now. I think it’s very hard when these symptoms first start however. It helps to have a very dry sense of humour to match!
Have you got Lupus or other CTD already?
It helps so much listening to your journey and its all about patience and pursuing with doctors and rheumatologist. Like you my eyes are worse when I wake but the gel does help a lot although it stings when I put in before bed. Dry mouth I have the need to its lke trying to clear my throat but nothing there and I feel there's swelling in my neck just under and I'm sure they've grown but when I asked my doctor back in April when it all started she dismissed and said it was normal and even asked me to feel hers. I es diagnosed with fybromyalgia August 2018 after only 2 visits with the rheumatologist. I had a suspected TIA back in 2015 and was treated put on clopidogrel blood thinners and statins. After scans etc nothing showed at my next visit I was having a lot of pain in my right shoulder and had double vision. When I mentioned these symtoms to a young lady who I'd not seen before she went off and found the consultant who had diagnosed me originally with a mild TIA after about 10 mins they came in the room and explained to me they thought it was all functional and explained it's like the software of the computer not working properly that was me. So the pain in my shoulder and double vision wasn't really happening although to me it was very real. I have a Astigmatism since birth so they said the double vision was probably something to do with that in 50 years id not or can't remember ever having double vision but because I have very limited vision in my right eye the double vision is like a ghost figure to the left side of the vision I'm seeing wih my left eye if that makes sense. So I was sent away with now been diagnosed with funtional. A few weeks later I went back to my doctor because the pain in my shoulder was so bad I couldn't lift my arm up very limited arm movement and the double vision was more and more noticeable to me especially at work in the bright office lifhts. From here my symptoms have all been gradual. IBS, Gastritis; Hiatus hernia. Joint pain swellng, tightnes, numbness burning in shoulders wrists, thumbs hands and fingers. Xrays show arthritis in all these areas but osteoarthritis. bad sweats rash over nose and cheeks and at side of mouth. Really at my worst for e tirst 2 hours on a morning. I went from being a very fit woman to someone I didon't know or recognise always so tired and struggled to the point when showering I struggled to reach parts of my body to wash due to pain and stiffness and restriction to reach. Because id been diagnosed with functional from this young lady who had literally sat with me for 5 minutes i felt when i went to doctors didn't believe me I've spent hundreds of pounds seeking help from physios chiropractors for the last 4 years in the very early days n 2015 a lovely physio helped me as it turned out the shoulder was a frozen shoulder when I went to see her I couldn't even lift my arm I saw my time with her until she helped with that but by this time I had other symtoms she was convinced I had raynauds and possible carpel tunnel and pains and stiffness at top of arms and neck. I was eventually sent for nerve conduction tests I was only tested for lower arm and not upper arm when I told the lady I was having upper age problems too she said that was another test. Results for lower arms come back normal so again functional. I asked for second opinion and to have upper arm but doctor said it wouldn't make any difference to the results. Problems with stomach and joints etc just got worse. I went back again to doctors and on that particular appointment the rash appeared which at this point my doctors reaction changed and arranged for an appointment with rheumatologist first appointment he said he thought I had carpel tunnel and gave me injections in both wrists and was given another appointment on 6 months time when I went back the injection had took the pain away in wrists but none of the stiffness or tightness I hands or upper arms this is when I was diagnosed with Fibromyalgia. I got on with my life carrying on seeing physio and having acupuncture treatment each one couldn't help and all thought it was inflammatory. We have a new System with self referring to see nhs physios called TIMS which Id heard about from a friend so I managed to get an appointment after weeks of visits he very much thought it was very similar to polymyalgia and referred me back to my doctor who then sent me to early arthritis clinic within 2 weeks I had tests bloods and ultra sound of my hands appointed wrists where they found some synovitis which they said did look like I may have signs or RA after 2 weeks I had appointment with rheumatologist same one as before I was literally in the room with him 10 minutes and he said I still think it fybromyalgia your too young to have polymyalgia and symtoms don't sound like it. When I asked about the synovitis which should he said it was a small amount and didn't really show anything. He was at loss what do and asked if I wanted to try steroidinjection I jumped anythings ked the chance. I was given 8pmg og Kenloyn and within hours I was feeling energetic next day I felt like I could do anything I felt amazing it was so easy to rely people how I was feeling because I felt so good unlike when your ilk and in pain it's hard to tell people ans explain because you know your been judged. That was back in end February this year the dry eyes snd mouth started gradually from then but in the than that I was amazing no pain no swelling no numbness sweating had stopped I was the woman I was back in 2915 before I had the then suspected TIA. The injection is wearing off now and symtoms are graduslly returning. I hope someone can relate to my journey and maybe shine some light I have my noumbnessoghingext appointment in 2 weeks. Thanks for listening
So sorry of hear of your pain and struggle for treatment Lynn-Elea. What you need is a good rheumatologist, as Melba1 suggested in a reply to you on an older post. Ask for a referral to Dr. Bridget Griffiths at The Freeman if you don't get anywherewith your rheumy on the 17th. Your GP suspected SLE when she saw your face rash - I read through your other posts and was so moved by this: 'I'm coming to you because I just want someone to listen and help me through. At this she looked up and saw the rash over my nose and cheeks and at that point she was shocked and said I think we may need to look at SLE.'
Some rheumatologists are fixated on blood tests, but there is whole range of tests to be done during assessment, not just inflammation markers. In some folks, ANA is negative. Take Table 6 from the guideline* to your GP and ask for all the tests a GP can do to be done before your appt. Mark up Table 5 with all the symptoms you've EVER HAD. The pregnancy-like swelling and chest pain might fall under the serositis heading. The right/left and hot/cold confusion might fall under neurologic (I have that too...I know what I mean, and my hand will signal the right way, but the wrong word comes out!). Do say you have Vitamin D deficiency. Mention your miscarriage (I'm so sorry to hear of your loss). And let her know about the suspected TIA.
Have a free hearing test at Specsavers, as that will give you a baseline in case you have ear inflammation. I suspect I do, and it's something for my next rheumy appt.
I was interested that you have curved ingrowing fingernails - curved across the way, growing in at the sides? I have that on all fingers but have no idea what is going on! They're like talons!
You'll have your photo album at the ready for rashes and swellings...go to the appt prepared and you'll feel less anxious. Take someone with you - your son perhaps? Fair well, and let us know how you get on! xxx
*academic.oup.com/rheumatolo...
Just one of the bloods from the immunologic criteria is needed, and it doesn't have to be ANA or dsDNA!
An ENT is the one to see for this type of tinnitus and vertigo. There are a few causes and yes autoimmune is a strong one but there are others too and a check for hearing loss is important and with pain a check for infection is prudent. There are also vestibular therapies available to help lessen the vertigo. Good luck. Xo
Thank you for your reply ive had no more buzzing but behind ear is still paining but not as bad as yesterday. Im inbetween appointments waiting to see my rheumatologist on 17th of this month. I was going to wait to see him rather than try to get an appointment with my doctor.
If the pain gets worse have your ears looked at for infection and if you notice hearing issues beyond tinnitus do go to the doctor for there are some serious causes, such as stroke, that cause vertigo accompanied with sudden hearing loss. Hope it is just a quick viral issue.
Hi, I have RA. 9 years ago I ended up in hospital feeling very unwell and with ESR readings of 120+. They diagnosed the problem as Temporal Arteritis, although the CT scan and biopsy were inconclusive but they put me on a very high dose of steroids and things did improve. The issue now is that every time I see my rheumatologist, he only focuses on that, not my RA, and asks me if I've had any pain behind my ear, which appears to be a key symptom of Temporal Arteritis. I keep insisting to him that it wasn't one of my symptoms when they diagnosed it, but he still asks at every appointment. I would suggest that if you have an appointment on the 17th it might be worth asking the question as it's yet another auto-immune issue. Hope your appointment goes well.
My initial thought is sjogrens do you have this diagnosis also?
Hi no I haven't had a diagnoses as these symptoms have suddenly started a couple of months I don't see my rheumatolgist until 17th of this month hopefully he will be able to help me and not just dismiss as fybromyalgia. My glands are swollen just under my chin on right side. My optician and dentist have both suggested sjogrens but j don't think the Rheumy will listen to their opinions are consider so I'm not going to tell him.
Yes me to with Sjögren’s use the same as you , my glands are swollen conscultent said look like there blocked so more trouble for me
What will they do if glands are blocked which gland is blocked mine seems to be right side just under my chin feels quite big but I'm not sure if t's supposed to be like that.
Don’t know what they do just saw consultant other day , mine are blocked both sides but yes that’s where they are
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