I do not have a diagnosis of sjogrens syndrome. What I have are some new symptoms that I would like some advice on. Ye are probably wondering why I came here for them. I’ll have to give you a brief history so I ask that you bare with me.
I was last year diagnosed with trigeminal neuralgia at 25(26 now) I’m sure some of ye have heard of this. It can be related to SS. Around this time I was also informed that my ANAs reading positive. Positive to what you might ask, so did I, to be told that it would have to be further investigated but looks to be liver related, nothing to worry about right now I was told. I was told however that it didn’t read as a connective tissue problem.
My mother has SS. Took years and years for a diagnosis so I have some bit of an understanding of it from her point of view.
I just really wanted an opinion from someone not connected to me or my mother (same GP).
In the last year I have had some things that I never paid much heed to intensified and some new things. Since been diagnosed with TN I have learnt to listen to my body, the hard way.
I have what can be described as mild to serve itching or skin crawling. It can wake me at night or strike during the day. The tiredness I feel most days can only be described as chronic. I have irritated eyes, I won’t say dry because I still produce tears, just not oils. The glands are blocked, so irritated and gritty at times. These I have had for over a year. In the last 3 months however I have started to have pain in my mouth. The only way I can describe it is as if the tip of my tongue is burnt, always. My tongue feels a little bit two big for my mouth and my lips can be very dry. I always feel thirsty. I am on my second lot of steroids in three months for it. They help some with the burning feeling but once the course is stopped that pain is back again. Also my body in general hurts. My knees. Fingers, toes, calf muscles and get weaknesses in my arms.
Any of this sound familiar to anyone?
Of course I have sat on this for a while because I thought it was side affects from a large dose of medication for trigeminal neuralgia flare up but I am on the lowest dose ever now and don’t put it down to side affects.
My own GP is suggesting I see a rheumy and because of my mother’s history (1aunt also) that looking into SS might not be a bad idea. Should I push for my blood work to be done again? Is it all in my head or do ye think a further investigation should be done?
I would greatly appreciate yer advice on the matter and thank you for taking the time to read this.
Hi Peggy! You certainly have a lot going on. In terms of diagnosis, obviously you’ll have to keep working with your doctors.
The big things that stood out to me were a few things that you can do at home. For your eyes, you can look up treatment for blepharitis. The key things would be daily lid and lash scrubs, and warm compresses. This helps to open up the oil producing glands and minimize risks of infection. It will help improve your tear quality too.
For your mouth, mine was bad like that before I started taking evoxac. This increases saliva production and is a prescription medication. Barring that, a lot of people find some relief from products like biotene, which are designed for dry mouths.
A lot of this sounds familiar when you start looking at the discussion history. Joint pain, neuropathy, dry mouth and eyes, etc. I hope that your journey is much shorter than your moms.
We have had a discussion a little while ago about SS and TN- SS causes neuropathy, and this can sometimes be in the Trigeminal nerve. Have you joined the Ben's Friends TN group as well- they're very informative and supportive?
What medication are you on for the TN now ? Sometimes that can cause dry mouth- like amitriptyline for example; sensible of you to wait and see while you were on the higher doses. And are you on any eye drops to stop that gritty feeling? Like you mentioned, it's not just the tears, but the quality of the tears- if you're not producing the oil as well the tears will go straight away.
I think with the tiredness and joint pains everyone on here can sympathise with that! There is a condition called 'Burning Mouth Syndrome', don't know much about it I'm afraid, but you could look into that if you haven't already, although I'm not sure that it's particularly treatable!
I can sympathise with the feeling of something crawling under the skin too!
It sounds like a sensible idea to have a referral to a rheumy- there's been several members on here who have had negative blood tests for a while, but with SS symptoms, and then later shown up positive, and some people have had salivary gland biopsies done and that's been used for a diagnosis.
My optician gave me a warm compress after my visit to him last year. I do find it good when I think to use it. It got thrown into the back of the medicine press when TN took over. Thank you for reminding me it’s there. he did suggest eye drops. If I do have SS it’s something I am not going to look forward to. I hate anything near my eyes but will have to get over it if they get much worse. The scrubs I wouldn’t really use because of the fear of triggering my TN
I think I will start to look into having it further looked into. I just don’t want my go to think in looking for things that aren’t there. I’m not, I’m looking for answers.
Yours thankfully
Peggy
Stoney said:
Hi Peggy! You certainly have a lot going on. In terms of diagnosis, obviously you’ll have to keep working with your doctors.
The big things that stood out to me were a few things that you can do at home. For your eyes, you can look up treatment for blepharitis. The key things would be daily lid and lash scrubs, and warm compresses. This helps to open up the oil producing glands and minimize risks of infection. It will help improve your tear quality too.
For your mouth, mine was bad like that before I started taking evoxac. This increases saliva production and is a prescription medication. Barring that, a lot of people find some relief from products like biotene, which are designed for dry mouths.
A lot of this sounds familiar when you start looking at the discussion history. Joint pain, neuropathy, dry mouth and eyes, etc. I hope that your journey is much shorter than your moms.
I am indeed on the trigeminal neuralgia page if this and have broached the discussion of TN and SS on it when someone else added a conversation. It was however way two medically termed for a regular Joe soap as myself so quickly lost the direction it was heading in.
I was on lyrica 600 mg and amitriptyline 50 mg daily for TN at its worst. However I’m off amitriptyline just shy of a month and it’s worse it’s getting. I am down to 75 mg twice a day of lyrica and should be staying on this dose as a prevention I’m told. As it was the highest dose of lyrica to give and amitriptyline can do some strange things to a persons body I waited until I got to this level and a few weeks to try flush my system to see what way I was going to be. If anything these symptoms of mine seen to be getting worse. The doctor has put me on steroids for my mouth and the skin crawling, itching sensation. Two weeks worth the last time and three weeks worth this time. Of course they aren’t helping with the dryness, only making it worse but my tongue doesn’t feel as burnt or as swollen. I don’t know, it’s all very confusing at times. Thank you for taking the time to reply.
Jules said:
We have had a discussion a little while ago about SS and TN- SS causes neuropathy, and this can sometimes be in the Trigeminal nerve. Have you joined the Ben’s Friends TN group as well- they’re very informative and supportive?
What medication are you on for the TN now ? Sometimes that can cause dry mouth- like amitriptyline for example; sensible of you to wait and see while you were on the higher doses. And are you on any eye drops to stop that gritty feeling? Like you mentioned, it’s not just the tears, but the quality of the tears- if you’re not producing the oil as well the tears will go straight away.
I think with the tiredness and joint pains everyone on here can sympathise with that! There is a condition called ‘Burning Mouth Syndrome’, don’t know much about it I’m afraid, but you could look into that if you haven’t already, although I’m not sure that it’s particularly treatable!
I can sympathise with the feeling of something crawling under the skin too!
It sounds like a sensible idea to have a referral to a rheumy- there’s been several members on here who have had negative blood tests for a while, but with SS symptoms, and then later shown up positive, and some people have had salivary gland biopsies done and that’s been used for a diagnosis.
You sound as though you've looked into things pretty well, but in case here's a link for more info on neuropathy, getting a diagnosis and treatment etc. :
There are some other medications for neuropathy, which are used to treat TN as well, so it might be possible to try it if the symptoms get worse, but on the other hand if you're TN has subsided now you might not want to rock the boat! Quite a few people on here take Lyrica or Gabapentin. Have you seen a Neurologist for the TN? It might be an idea to mention these other symptoms to them, or if you've not seen one then push for a referral, along with the Rheumy?!
I was on tegratol for the first flare up of TN that I got. When I got the second one it came on so much faster and 100 times worse that even after taking tegratol it didn’t touch the pain so I ended up in emergency. Which was an absolute blessing in disguise. I turned out the be allergic to tegratol the second time around. I had a very bad valiscular reaction. I met a rheumy there for that and started telling him of the things that had started to go on, no dry mouth of achy body at this point. I am to see him again. Waiting on his letter for a follow up but I’m going to start politely making some noise to see if I can push it in a bit.
In the space of 6 days after being admitted through emergency I had a jaw xray, face xray, saw an ENT, had a head CT done and finally an MRI and ended up meeting a lovely neurologist who I am now under. He started the lyrica and asked for a very detailed family history and my own history which is dodgy, at best, for my age. H informed me my MRI was clear, thankfully as MS is quite strong in my extended family., as was every other xray except for slight Sinus inflammation that was on the wrong side for my TN. He told me that Primary Biliary Cirrhosis was the autoimmune showing in my bloods, had no idea until then that’s what it was. He also told me that the autoimmune that most likes to attack the fifth cranial nerve is sjogrens and had I ever heard of it, so it was after this he asked for a very detailed family and personal history. I can honestly say I have never met such a nice, polite doctor. He sat with me for two hours on his rounds and came back immediately after tests to say how I had got on. An absolute gentleman. I would have been anything up to two years waiting on an mri only for him.
he did suggest eye drops. If I do have SS it’s something I am not going to look forward to. I hate anything near my eyes but will have to get over it if they get much worse. The scrubs I wouldn’t really use because of the fear of triggering my TN