Don't know what's real anymore...

[Mctd]

Some know my story so far, but briefly, rheumatologist diagnosed sjogren's after several years of UCTD and has now referred but to a sjogren's specialist. I saw him about a month ago and he's not convinced it's sjogren's and is running more tests and told me to stop taking Amitryptiline as tris can encoursge dryness. Hes also sending me to ENT.

Since the 7th of March I haven't been able to clear congestion in my nose and throat and generally feel ill. I have had antibiotics which didn't touch it, then steroids which cleared it up enough to go to work. However, 8 days ago it started again coughing, being sick, losing my voice, sore chest - I went to a walk in centre and they told me I had a wheezy chest and gave me more steroids.

My doctor has referred me for an endoscopy as he wonders if it is all reflux related,bit seeing the consultant Thursday and now I've developed itching all over my body. Since stopping Amitryptiline my burning tingling sensations have come back and now this on top! Is this a reaction to stopping the medication? Someone has suggested it could be linked to my liver (I was recently diagnosed with fatty liver) . I think I'm going mad...

[StriatedCaracara]

For the last three months I have issues with nose and sinuses. Also, tender scalp the same time.

(Migraine can affect trigeminal nerve across face, but don't think it is that.)

Eye hospital have asked my GP to refer for MRI. He has referred to Neurology Headache Clinic. Have not a clue what it is.

[Krazykat26]

The thing that jumps out at me about this post is your stopping Amytriptiline. Did your doctor tell you to just stop it? What dose have you been taking and for how long? Amytriptiline shouldn't be stopped just like that..it needs to be tapered off if you've been taking it for a while.💜🌈🦋xx

[Mctd in reply to Krazykat26]

I was on it about 2 years, only 10mg a night. The Sjogrens consultant ( who thinks my rheumatologist is wrong and it isn't Sjogrens) told me I should be able to do it over a week. I came off it about 4 weeks ago , the tingling, burning sensation came back over a couple of weeks, the itching started last Thursday. I could scratch myself raw :(.

[Krazykat26 in reply to Mctd]

Although you're on a small amount you have been on it for a considerable time. I initially started on 10mgs now I take 20mgs at night for peripheral neuropathy. Usually it would be longer than a week to come off. For instance start taking one every other night and then gradually drop another dose once you feel comfortable doing it. How's the dryness? Has that improved since you stopped the Amytriptiline? These are the questions I'd be asking myself and if the dryness hasn't improved and the burning etc has returned with a vengeance I'd consider restarting it tbh.I take piriton for itching..every four to six hours until it calms down. 💜🌈🦋Xx

[Mctd in reply to Krazykat26]

Nothings changed, my eyes are still dry and using eye drops several times a day. My mouth is still dry and he admitted it was very dry when he looked at it. I did point out that I had these symptoms before taking Amitryptiline. Anyway, hopefully the tests he's asked for - the eye test again and the scan on my saliva glands will confirm things. If not I'll be beside myself and back to square one. Though I suppose UCTD is better than no diagnosis at all. I do take Pilocarpine which has helped, my mouth isn't as sore, and have less ulcers and sore gums. He wrote to my gp saying to offer an alternative if the neuropathy returns, which it has, but they won't give it to me until I've spoken to the pharmacist and I can't get an appointment till the 13th June...

[Vixen2]

Hi Mctd. I know how annoying dry eyes & mouth etc can be. I’ve had RA since i was 21. (52 now). I’m very lucky to be on an Infliximab infusion every 6 weeks. I also have Iritis & Glaucoma which are very serious eye conditions.

A few yrs ago i started getting really dry eyes & mouth & bad mood swings. I was tested for Sjogren’s. Twice. I had my salivary glands checked twice. Was told 1 of the glands were quite narrow. But that was all. They still didn’t think it was that condition. They did, however. Say it was the menopause. (I was 47 when these bloody frustrating symptoms started). When i wake up. Sometimes i feel too old to even ‘be alive’. My joints, my eyes, my mouth. I’m defo not a ‘morning’ person. My partner knows to steer clear of me, until at least midday!! You didn’t say what sort of age you are. A specialist told me, sometimes Shogren’s takes quite a while to be diagnosed. I’ve got to go & fake tear my eyes. Good luck with all your crap. X

[Mctd in reply to Vixen2]

I'm 63 and had early menopause at 37... like many of us on here, it been quite a journey. I've been totally dismissed by my GP over the years, suggested it was anxiety, menopause eventually MS. It got to the point where I didn't see the point of being here and yes, my mental health is taking a battering, but what I feel is really and not in my head as the neurologist suggested. I was so relieved when I met a rheumatologist who listened and believed me, assuring me I wasn't a hypochondriac. I saw him for 2 years until he diagnosed sjogren's and re-directed me to a sjogren's consultant in February this year.

I feel too tired to fight at the moment, I have a gastrologist consultants appointment on Thursday, then the test for sjogren's again and waiting for ENT. In the meantime I'm struggling at work. I teach GCSE English so you can imagine trying to talk all day with these respiratory issues, I'm now having to take time off as pushing through isn't helping. At least it's half term this week so don't have to call in sick.

I've been like this since this 7th March, spent 2 weeks of the Easter holiday's in bed, had to wait 3 weeks for a face to face appointment with the GP and another 3 weeks off sick. Its not going down well at work :(. X

[Vixen2 in reply to Mctd]

Wow. I do admire you. You’re working full time?? A teacher? I live right over a school in Covent Garden. (A primary school). Sometimes i feel the kids are in my flat. They’re so loud. 231 kids & 1 very annoying pe teacher. He screams at them, like he’s training the SAS.

You’ve got so much on your plate! We all know how frustrating & annoying hospital appointments can be. I’ve been going to Moorfields Eye Hospital for 30yrs. I’m so sick of waiting. Waiting in really crowded waiting rooms. (They especially get crowded now since covid). They’ve taken away quite a few chairs. It’s very frustrating. I can’t stand for long. I panic if i can’t sit down.

As i’ve said. A specialist told me Sjogren’s can be hard to diagnose. But he also said. It should be easier to diagnose if you have something like RA. I have heard it can take yrs to find out.

Good luck with getting a diagnosis.

Ps. 37’s very young to have the menopause. I’m so sorry. I bloody hate ‘mother nature!’ X

[Mctd in reply to Vixen2]

... thanks for your reply by the way and sorry for the rant lol. Take care yourself x

[Vixen2 in reply to Mctd]

Don’t be silly. You weren’t ‘ranting’. We all know how awful chronic conditions can be. That’s what’s great about this forum. You can come on here. Day or night & let it all out. We all understand. Your life sounds hectic. Have you had any ‘counselling?’ It can help to speak to someone on a regular basis.

So glad you’ve got a week off from school. (I’m glad too). No screaming kids for a week. Hope you spoil yourself. I always say the same thing. For me. There’s nothing like a lovely bowl of soup. (Any flavour). Get into bed. Put a good comedy on your tablet. (If u have 1). It takes away all my worries for a while. (This sounds really weird. But i bought a new kettle the other day. It’s quite a modern 1. Changes colour as it boils. Lovely colours. I turn all the lights off & watch it boil in the dark. I even have a little boogy as the colours change. I’ve decided this will be my new tradition. The song i’ve chosen, is. You will always find him in the kitchen at parties. A funny song. I think from the 80’s. My partner’s even said he’ll join in with me next time i boil. These little things can cheer us all up. X