Sjorgrens. Do you have swallowing difficulties?

[Footygirl]

Hi. Continuing my search for answers. I still have no feeling beyond my throat. Pharynx? Do you have this? Is it called a thickening? How do you cope with it?  

I still feel unwell. My face is covered in spots which I cannot clear despite all the adverts cures etc. I drink at least 10 pints of water every day, because of my persistent dry mouth and throat. I now have eye drops prn. I have bought a humidifier to help moisturise everything and curb my annoying cough. 

I have had another gastroscopy but nothing was found except possible gastritis. Do you know... does this take away your appetite? 

Is there another investigation, other than barium swallow that would show my oesophagus and any problem caused by the Sjorgrens?

I have a review with the Snr GP next week. I dont expect any help from him but would like to be in a position to know more about how Sjorgrens can affect you so I can ask for investigations or treatment you may recommend.

I don't know if he will diagnose Sjorgrens or will want to leave it to the Prof I am to see next month. Are there any other tests or symptoms which clinch the diagnosis? I should add I have horrible itchy ears and dry skin, despite the Mount Vesuviuses I display on my face. 

You know I have Lupus, AIHepatitis, Menieres Disease and all this joint pain and dryness.

As always, thanks to you all, gurus and worker bees alike for all your help with this. Knowledge is power, and I want my army at my back again for going into the GPs den once more.

Much love, better days

⚽️

🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹

[Chris21]

What is your diagnosis? Sjogrens as far asi know is tested by putting a special paper in your eye and mouth (as well as blood test for auto immune) and history. It affects your salivary glands.

The swallowing can be caused by all kinds of problems not just sjogrens. The speech therapist would be able to advise how well your swallowing action is but wouldn't be able to tell you what 'disease' is causing it.

I have sjogrens and one of my problem with swallowing is sometimes the food doesn't want to go and sticks at the back of the throat. My taste buds have gone which I think has made my appetite go. One of the main problem I get is pancreatitis and have to watch my diet.

I've re read your post, anything causing inflammation in the lining could make you lose your appetite.

Lupus itself can cause you to have all the problems you are experiencing. As always there are no easy answers, we all suffer different ways and so many that try different meds and therapies. Hopefully you will find some answers and relief soon. X

[Footygirl in reply to Chris21]

Thank you

[EOLHPC]

Hello ⚽️ footy...am so sorry to think if you managing all this: it's a really big multisystem load...good old sjogrens, lupus & co 😝

Hope you're taking photos for your consultants: of the skin stuff...rashes etc...I'm fighting a nasty red face lesion at the mo: only dermovate ointment seems capable of suppressing it...and ever time I've thought we had it beat, the darn thing flares back up again ☹️.

Maybe this link can help you get your head around some of the types of testing the NHS uses in cases like ours...I know you've had gastroscopy etc...but this link explains other investigations/tests ...over the years I've been put through some of these in the course of gastoenterology investigating my version of these kind of chronic symptoms...it has all helped us understand, treat & manage my version of this stuff:

nhs.uk/Conditions/Dysphagia...

Please keep us posted

Wishing you really seriously constructive consultations with your GP, the rheumatology prof... and all the other usual specialists: ENT + gastroenterology + dermatology...& on & on....💃💃💃💃💃

XOXO🍀🍀🍀🍀

[Footygirl in reply to EOLHPC]

Thanks guru as always.

I asked the person, no title, what other tests could be done to show how my oesophagus moved as swallowing food can take some time. She muttered something about bariom swallow but shrugged. That link you provided gave at least four other options. 

I shall quiz my GP on Thursday about them. Dermovate noted.

Thanks for your knowledgeable answer as always

XOXO🌹

⚽️

[EOLHPC in reply to Footygirl]

yes: i hoped/thought you'd like that link ⚽️😘!

in this link the barium swallow is explained quite well along with other tests that might be relevant to you:

nhs.uk/Conditions/Gastroeso...

XOXO🍀🍀🍀🍀

[Maureenpearl]

Hi Footygirl, why not ask your consultant to send you to see a Gastroenterologist perhaps he/she could then request you have a Oesophageal manometry test.

I can swallow but if my mouth is very dry I find it very difficult to swallow so I always chew gum to keep my saliva flowing and my mouth moistened.

Because I'm always vomiting I had to see the above consultant and had the test done after having a MRI test to rule out brain tumour. The test showed that my Oesophagus goes into spasm when I swallow food and the muscles are weaken (caused by the lupus), so the food takes hours to reach my stomach. I vomit when there is an overflow of food. This can happen every night in a week unless I eat a fraction of what I should in a day.

Take care.

xx

[EOLHPC in reply to Maureenpearl]

Yes, me too: had the oesophageal manometry test.... & I cope pretty much the way you're describing, Maureen.  So true: lifestyle management is key.

Are you also managing gastroparesis?  

Do you ever take domperidone?

Footy: the manometry test is amongst those explained in the links included in my replies

[Maureenpearl in reply to EOLHPC]

I was given Domperidone but it just didn't work for me. I just try and eat small amounts often but there are times when I can't do that.  I find bulky foods such as bread just get stuck and then I start to hiccup and belch and I know then I am going to throw up and even if I go to bed and not vomit first it just happens in my sleep.

[Maureenpearl in reply to EOLHPC]

Sorry I did not say I haven't been diagnosed with gastroparesis but I do get terrible acid reflux.

[Footygirl in reply to Maureenpearl]

Maureenpearl

Thanks for your insight. Like many of my problems, the problem is getting answers. After gastroscopy this week, I asked if there were other tests I could have to better see action, or lack of it in oesophagus. I got a mumble and a shrug. Both you and Barnclown have mentioned said diagnostic test. WHY did she not suggest this or at least answer my question????????????

I am so sick of being ignored.

I have repeatedly asked if it could be Lupus related. One shoulder shrug.

Is it cos I am over 65? Is there a mandate out, save money, dont investigate anything in over 65s! 

They said I have gastritis. They took chunks, and I mean chunks of biopsy. If it is I should get treatment but that is stomach, not swallowing or oesophagus.

This has been going on since February. My presenting symptoms, one shoulder shrug. No interest, no investigations. I am reading that no appetite is serious. Not to my GPs its not.

Wait til I see this GP on Thursday this week.

Thanks all. Knowledge is power

XOXO

⚽️

[EOLHPC in reply to Footygirl]

GO GIRL GO

One more link for you, dear footy ⚽️...this brilliant site provides solid, up to date accessible info re most all aspects of both upper & lower GI  function...reading its upper GI sections may help you walk into your consultations feeling even more confident (I only found this site recently: it's helped me hugely with the long drawn out saga of the NHS pelvic/abdo MTD investigations I'm going through...and definitely helped me better understand how my lower GI probs relate to my chronic upper GI probs (which are already thoroughly diagnosed & continuing to respond ok to treatment plans))

iffgd.org/site/gi-disorders...

🍀😘🍀😘

[Footygirl in reply to EOLHPC]

Spot on al usual🌹. Clearly explained. Exactly my symptoms and exactly the same investigation as being recommended here. Bless you gurus!

I go forearmed. Motility test required to confirm my months and months of saying all this to quacks. Thank you.

I shall request an early appt or will request from Charisma, as this has gone on for months now which cant be good.

Hope restored. Confidence boosted.

In your debt as always everyone

XOXO

⚽️

[Purpletop in reply to Footygirl]

Try not to waste your energy on wondering why they don't help. Many reasons, no point getting worked up about it. Just push and push some more. 

Ask to be seen by a gastroenterologist. You need motility testing to check how the food gets moved down from your mouth to your bowel. The endoscopies and colonoscopies only look at what's inside at the time of the camera going in. It doesn't measure how efficiently the entero system moves the food down. You've heard gastroparesis being mentioned here, which basically means that the muscles don't operate as quickly as they should, so food remains stagnant in the upper part of the system causing nausea, lack of appetite, bloating etc. But you need a proper investigation by someone who knows what they're doing. 

As for acne despite your dry skin - as there is not enough water in the skin to "dilute" the oil produced at the same time, the pores get clogged by the oil and then infected. Try to avoid face creams that are oil based and focus on those that boast "hydrating" properties, as those have elements that retain the little moisture there is on the face and create a barrier against losing it too quickly. Use hydrating masks too. I use a hydrating spray from Dermalogica on top of that. Hydrate day and night. These products are not cheap, particularly if, like me, you try to go for natural products (amazingly those cost a lot more than the other ones). Skin dryness makes the skin look old, I age as it is, why not do what I can to not accelerate it, that's my view.

[Footygirl in reply to Purpletop]

Wise words guru. I do get distracted by the fight with docs as to why they wont help. I am certain they have been told to hold investigations. Maybe I am in cloud cuckoo land, but you used to present with anything that concerned you, and off you trotted to xray, consultant etc no bother. Times have changed and that NHS standard has gone. I think even I could practice as a GP now with mimms in hand and the internet. Anyway, accept move on, find a way to get what I want other ways. 

I do have a Consultant (Charisma) GI doc because of my AIHepatitis so he is the guy to go to. I shall ask, but if stalled I shall ring secretary for earlier appt than the one in July I have now. Given all the excellent information here I know what to request now.

Thanks for the skin advice too. I use Clinique stuff which usually sees me right but things are getting worse not better so I shall switch to your regime. Can you tell me your daily hydrator? Er no pressure, I shan't sue!!!! if my lousy skin doesnt listen but it really is getting me down.  Thanks for the referrence to getting old, you should be a pro pep talker😂😂😂😂😂😂😂ha ha.

Seriously, solid advice and info as always Purpletop. My grateful thanks. Next time my voice goes up in indignation I shall chant your name to calm me down and focus my small energy where it can do most good

Bless you

Thank you 

🌹🌹🌹

⚽️

[Paul_Howard Partner LUPUS UK]

Hi Footygirl,

If you need more information and advice about Sjogren's Syndrome you may want to contact the British Sjogren's Syndrome Association (BSSA). Their website is bssa.uk.net/

[Footygirl in reply to Paul_Howard]

Thanks Paul

[vambat]

I have same problem in February and I am so frustrated. I remember there is a member recommanding " biotene" moisturizing mouthwash to me for dry mouth, and i have same synptom as yours difficult swollen too. You can find it in boots. Hope this can help.

 Take care

Vambat😊