I post all my different flaws here as I go along, until I get a diagnosis.
It’s like a diary but also reassuring to know that some of these symptoms are real.
I’ve noticed for a while now that during a flare I often find myself choking on taking tablets.
Most recently I’ve noticed difficulties in swallowing my own Sylvia. To the point I feel like I’m going to suffocate!!!! It takes some composure to get my self to swallow after my initial panic. This often occurs at night!
I’m actually getting really concerned for my health at this stage. Has anyone suffered this?
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Lisalou19
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It depends what’s competing. Presently intense pain in my legs. I use salivex pastels and sip from a water bottle. It’s defintely on my lo list of symptoms for rheumy - see “choking on goo”!! Sometimes there’s no goo - then it’s just pure panic until I get something to drink. GP once described it as oesophogeal spasms.
I get this too and find it extremely disconcerting. It feels as if I have forgotten how to swallow, which causes a slight panic. I have to drink water to get me back on track - it does do the trick. I haven’t experienced it for a while but it does only seem to happen in the evening. I can only think it is some form of inflammatory response, albeit a very unpleasant one! In fact, horrid.
I’m sorry I haven’t been able to give you a reason as to what it is and why it happens - but I wanted you to know you are not alone.
There may be someone that responds with a more informative answer soon!
As horrible as it is, it’s also reassuring to know this is real and is happening.
It is by far the worst symptom yet I have experienced. It takes a lot of mental strength to make yourself swallow!!!!
I’m still waiting for a referral. Been waiting since January. Symptoms are increasing and getting so much worse. I can hear my body screaming at me to get help!!!
Also going out in day light now sends piercing pain through my eyes (not all the time) I so need to know what’s wrong
Yes Lisalou , it really does! And I totally agree! Just awful.
The last couple of days have been sunny here in Yorkshire and my eyes have been painful and the bouts of dizziness have returned with a vengeance. It’s all good fun! Or perhaps not!
Do hope you’re not waiting too much longer and you soon have some answers as to what is causing your symptoms.
If I eat anything I have to have water available. There have been some really dangerous and embarrassing moments when eating out if I have started without water being available due to choking.
I always have water on the table or beside my bed at home now. And carry water bottles with me. It's just safer.
I have sttuggled with swallowing I got the camera down I have gord and a hitia hernia im.waiting on a sinus op they say I will get my saliva back I truely believe ive something.else I wake up my tongue it stuck.to the roof of my mouth.have dry eyes and chopped lips tiny ulcers in my mouth severe body pain Its horrible .Have you had the camera down yet.They might be able to tell you what it is The gord is awful just on omeprozole and randitine not a good speller . I was choking on big tablets.gerd is horrible its reflux desease.xxxx
I have the same problems as you with swallowing (dysphagia), it is an issue caused by Scleroderma and the weakness in the muscles caused by Myositis.
Tablets are a problem for me and I take suspension for one of my drugs which helps enormously. I also sleep with my head slightly raised which prevents any choking.
Talk to your doctor there may be something that they can help you with.
Been talking to my doctor for years. Feels like no one is listening
I just want a normal life, Evan if medication will give me some peace id be happy with that!!
It’s good to read that this is experienced by others. I tend not to worry too much and dismiss new symptoms , but they keep appearing, always something new or different.
Although I have always had problems swallowing and choking 2 or 3 times a months, I was only diagnosed with Sjögren’s and lupus last year. And yes, my own saliva can make me suffocate if I am not careful. Things with crumbs cause me problems too, so I steer clear of them unless i can dunk them in liquid, fruit tea or decaff.
I have the total opposite I have no sylvia and my mouth is sticking together, sometimes so dry I can't even talk. My husband is very happy about this part of my lupus
Hi Lisalou19, I have had problems with swallowing due to the paralysis of my right vocal cord. It is always open and food and liquid go 'down the wrong way'. I was told how to swallow successfully by a speech therapist. As I am going to swallow I lower my chin to near my chest; this mechanically closes the vocal cords and I am able to swallow without any problems. Now I realise that this may not work for you but it would certainly be worth a try. I have done it so long now that it is part of my normal routine.
I went to bed last night with my head propped up by pillows. I could fell anxiety kicking in before bed as I was scared of experiencing this horrible problem. I managed to calm myself by repeatedly swallowing, knowing that I could relaxed me and I think the pillows helped lots
Yes. I have sjrogens and not good when I had 2 wisdom teeth out yesterday and trying to swallow saliva kept disturbing clots so mouth bled for ages. I have a spray but it’s not very nice and I make sure I use plenty of liquid for my tablets. Always keep a drink handy and chewing gum helps with saliva production as I find it sometimes feels I don’t have enough to swallow but something is stuck. I had what I thought was heart palpitations 6 months ago but gp said it was oesophageal flutter as couldn’t swallow at night. Very scary , but I was relieved it wasn’t my heart to add to the long list of other problems xxx keep your chin up. I find keeping the temperature low at night so my mouth doesn’t dry out handy xxx
I have problems swallowing and getting food into my stomach. In my case it's "most likely" scleroderma. Meds are very difficult. I have the same suggestions as others about making sure you always have water with you. I have mouth dryness but I put that down to being one of the side effects of most of my meds. 4 omeprazole a day keeps the GORD at bay.
I too have difficulty in swallowing and have a very dry mouth. After x-ray and an appointment with an ENT consultant I was referred to a speech therapist, as there did not seem to be any medical abnormalities. She has advised me to drink 3 litres of water a day, which I find very difficult - have managed 2litres so far. She also suggested I inhale steam as I constantly feel mucus st the back of my throat and this often leads to me choking.
We are not medically trained here therefore we cannot state what the cause of your symptoms may be. However, the symptoms that you have described do resemble those associated with Sjögren’s syndrome.
According to The Lupus Encyclopedia, Sjögren’s syndrome “affects the lacrimal glands, which secretes tears, causing dry eyes, and the salivary glands, which secrete saliva, causing a dry mouth”. The encyclopedia states that one key symptom of dry mouth in Sjögren’s syndrome is ‘difficulty swallowing dry foods without water’.
The Lupus Encyclopedia provides general measures to help alleviate dryness of the mouth:
•Drink plenty of fluids, especially water, throughout the day
•Avoid dehydrating fluids such as alcohol and caffeine
•Avoid smoking
•Use gum and mints that contain xylitol throughout the day
•Eat soft, moist food if you have trouble swallowing
The NHS Choices’ website provides information on the diagnosis of Sjögren’s syndrome. To find out how you can be tested, click here: nhs.uk/conditions/sjogrens-...
That's great to hear, good luck with the appointment. Let us know how you get on.
If you have time before your appointment, please read our blog post about 'getting the most from your medical appointments': lupusuk.org.uk/getting-the-...
You shouldn't do it just because someone else has but after reading about the dangers of PPIs I weaned myself off them.
Since doing so I won't say I never get acid but I have learnt to control it better.
If I keep sugar intake low it improves but that also includes foods that break down into sugars in the body. In a word carbohydrates. But mainly refined carbs. So I go extremely easy on bread or floury products. Also refined grains.
I get this quite often. It's like my saliva production is working overtime. I seem to swallow a bit of air which then leads to bloating as I tend to gulp rather than swallow.
The strange thing is that when I'm sleeping it doesn't happen ( my wife has noticed)
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