Swallowing

[Pug-Mum-89]

For the past couple of weeks I’ve been having a hard time swallowing food to the point where I find now that I’m unable to eat anything solid without gulping water after most bites. It feels like everything I swallow is either going down the wrong way or getting stuck and I’m having to use the water to flush it down otherwise I’m choking or bringing it back up. Does anyone else get this or know what’s causing it?

[Horsewhisper]

Dear Pug-Mum, sorry to hear that you are having difficulties swallowing food, it’s so not nice. I too, have this issue along with nighttime choking episodes, where I wake up in the night, unable to breathe or swallow. It would be a good idea to get it checked out, your Rheumy can order a barium swallow to check the workings of your oesophagus and ask your GP to refer you to gastro for an endoscopy. I am currently on this diagnostic path hoping to get some answers very soon. In the meantime, smoothies and soups along with other soft foods will help with eating. Try and avoid crisps, nuts, crackers and raw, crunchy fibrous fruit & veg like apples and celery, maybe steam/bake first before eating. I also sing (in the car, loudly and on my own of course!) to help exercise the throat muscles along with a bit of Pilates & meditation for overall relaxation which also helps. Good luck and let us know how you get on xx

[Pug-Mum-89 in reply to Horsewhisper]

Thankyou I’ll mention it to my rheumatology consultant I see him towards the end of November. I see my rheumatology nurse on Tuesday but I’m not sure she would know what it is 🤷🏻‍♀️🙂 xx

[Masonvets in reply to Pug-Mum-89]

I'm pretty certain nurse will know! It is very common in ra. My twin sister and I both experience this. We both have RA/Sjrogens. You will find that a sip of milk may be more lubricating and improve your ability to swallow.

Hope this helps. Good luck!

Angie

[maye1]

I had this a year and a half ago and it resolved on its own within a couple of months. It returned about a month ago. No idea what’s causing this symptom. I see the Rheum in 2 weeks. I can let you know what he says if you like.

[Pug-Mum-89 in reply to maye1]

Yes please 😊 I’m not due to see my consultant until the end of November, I see my rheumatology nurse on Tuesday but I’m not sure she would know or be able to do anything 🤷🏻‍♀️

[maye1 in reply to Pug-Mum-89]

She might..it’s worth asking her. Yeah, for sure, I’ll let you know.

I’m curious if you have any issues with your spine?

[Pug-Mum-89 in reply to maye1]

Not that I know of. My hips and the bottom of my back have been hurting since I had a fall down the stairs about 3 weeks ago. I had a seizure the day after as well. I’m always falling, my balance is horrific!

[maye1]

That sounds awful, Pug.

Have you seen a Dr since the fall 3 weeks ago?

[Pug-Mum-89 in reply to maye1]

No, my GP is useless, if I go for anything she says oh it’s your S.L.E and ships me off to hospital. They see my name take a look at my notes then seem to get scared and not want anything to do with me. They say let’s get you off to the hospital to be on the safe side. I hate hospitals, i spend more time in them than out of them.

I think I’m going to have to go tomorrow to see my GP though because I feel like I have water on my chest but when I’m coughing nothing is coming up 😔

[Pug-Mum-89 in reply to Pug-Mum-89]

Waste of time. They made me see the nurse practitioner. She thinks the pain in my chest is muscular from the fall 2 weeks ago and from coughing. My chest is apparently clear even though I feel like I’m inhaling water and drowning my temperature is up and blow test is rubbish but my chest is clear. It doesn’t feel clear! It feels like I’ve got loads of water on it that needs to come up!

If I don’t feel better I have to call 111 or go back...... this is why I never go to my doctors 🤷🏻‍♀️😠 they don’t listen to all of the story and it just makes me mad. Now I’m all out of breath for nothing

[maye1]

I think that’s a very good idea that you go see your GP tomorrow. It sounds like 3 new symptoms since you fell. Yes, I totally agree that hospitals suck. But sometimes we need to go. I’m sorry:/.

Let us/me know what happens with your GP. Xx

[Pug-Mum-89 in reply to maye1]

I will do 😊 thank you xx

[Lizziequink]

Hi Pug-mum. Please get that appointment and also ask if the swallowing issue could by down to a thyroid problem. As well as everything else, I have intermittent problems with an overactive thyroid and had some problems with swallowing - not as bad as your problem with swallowing, though, but certainly worth asking the question. I have blood tests every 3 months to keep an eye on it and they just let me know if I need to take the meds.

[Pug-Mum-89 in reply to Lizziequink]

Thank you I will definitely ask the question.

[Lizziequink in reply to Pug-Mum-89]

Really hope you get things sorted out x

[Pug-Mum-89 in reply to Lizziequink]

Waste of time. They made me see the nurse practitioner. She thinks the pain in my chest is muscular from the fall 2 weeks ago and from coughing. My chest is apparently clear even though I feel like I’m inhaling water and drowning my temperature is up and blow test is rubbish but my chest is clear. It doesn’t feel clear! It feels like I’ve got loads of water on it that needs to come up!

If I don’t feel better I have to call 111 or go back...... this is why I never go to my doctors 🤷🏻‍♀️😠 they don’t listen to all of the story and it just makes me mad. Now I’m all out of breath for nothing x

[Lizziequink in reply to Pug-Mum-89]

I'm so sorry you're being treated so badly. Have you considered changing your GP, or is there a walk-in health practice in your area? The only other immediate alternative I can think of right now is to call your GP surgery after they close and get and out-of-hours appointment so you see a different doctor. Good luck with it all x

[CecilyParsley]

Hi, it is so frightening when you choke. I had it two years ago and literally anything I ate stuck to the point of going blue. My husband hit me so hard on the back each time I was bruised. I had water coming back up and down my nose. I saw a gastroenterologist had a gastroscopy, barium meal and a swallow test. They found what they initially thought was bleeding thrush down my oesophagus but no functional issues . I was diagnosed with pernicious anaemia and the Consultant wrote to my Rheumatologist asking him to consider a diagnosis of sarcoidosis given the choking, rashes and spasticity in my tendons. My Rheumatologist dismissed it and said the bleeding ulcers were due to Bechets. Like many issues I have it seemed to resolve after about six months but then it returns suddenly. I hope that you get tested as I totally understand how debilitating it can be. Good luck xx

[Pug-Mum-89 in reply to CecilyParsley]

It’s horrible I’m fine swallowing fluid but food seems to down the wrong way or get stuck and I’m having to gulp water to flush it down. I also feel terrible today, I feel like I have fluid on my chest but when I’m coughing I’m bringing nothing up. It feels like I’m drowning. I can’t get my breath xx

[CecilyParsley]

I did not experience that but you definitely need to get investigated. I am sorry that you are suffering like this. Please don’t wait call your GP to start the process of referral now today xx

[Pug-Mum-89 in reply to CecilyParsley]

I’m waiting for the GP surgery to open at 8am. I can guarantee it will take forever to get through though xx

[Pug-Mum-89 in reply to Pug-Mum-89]

Waste of time. They made me see the nurse practitioner. She thinks the pain in my chest is muscular from the fall 2 weeks ago and from coughing. My chest is apparently clear even though I feel like I’m inhaling water and drowning my temperature is up and blow test is rubbish but my chest is clear. It doesn’t feel clear! It feels like I’ve got loads of water on it that needs to come up!

If I don’t feel better I have to call 111 or go back...... this is why I never go to my doctors 🤷🏻‍♀️😠 they don’t listen to all of the story and it just makes me mad. Now I’m all out of breath for nothing x

[CecilyParsley in reply to Pug-Mum-89]

Personally I would insist on seeing a GP. I think you need investigations to rule out other causes of such a feeling such as ECG, angiogram and swallowing tests. A nurse, with the best of intentions may have overlooked such issues. I understand your frustration that is why I avoid Doctors if I can. Bless you, I do hope you find the strength to pursue this, I know how much effort it takes xx

[Pug-Mum-89 in reply to CecilyParsley]

I just feel so poorly The receptionist annoyed me before I even saw the nurse

“You’re 30 minutes early you’re going to have to take a seat!”

So obviously I couldn’t resist opening my mouth to say “Then that’s better than being 5 minutes late and having you tell me I need to reschedule isn’t it! You sucking on a sour sweet?” The other receptionist choked on her coffee and didn’t dare look up from her screen and other waiting patients were trying to hide their faces laughing.

I get so sick of being spoken to like an idiot. When I’m nothing but kind and polite,I refuse to just take it anymore. Xx

[CecilyParsley in reply to Pug-Mum-89]

Good for you. I once got so angry being put down by the receptionist and told I would have to wait when I had campylobacter. I said very loudly I am now shitting green and when this sanitary towel I have on my ass gives out you can mop the floor. I have never before or since said or done anything like that but I was soooo anxious that I was going to shame myself by soiling their floor. The GP saw me within minutes and they had a reprimand and a notification to public health. Xx

[Pug-Mum-89 in reply to CecilyParsley]

Receptionists are so rude! Well some can be. Xx

[Toldyouifeltill]

Hi, I have this issue. I am on treatment for reflux which can add to swallowing problems, but I have also noticed - alongside having to drink with anything dry or bulky, take small bites, and chew more etc, that I well up but don't actually produce tears anymore, and my nose always feels stuffy. My rheumy has said its the Lupus affecting my saliva glands, tear ducts, and nasal secretions. I have good and bad days but generally better since knowing what it is ! I also have fake saliva spray (not as bad as it sounds) and eye drops if I need them. Seems to be quite common. It can also affect your 'lady bits' so bear that in mind ! X

[dorko86]

I have had issues with this as well, they did a EGD on me and found tissues changes in my esophagus and had to stretch it while they were in there. It has made a huge difference and I find I am not choking nearly as much and can actually eat (slowly) a hamburger finally! Ask for an EGD!

[Pug-Mum-89 in reply to dorko86]

Thank you I’m seeing my rheumatology nurse today, so I’ll mention everything

[maggielee]

Hi Often overlooked is sjogrens & it's impact on your salivary glands. I find my diet has to adapt to different foods & the need to eat moist foods & not dry. I am including a link below that may help:

sjogrens.org/home/about-sjo...

You may have to continue with moist food or drinking water with your meal. ML

[Pug-Mum-89 in reply to maggielee]

Thank you, I’m seeing my rheumatology nurse today at 10:30 so I’ll see what she says 😊

[maggielee in reply to Pug-Mum-89]

Hope all goes well. There are various signs for sjogrens, hopefully they are knowledgeable enough to know about it... ml

[maye1 in reply to Pug-Mum-89]

I hope today’s appointment provides more answers for you. Let us know. Xx

[Pug-Mum-89 in reply to maye1]

Well I didn’t actually get to see the rheumatology nurse properly. She came out of her room to get a leaflet for her patient and did a double take because I looked so poorly and was really breathless. She called my consultant he came straight up and took me into another room redid my sats my oxygen levels were 95 but he decided he wanted me on oxygen to try and normalise my breathing, which helped a little, he ordered an ecg and called for an ambulance, he’s worried I may have developed another clot on my lungs or have pericarditis. He’s fuming that no other investigations were done yesterday and I was just sent home 🤷🏻‍♀️ so I’m currently sat in Wolverhampton waiting for X-ray 😔

[maye1 in reply to Pug-Mum-89]

He’s right to be furious. I’m sorry :/, I wish I could offer more. Xx

[Pug-Mum-89 in reply to maye1]

I got to come home late last night after my rheumy finished with his clinic in the other hospital and had come over to Wolverhampton and was happy with my ct scans and bloods, he’s doubled my omeprazole and increased my steroids to 40mg daily and will be sending me an appointment to have a high dose intravenous steroid boost as well, he’s going to order swallow tests too. He’s also noticed my skin is changing colour and my hair is beginning to fall out, I’ve always had thick long dark hair but it’s going very thin and and falling out at the front and on top. I’d rather it all come out than just patches 😞

He thinks I may have fibromyalgia as well because I used to just suffer with my joints. But now my bones are always hurting and sometimes it just takes a blanket or a handbag to cause me to be on the verge of breaking down. I lie awake with the pain most nights and sometimes can’t bring myself to get out of bed.

I used to be so active. Id be at work full time and if I wasn’t working or doing overtime I’d be out doing something I’d go swimming a lot before my open heart surgery in 2016 but I haven’t been in a pool since for fear of getting too breathless. Plus I’ve always worked full time up until November last year when I had my stroke and that left me with right sided weakness and seizures so now I don’t go to the pool because of fear I think. So my rheumy knows that when I go and I look unwell and say I’m not feeling well there’s need for concern because I try to hide a lot and brush things off. I force myself to get on with it a lot of the time. I’m 29, 30 on November 15th. I’m supposed to walk with a stick since my stroke to help with my balance issues but I refuse most of the time and use it only if I feel like I’m going to fall, which is ridiculous because I’m always falling. People stare at me and I’m conscious of people judging me and thinking 🤔 what’s wrong with her? When I know they probably aren’t and even if they were I shouldn’t give a toss. I’ve fought my whole life to live as normal a life as possible and often pushed myself too far for job promotions which made me ill and in turn made me miserable. It’s time now to take time for me. My rheumy has an objective to eventually get me back in a pool eventually. He’s going to get me in a hydrotherapy pool first because they aren’t deep and I’ll be monitored closely, but he says he will get me back in the pool, but to always make sure I have someone with me who can alert the lifeguard in case of a seizure because they’re not always obvious. Most of the time I am convulsing like crazy but other times I just go so floppy and dazed with just my eyes rolling. I’m determined to get there xx

[maye1 in reply to Pug-Mum-89]

Hi Pug,

That’s a lot to deal with...

I am glad the Rheum saw you and it sounds like he’s like being thorough. Even something seemingly small like having the goal to get you back in the pool is important.

You sound really strong. And I have a different situation but I get how you feel. And I agree - it’s time to look after you. There are people who make some very unexpected changes after they’ve been told they wouldn’t. You have the drive, and now you’re putting it into you and I think things will improve. Try to be gentle with yourself, it takes time. Sending you a big hug. Xx

[Karm]

Hi. I have had that exact same problem for over a year now. They don't fully know what's causing it, but also said it could be reflux issue or like a acid type issue. They only gave me some meds and have been keeping a eye on it in appointments I have and whenever they talk to me asking how it's going etc. Hopefully they can actually find out what is causing it, for all our sakes.

[Pug-Mum-89 in reply to Karm]

Fingers crossed 🤞🏻