I'm new here, and have really enjoyed reading everyone's posts. I've never spoken to anyone with scleroderma, and it's really reassuring to know that there are other people out there going through a similar experience to me.
I was diagnosed with scleroderma about 3 years ago now, and so far have mostly just struggled with raynauds and pain/stiffness in my hands.
Over the past 6 months though I've started to get air stuck in my oseophagus, and when I try to bring it up, it comes out as a mass of white foam. My rheumatologist sent me for a barium swallow, which I had yesterday morning. The radiologist said that he could see some changes, which are very unusual in someone of my age (I'm 39), and so are most likely to be caused by scleroderma. He's going to report the full results back to my rheumatologist after looking at the results in detail though, so I don't know any more than that at the moment.
Over the past few days (and particularly today), I have a sensation of my thoat being blocked at the top, and I'm finding it quite an effort to swallow.
I wondered if anyone else has experienced anything similar? And would the barium swallow show up any problems with swallowing as well as just the trapped air/foam?
Many thanks.
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LittleMissH
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Hi yes I have exactly the same experience. Since September I have needed A and E help twice as suddenly I can't swallow at all, it is very distressing. With coughing the trapped food eventually has moved and the block moved, and yes the foam I know exactly what you mean. In November I had an endoscopy that showed I have a hiatus hernia this is not related to scleroderma. Now because my symptoms are worse and yes I know that blocked feeling in the throat! Barium swallow test is on 22nd may and I really hope it results in some treatment that can fix this. Meanwhile the rheumatologist has prescribed me domperidone 10mg x 3 times a day, this has made a big difference. Let me know how you get on, I am seeing my rheumatologist in June. Best wishes
I was prescribed domperidone..but i wouldnt take it as years ago in my 30s i took a similiar pill.called precidone i believe was the name and i landed in the hospital with atrial fib .and their was a class suit.and ill say no more..For the feeling of everything stuck in my esophegaus i take a small drink of coke..or maybe any pop..it works..and due to other stomach and esophegus problems.im not suppose to.but it works so i do..i also take dexilant for stomach and esophegaus problems..cheers to yah all..and hope whatever you decide works for you.
That must have been really frightening for you! I did start to feel a bit panicky yesterday when I was struggling to swallow? It seems a little bit easier today, but still not right.
What is domperidone? I'm on hydroxychlorequine, and have been for 3 years now. If ever I'm late taking my tablets I can really feel the effects, particularly with the pain, so I know they're making a massive difference to me.
Fingers crossed for your barium swallow. I hope that they find something that can be fixed. Let me know what they say!
Yes I completely recognise your symptoms. Exactly the same - feeling of air trapped and then the foam. To begin with I found it hard to describe to the docs but your description is 100%accurate. I found that having a warm drink and eating something like a sandwich helped. It was much much worse when I had been talking a lot and would have to stop until it had improved. My conclusion is that it's caused by the scleroderma causing lack of mobility in the swallowing mechanism therefore causing intermittent little spasms causing this. I had an endoscopy too which didn't show anything at all. So the conclusion was that it's a mechanical thing and prob helped by your domperidone. Good news is, a year on its really calmed down, and I've got used to dealing with it, which has probably helped to relax the muscles too.
Good luck and I really hope it calms down for you too.
I have scleroderma, and I've been prescribed dom peridone. I get the air thing which I can't shift but haven't experienced the foamy stuff - which sounds just awful. At bedtime I have a drink of really fizzy soda water. I don't know if it's just psychological but I feel like it has moves things along.
That's really reassuring that things have improved for you. I've been getting myself a bit worked up, thinking of the worst case scenario, so it's great to know that it might not all be bad. The foam is quite strange isn't it? My husband says it looks like I have rabies!!
Not got the white foamy stuff ..just a hacking cough with a sticky gluey spit coming up that if I swallow it...eugh!...I throw up so I try not to do that! As for food ..it hurts on the way down when I eat so I have to drink to wash a mouthful down which fills me up after just a few mouthfuls which really isn't a bother as it hurts to swallow solids anyway. I already had one endoscopy last year but the problem with swallowing wasn't as much of a nuisance then. I also had a barium meal and that was pretty nice, not! But not got any resolutions on that exam so presumed nothing too untoward going on back then, I have another endoscopy at the end of this month so we will see what it shows now. The worst of all though, is the acid reflux as it feels like my throat is burning and I know that it might cause cancer eventually if it continues so it is all good...being sardonic here! Good luck going forward pet x
I know what you mean about the barium. Not nice! Not nice in the toilet afterwards either!!!
Are you taking anything for the reflux? I also have acid reflux, but have been prescribed omeprazole for it, which really helps. I also drink peppermint tea which seems to settle things down too.
There are a few reports of mint actually loosening up the esophageal-gastric junction so many want to check that out and see if makes any difference for you. I was at a conference where rheumatologist says she tells patients to avoid even using mint toothpastes.
My acid reflux predates my sclera derma diagnosis. I have had multiple upper endoscopy visits where the doctor has had to stretch my esophagus due to difficulty swallowing. I've been on pantoprazole for a few years. It helps sometimes but I will supplement with Pepcid complete chewables as needed. I take 2 40MG pantoprazole pills twice a day. The first right before lunch (I don't eat breakfast) and then again at dinner. I have been doing intermittent fasting and it seems to have made the biggest impact for my acid reflux. No eating after dinner and I try to be done with dinner by 8:00 PM. Prior to intermittent fasting (16 hours from dinner until lunch the next day) I had nightly reflux. Fasting helped me lose about 20 pounds and the reflux has been much better. I'm sure it didn't hurt when I stopped eating so close to going to bed. Look into fasting if your reflux is persistent.
I suffer Raynaud's, Scleroderma PAH, I`ve had a Barium Swallow as I was having trouble swallowing food getting stuck ETC. It showed up that some food was getting stuck and having trouble to swallow and it confirmed that the gland at the bottom of my esophagus was enlarged so that wasn't helping me either. First thing in the morning do you have problems with thick mucus?
I got diagnosed with Raynaud`s and Scleroderma 4 years ago at the age of 26, it`s been since last July all my symptoms have got worse, but its lovely to speak to people who know exactly what your going threw.
I don't get any thick mucus thankfully. It doesn't sound nice! Were they able to do anything to improve things for you? The radiologist who did my barium swallow seemed to say that there wasn't much that could be done. I'm hoping he just doesn't know, and that someone else might have a better idea!
Hey there's not a lot they can do I was told that my throat has a coating on and that it's narrowing too. I've found adjusting what I eat and drink helps. I'm starting to struggle with bread more than anything at the minute. I have a lot of soup and softer things finding things that it's easy to go down is key because if I don't it gets stuck and I'm sick.
Hi, Kelsey! Yes, I am making a lot of soft choices and looking for things with soup, gravy, sauces, etc if I am eating out. I am used to it now. It was frustrating in the beginning when my husband would say, "Let's have steaks!" and I would think, "Are you trying to kill me?" LOL
Chicken for me is one of the worst if there is no liquid with it. And I always have liquids with me. But liveable, right, once you get it figured out. Thanks for sharing; knowing there are others out there experiencing same issues is pretty comforting, somehow.
It's awful when eating out even buying food in making different choices... everyday asking myself can I eat this etc and it takes me ages to eat anything and I feel awful and horrible..
I always make sure I have water with me when I'm eating to make sure I have something to wash it down with... Thanks for replying it's nice to hear other people are the same as me.. xxx
Exactly. Yes! the slowness! My husband was always a fast eater from being a firefighter for 30 years--they wolf down their food--and now I think it takes me four times longer instead of just twice as long.
The other thing I have to watch for is if people ask me questions or want to talk a lot. If I get distracted and try to answer I will choke or not swallow well. I have gotten more assertive with just holding up a finger to indicate I need time and they can just wait! But my friends and family get it. If I have a business lunch, I just make sure I am doing something like chowder so I don't have issues. And luckily, I really love clam chowder! Ha ha!
Yes at least 4 times longer to finish food and if people start to talk they get a look to say you have to wait but family and friends know the deal etc
If I get distracted anytime I struggle hehe do you get awful mucus stuck in the morning??
I don't have the mucus issue in the morning. In the beginning when I had the lung damage going on from the acid reflux at night, I would cough all day if I did not keep a drink with me. I thought I was having post-nasal drip--it felt like something was tickling my throat. Later I figured out that was actually one of the symptoms of chronic aspiration. And I'm a nurse. I was just so clueless about this whole thing. We spend approximately 30 seconds on this condition in nursing school.
Adjusting....ooooooh yeah. There are so many emotions and functional changes. There is the fear when you think, "What happens if it just keeps getting worse and worse?" and then it kind of stabilizes for awhile. There is the, "Hey, let's go to the cabin on the mountain" and then realizing you can no longer breathe at that altitude. There is forgetting about it, and carrying a load of laundry and getting so short of breath you can't speak for a bit. I as an oncology and palliative care nurse for 25 years. In the beginning I would feel guilty for grieving because I didn't have a rapidly progressive terminal condition; "I don't have it as bad as they do, I am such a baby!"
But change and loss all need to be grieved, and that is normal and valid.
I think if that depressed, hopeless feeling sticks around, evaluation and antidepressant meds can help tremendously if there is an element of clinical depression.
But if it is grief, maybe validating it, working through it, talking it out and picking up to move on is just as helpful.
Any change is loss! And the denial, anger, sadness, bargaining, resignation--all of those things--we will cycle through and hopefully get stronger and better as we survive each pass. It is ok, and it is normal. And thank God for forums like this where we can connect with each other.
It's wrong that it's still a unknown condition and not many people understands it..
That's all I'm pretty feeling now scared lost low mood emotional I've gone back into therapy to help me cope with it.. but never thought about grieving... I'm so glad I've found this forum...
Thank you for being so honest... I'm sat here thinking now xx
Hi, good to talk to people with similar problems. I was diagnosed with raynauds 6yrs ago, also systemic scleroderma 4yrs ago after several tests. I had similar problems to you with swallowing and my food seemed to get stuck in my oesophagus. In fact i spent most of my nites sleeping virtually upright in recliner chair, such was the horrible lumpiness in my throat, choking and coughing when lying down. I had a barium meal test done and was diagnosed with a mucosal flap,(web of skin) and a narrowing of my oesophagus. I had an oesophageal dilation performed 2mnths ago with great affect. I can now go to bed at night for sleep. Surgeon said i also had a lot of acid reflux, and perscribed esomoprazole meds. I still try not to eat after 6pm in the evenings and have had great relief, i was able to enjoy my first steak again a few weeks ago, which i havent been able to eat in quite a while!! I am 56yrs old. Good luck to you trying to get some ease, such a horrible feeling. I have been told that some people have to have the dilation done a few times, truthfully i wouldnt hesitate if this were to occur to me again! Take care and best wishes. X
That's such a positive story - I'm really pleased they've been able to improve things so much for you! I'm really hoping that I don't get to the point of not being able to eat what I want, although I'm already finding myself choosing softer foods than I used to. I hadn't really thought about why, but I'm sure it's just because I know they'll be easier to eat!
I have not had the air in the oesophagus but I have had difficulty in swallowing and choking. I was referred to the ENT (ear nose and throat) specialist. I had a scan which showed some difficulty swallowing and I was seen by the swallowing therapist. She told me that as soon as it happens I should hold my breath for a few seconds and let go for a few seconds, thus avoiding panic. I still have difficulty swallowing but her trick works. I hope this helps somehow.
Hi there, I can relate to your problems, Have been diagnosed with scleroderma now for 12 yrs, originally starting with Raynaud's and stiffness of fingers. As years have gone on, more symptoms, lung fibrosis and digestive mobility problems, in fact my whole digestive tract from top to bottom is affected. I took domperidone for several years, but cut it out as I was on so many tablets, I only took the ones I could feel the benefit from. Now I am beginning to see the benefits of it, as I have developed swallowing difficulties not to the extent you have and no frothy foam, but unless food is chewed well feel as if I am going to choke on occasions. So back to the domperidone which obviously did help. There are no two cases the same, seems you have to find coping strategies that best suit you. Wishing you all the best.
Im sorry to hear you've experienced so many problems AnnieMc. Lung fibrosis sounds a bit scary! My rheumatologist sent me for a lung function test at the end of last year, and luckily my lungs seem OK at the moment.
I know what you mean about taking so many tablets. I feel a bit like a walking medicine trolley!
Milk is a good idea. I wonder whether it coats the oesophagus a bit better than water?
Bizarrely, I find that things improve when I eat fatty food (fish & chips, curry etc), although I'd be the size of a whale of I ate that kind of thing all the time! I'd have thought that fatty things would make it worse. I think it's just about experimenting, and finding what works for you.
Ha! You are so right! I was constantly ordering an extra side of gravy or hollandaise sauce to be able to swallow--when I figured out all the calories I had to rethink my strategy!
I have the lung fibrosis also and found I had acute aspiration because the muscle in the top of my esophagus is weak and fluids were going into lungs. Speech therapist at the hospital taught me to do swallow therapy exercises that are really easy. This helps to strengthen the muscle in esophagus. The best is to drink carbonated drinks : take a sip hold it in your mouth and put your chin on your chest and then swallow, this is done with fluids only, but it makes sure the fluid and food goes into the stomach and not the lungs. Hope this may help,
My lungs were pretty bad until I got diagnosed. Once I was on the omeprazole and following GERD guidelines the inflammation died down and I improved. I will always be short of breath with climbing or exertion but at least the day to day is liveable now. I am so glad you were able to find people who could help you. Best wishes!!
Domperidone didn’t work for me. I lost too much weight as could only swallow liquid so I am now peg fed. Mine started off with the foam which is excess saliva that hadn’t swallowed . I started off on a soft food diet but when even scrambled eggs made me sick as it couldn’t go down it came back up I made the decision to have a peg as I ended up suffering with malnutrition due to severely limited diet. Best thing I ever did as weight now relatively normal and I no longer feel hungry all the time. Sometimes the worst case scenario is actually a major benefit
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But my friends and family get it. If I have a business lunch, I just make sure I am doing something like chowder so I don't have issues. And luckily, I really love clam chowder! Ha ha!
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