problem to swallow

[Tuha]

Hi,

I would like to ask you if you have an advice for me and if you have similar problems :-(
The last months I have problems to swallow especially big pills and some kind of difficult food. I have also dry mouth (I was examinated for Sjoegrens syndrom but it came back negative) but I suspect that´s because of muscle weakness because I feel muscle weakness already for a long time.
Do you have similar problems and have you any advice how to solve or improve this problem

 

[Snowdrop]

This might come across as weird advice but I too have had swallowing issues. I'm not sure they are the same kind, I will take a sip of water and then realise it's still in my mouth unswallowed 20 seconds later.
I suggest that you consciously practice swallowing with nothing in your mouth to train the muscles to respond.
The beauty of this suggestion is that it's easy, free and doesn't require any props, tools, meds etc.

 

[Sherlock]

Where does the food get stuck? If it's below the level of the throat you should look into Eosinophilic Esophagitis and/or achalasia. Those are in addition to the motility disorder that Snowdrop refers to.

 

[tckats]

I developed difficulty in swallowing and found it very scary. Sometime the food would just sit in my mouth and I would wait for the initiation of the swallow. Other times my throat was dry and I neede water to get it down. Here is my hypothesis....Muscle spasms and tightness. If I stretch my neck I will get brief relief. At the same time I have noticed muscle tightness all over my body to varying degree. This along with the dryness has gone along with my need to detox especially when I eat certain foods. I have had great sucess with cleaning up my diet. I no longer eat dairy, grains, and sugar. It sucks! But I feel much better. Plus I lost 40lbs. Also, I take magnesium to bowel tolerance twice a day and recently added potassium. When taken at a high enough dose I will get a whole body relaxation.
Good luck

 

[daisybell]

Sometimes if you don't have enough saliva, you can't chew hard/dry/tough food well enough for your body to feel happy to swallow the mouthful. Large tablets do the same thing - your brain says no! Adding liquid to your mouthful of food as sauce can help with chewing the food enough. Small mouthfuls. And perhaps avoiding really difficult foods.

With tablets, I make sure I have had a sip or two of fluid first, then take the tablet plus a large mouthful of fluid, line up the tablet in the right direction and try to swallow the whole lot in one go.
If you find you cough or choke, that won't work. Some people find that taking tablets with a spoonful of yoghurt or fruit purée is easier, as the thicker smooth consistency coats the tablet.

If you are still concerned, you could ask your doctor to refer you to a Speech Language Pathologist/Therapist, as they are trained to assess and manage swallowing problems, and may have some good advice and therapy.

 

[Abha]

Hi Tuha,
Those who have tumour(s?) from hyperparathyroidism(see www.parathyroid.com) will have swallowing problems as I had before I had the adenoma(tumour)removed.I still have some swallowing problems especially with large tablets.

 

[Horizon]

I have issues with swallowing too. It's scary but my throat forgets to swallow or feels like it's closing up. Not sure what this is about or if any doctor would even take it seriously or be able to help.

 

[alex3619]

I think this problem is common in long term and also severe patients. The dry mouth problem is probably also a dry throat problem, food can stick to the sides of the throat. I also think that there may be several issues here, including motility etc. We do not really have definitive answers, but its common enough for it to be considered not atypical in long term and severe cases of ME.

I cannot eat unless the food is wet or I drink lots of water with it. I know patients who cannot swallow any pills. We know of more severe patients who are tube fed.

 

[lansbergen]

I think this problem is common in long term and also severe patients. The dry mouth problem is probably also a dry throat problem, food can stick to the sides of the throat. I also think that there may be several issues here, including motility etc. We do not really have definitive answers, but its common enough for it to be considered not atypical in long term and severe cases of ME.

I cannot eat unless the food is wet or I drink lots of water with it. I know patients who cannot swallow any pills. We know of more severe patients who are tube fed.

Mine was so bad that even water stuck sometimes in my esophagus to the point my trachea seemed to be compressed. Disappeared with overall improvement.

I still have dry mouth but to a lesser degree.

 

[Seven7]

I do also, ended up with a hatial hernia. All I got told is to be send to swallow therapy.

I know sounds silly but think about swallowing before you do it. Make it a intentional movement. Don't do something else or while your mind is not in it. See if it helps.

 

[flybro]

i've always had probs swallowing meds.

one with tabs especially bad, but can happen with foods too, I just can't swallow, it just won't happen. I've wasted a lot of meds because of this.

the other thing is, I miss swallow, and end up inhaling drink/food. This gets worse when tired, or when i haven't been able to pace.

 

[alex3619]

There are patients who have to crush meds and add them to water or juice or something else like pudding. Swallowing issues can be a very big problem, especially if it means that patients do not eat sufficiently well to maintain their health.

 

[Gingergrrl]

I don't know if this would be relevant to anyone else but the other night when I had a very severe startle reflex, in addition to my muscles tightening up (arms/legs, etc), my throat muscles froze/tightened and I had a few seconds that I could not swallow saliva. I was not eating at the time and have never had this occur while eating.

Am close to 100% certain that for me it relates to the anti GAD65 antibody and having too much glutamate that is not able to convert to GABA and I am working on ways to address this problem. I know it is a long shot but thought I'd mention it in case it could ever pertain to anyone else.

 

[Jan]

I think this problem is common in long term and also severe patients. The dry mouth problem is probably also a dry throat problem, food can stick to the sides of the throat. I also think that there may be several issues here, including motility etc. We do not really have definitive answers, but its common enough for it to be considered not atypical in long term and severe cases of ME.

I cannot eat unless the food is wet or I drink lots of water with it. I know patients who cannot swallow any pills. We know of more severe patients who are tube fed.

I can relate to both of these. I just could not eat without a drink, too dry. With PEM or bad relaspse I can lose the swalllow reflex, if there is such a thing, my brain to mouth connection seems to be at fault. Coughing up food and tablets also frequently happens with PEM or bad days. On really bad days I all but give up trying to swallow, or it takes me a ridiculous amount of time to consume a meal. I've become a really slow eater since having ME, it can be hard work trying to eat a meal.

I tend to put water in my mouth first and hold it there, then put the tablet in, I find this easier.

 

[Jan]

i've always had probs swallowing meds.

one with tabs especially bad, but can happen with foods too, I just can't swallow, it just won't happen. I've wasted a lot of meds because of this.

the other thing is, I miss swallow, and end up inhaling drink/food. This gets worse when tired, or when i haven't been able to pace.

I get this when tired too, happens frequently, my partner is so used to it he hardly takes any notice now. There's nothing like a bit of 'compassion fatigue' is there while you're nearly choking to death

 

[flybro]

@Jan I have the other end of that problem, my partners great at noticing and fast to react, so I've had a few high speed back slaps, lol.