Does anyone else regularly have trouble swallowing?
I take exovac (salagen) 5 times per day already to stimulate saliva production and that helps, but ow when I am flaring even with saliva I have difficulty swallowing most foods like meats or vegetables. I go through the motions of small bites and eating with food, but it gets to the back of my throat sand just stops. I've had to force cough food out more time than I care to share. Rheumatologist thinks that systemic inflammation has gotten so severe that it is affecting the nerves in my throat that assist with swallowing. It's not just food, on bad days swallowing liquids is difficult too.
Has any one else had similar difficulties swallowing? Any solutions out there to this unusual problem. Hard to explain these issues to others as I am a 39 year old man and everyone (including most doctors) just says you are too young to be having these kids of problems...one of my most hated sentences to hear.
Would love to hear if anyone else has had similar issues.
Thank you,
Kristian
Hi Kristian, I am so sorry to hear the troubles you are having. I did have this problem when I initially had sudden onset of dryness symptoms which started me on this journey. All I could eat was liquidy foods. It has gotten better for me with cevimeline and supplements.
I don't know if this could be something that could help you or not, but I have two male family members who had this problem, though it had nothing to do with Sjogrens. They both had a procedure that stretched their esophagus's out and it helped them greatly. I don't know if it's something that could help you or not but couldn't hurt looking in to. I wish you all the best.
When the 'nerves are affected'. I have two kinds of problems with swallowing, related to neuropathy.
Neurological conditions related to Immune Disorders are fairly prevalent.
I'm sorry for your problems, Judes.
For me my esophagus stops moving food down and it just stops. And then food piles up and I cannot swallow the last bite.
I've had this since about 1996.
As you probably know, I also have many more parts of my body affected by neuropathy. But my throat was first, even before I developed dryness.
Keep us posted.
Regards, Elaine
First of all, when you are having these issues it is time to eat mashers potatoes, gravy, put the meats and veggies through the little food processor and eat things that are soft, moist and very small in size,.
You do not want to be hacking food out to keep from choking. This can be something that will pass, but you may need to see your neurologist and a swallowing study is probably in order.
I had swallowing issues many years ago and had a couple of swallowing studies with evidence of problems in about 3 different areas of my swallow. One thing to do is to the above things to your food to make it easier to swallow and safer. Also, when you swallow turn your head to the side like you are sort of looking off the see of your shoulder. LLike a glance to the side at about 70% with 90% being off the side of your shoulder. This opens up the throat and the esophagus and really does help precipitate the swallow. Taking a sip of liquid that the time of the swallow helps also. Another trick I learned is to always drink fluids with a straw as this really does make it easier to swallow.
If you continue to have these issues a visit to neurologist is really in order as often there can be some nerve involvement with Sjogrens and other autoimmune diseases and testing may be in order. You want to be careful so that you don't aspirate and get pneumonia. This happens when you accidentally inhale food particles into your lungs when choking or having problems swallowing. Hope this info helps some. Good luck. irish
As someone mentioned a swallowing study may be in order. It could be many things. I have dysmotility issues which sometimes impact my swallowing while other times my swallowing is fine and my intestines are sluggish. My stomach is always slow to digest things (gastroparesis.
You really need to talk to your doctor and perhaps see a gastroenterologist.
Yes, rnathans, is correct.
I saw a gastroenterologist, and had a swallowing study as well as a gastro-endoscopy.
The result was that I had a procedure on an outpatient basis to open the valve at the end of my esophagus This was done with a balloon (to stretch it open) and then botox was injected in the walls of my esophagus to keep the muscles from contracting and closing the valve again.
Most likely the procedure will have to be done again, because the botox eventually wears off and the valve fails to open properly.
So far I don't have gastroparesis, which is (I think) when the valve at the bottom of the stomach fails to open properly, so food remains in the stomach. This can be very serious.
But further down my gastrointestinal system, my small intestine fails to contract properly and bacteria, which should move into the large intestine, stays in my small intestine, causing gas, pain, bloating and diarrhea.
This is called SIBO, for Small Intestinal Bacterial Overgrowth. The solution is antibiotics to kill the bacteria. I had the test and then the antibiotics, and since then I have been able to eat a variety of foods again, with no problems. Of course, the bacteria may build up again, and then I will take the antibiotics to kill to bacteria.
So it is just 'patch, patch, patch.
Regards, Elaine
Have you recently checked the side effects of each of the meds you've been taking? You may notice something this time through.
Thank you everyone foe the tips and ideas :-)
Irish, the head turning does help significantly when I am having trouble swallowing, thank you for the trick.
Looks like I will book a scope with the ENT and then possibly GI Doc afterwards. Rheumatologist thinks it may clear up if they can get my inflammation down with starting an new DMARD called Cimzia, fingers crossed.
Hope everyone has a wonderful Thanksgiving!
Kristian
I too have been having trouble with swallowing, but also with severe spasms in my esophagus. I have been suffering for years and was misdiagnosed with gerd and silent reflux. I had several barium swallows done over yje years, all normal. I was sent to a gastro specializing in reflux and he finally did a 24 hour ph impedance/manometry testing. It showed I had jackhammer esophagus. He changed me to protonix and we trued to double my nifidipine that I was taking for raynauds, but it did nothing for my esophagus, but it did lower my blood pressure to dangerous levels. What the doctor failed to explain was that my lower esophageal sphincter, or LES, also was not opening. At this point I was vomiting nightly and lost 40Lb! In March we re did the 24hour testing and I was diagnosed with egjoo, or esophageal junction outflow obstruction. The doctor briefly mentioned botox, but said the acid reflux would be very bad. Then he left the practise. I still did not understand what I had. I pulled my records and did my research. On the test result it said I had egjoo with incomplete achalasia, which is starting to be recognized as Achalasia type 4. So I googled the best Achalasia doctor for my area and found one right in my clinic at Baylor! Long story short (too late for that!) I'm having POEM surgery next Tuesday to fix my problem! From what I can tell through research Achalasia does happen quite often secondary to sjogren's and connective tissue diseases as well, so for me a double whammy.
Find yourself a good gastroenterologist who specializes in motility problems! Don't go to a general gastro, because they just don't know! I wasted years on a general gastro!
There are several causes of swallowing difficulty in SS.
- Neurological: Certain disorders — such as multiple sclerosis, muscular dystrophy and Parkinson's disease — can cause dysphagia. But with SS we seem to be prone to some
esophageal dysmotility disorders
- Hiatal hernia and reflux esophagitis. Not due to SS, unless you develop obesity and hiatal hernia
- Myositis. Muscle weakness of the upper third of the esophagus (voluntary muscle) causes difficulty swallowing
- Dry mouth: this is a frequent cause of difficulty swallowing
- Inflammatory myopathy can cause cricopharyngeal muscle spasm (Polymyositis, inclusion body myositis)
Esophageal dysfunction can occur in a variety of musculoskeletal conditions, most notably these autoimmune connective tissue diseases. However, correlation between esophageal symptoms and investigations is frequently poor. It is often uncertain whether symptoms are caused by the underlying disease or by its treatment. As the Sjogrens Syndrome process may not be responsive to treatment, correctable causes should always be sought.
It is important to find the cause. Seek help at an Academic Gastro-intestinal Center, because this is quite complex.
Esophagrams by a Radiologist are extremely helpful. Video-taping of the process is necessary.
Rarely, the esophageal problems can cause advanced cases to aspirate food and liquids.
A detailed manuscript can be found at:
https://academic.oup.com/rheumatology/article/47/6/746/1785361
I have had swallowing problems for 10-15 years and no treatment has helped. I later developed a hiatal hernia with grade 4 gastro-esophageal reflux. In the last 5 years, I have developed
polymyositis, which has greatly increased my swallowing difficulties. Physicians have not been of any help, and the only thing that has helped has been to eat slowly and carefully, and take careful swallows. I choke several times a day, with great distress.
Sjögren's syndrome
Dysphagia occurs in three-quarters of patients with Sjögren's syndrome [15, 16] and may be related to a combination of lack of saliva and oesophageal dysmotility. As well as reducing lubrication and hence prolonging pharyngeal transit time, absence of saliva predisposes to dental caries and to oral Candida, both of which may impair mastication [17]; it also diminishes the acid clearance capacity of the oesophagus [18].
Defective peristalsis has been demonstrated in one-third or more of patients with primary Sjögren's syndrome [16, 19]. Decreased or absent contractility has been shown in the upper third of the oesophagus [20], and UOS impairment may be more severe than in the other connective tissue diseahttps://academic.oup.com/rheumatology/article/47/6/746/1785361ses [1]. Other patterns of oesophageal dysfunction have also been described [19], including achalasia [21]. Oesophageal webs are found in ?10% of patients [15].
Oesophageal symptoms do not correlate well with manometry or salivary secretion [16, 18, 22] and other unknown factors may be instrumental in the dysphagia of Sjögren's syndrome.
It has been postulated that the discrepancy between subjective swallowing difficulties and the lack of objective signs of pharyngeal and oesophageal dysmotility as assessed by videoradiography may be related to impaired parasympathetic function [23].
https://academic.oup.com/rheumatology/article/47/6/746/1785361