Throat pain and choking sensation and shortness of breath

[Santoshk7]

Hi , I am having fatigue, tingling in hands and legs, pain at back of eyes. My ANA is positive and my neurologist suspected it’s Sjogrens .

I am scheduled to meet my rheumatologist this week.

Recently I have swelling and pain more on left salivary gland.i could not notice much on right side.Does Sjogrens effect on one side?

I have agonising throat pain.i feel there is some lump in my throat .Is this Sjogrens symptom. ?

I have shortness of breath since last week which makes me panic. Shortness of breath is not continuous it comes , remains and goes .Does Sjogrens cause all these symptoms ?please share your experience

Thankyou

[Sekka]

Yes I can relate to these as I have Sjogrens but I also have Reynaud's and R.Arthritis so there are times when symptoms overlap. I will be interested to hear about your upcoming appt. All the best!

[Santoshk7 in reply to Sekka]

My Rheumy has not paid much attention to my shortness of breath.He said it’s your anxiety. He asked me to continue with HCQS tablet and meet him after 3 months

[Megansheart]

Sjögren’s seems to cause many and varied symptoms. For me pain in the eyeball was significant. I have never had the typical gritty, dry eye symptoms (whatever they are) but the eyeball pain and heaviness of the eyelids were my main eye issues. Virtually no tear production was later proved.

Have you been to see an optician or an ophthalmologist? They can effectively assess whether your eyes are ‘dry’.

Fatigue yes. Initially when I got ill with SjS I was in bed for four months the fatigue was so crippling. I thought for several years that I must have had ME/CFS. At that time my ANA’s were normal as were my Anti Ro’s. Thankfully the crippling fatigue is a now a thing of the past.

Tingling legs and strange burning/freezing sensations I got as my first symptom of SjS. It is called peripheral neuropathy. I remember one day (just before that fatique set in) I was driving to Sydney and I got out of the car in Gundagai and I felt drips of water on my legs. I looked down and searched everwhere but couldn’t find the water. That’s when I started to conclude it must have been something else going on. Then one day I was in a supermarket and felt a strong electric current going through my foot. I moved the foot quickly thinking that there was an electric short under the concrete floor, then realised the current ‘came with me’. Lol.

I have not had many problems with salivary glands apart from some recent intense ‘fizzing’ pain when I have had say a lemon based food or drink. Sjögrens can definitely affect just one side. There seems to be no rules with SJS.

Intense sore throat no, have not had. Swallowing problems, yes. Hope this can be sorted out for you. Sure it is not an infection?

Shortness of breath (SOB) yes, have had that. However during this whole SJS saga I have been diagnosed with bilateral (both sides) Bronchiectasis of the lungs. Whether this is SjS related or not is not known in my case.

SOB can also be related to infection or cardiac issues.

I hope you have a very satisfactory visit with the Rheumatologist. Do you know what your ANA titre was? Also did you have ENA’s done?

Let us know how you get on at the Rheumy!

[Santoshk7 in reply to Megansheart]

I met ophthalmologist for Schumer’s test .Got 25 mm of tears in 5 mins. TBUT-8sec for both eyes.TF-mild.Doctor concluded my eyes are moderately dry.

My ANA results

Positive

Primary dilution-1:40

Primary intensity on If-1+

ANA pattern-Nucleolar

End point Titre:1:80

[weathervane]

Before i was diagnosed with Sjögrens i had pain and swelling in the left side of my face , it was put down to grinding my teeth ( I don’t) then to a stone in salivary gland . Things then got alot worse with salivary gland infections and all my lymph nodes became enlarged and I felt very ill . I eventually got a diagnosis of Sjögrens , i saw a dental surgeon who did scan of gland which showed damage leading to swelling in face , he showed me how to massage the glands and do this every day and i can now keep things under control. For my other symptoms i now receive 6 monthly rituximab infusions which really have helped.

Regarding the throat pain, i had a constant sore throat and sinus problems, since using a saline nasal spray sterimar 2 times a day at least, this has really improved.

I hope you find a treatment that helps and you start to feel better soon, best wishes 🌸

[Sekka]

I can relate to the throat feeling and the swallowing, also the "pain" behind the eyes. It doesn't distress me too much as we know that they are all symptoms of Sjogrens and we can only treat and manage these symptoms as best we can.

As for the breathing, it may be possible that some of the cause could be anxiety but that doesn't fix it does it? Try some slow breathing exs when this happens or maybe change whatever you are doing at that moment. (From sitting down to maybe a short walk) I only suggest this as have experienced panic and anxiety myself. You will always have support from the group. I find it great! Sending you good thoughts.....

[Santoshk7 in reply to Sekka]

Thanks you.You are so great

[Sekka]

😊