Hi everyone - this is my first post even though I've been in this group for about 3 years or so! Was diagnosed with LcSSc in 2012 after repeated attacks of Raynauds and one of my fingers eventually turning a purple/grey colour permanently and I was unable to bend it. Have had a digital sympathectomy and a few courses of Iloprost over the past 3 years along with medication. Have recently started to notice a strange feeling in my throat - a bit like when you are choked up/upset over something and feels like something is stuck there I.e. I need to swallow to try and make it feel better? Just wondered if anyone else had experienced anything similar. I know CREST include esophogeal problems but this doesn't feel like heartburn or acid reflux. Appreciate any comments, thanks x.
Strange feeling in throat? - Scleroderma & Ray...
Scleroderma & Raynaud's UK (SRUK)
I have the same symptoms in my throat as if I am choking. Horrible. I asked to be referred to the ENT clinic. I was seen by the consultant who referred me the Swallow Therapist and to have a laryngeal screening. I was given advice to have plenty of fluid (gravy, drinks etc.) when I am eating, sugarless sweets to stimulate the saliva. I was also told that when the choking happens to sniff, i.e. hold your breath whilst counting to 3 and breath out slowly. It works every time for me.
I have spells of this too. I actually feel as if there's a sticky substance right where I swallow. It's not like a sore throat at all - just a feeling of constriction or blockage. Mine comes and goes. I am diagnosed with primary Sjogren's with Raynaud's and bloods that point to Scleroderma. I find sipping at water with all food, including soup, has become essential now. Otherwise my oesophagus seems to lock when food is even slightly dry. I need water all the time to help it pass through my oesophagus. I know there is much overlap with these two connective tissue diseases but I certainly think this is due to Sjogren's dryness with me.
Thank you both for your replies - very much appreciated 😊 I find it so hard to try and explain how I am feeling sometimes. When I try to describe to my husband the actual sensation in my throat he seems to look at me blankly which makes me think I've not explained properly. The tightness in my throat gets worse if I'm feeling stressed and also can make me feel queasy. Am due to go to the Royal Free for Iloprost in October so will mention it then. Thank you again for taking the time and trouble to share your experiences. Wishing you all the best xx
I too have this feeling that something is in my throat. I have raynaud's but before being diagnosed I have went to many appointments for this. I went for a swallow test they found that there was improper drainage on the left side somewhere. After that my family doctor sent me to a stupid throat doctor twice who read the finding but whenever he would assess me by putting a camera through my nose and down my throat worse thing ever!!... he who quickly remove it and tell me there was nothing there. Really?? not what the swallow test said and definitely not how I feel. I was constantly clearing my throat throughout the day! Any fruit with small seeds like Raspberry would catch in my throat. So anyways I got recommend to see another doctor that actually listened and was very thorough. When he put the camera through my nose and down my throat it took him a while to find something but he showed me on the monitor (that the other doctor didn't have) that there was a cyst on my larynx. I ended getting minor surgery and they sent it for testing and it came back none cancerous. But I still have that tightening feeling in my throat everyday! I am so tired of this it sucks that I have to live with this for the rest of my life. I don't even mention it to my family doctor anymore because he thinks it nothing like it is just a sensation and nothing else. I find keeping water on hand while eating is a good idea or I literally will choke and I avoid anything seedy!. Good luck if I find something that helps better I will be sure to share☺
Hi, I also have scleroderma and raynauds and my mouth and throat are affected. I am constantly asked if I have heartburn and have to say no. I do find it difficult to bite and chew sometimes and get jawache. My throat sometimes does not want to swallow. I don't know if this of any interest to you but do let me know. Best wishes.
Hi - thanks for your message. I find that certain foods trigger this sensation in my throat - foods like bread, chips, crisps. Once the food gets stuck the pain is quite scary and even liquid won’t move it down and is painful to swallow. I feel as if I’ll have to be sick to clear the blockage but slowly it eases. My jaw doesn’t ache like you but my mouth is generally quite dry. Really appreciate you responding. Take care and keep in touch x