HEDS & sore throat?

[Amy-Tenacious1]

Hi, anyone with a sore throat here? I’ve had a plethora of symptoms, but one I and the docs can’t seem to get by: a sore throat and hoarseness. Because of ulcers am being studied for Bechets, but somehow can’t seem to get past that it’s not Bechets. I have a HEDS diagnosis. Have had a throat issue that started with a dry cough some 30 years ago and it’s just gotten worse. The cough I did away with Lyrica, but my throat has gotten more and more sore for longer periods at a time until now my voice has been all but gone for the past two years. Working with a rheumy now, but frankly we’re very much in the dark with this. Most likely going for methotrexate next. At least it should help with GI and costo. But if anyone has any resemblance with HEDs and sore throat would info be much appreciated.

[honeybug]

Hi Amy-Tenacious1 😊🌿🌸🦋

Like you I have hEDS and a sore throat and hoarseness for over 40 years.

My throat has always displayed a variety of red shades but always angry looking.

I get so hoarse I sound more like a frog croaking than human.

After many doctors consults and tests I was diagnosed with silent reflux then GERD and IBS.

The reflux was scalding my larynx and creating the hoarseness.

Because of the GERD I have chronic postnatal drip to flooding which complicates my GERD/IBS and allergies/sinus problems. The constant mucus drainage creates a never ending cycle for GI sinus and respiratory ear overlapping problems. I used to get throat and lung infections at its worst.

I have used antacid meds Pepcid AC and anti gas meds Gas-X to help improve my symptoms.

I frequently have bouts of hoarseness but not losing my voice now.

I’m sorry you are plagued with voice loss. I know how much my episodes affected me I can’t begin to imagine how badly you are affected by a lengthy time to be voiceless.

Regarding the soreness I gargle with warm salt water and use lozenges sugar free to prevent cavities. I saw an ENT/ears nose throat specialist for these problems

I just said a special prayer for you to get this properly diagnosed and treated.

I’m so sorry you are going through this and so badly.

Best wishes to get much better soon

EvaJo aka EJ 😊🤗💗😘🙏🕊🌿🌸🦋

[cyberbarn]

If you haven't seen an ENT I think that should be your next place to go. I was having the same problems at you, and kept being dismissed by my GP. Eventually they referred me to ENT. By then it was a couple of years and I was losing my voice, and had figured out myself that it was 'silent reflux' but by then I realised that the silence part of it was referring to the voice of the patient; the GP was just not listening to the symptoms.

When I got to the ENT he was jumping up and down trying not to interrupt me telling him my symptoms, and when I got to the end we both had huge grins on our faces and said in unison, 'silent reflux'!

He couldn't understand why the GP didn't do a trial of PPIs at the very beginning of the problems. The irony was, he was a GP himself, doing a sideline of ENT work in the community hospital.

Since then I have been referred again to another ENT, (and ENT consultant) as has my son, and he has been more thorough with my son checking that he is swallowing properly because sometimes with EDS we don't swallow as efficiently and food gets stuck and that can irritate the tissues too.

When things get back for us, we take PPIs twice a day for 3 months to knock the problem in the head, then slowly wean off the morning dose for a month or two, then drop the evening dose.

At the same time, he recommended loads of Gaviscon Advanced, not eat close to bedtime, raise the head of the bed.

Both my ENTs say there is no good or bad food generally, everyone is different. For some, it is coffee, for others alcohol. the best thing to do is to experiment to see if there are different things that makes things worse. It is also worth remembering that some medications can cause problems too, like NSAIDs.

There are some very good talks from experts on EDS and gastro problems, so it is worth checking out the websites of EDS UK and the EDS Society too.

[Amy-Tenacious1]

Thanks for your replies! I have been to ENT’s and even had a broncoscopy. My larynx has been bleeding and cells have pushed through the membranes. They have no idea what it is so I always end up being at an asthma test (had five so far, vowed never again) and that’s where the trail ends. Am now at a different doc. Told him he is at the end of the food chain so an asthma test is out of the question and he can get rid of my once this thing is solved. I asked about the 2012 broncoscopy and he said the taken samples are not good enough to diagnose anything. So, I’m back to square one after 30 years. I’ll have to have a talk about silent reflux. I wonder if it can burn the whole larynx, but at this point anything is possible.

[Amy-Tenacious1]

Have ulcers been an issue?

[gillianTS]

Hi Amy-Tenacious1

I have Behcet's and EDS etc... you mentioned ulcers are you getting both? I had long term tonsillitis for over 45 years then had tonsils out but did nothing for the Behcet's simply get ulcers where tonsil were as well as throat and mouth. It is interesting they think you may have Behcet's.

[gillianTS]

I remember now we have conversed before on the Behcet's forum.