Hey all,

Hope things are ok for all of you.

As most of you know I have pretty bad dystonia and RSD (both full body), so I have difficulty eating etc. However, over the last couple of months I have been having HUGE issues swallowing.... I have lost over 20 pounds since Christmas (which is good) but I'm finding that I just can't initiate a swallow reflex.. if I do manage one then I only clear about half the food from my mouth and either have to try and spit it out again, vomit or try and swallow it again... or aspirate... (where the food goes in to your lungs).

I just really need suggestions - I am barely able to swallow saliva and most of the time my mouth is so dry (or the other extreme - then I start dribbling - bloody SPACK that I am...) It's also affecting my speech and is quite (VERY) embarrasing. Also my throat is burning so badly, especially at the back.. well in fact it burns from the mouth down..

Bizzarely I am also really off food.. I think it's dysphagia but I'm not certain... Also, as a veggie/ non gluten (well.. supposedly/ non dairy/ non eggs.... there are very limited foods available for swallowing issues.. Today it's taken me nearlly all day to drink 400ml etc..

any help would be appreciated - it's so bizzare because it's something I am used to living with, it's just that suddenly you get to a point where you realise it's a major problem in your life and you have to do something about it ....

Any help would be really appreciated!!!

Thanks

Frxxxxxx

Hey frogga,
I don't have full body RSD, but I know that my RSD has affected my reflexes in my leg, so that could definitely be a part of it.
Another possibility is that your meds might be doing it - have you talked to a doctor about it? Not to be really paranoid, but that could get life threatening really fast!


Hope things get better for you!

Hey BB

Thanks!!! I don't think it's tardive dystonia - none of my meds have really changed recently - apart from hydrogen peroxide being added (but that's for pressure ulcers on my bum, not my mouth or throat!)....

I think it's the swallowing reflex dying.. but it's just totally what I don't need right now! also, as im really struggling to take meds it just makes everything so much more difficult to do ..

but i WILL make a doctors appointment for ASAP and see what happens!

Thanks again - are you ok babe?

Frogga xxxxxxxx

Just wanted to give you a (((hug))).

I'm sorry I don't have any suggestions, other than asking your Dr..

Here's some more hugs for you!!

I am thinking about ya!

Good luck, frogga!

And yes, I'm ok - thanks for asking. Tough time, lately - I'd been pretty stable for a while, and now it seems like my symptoms are suddenly kicking into overdrive again. It's crappy timing, as I have a thesis to finish, grad school/internship interviews, and two jobs, but it'll work out. If I end up in Belfast next year (interview this week), I'll come to England to see you!

Happy thought for the day (I'm resolved to have at least one every day, now): It's strawberry season again here in the US, and I've got strawberries and whipped cream galore!

Frogga,

I am a speech and swallowing therapist- I have done tons of swallowing evaluations. What you need done is called a Modified Barium Swallow Study- This test can give you obejective data regarding your swallow. Do you have a local hospital that provides physical and speech therapy? If so they may doing the MBS. I dont want to give advice without seeing you but try taking a small sip or bite of something and tuck your chin to your chest while you are swallowing- This may help prevent you from aspirating as it closes off your airway. Also if you notice you are having more difficulty with thin liquids you can buy "thick it" at a drug store and mix a little into your drink- This will help slow down the liquids til the swallow reflex is triggered.
Let me know how you make out and try and have that test done...

Debboe

Not being able to swallow is the worst. In May of 99 I had to have a Nissen Wrap done on my stomach for Acid Reflux Disease. It runs in my family and all of my siblings have it as well. I remember the swallowing issues so well.

Debbie are you talking about putting the long noodle like tube down through the nose into the stomach and pulling it out a little bit at a time? Measuring the tightness of the esophagus muscles around the noodle as you swallow? It sucks and I was curious if that was what you were talking about. I never knew the name of it.

Even now over the last 16 months my swallowing issues are back. It is almost like you go to swallow and there is a blockage. Mind you we could be talking about drinking water. It is frustrating. I choke sometimes, I too have to spit it out and so on. Not pleasant but none of this ever is. I personally feel that the RSD/CRPS does directly effect so many functions.

Granted I do not suffer from the acid reflux like I used to but if I am not careful with all the meds I could easily end up right back at square one. I take prescription Tagamet to be safe. And of course it causes constipation.

Frogga you should see your Doc about this or have him or her send you to a Gastroenterologist. I hope my two cents helps. If not just throw it in the garbage!

Chin Up!! Mark

Oh, Frogga! That sounds terrible! The only time I ever had that happen to me had nothing to do with RSD. I had an ulcerated esophagus, which my Dr. claimed was brought on by stress (????) and it was YEARS ago, so I don't really remember too much about it except I was miserable and off work for what seemed like forever.

Please, get it checked out, and do come check back in with us. Let us know how you're doing. And do this straight away! Don't keep us worrying!

No Mark- the test I am talking about is not what you went thru. The Modified Barium procedure is the following...The patient eats and drinks a few things that are mixed with barium. The speech therapist watches via fluroscopy as the the bolus goes from the oral stage (mouth) Pharynx/larynx and then esophageal is only quickly looked at. ..Its a very simple non invasive test that can provide a lot of info regarding the swallow- Hopefully they will give some compensatory strategies to deal with what ever issues are found...

Debbie

Thanks everyone!!!!!

Debbie - I have made an appointment with my GP For tomorrow - so hopefully he can shed some light on this... it is quite distressing and VERY uncomfortable... thanks for the tip for putting your chin down - Bex and I have been trying it.. it does help as long as I go VERY VERY slowly with any food or liquid. I think the worst thing is that I go into full body spasms whilst trying to concentrate on swallowing (start jerking/ shaking randomly) because my body just doesn't want to let me...

Hopefully my dr will order a swallow test - otherwise I am going to be a skeleton by end of a couple of months.. is it normal to have chest problems with the swallowing reflex thing?

Mark - that sounds HORRIBLE! sounds really uncomfortable.. as does yours Lisa.... I think I dislike internal problems more than external ones.. well. I do today anyway

BB - if you go to Ireland that would be SOO cool - and because I study in Bath you are really not far away! would be awesome to see you!!! Strawberries are awesome.. our season is over atm... still on spring/ winter foods.. (trying to macro my diet and failing!)

IHH -- hugs back!!!!
Thanks everyone!!!

Love

Frxxxxxxxx