May is EDS awareness month! EDS is a connective tissue disorder where the collagen (the glue that holds your body together) doesn’t work properly. Collagen is responsible for so much of the body’s makeup that this condition can affect almost anywhere! I’ve spoken before about the hypermobility aspects of EDS, including pain. I’ve also talked about some of the internal co-morbid conditions (conditions that often accompany one another), such as PoTS & migraine & IBS. One of the things I haven’t really talked about is the dysphagia (swallowing difficulties) I’ve been having.
Last year I wrote about my EDS journey to diagnosis, it was a long road. However, the difficulties my EDS throws up seems to keep that long journey going. First I had to fight to get my PoTS diagnosed & now I’m having to fight to get answers as to why I’m struggling to eat. This is one of the main reasons we need more awareness about Ehlers-Dalos syndrome, amount the medical professionals & the wider public. Quicker diagnosis of EDS & it’s co-morbids & the right management can greatly improve someone’s quality of life. Being left to fight for these can not only mean we suffer while waiting, but the deterioration we can experience often can’t be undone.
So what are my dysphagia (swallowing difficulty) symptoms?
- Feeling like something’s stuck in my throat
- Burping a LOT ofter eating
- Violent hiccups
- Nausea
- Pain in my chest lasting several hours (which then causes pain in my back)
- IBS reactions occur 24hrs later than they usually would (which to me suggests it’s taking longer for food to get down into my stomach)
- Weight loss
- The skin around my throat feels funny, as though material was around it
- Feeling like I’m being strangled
- Feeling like there’s a lump in my throat
- Needing to clear my throat after eating
- On occasion, some of these symptoms have lead to an asthma attack
This has been ongoing for 6 months. I was finally referred to the Ear Nose & Throat clinic mid February. Despite being very specific that I didn’t want to be seen at the local hospital & explaining my reason’s why (they are clueless when it comes to EDS, have given me drugs I’ve told them I’m allergic to & have permanently damaged my joints), I was referred to them. I found out this week & my GP (not the one who referred me) has agreed to send the referral to a different hospital. Unfortunately, this means I’ve waited 10 weeks for no reason.
My GP has tried as much as she can & seems to not know what to do now. I completely understand this as she has to know so much about so many different conditions. Which is why I really need to be seen by a specialist.
So far we’ve tried:
- Metochlopramide (a drug to help stomach emptying)
This worked, but I had a bad reaction that put me in hospital, which you can read about in my Metochlopramide Reaction post
- Increasing my Lanzoprazole (a proton pump inhibitor)
This did nothing
- Gaviscon
Not only did this not help the dysphagia, it actually cause more problems! My throat began to burn, the nausea was so much worse & it cause stomach cramps! This was the most recent thing we have tried & I’m pretty sure it was a desperate attempt because my GP doesn’t know what to do to help.
So where am I now with it all?
My GP is convinced the dysphagia problems I’m experiencing are connected to my EDS. I’m currently not able to eat solid foods. My diet consists of liquids such as complain (a dietary supplement drink) & smooth soup, as well as foods that melt, such as ice-cream & chocolate. I’m hoping that by sticking to this liquid diet, the food that is still working it’s way down into my stomach will eventually get there & I’ll be able to introduce soft solids, such as pasta into my diet again. But it’s not just food that causes problems. Sometimes simply drinking water is enough to set my symptoms off.
I’m pretty scared if I’m honest. I know there are a lot of things that might be causing these symptoms. A friend of mine with EDS had the same symptoms start two years ago & has just had to be fitted with a feeding tube because her oesophagus has stopped working. She has spent the past two years fighting to be taken seriously. I’m hoping that my swallowing problems aren’t as serious as my friends, but I’m mentally preparing myself incase they are.
Not being able to eat normally is having an impact on my migraine & my PoTS. I am continuing to loose weight & am becoming weaker. The pain I’m experiencing is making getting to sleep increasingly difficult. On top of all that, I’m concerned that this problem will make it harder for Dan & I to conceive & for me to carry a baby to full term.
Gastrointestinal problems, such a Gastroparesis are not uncommon in EDS. We need more awareness about EDS to get people the help they need sooner, rather than later when the damage/deterioration has already happened.
UPDATE: I have been told that I need three tests to determine the cause of my dysphagia. I have had the Oesophageal Physiology tests, and have blogged about the experience. I am currently waiting for appointments to have a Barium Swallow Test and an Gastroscopy.
UPDATE 2: I have now had my Gastroscopy. Check out my Gastroscopy (with throat spray) post if you want to know more.
UPDATE 3: I have now had my Barium Swallow test, which you can read about in my Barium Swallow test post.
UPDATE 4: Find out the cause of My Gastro Symptoms, including my diagnosis of oesophageal dysmotility.
Have you experienced dysphagia before? What helped you?
Have you got any tips for a liquid diet?
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I only have trouble swallowing in the morning, so that’s easy to solve with having oatmeal for breakfast.
But I’ve heard from others with EDS (in the Netherlands that is) that they went to a speech therapist/elocutionist to learn how to swallow when their esophagus isn’t doing what it dhould be doing.
I’m sorry you have difficulties too Jacqueline. I’ve heard that speech therapy can help when the oesophagus isn’t working properly, I guess we just have to wait & see what the cause is & then make a management plan from there. Xx
I have dysphagia following two cervical fusions. I really like Ultra InflamX (you can find it on Amazon, one jar gets you 14 meals). You mix it with juice or water, and BAM. Got some nice drinks that last you a few hours and give you tons of nutrients. Plus it’s anti-inflammatory, so it doesn’t trigger nausea. Love that stuff!
I’m so sorry to hear this! Thank you so much for the recommendation, I’ll make sure I check the ingredients of Ultra InflamX to see if it’s suitable with my allergies. Xx
I’ve got a ton of allergies as well (wheat/gluten, dairy, fish, peanuts, alcohol), and I’ve always done well with it. It’s like pea protein isolate, non-dairy, GF, etc. Good luck!
Ah, I’m allergic to peas! Oh well. Xx
Thank you for educating me about the other conditions one can have with EDS. Stopping by from Spoonie Bloggers and Vloggers!
You’re welcome! There are so many co-morbids with EDS. Thank you for stopping by. Xx
I’m so sorry to hear about this! I really hope you can get this sorted soon, it sounds awful.
Corinne x
http://www.skinnedcartree.com
Thank you so much Corinne, after a conversation with one Dr that went along the lines of “hold out for your ENT referral unless you become critical & then go to A&E” I’ve finally managed to fight to get something that will ease things a little. Xx
You are absolutely right Tania about the awareness! Thank goodness you are educating many of us. I am so sorry to hear about all the horrible symptoms you are having in which must feel so uncomfortable. I hope you get more answers from the doctors and hope they take you and your friend more serious!
Thank you so much! After one Dr told me to “hold on until my referral & go to A&E if I become critical” I’ve finally managed to be heard about just how bad this has got (my GP is away at the moment) & been given something to ease the symptoms. Xx
good grief, that is all so scary and horrid. I went through a phase of choking on my food – often ending in vomiting – but it seemed to be just a phase. I still can’t really eat and do anything else though – I have to concentrate.
and yes, I too seem to be able to choke on water. and then cough it all down myself. Amazing.
I hope you manage to find someone to actually come up with a solution for you
That sounds horrid Jen! I spent 4 days on a liquid diet because even mashed potato caused intense pain in my chest. Spoke to the on call GP who told me to “hold out until my ENT referral (which has only just been sent!) & go to A&E if I become critical! I wan’t impressed with that response so took myself to a different GP who agrees that it’s much better to try & avoid becoming critical! He’s given me Domperidone &, although I’m still struggling, it’s nowhere near as much. Xx
Eeeh Tania you poor thing. Sounds like another battle with the doctors for you to. Closest I get is gastric reflux and naseau from he’ll which I have drugs for.
I can’t imagine how frightening that is.
Sending much love and I Hope a speedy appointment for ENT xx
Thank you so much! I really has been a struggle. I didn’t realise just how much it was affecting me emotionally until & was finally given a medication (related to the Metachlopramide that helped last time but put me in A&E) that has eased things. It’s not something I can take long term, at least not at the moment, so we’re just hoping it will break the cycle for a little bit at least. Xx
I have a friend who has EDS and she too has talked about some of her symptoms but I don’t believe she’s having issues with swallowing. While I was reading this I felt like I had a lump in my throat and can only imagine just how scary this is for you. I hope that you are able to get to a specialist who can assist in giving you some relief. Hugs
Thank you so much for such a lovely comment. I think my swallowing issues will likely be a co-morbid condition, caused by the EDS. It isn’t a symptom of the EDS directly. The lump in my throat I can handle, though it is worrying. It’s the pain in my chest that is really hard to cope with & rather scary. I hope my appointment comes through soon, as it’s having a significant impact on me emotionally. Xx
I have EDS and during this last year with my most severe decline as yet I’ve been having this issue. I am right there with you on the fears. It’s scary when you can’t get things to move down your throat! My geneticist recommended getting the pharmacy to compound my medications, which was something I’d not thought of before and will be checking into. Another thing is alpha lipoic acid supplementation. The EDS NF recommends this to improve symptoms associated with dysautonomia(such as impaired swallowing) as many EDSers are deficient in this amino acid. I’d give you a source but I’ve no spoons. It’s on one of their webinars on you tube though. I can’t say it works yet because I’ve just started it with approval from my docs. Other things I do to compensate is take my pills with a thick liquid like a smoothie. My diet is pretty much the same. Electrolyte tablets help me with the POTS when the swallowing issues make getting many electrolyte fluids in. Other than that, I just nervously note the symptoms and await what I know is eventually coming as I’m also one of those unable to eat enough d/t motility issues, gi distress and a multitude of allergies barring me from many choices. I am sorry you are going through it to, but I hope you can find a treatment plan that works! Thanks for these blogs. Very comforting on difficult nights like these. Many hearts and spoons to you!
I’m so sorry to hear that you’ve been declining. Sending lots of love & extra spoons your way! I’ll definitely be asking about whether compounding medications is possible here. My GP prescribed dissolvable Paracetamol, but I’m allergic to one of the ingredients! *Face palm* I’ve never heard of alpha lipoic acid, so will be looking into that too! I’ve been recommended coconut water by a friend with Gastroparesis, EDS & PoTS. She was told that it was good for electrolytes buy the PoTS nurses at NHNN. Unfortunately I ordered coconut milk with this weeks food shop instead of coconut water & the milk has no electrolyte benefits! Not clever. Thank you so much for all your support, both here & on Twitter. It really does mean to world & has made a scary thing a little easier to manage. Xx
Thanks for the other day. I was in so much pain and your replies and thanks made me smile! Sucks about the coconut water turning out to be coconut milk!!! I’ve had great luck with tolerating vegan whip cream made from coconut milk though so don’t despair! I can’t have soy or dairy, so coconut milk has nice to my body :) Thanks again for all your kind words and for putting your story out there AND being the bomb in the spoonie community. I wish you 1 million extra spoons over the course of your life <3
You sweetheart! Thank you so much for your lovely words. You’re such an interesting lady & so knowledgable, I’ve loved chatting to you. Ugh! No dairy or soya must be so hard! I’m really lucky that I’m ok with soya, I don’t know how I’d manage otherwise with all my other allergies too. I’m so glad you’ve found something that works for you. I’m definitely going to pick coconut water up in the next food shop (as long as I remember), & will have a look for vegan whip cream too. Sending lots of extra spoons your way, you’re awesome! Xx
Sending you love as always, Tania. I have learnt a lot from your post xx
Thank you so much! I’m learning as I go – a new symptoms pops up and somehow I need to find a way to help doctors look down the right path. Tricky when so few understand EDS. Xx