Dental Distress (Connective-Tissue Issues)

It's almost a decade now since my disastrous dental problems began. I was still a teenager & suffering relentlessly with toothache and painfully sore gums. I consulted my Dentist numerous times regarding this miserable matter but he couldn't pinpoint an actual cause. He said my gums were severely inflamed and my teeth were very sensitive. That was the best answer he could provide me with. The annoying thing was that it couldn't be treated as there was little that could be done for sensitivity & inflammation. so I was just advised to keep my oral hygiene as healthy as possible, and avoid eating anything that triggered it off. I didn't understand why this was happening though as I wasn't someone who lived off sugary snacks, so as a rule, my teeth & gums should not have been so inflamed and sore. I mean, I liked a chocolate bar and a cake as much as anybody else, but I wasn't consuming enough to cause so much dental distress. It became an on-going issue, and over time, it got to the point of me not even being able to enjoy an occasional sweet treat as it just caused an epic "dental flare up" as I called it. Which resulted in days of toothache and swollen gums. Eventually, I was having to avoid a wide range of food & drink because anything that contained sugar (even a small amount) seemed to be the biggest contributing factor. It felt like an endless circle which was never going to get resolved. I was mostly keeping this problem at bay purely by swerving sugar, but I wasn't wholly convinced that there was no underlying cause.

It became a bit of a nightmare though as I couldn't bite down on anything solid anymore or chew hard foods without my gums starting to bleed and throb, so I resorted to blending up some foods and consuming them through a straw to avoid further irritation to my mouth. It was also a way of adding more variety into my diet instead of keeping it bland for the sake of my teeth, which I had already been doing for too long! Blending certain pieces of food up into a smoothie isn't ideal for everyone, but it's keeping my fragile gums and teeth in tact, so it's a wise & worth it alternative for me. I'm sure it's not everyone's favourite way of eating their apples, but it's my 'normal' now and I'm used to it. At least I'm not missing out on my fruit anymore! I do miss the occasional sweet treat though, but I'd tried on numerous occasions to reintroduce my mouth to a sugary snack in the hope that the same old problems might've cleared itself up, but it seemed that was a little too optimistic. I was growing really tired of not knowing what was causing this now though. I know I had permanently inflamed gums & sensitive teeth, but why? I felt like something was being missed or overlooked. There was more to this than what was meeting my Dentists eye, and I knew it! 


It all became clear in 2018 after a few dental X-rays revealed I had severe gum disease, and on examination, it was now obvious that I had a fair bit of gum recession as well. Recession and periodontal disease are both known causes of inflammation & sensitivity, but although I now had an explanation of sorts, I still didn't understand it. I wanted to know how this had happened when I'd avoided not just sugar filled snacks, but anything & everything that contained the slightest trace of sugar for the last few years. I now felt more bemused than ever but I listened carefully as the Dentist expressed his new take on the matter. He now believed my Connective Tissue Disorder, Marfan syndrome to be the root cause of all this. Well, he and the Dental Hygienist both suspected this to be the case because the gums are made up of connective tissue, and if that tissue isn't as healthy as it should be (which mine isn't) then it will lead to receding gums and periodontal disease, which inevitably causes toothache and inflamed gums. I was shocked, but not surprised to find out that Marfan syndrome was the culprit. It's affected most of my body over my lifetime and now it seemed my teeth were no exception. It all made sense now I'd been made aware of it. It was the Issues with my Tissues!


Disappointingly, at the moment, nothing has been resolved. There isn't really any treatment for receding gums and tooth sensitivity. The Dentist mentioned having Gum Graft Surgery which might help, but I have a lot on my plate with my health already, and the surgery isn't guaranteed to work, so I'm still debating whether I should put myself through it or not. I obviously don't want to live with so many dental issues forever, so something needs doing soon, but to be honest, if replacing my teeth with false ones would solve the problem, I'd have them all taken out. That's how fed up I am with this unrelenting issue. But, at least I now know that there always was an underlying cause like I suspected, and it wasn't all in my head. 

           Lucy.. From Life Of Lu.. X

The Daily Realities..

Over the last few years, I've been very open on Blogger about my life with Marfan syndrome and numerous health conditions, but I haven't been quite as forthcoming with those around me because if I'm to be honest, I struggle to fully express the significant impact that chronic illness/health conditions have on my day to day life. I don't look like someone with chronic illnesses. I don't use a wheelchair, a stick or any disability aids, so I'm afraid of telling some people in case they think I'm over dramatising it. But that is far from the truth. I've lived with chronic pain for a long time now, gradually building up and becoming more widespread over the years. I've learnt to become good at pushing my unpleasant physical sensations aside to get on with my every day life though, so no one would ever guess it. No one would know (unless you are my Mother) that on a typical day I experience several different types of pain and discomfort throughout my body, ranging from moderately annoying to severe. My connective tissue disorder, Marfan syndrome is the main cause of all this. My connective tissue isn't strong enough to support my joints, ligaments or internal organs, so this causes me to live in almost constant chronic pain. I'm usually experiencing various aches and pains when I get up in the morning, which worsen as time goes by and more often than not, I go to bed with the same amount of discomfort that I woke up with. But as a matter of necessity, I've learnt to carry on with life's daily activities regardless of how I'm feeling. I get up. I dress up, and I go about my day as normally as I possibly can. I smile, laugh, and enjoy my family's company, but I am hardly ever completely symptom free.


I also have an autonomic nervous system disorder called PoTs, something else I've picked up as a result of Marfan syndrome. PoTs alone can be a lot to cope with, let alone combined with a connective tissue disorder! The autonomic nervous system regulates vital bodily functions, so mastering the art of adapting to life with PoTs hasn't been an easy challenge. The symptoms for me consist of near syncope, nausea and tachycardia, as well as some less obvious ones like fatigue, weakness and GI dysfunction. It frequently impairs my ability to do things in a 'normal' way and I have to set aside some recovery time after carrying out simple tasks like washing my hair, dressing and showering. I often end up sitting or lying down in the middle of doing these things as being on my feet brings on the symptoms. I can't finish a meal in less than an hour because my PoTs related gastric issues prevent me from eating as fast as 'normal' people. I'm known very well by my family for being the slowest eater ever! I don't talk much about life with PoTs though as it's all a bit hard to explain when no one's ever heard of it. Plus, I don't 'look' like someone who has to rest after taking a shower, so would anybody even believe it? I can stand, walk, and talk, so I feel people would assume it can't really be that bad. 


I don't just live with Marfan syndrome, PoTs and chronic pain. I also have various other conditions including Epilepsy, a full thickness rectal prolapse, and PCOS. I'm currently awaiting bowel surgery to fix the prolapse but at the moment it's causing it's own set of problems. I hope to have it rectified by next year at least, as it's something I've lived with for almost 2 years now, and again, it was caused by my faulty connective tissue! It's not exactly a pleasant topic to discuss so I've mainly kept it to myself apart from on my blogger account where I have spoken out about it occasionally. The purpose of today's blog was just to bring attention to the fact that a person can 'look' good, or even great, and still be living with long term health conditions or chronic illness/s. Someone can be happy and enjoy life, but still feel unwell due to their medical problems. More often than not, I just choose to remain silent about it because I don't want to moan, and it's hard to explain. But it's important for others to remember that chronic pain is invisible, and so are some long term health issues, like Marfan, PoTs, and epilepsy. 

The Critique of my Marfan Physique.

Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many ...