Saturday, June 15, 2013


I have had a problem with receding gums for the last few years, but it has recently - in the last two years - gotten a little more severe.

I take obsessive care of my teeth and gums, brushing and flossing and getting cleanings, but the gums have still continued to recede.

I have an idea that it is connected to my CFS. Any reduction in immune function can have knock on effects on different parts of the body, and can allow more bacteria growth in the mouth. Added to that is the fact that I have a dry mouth, which I first noticed after starting to take an anti-depressant, Lexapro, and which has continued with its replacement, SAM-e. Lack of proper saliva is a danger for all kinds of oral issues.

Another cause, I think, is steroids. I was taking Hydrocortisone for a year or two, and am at the moment taking Fludrocortisone, for orthostatic hypotension. Steroids of any kind, as I have learned, apparently thin the tissue of the gums and make it more vulnerable to recession.

I finally went to a periodontist - a gum specialist - last week. I found her very efficient and she gave off a knowledgeable air that was reassuring. Firstly she assured me that my teeth weren't about to fall out, which was a relief. On some of my teeth at the front there has been quite a bit of recession, and it does look scary, but she said that I had strong roots and teeth and they were not about to drop.

She also confirmed my suspicion that the steroids were damaging to gum health. She didn't tell me to stop taking the Fludro, but did question how much it was  helping me in general and whether it was worth it. My mouth, she mentioned, wasn't actually that dry, and that the dryness was unlikely to be causing the problems with the gums.

She said that surgery was an option to regenerate some of the gum, but that what she would really recommend is getting my teeth straightened. I have heard this before, I do have too many teeth in too small a space, and they are squashed in there at different angles.

Straightening teeth, of course, means braces. It was something that I really should have gotten done thirty years ago, but in nineteen eighties Ireland a visit to the orthodontist was a luxury that the vast majority of people couldn't afford. In fact, it probably wouldn't even have been mentioned as an option when I was young.

So now I am forty-one, and facing the prospect of wearing braces for a couple of years. More than that I probably will have to have a wisdom tooth extracted to allow this to happen. More fun! It's a good thing I have more or less lost my fear of dentists, or this all would be out of the question.

Of course none of this is certain. It is my decision. But it is clear that my squashed in teeth are worsening the recession in the positions where the teeth are more prominent, and that the gums get stretched when the teeth are misaligned in the mouth. It would certainly help the situation. I just have to see if I can afford it, and if I can stand the idea of train-tracks in my early forties.

There are other implications of the recession though. I have to decide what to do about the Fludrocortisone. It has certainly helped me a bit, though exactly how much I am unsure. It is probably about 5 or 10%, I find that I can be upright more easily with it, and standing is in general not such a strain on my system as without it. This is what fludrocortisone does, it helps maintain blood pressure, exactly what most people with ME/CFS have problems with.

It is a difficult dilemma. Continue taking the fludro and have maybe 5 or 10% greater activity levels, but also have gums that recede at an alarming rate, or have a manageable gum recession problem but lose that 5% or 10% that the medication was providing me with.

I have already cut the dose to half of my previous 0.1mg. I have already started to notice a difference in energy levels, and ability to be upright or stand for any length of time. Not disabling, by any means, but noticeable.

Of course 5% to most people isn't enormous, but to someone with such low levels of basic energy, any percentage point of loss or gain is significant. I have decided to give the steroid up for a while and see how I manage, but I am still annoyed at the thought that there is something out there that could, at least in the short term, improve my quality of life, but which is possibly not worth taking because of the side-effects.

After having established a certain level of activity in the last year or so, a level which is far from good but which is at least something, it is frustrating to know that I may have to take a step backward, as least for now. And on top of that, braces! 


  1. I see more adults these days with braces and they are not as conspicuous as they used to be, so good luck if you get them. I had the same dilemma about taking Hydro as you are having now. In the end I decided against taking it, as I already have osteopenia and it can lead to bone thinning. I have very limited mobility and I had tested for low cortisol on the saliva test, so a boost of cortisol would have been welcome, and I may have been able to do more activity to help my bone status, but I felt that my own glands would get dependent and wouldn't be able to produce any cortisol on their own so I'd have to stay on it or come off it and be worse. A dilemma! How was your experience with it? I'm still open to persuasion. I also considered Fludro but again faced the same problem, it being a steroid. Hope you are not affected too badly by coming off it.

    1. Thanks for your comment.
      As for the hydrocortisone, I think the key is not to take too much. I did a lot of research before taking it, and seemingly if you keep the dose below 10mg you shouldn't have any problems with any further adrenal problems. I took it for a couple of years, and came off it ok in the end, without any noticeable drawbacks. I'm not sure if it helped me that much, but if you have low cortisone it is likely to do something for you.
      There is no way around the bone thinning, I suppose, though as long as the dose is small enough my understanding is that there is not a huge danger of this.
      As for the Fludro, I think this helped me a bit too, and is probably worth a try, at least for a couple of months. as I said, as long as the dose isn´t excessive, you're probably safe enough.

  2. Thanks for putting the link to this post on my blog, I think I'm following your blog in my reader but hadn't seen this post....will check, technology baffles me sometimes!

    This is such an interesting post. I've never come across someone with ME/CFS who has commented on have receding gums too. have receding gums. Have had for a number of years, so what you say about the fludro worries me somewhat! I actually had my teeth straightened a few years ago (for vanity not for receding gums, were put on when I was 'healthy' pre ME collapse) I had train tracks on my teeth 2008 - 2011, not fun when in my mid 20s but not awful, tho it didn't help my gums, they're still receding...

    I wonder also about the impact on the fludro on my bones, I have really low bone density (again common in ME/CFS I think) so your comment about bone thinning is also troubling. I guess I have to give the fludro a try (started taking it this morning) and hopefully as I'm on such a low dose all will be okay!

    Great post, am off to make sure I am following you and to figure out why this didn't show up in my reader!

    1. Yeah, I think it is important to take a little care with steroids, though it helps if you keep the dose low. It's probably worth a try with the fludro, even if you don't take it for long periods maybe it can be something to help you at difficult times. Anyway, good luck with it. You may also ask your doctor about Midodrine, it's not a steroid so doesn't have the drawbacks. I took it for a few months and it did nothing, but some people benefit.

      I think probably a lot of people with ME have gum or teeth problems, though with so many other symptoms you don't hear of it as much. With a compromised immune system it may give the bacteria in your mouth - that cause decay and recession - more of a chance to thrive. It's just one more thing to think about, I suppose.

      If you're having trouble following me you can always do it by email, there is a little box under the paining on the right hand side where you can put your address. Also I think you are following me on FB so links to all new posts are put up there. Thanks for your interest!

  3. This blog is awesome I get lot of information through this blog I love it really thank you for posting this blog
    Teeth problems

  4. So, what did you decide on doing? Straightening your teeth with that kind of condition can be a bit tricky. You have to be very careful, not only with how you maintain your oral hygiene, but also with what you eat. But if you think you can do it, then it’s good for you. It might take you some time to complete this journey, but the result will be definitely pay off. All the best!

    Milton Wilson @ A+ Family Dentistry