Gum recession & surgery

I thought I should share my story on my dental health. I was diagnosed with ME/CFS in 2013 and was severe. I am currently in remission, which I shared here. For the past 10 years, I have been diligent about seeing the dentist for cleanings at least every 6 months. In addition, I grew up going to the dentist regularly so I have never been neglectful of my oral health. However, my gum health over the past 10 years has worsened and I suspect ME/CFS has been involved.

I had a gum grafting procedure 2 weeks ago to address gum recession and it was the most painful experience of my life. The periodontist told me I probably should have had this done years ago. If I were not in ME/CFS remission at the time of surgery, however, I think the procedure would have killed me! The pain has been unreal, despite prescription strength painkillers and opioids. Two immediate members of my family have had surgery with the same periodontist and their experience was trivial compared to mine.

In hindsight, I should have seen a periodontist years ago. So this is just an alert to ME/CFS patients to consider this if any oral health concerns. I technically had no mouth pain so I did question whether surgery was necessary. The periodontist told me 50% of his patients are asymptomatic when they come to him, and if you are in pain, that’s when you really are in trouble. Gum recession is relatively common & there are numerous contributors (eg, poor brushing technique, genetics, moving teeth, etc.). I asked the periodontist if various chronic infections (which have been central to my ME/CFS) could have worsened my recession and he said probably.

I saw my doctor (MD/PhD) who has been treating me since 2013 this past week. He said to improve my oral health there were 3 things he would consider: (1) dental laser/light which is cheap, (2) dental probiotics, and (3) xylitol rinse. I have been doing all of these except #3, which I have now added.


Senior Member
So sorry to hear how painful this was, @Rachel Straub! I had a similar procedure many years ago, prior to any official acknowledgement of ME/CFS and I too remember the pain with great clarity. I am pretty tough in general. but one of the two surgeries really floored me (I am pretty sure it was the bottom gum).

It is good to have your dentist's recommendations---I am sure they will help others. And I wish you good luck with your recovery--may it be speedy and the pain plummet right away!


Psalm 46:1-3
Great Lakes


Senior Member
Hello Everyone.....I'm 75 yrs. of age and my husband is 78. We spend considerable time and money at our dentist's office.

Rod had gum grafting many years ago and it was difficult, although you know how men are...never complain!

Anyway, we see the dentist for a multiple of reasons now. As we age apparently our teeth keep right up with us. All need to be filled again, new caps and now Rod just found out that he needs an implant (a cool $3,500 for that one tooth alone). So we really do see the dentist every 3 mos. Tooth movement can also be a problem and it takes forever to prepare our teeth for bed. We both definitely want to keep them as long as possible.....but who knew that this joins everything else?

I don't know if folks with Ehler-Danlos suffer earlier problems, but it's worth checking in with the dentist. I almost expect bad news each time I go. Better luck to each of you. Yours, Lenora