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If you can’t find anything you can use, what I would do as a temporary solution is to brush with just water and then rinse with salt water. It’s not ideal but it’s a lot better than nothing. Hope you have some luck finding a new toothpaste soon!

Another option if flossing is hard to do are electric water flossers. Mouth wash is a great addition when you periodically struggle to brush your teeth. At times I have it standing by the night stand so I can access it on days I don’t leave the bed. There are also toothpaste powders that come...

@JaimeS I never had any effect from B12 shots, but 5000 mcg drops from Shot-O-B12 among others were very effective (and cheap) if you haven’t already tried them:)

Mr Pants is exactly one head taller than me. We hang all our mirrors so that the upper half is for him, and the lower half is for me. They never fit with anything else in the room, but at least we know what we look like.

It will most likely be totally fine:) this is one of the most popular rehabs for PwME, they even house us in sound proofed rooms. The rehab is great for many people who are at the milder end, very new to the illness or who have kids and need a break. Of course, legally no one can make you go...

I know, I just don't want to go. I'm too ill to benefit (and to travel there at all, really) and I have been ill for some years now so I have mastered pacing, energy economization etc a long time ago. I also don't at all like being away from my partner for that long, we have a routine that works...

:arghh::banghead: I’m up for a stay at Skogli (not by choice) and chose them because of the good reputation they have among PwME. This does not make me feel any better about being made to go there.

I always sleep horribly the night before the first day of my period and the night after. I think it's a combination of hormones and that these are the nights with the worst cramps. I never had this problem before ME, but I guess my sleep is more easily affected now. I also can't do what I would...

I think it also says a lot about how little some people understand how horrible PEM can be. It's not like it's just a mild discomfort that can be ignored to get the most out of your life (sometimes it is, but ignoring it will make it worse until it is no longer anything you can possibly ignore)...

Yes, that is exactly the kind of pain it seems to be most effective against for me. After the first couple of weeks when it made me slightly worse and disrupted my sleep it has also been more or less side effect free. Not a lot of data on this, but from what I can tell it's 50/50 who find it...

I convinced my GP to let me try Mestinon about 18 months ago, but never got as far as actually trying it until now. I have been holding off because I didn't want to muddle the results by starting it too close to my last rtx dose or while I was starting out on LDN. While LDN is extremely...

That works! Thanks:) ETA: And you are right - it's a great piece!

Link not working :(

It’s also a self fulfilling prophecy if you believe you will get better and then do. I think we all start out believing we will get better, but when it doesn’t happen we adjust our beliefs. Had I slowly improved after the first year or two I would probably agree that my optimistic outlook helped...

He lives in his own little bubble where anything that doesn’t fit his worldview just doesn’t exist. It’s truly frightening how many supposedly educated people have no clue as to what high quality research looks like. I also find it absurd that the radio station didn’t even raise any of the...

I’d like to see him say that to the face of a very severe patient.

Well done, Benji :thumbup:

My stepdad has something like it because of his significant issues with circulation in his legs. It didn’t help him at all, and triggered PEM for me when I tried it.

I'm sorry @Wonko :( Be careful and get more rest than you think you need for a while, it's so easy to seriously overdo it when you don't want to really believe the ME is back/worse again. I have really harmed myself that way before.