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This is excellent, Trish. Unfortunately I am in such a bad crash right now that I can't do this but hope to before March 31st.

Me exactly.

Thank you for sharing that. I certainly won't be going off the Rinvoq since it has my ra under control, but I don't know if I will be raising the dose from my current 15 mg per day. I am not experiencing any side effects from it, thankfully.

This is interesting to me. Again, I'm going by a statistical sample of one-- me-- but I have found the few times in the last 15 years that I have felt improved were the times I needed to do a boost and taper of steroids to control an acute RA inflammation. But I don't know if I was getting...

Caveat: I am not a scientist and this is just a one-person anecdote I will say that I have had juvenile onset rheumatoid arthritis-- yes I know that it is called juvenile idiopathic arthritis now but I've been calling it JRA since 19 76 so...-- and once c-reactive protein tests became available...

Definitely, Peter, and if I didn't have medications that need to be taken, or need nourishment (my gastro doctors, because of my gastroparesis, want me eating six small meals a day and I told them there was just no way I could do that, especially since I am supposed to be upright for an hour...

Thank you, Belvawain. I appreciate knowing I am not the only one, and I also was interested in hearing what helps you. It looks like you are a fairly new member to the Forum, so a belated welcome from me!

Thanks. That's what I was guessing but figured it didn't hurt to ask

I have been trying to get aggressive rest as much as possible but think I still may be Long-Term pem partly because I can't limit all activity-- recently I had to have three out of the house medical appointments in 2 weeks, though usually I avoid any out of the house travel /appointments/ etc...

Before I got my gastroparesis diagnosis, one of the first things I noticed was that when I ate yogurt, one of my favorite foods, I would belch and the taste in my mouth would be like a sewer. A few years ago I finally started being able to eat Greek yogurt only, but any other fermented foods or...

I think of gastroparesis as a longr-term condition, but yes, it is possible to have a gastroparesis flare and diarrhea at the same time. Im currently in that situation, although it's partly because I'm unable to eat anything but clear liquids, and I also have very slow lower gut motility so have...

Thank you so much, @shak8 . Definitely if I had just been taking clonazepam PRN, I'm sure I wouldn't have become habituated, but I don't tolerate trazodone and was prescribed daily clonazepam back about 17 or 18 years ago. So yes, I've become habituated. I have also it seems become habituated to...

I'll have to look up medications that you mentioned. I will say that I am doing a lot better having started hydroxyzine, although I am really itchy right now as the last dose is starting to wear off. Adding an H2 antihistamine might be a good idea-- thanks! Good luck to you!

I'm on a lot of meds just to allow me to sleep. Without even one of them, I, like many of you, get ever increasing insomnia that leads to heart arrhythmia, leg cramps, other issues. Some of my docs in the past have said sleep is most important, so not to worry about all the meds. But a few seem...

Horton, I don't experience this right at the moment of falling asleep, as you do, but I am experiencing thermal dysregulation ( I always need the fan on in my bedroom and wear minimal clothing, particularly when I'm crashing (and I've always been someone who was cold when everyone else was...

When I was mild, I was exactly this way. And unfortunately that meant that I overexerted by doing things like laundry and grocery shopping-- this was before I had the diagnosis so I didn't realize I needed to be more careful about pacing-- instead of doing some of the brain activities that would...

What is the safe foods list? As an update, I am now using the visible Plus app with the polar Verity sense armband, and it is really helping me learn to pace although perhaps too late, as I am now housebound and mostly bedridden and I'm having to look into getting home health care. Just a few...

@ That helps hugely. I'm in what others here have helped me to see as compounding or rolling PEM, though I'm trying to get better with pacing via Visible Plus (this app really is a game changer for me so far--been using it for two weeks).

Samuel, Kitty, and Arnie -- everything you describe, especially about air hunger and hyperventilating, low blood O2 saturation, etc, fit with what I've read about breathing and ME. I've had a few occasions when I've come close to hyperventilating, and back when my illness was milder and I did...

I don't have an oximeter, but every time I get in measured at a doctor's office or in hospital, my O2 level is normal.