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I hope your GP can get you help. I know well about that awful loss of sleep. I hope your GP takes the Hx of colon cancer seriously and orders a colonoscopy, if you haven't had one recently. I don't have a family history of that but am glad that my recent one caught something that puts me at high...

So glad that you found what was the trigger! I almost never eat potatoes, just sweet potatoes. Same with other nightshades.

Thanks so much to all of you about the dietary recommendations. I've actually been seeing a dietitian since 2002 (after a relapse of an eating disorder), and since 2018 have been seeing a truly excellent one, who has been working hard with me to figure out what I can get in me just to keep my...

Forgive me if I'm missing other related threads that address this issue; I'm in a bad crash and trying to write this before heading to bed--have a follow-up with my gastroenterologist tomorrow and don't want to be completely inarticulate. I've had GI issues well before I developed ME (assuming...

I'm very uninformed--who's KDM?

Sasha, I hope by now you've gotten the help you need. My GI issues started when I was about 12--had been on high doses of adult aspirin and NSAIDs for severe juvenile rheumatoid arthritis, and when my mom told my doctors she thought I might have a stomach ulcer, they said kids my age didn't have...

Wow, Kitty, you are tough! I had to have my second colonoscopy without sedation (the doctor couldn't get an IV in me), and I was screaming the whole time--my colon went into severe spasms. So as much as I hate the sedation, I'll ask for it next time. (Here in the US, it's extreme--they actually...

Merged thread Eric Topol on the Science Translational Medicine paper I haven't been able to read this yet, and it has probably been posted already (if it's worthy of a read), but in case not...

I see this thread was from 4 years ago, approx. I was just reading the Preload Failure article (https://endmecfs.mgh.harvard.edu/heartpreload/), brought to my attention by another sometimes-participant in this site, because my most prominent symptom when I'm crashing is a feeling in my...

This doesn't share any info not already known, and I was disappointed in how little time/attention was given to Long Covid in this piece, but here it is (possibly not viewable outside US and Canada?) in case anyone's interested: https://www.pbs.org/video/living-with-covid-1683399584/

I'm not in good shape right now to write letters, but once I'm better, I will. I'm a patient at UCSF for something else entirely, and maybe as a current patient expressing my disgust at a UCSF faculty member/physician espousing such views will, I dunno, make somebody at least take notice for a...

I at first felt so disappointed that monitoring my HR wasn't going to be the easy magic bullet for managing ME--but then, I never had any magic bullets for managing my unpredictable JRA growing up, either, so I should've known! But reading what you and @Kitty have said is actually very freeing...

I like your approach, Kitty. Very wise. Thanks so much for sharing this.

Yes, I tend to make everything into more of an ordeal than it needs to be. Last time I telehealthed with my ME specialist, she wanted to know my average fatigue, brain fog, and pain levels since I'd first seen her, and I figured it'd be helpful if I began keeping track of those. And I thought...

Actually, I think this is a great strategy--the idea of "just stopping" when alarm bells are going off, and also diligently scheduling in recovery time for activity that you do. I fail to do those things much of the time. It's not entirely my fault; having had chronic illness since 1976 (when I...

Thanks, Ebb Tide. I think that paying attention to amount of activity, whether physical or mental (or both), may be what I need to do. I keep a daily monitoring journal of symptoms and activity, but it honestly hasn't been helpful because, I think, it's poorly designed. I list a 1-10 number for...

Kitty, sorry you did so much work to come to the conclusion that HR tracking just wasn't useful for you. But great that you've learned to pace yourself. Do you have any tips for how to do that without a reliable and easy gauge like HR change? Because I am really struggling--if I start to feel...

Thanks for this, SNT. I'll check it out. Hmm, interesting that neuroinflammation, if evident, would be more an effect than a cause. So much yet to learn.

If I were a doctor, I fear I'd be one of those who fixated on a certain thing--I'm sort of OCD that way, exemplified by how I've been obsessing about my HR over the past few days! But I wasn't aware that a reduction in cerebral blood flow is the real issue. Very interesting. My ME specialist...

I haven't tracked BP, in part because for a while (this was well before my ME diagnosis), my cardiologist (whom I began seeing because I was having bad chest pain with exercise--in retrospect, it was ME, since TONS of cardiac testing, incl cardiac MRI and CT scans, showed that my heart was in...