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Not sure if this was posted before: HERV activation segregates ME/CFS from fibromyalgia and defines a novel nosological entity for patients fulfilling both clinical criteria by Oltra et al https://www.biorxiv.org/content/10.1101/2023.10.05.561025v1

Just back from the appointment and pretty exhausted, but I thought I'd share. It didn't start well as the consultant asked what could he do for me, and I said that I have hyperflexibility and wondered if that had affected my health. He said casually 'Probably not'. (Deep breathe, remain calm, I...

Thanks, Kitty!

Thanks, Trish. I also hope the consultant is nice or at very least respectful. Though I have promised myself a huge cake if he isn't. Making it a win-win situation (kind of...not really but anything to get through it). We don't allow members to give each other medical advice, so we shouldn't...

Having been housebound with ME/CFS for over twenty years, I was recently diagnosed with autism and I now have hypermobility assessment tomorrow! I have always been hyperflexible and at the grand age of nearly 60 I can still lots of weird things with my joints and limbs (despite absolutely...

I was just looking into autistic burnout, and came across this thread. I am waiting for an assessment for autism, and I've been housebound with ME for 13 years. I've been trying to work out how they might be connected.

Latest update on rapamycin/rapamune/sirolimus: I increased the dose but the lymph node pain and fatigue flared up badly afterwards. So, I am back to cold baths and using ice packs to calm down my immune system. Very sadly, I think my experiment with rapamycin is at an end. Possible reasons it...

My experience with Rapamycin. I started a few weeks back and would just like to share progress. Background: I've been housebound with ME/CFS for the past 13 years (diagnosed 2002). My main symptoms: fatigue, brain fog and sore lymph nodes (groin, under arms, and occassionally spleen). I am...

Just an update in case anyone has advice... As the months went by, the positive effect of the steroid treatment (kenalog/triamcinolone) waned and the fatigue gradually returned but not the lymph node pain. Then I got COvid and a couple weeks after this, the lymph node pain along with extreme...

A little update... I did try the prednisolone steroid. Very sorry that I did because it brought back some very old ME symptoms...crushing fatigue, muscle twitches and morning shakes! I gather this might be because of the effect on my adrenals. The only good thing out of this is that it gives me...

I wear them and they help to stop fluid pooling in my legs. I also sleep with my head raised - have done for years - as this helped POTS. I'd love a full body compression suit - legs up to chest. I think they do them for astronauts?!

Interestingly I had the jab in April and still no lymph node pain. Would you expect such as lasting effect? I was rather hoping if I had a relapse that it might be a possible treatment option - just for occassional use. Not sure who would agree to this though?!? And not sure that sounds likely...

Thanks everyone. I've been given prednisolone for a skin condition but I'm wary to upset the new balance in my body, and it's good to know that the effects vary for individuals. It's made me a little more cautious, but helps in the consideration process.

Early in the summer I had a synthetic corticosteroid injection (Kenalog: Triamcinolone acetonide) for joint pain. To my surprise, I no longer experience the same lymph node pain and flu-like feeling on exertion. As a result I have an increased capacity for activity. It's been several months now...

Hi I registered at Cambridge core but don't seem to have any access to books?? Any suggestions??

thanks for this. Will try to log in. Really helpful.

I tried this recently. It did not work for me at all. I felt even more fatigued and flu-like, and spaced out (emotionally detached). Tried a couple of times. Very disappointing.

Thanks Diluted-biscuit. The flare snoozers are pricey. I guess because they come from Australia (I am in the UK). But will keep them in mind.

Just got my peltor optimum III ear defenders. They seem to be really effective but haven't worn them yet for long periods. They are HUGE! I was just wondering how I would sleep in them as I side sleep. So, I will definitely look for the earplugs that you recommended, Diluted-biscuit. Thanks so...

In case you come back to this thread - thanks for all who contributed here. I just moved house to a noisier neighbourhood and need some ear or defenders. Wasn't sure which to get - will try Peltor.