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It would be interesting to look at people with other conditions causing stiff PRBCs, to see if they have the same response to it.... (Thinking ahead too quickly, as always – obviously the first priority would be bigger studies in ME!)

Yes, that could be interesting – it seems to run in our family. I've had it since childhood, and getting ME at 17 didn't make it any worse, but of course it's possible I might otherwise have grown out of it. My mum struggled with it all her life, but her sister (who would actually pass out if...

Yes, that's because it comes as Diclofenac sodium, or Diclofenac potassium. The potassium version apparently works quite a bit quicker than the sodium version. (I was prescribed it for a short while after an injury, and the pharmacist commented aloud that he was surprised I hadn't been given...

Diclofenac is just the generic name, Voltaren or Voltarol is a trade name. If it's diclofenac sodium (as opposed to diclofenac potassium), it'll be the same thing. The pharmacist would be able to confirm, though. I hope you get some relief from your headache soon, it sounds horrible. I never...

It's complex because no-one has followed patients over time. We have no idea how many people recover permanently, and how many have a sustained remission but then relapse again later. Even if the will were there, I don't think it'd be realistic to do this at the moment – we need stronger...

That reminded me of a tip I might or might not have mentioned here before: FaceTiming my dinner! :laugh: If I put something on a low light that's going to take a while to heat up, or I want to make sure a huge batch of chilli is simmering rather than boiling furiously, I switch on FaceTime on...

@NelliePledge and @Invisible Woman, it struck me that it'd be quite hard to choose a specialised stool without trying it out for comfort and range of heights first. A quick search for local-ish suppliers of rehab and physio equipment yielded this company, which does sell saddle stools...

So changes to the way you do it could potentially help quite a bit – e.g., keeping your frequently used pans, crockery and seasoning as close to your work area as possible, and only going to the food cupboard and fridge once. It took me a while to learn to organise everything I eat regularly...

Chazzer shop? Then you can donate it back if it's not right... :laugh:

It was, but it's long enough ago to be funny now! It was just unlucky that my neighbour was away at a conference the first night. I heard him coming home from work on the second day, and managed to yell out to him through the cat flap. Needless to say, I now have a falls alarm and a key safe...

PS: avoid perching stools, as they throw all your weight onto your thigh muscles; and if you become clumsy when you're fatigued and brain fogged, avoid any kitchen seat with legs that flare out. I had a perching stool imposed on me by Occupational Therapy, and the flared legs caused more trips...

I used to use an office chair, but the scooting action was very hard on my thighs. These are the most painful muscles of all for me, and very prone to burning like crazy as soon as I go to bed, so it was a bit problematical! It's also surprisingly hard to steer a rolling chair, even backwards...

Woo woo-woo woo woo woooo! (To the tune of The X Files)

I agree, everyone here's been very respectful. I was responding to the thought about letting people know about this dreadful outcome; what I meant was that, if the family wants to put the word out in open forums such as social media, they should do so themselves. The story would then become...

I agree, but you're right in that it doesn't capture the additional symptoms. For me at least, there are symptoms that only appear during PEM: for instance, being awake all night with a speeding brain, needing to pee every 30 minutes, and having painful joints, swollen throat glands, and burning...

I agree, but the patient and her family should be allowed to write it, since it's their story. They've already posted in detail on the blog, and may comment again in more widely-read forums when they feel ready.

I don't imagine it's causal, but massive candida overgrowth preceded the onset of my ME by up to a year. I had candida pretty much permanently until the menopause; I still get skin fungus if I eat white bread, though.

The loss of Erasmus is devastating. I'm really sorry to hear about the loss of your job, @Ryan31337.

Absolutely. In an attempt to offer a bit of positive info, one of the auditors at my former workplace developed involuntary jerking and twisting in her neck and head after a car accident. I can't remember the name, but it was a recognised condition. The neurologist treated it successfully with...

From Disability News Service: "Thousands of disabled people could have had their benefit claims stopped unlawfully, campaigners believe, after a judge found that letters sent out by government contractors were failing to stress the serious consequences of failing to attend a face-to-face...