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Always makes my day when there's a new entry ro read!

I have experienced leg weakness and muscle twitches too. It was worse before I learned to pace myself. Occasionally, one of my legs would actually just buckle under me too. I experience similar problems with my arms as well though. It usually tends to happen if I do tasks that have too many...

If only....

Maybe under Symptoms, post exertional malaise, fatigue and crashes Or possibly under Living with ME/CFS, Lifestyle Management

They absolutely do @Barry. People with most other illnesses just have to battle the illness . Like most abusers this lot isolate us from everyone and any source of support possible. When people become so ill, their whole lives suddenly change, they usually get some support if not sympathy...

I guess it depends who they are and what their aims are. If their special interest is ritux then maybe not. If it's research into this particular illness ..... Or maybe they'll hang on until they see what direction the next research being proposed takes.

They say: So I guess, in theory, they should still get the funds. We'll have to wait and see I suppose.

I got this from a neuro - he went on about some people just being weaker than others - not their fault, just the way they're wired etc. I stopped him and pointed out he knew nothing about me. So I told him a bit about me and then he was: " well, yes. Type A,blah blah blah.... " I told him I...

I have sometimes found applying magnesium oil or having soaking in a (not too hot cause of OI) Epsom salt bath helpful - it helps take the edge off. Given where the pain is, the oil might be a better option maybe followed with a heat pack? Make sure that you rest with the whole body fully...

It should be but.... It seems doctors, nurses, physios and other "healthcare professionals" can use their professional status for their own gain and knowingly lie about sick people, fully aware that what they are doing will inflict further harm. Yet the professional organizations they are...

It's so easy to underestimate how far the rot spreads....

See this is what I find really odd. If I was deciding whether to dish out a research grant and they were in the running if I saw this there is no way in hell I would give 'em a penny. It is so completely unprofessional. Maybe they think it will go unnoticed?

Ah, but the ladies make up for it in enthusiasm & quantity of output.

Is that them green with envy over all our lovely secondary illness benefits @Trish ? :rofl::rofl:

Exactly! I had this discussion with a psych during an Incapacity Benefit assessment (now ESA). I told her that I could absolutely understand the need to check I was telling the truth, but if I was going to lie, why pick the one disease that no one believes in and means that everyone views you...

And coming soon to a MUS clinic near you..... ETA: by you, I mean us all.

I wonder if it's time for a glossary thread - all the BPS acronyms and hijacked terms up there so newbies can look 'em up. Then when they're presented with "new wine in old bottles" ( or in this case perhaps old wine in stolen bottles is more apt ) they can dig a little deeper before allowing...

Yeah, and at one point Esther Rantzen was a household name (very popular TV presenter back in the day) so people would look at you and say : "didn't Esther Rantzen's daughter have that and she got better" in an accusing tone. Sigh

This heart rate variability business is very interesting. Mine is all over the place. It seems to shoot up really high, really quickly - like by 30 bpm in about 2 minutes.

I got a mio alpha as it provided the best match in terms of the function I needed. I simply couldn't get the bloomin' thing to sync with the smartphone app. I'm usually pretty good with gadgets. I got my husband (aka the gadget king) to read the instructions and try it. No go. Then we tried...