Perhaps some autoimmune process? I assume that’s hard to test for, since the “is ME an autoimmune disease?” question never seems definitively...
@Ryan31337 That’s really interesting. I hope they will try to treat you! Has the pyridostigmine helped your symptoms? I couldn’t tolerate...
I have 2,3 & 4 but no diagnosis of SFN. I have been told it’s unclear if there is actual nerve damage and just given gabapentin. What country are...
I bought some high strength capsules and I think they made my POTS worse. Google it and it’s a potential vasodilator.
Sounds like torture. My jaw gets extremely painful at the dentists if it more than a quick check up. I have found my dentists (two different...
Sorry to hear that. I expect it’s common amongst us as the decades stack up. And yes it is a hard working area. I suppose it’s hard to know which...
Thanks. I will give it a go
Do physios work with people whose vocal/swallowing muscles are weakening? What specialism would that be? It’s not terrible yet but I think there’s...
Tagging into this thread because I want to sing!! Not especially for vagal stimulation, but because I have noticed that my voice is getting weaker...
Yes exactly, it’s absolutely not your fault. Unfortunately the medical narrative is patient blaming and it’s insidious. It gets inside our own...
This is such a useful thread. I think so many of us have had GET without actually realising it at the time. I had it via group sessions on the NHS...
I never realised how garbage all mainstream media is before!!
Yes I agree. It’s just that some can get a bit defensive and switch off from thinking about how wide the implications may actually be, even if...
Yes this is my experience with someone close to me, who said the Guardian are taking a strong pro-science stance on anti-vaxxers etc and we have...
This really does sound like autonomic problems. My POTS doesn’t usually manifest like this but I have seen plenty of discussions about attacks...
Oh to be enveloped in energy!!!
Oh good thing to consider! A baseline sounds very fixed as well, when as you say, different factors can make it unpredictable or change over time....
I agree this is a huge issue and barrier. The last referral I had was to a rheumatologist and at one point he said “well if you don’t WANT to do...
@Naomi10 I love your blog and this piece especially. I have been trying to write and process these feelings for some time. I have had periods...
I also couldn’t make any sense of the MEA survey based on my experience, so I just emailed the physios directly.
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