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Perhaps some autoimmune process? I assume that’s hard to test for, since the “is ME an autoimmune disease?” question never seems definitively answered! I hope the pyridostigmine works out. I know a couple of people on it and read the side effects which scared me a lot, especially the impact on...

@Ryan31337 That’s really interesting. I hope they will try to treat you! Has the pyridostigmine helped your symptoms? I couldn’t tolerate ivabradine. I take midodrine at a high dose and that gets me upright enough to do essentials at certain times of day. (Also a calcium channel blocker but...

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 you in and has there been a benefit to knowing it’s SFN? I have pots and neuropathic pain diagnosis but would call it an itch for the first few years...

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 practices) knew more about pots than the GPs do, and both knew without me saying that I needed to be reclined ASAP and also took very seriously my...

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 problems come from muscle fatigue and which from deconditioning.

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 a general issue of things not being looked at until they are at a really critical level and then, given our general state, it’s impossible to do...

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 and sounds weird and I also am having more trouble swallowing pills and it feels like my muscles need to be toned. As I don’t ever project my voice...

Yes exactly, it’s absolutely not your fault. Unfortunately the medical narrative is patient blaming and it’s insidious. It gets inside our own heads and wastes so much of our energy as well as leaving us vulnerable to harm. At least they can try to manage POTS. When it’s purely ME related...

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 before the PACE trial was even finished (they were so sure of the results they were already rolling out the therapies!). I was dubious and had...

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 they accept in this case the process has not worked to safeguard research quality.

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 been caught up in it. They said “it’s a shame there is some overlap”. I was confused - turns out they were thinking of Dr Myhill speaking up for Andrew...

This really does sound like autonomic problems. My POTS doesn’t usually manifest like this but I have seen plenty of discussions about attacks that seem like panic but are not. I had something similar once after going out to a GP appointment which always seems one of the hardest outings and...

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. Ceiling and limit at least suggest the upper limit without you having to hit it and be up there all the time, where baseline feels like this is the...

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 the exercises...” I set him straight best I could but it really upset me. He had nothing to offer me in terms of physio because I am largely housebound...

@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 where outings were so upsetting and grief-stricken that I would then beat myself up for not enjoying them and making the most of these brief moments out...

I also couldn’t make any sense of the MEA survey based on my experience, so I just emailed the physios directly.