Search results

If it helps I used to have a few years of guidance from one of the Yorkshire fatigue clinic OTs that this document was reproduced with permissions from. I was diagnosed by them initially and was taught about the so called dysregulation model. It was described as fact yet with the caveat that we...

Just to add to that only since Covid my neuropathic pain has spread to my nose and all trigeminal nerves and it’s absolutely excruciating. Prior to this it was “only” in all body areas below my shoulders. I’m a firm believer there’s neuroimmune dysfunction of some flavour all over which can...

@V.R.T. I’ve had the same response post covid in palms, cheeks and ears. I think it’s a small fibre nerve/autonomic response causing vasodilation as in erythromelalgia. Eating is often a trigger for me and heat from external sources. I saw a “MCAS” specialist who thought it could be autonomic too.

Are you doubting this response in PwME over time just during an isolated episode of “easy activity” or are you also referring to when in PEM? In my case it’s both. Heart rate will continue to rise and be high during a simple activity. But if it’s been allowed to continue for too long in terms...

It’s interesting as I wouldn’t have classified myself as having signs of neuropathy when I got referred for testing at the clinic other than the umbrella terms of fibromyalgia, pots/OI and ME. However they’re still finding the same set of results in a post covid cohort. They seem to say all...

Agreed. However following my similar requests for help having a healthcare background, these doctors have often responded “there’s no point in doing further investigations if it won’t change management” and we can do that now anyway. At least symptomatically with available neuropathic meds...

I’ve tried to get nhs support from neuroimmunology despite all of my objective tests including microneurography and a skin biopsy, CPET at Papworth etc but because the underlying cause isn’t known e.g secondary to lupus or vasculitis they’re not interested. Even when referred to by a very well...

Like @Ryan31337 I’ve also had microneurography done pre-covid at King’s College Hospital with Dr Jordi Serra referred to by Dr Nick Gall. My results were similar. In particular it was reported that my sympathetic and c-fibre nociceptors were partially depolarised. Which makes total sense as my...

I don’t want to derail the thread but I also experience blue lips only since my ME has further worsened post covid with the development of cranial neuropathic symptoms. Aren’t the lips rich in small fibre nerves which regulate vascular tone and so local vasoconstriction can result in the...

This is not in-line with my experience. I had a one off CPET on two separate occasions. The second one being at Papworth Hospital. My VO2 was 19.7 ml/kg/min (68% predicted for my age and weight) at maximum and 11.2 ml/kg/min at my anaerobic threshold. Several years before that my VO2 max was...

@Jonathan Edwards - where do autonomic hot flushes or surges fit into this? As I’ve got worse I’m experiencing intense hot flushes part way through eating for example and you can visibly see increased blood flow to skin across my chest sometimes palms which go bright red along with my ears...

I’ve had a mild/low grade fever along with excessive sweating since my ME became more severe for at least 10 years now. Baseline 37.4 quite easily up to 37.8 or higher. Nurses and doctors always remark “do you feel unwell” and of course nothing is followed up on once infection is ruled out. I’ve...

I would disagree with this on some counts. I was able to complete a CPET whilst moderate but my muscles were burning that much and becoming so weak and I was gasping for air, tachycardic and didn’t get the blood pressure rise to compensate with the exercise as would a healthy person. And...

My muscle fatiguability and pem go hand in hand and can fluctuate hour to hour it’s quite remarkable. To me it definitely feels like my nerves are sensitised all the time but even more so in pem. It can be quite a quick signal to occur. Immediate during/soon after the activity, fluctuation hour...

Completely agree with your comment, unfortunately it’s not for lack of certain neurologists trying to get them engaged. I’ve been through the mill at Queens square with no luck and my private neuro-immunologist has recently tried to engage a well respected clinical autoimmunity/immunology...

@poetinsf - Interesting you did Judo as it’s a very physically demanding sport at any age that I’m not sure many people quite appreciate due to all muscle groups used and the stamina required. I used to train 2-3 times a week after school and competitions all over the country at weekends from...

Mainly just symptomatic treatment which hasn’t done much to be honest. Happy for you to direct message me to discuss more.

This may be a silly question but if nociceptors are activated in ME why are there some people that experience little pain? Pain is a massive part of my illness including head to toe burning neuropathic pain which has spread but I’m often quite astounded that some pwME only have this as a minor...

I know this is probably unanswerable but could a mechanism like this be responsible for treatment resistant nerve related pain with current pharmaceutics in ME? Nothing has helped my widespread pain and I’ve taken the majority of what’s available these days for neuropathic pain. In fact many...

I apparently have both as I get significant pem/malaise/flu like symptoms along with widespread pain and pots. I started off with mild pain and autonomic symptoms post virally which are now severe. The neuropathic pain has spread post covid from just my arms and legs to my entire face and scalp...