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IBP is the key symptom of an axial spondyloarthropathy - ankylosing spondylitis is the prototypical form, but other types can cause it too. It's important to understand if the pain is inflammatory or just mechanical pain :) Ryan

I'd be really interested to get your opinion on something related that also seems quite contentious @Jonathan Edwards - would you consider axial spondyloarthropathy a fit when the inflammatory changes spare the SI/lumbar spine and start higher up? If not, what's in the differential? I'm aware...

I imagine this is probably contentious but I have seen 95% listed for Caucasian, 80% for Mediterranean and only 50% given for African American AS populations. One thing to consider, which was relevant to me, is that hypermobility can skew the obvious physical presentation. My Rheumy runs AS and...

If your symptoms persist @andypants don't let the negative HLA-B27 status stop you from investigating further. Plenty of people in AS groups are negative for HLA-B27. The 90% figure drops quite a bit in some of the related spondyloarthropathies, so perhaps they've been misdiagnosed as AS but...

Hi @Dechi, Your symptoms & their timing sound a lot like inflammatory back pain to me. I would often find that changing position would give some short-lived relief, but the pain would come back within minutes, getting up and moving around was the only real solution. Sometimes after I would be...

I disagree and think there is much to be gained by seeing a specialist in a hypermobility clinic, though perhaps not directly for help with 'EDS' itself. I'm aware there are strong opinions on the validity of hypermobility as the cause for the many evils attributed to it, I'm certainly in no...

Reminds me of my cardiologist, who I respect very much, giving a lecture to his peers on POTS & MCAS. He promoted MCAS awareness by casually joking about how 'not all patients are crazy'. He's undoubtedly on our side and it was obviously said in jest, perhaps to avoid seeming like a crackpot...

I know your pain @TiredSam, 190cm (6ft 3") here. In my case the (average male height) plumber had to take out the nice new shower tray, redo all the pipework and lower it, because when I stepped up into the shower my hair was brushing the low ceiling and there was literally no room for the...

For what its worth, I can offer my own N=1 experience having had CFS diagnosis (strict criteria) for decades and now, much more recently, the onset of what appears to be a spondyloarthritis with IBD overlap. The fatigue from an IBD flare feels quite similar to PEM, in terms of making any sort...

Yes I'd agree with that. My autonomic function clearly deteriorates with over-exertion, poor sleep, infection and most other stressors. Objectively its quite clear from 24/7 tracking of heart rate ranges (postural & sleeping), blood pressure and heart rate variability, along with a slew of more...

Post-nasal drip (presumably rhinitis) has always been and remains an excellent sign-post to my current physical state. On better days its a small amount of clear phlegm present in the mornings. PEM states will increase quantity. At times of relapse (over-exerting constantly) it'll progress to...

Hi @am1978, In the context of dysautonomia eating does not preclude a low blood sugar event, in fact it may actually precipitate one. In retrospect I realise most of my low blood sugar tinnitus symptoms were a result of gastric dysmotility, rapid emptying after carbohydrate heavy meals. Ryan

Its obviously a very poor analogue but I do wonder if there could be at least some relevancy, given how similar PEM can be to overtraining syndrome.

Can't help but wonder how many of these CFS patients had an undiagnosed hypermobility condition - gastroparesis is a well recognised complication.

Hi @sb4, Yes, its an Electrophysiologist at Kings NHS trust. He seems to get the whole POTS/EDS/MCAS/SFN constellation and refers on as appropriate, whilst keeping you on as a patient to oversee and manage. In my experience he hasn't paid any attention to my prior CFS diagnosis nor has he...

You can add Microneurography to that list. I had it done yesterday and it found evidence of autonomic SFN. Really fascinating technique, I wondered why it isn't used more given some of the limitations of punch biopsies but now I understand, it is a very skilled procedure and very time consuming...

Have to ask, negative for what? Traditionally a negative TTT would mean you hadn't fainted and probably didn't have Vasovagal Syncope. But fainting is not a requirement for POTS, for example, so unless the people doing the TTT knew to look for more than syncope you may well have had another...

I see avocado listed as high histamine but it's never been a problem for me. Perhaps it's high relative to other fruit and veg but nothing compared to meats, fermented foods etc. I also tend to eat them when they're still a little firm and not too ripe, which probably helps. The yoghurt has...

Hi @JamBob, It is harder but still entirely possible to achieve ketogenesis without dairy. I did it on a very restricted diet due to multiple food & histamine intolerance. I eat a lot of egg, avocado, coconut & olive oil, coconut yoghurt, macadamia nuts & almonds. EDIT: and peanut butter...

Hi @Trish, One more to add to the list: End Tidal CO2. ETCO2 is the partial pressure of carbon dioxide at the end of an exhaled breath. It can be useful to monitor hyperventilation, something prevalent & mostly unrecognised in those of us with significant OI like POTS. This is an exaggerated...