Chronic Fatigue Syndrome/M.E. Society

How’d you get on?

For me the feeling of overwhelmedness only creeps in when my personal circumstances and my health are dire. If you can manage either, and ideally both, then you should see a significant improvement

Haha, doh! Hopefully managing the orthostatic side a bit more consciously will bring some improvement

Shyte The doc did the usual, my M.E. specialist appointment is still in the works so we'll leave all this up to the specialist to deal with, which could take forever.

Yeah it sucks sometimes, but I've survived up to this point and it's been a lot worse in the past, so I'll manage

I found a very interesting page on dealing with hypovolemia after having read some bits on it you've linked me to in the past, do you reckon this all sounds good? Was thinking of going to another GP at some point with some printouts and hope they're not so quick to pass the buck.
http://www.cortjohnson.org/treating-chronic-fatigue-syndrome-mecfs/enhancing-blood-volume-in-chronic-fatigue-syndrome-mecfs-and-fibromyalgia/

Good luck!


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Thanks I've definitely seen some improvements in the PoTS-like/hypovolemia symptoms by increasing both my salt and fluid intake and eating every few hours without stuffing myself. I've got High5 electrolyte tablets that I have with a pint of water 4 times a day, a couple of them in water makes a gram of salt, some potassium and some other bits which should help from what I've read.

You could always do a comparative HR test at home/the gym. Just lie down for 3 mins then take a reading, then stand up for 3 mins and repeat. If there a significant difference in the HR e.g. 20-30bpm+ then you've grounds to believe you may have POTS (one form of orthostatic intolerance)

Aye, Cort is a good guy, who knows his stuff, and is very well connected in the research world as expert patients go (he was also kind enough to be very complimentary about my original review piece [which complimented the wellness protocol article and which I’ve subsequently taken offline, in order to convert it into a series of academic papers, the first of which is presently under peer review])

Professor Rowe is someone I have also consulted on my work (he was kind enough to offer me his feedback on my manuscripts on a couple of occasions), and it is the work of his team on neurogenic sensitisation that formed the inspiration for my own medical hypothesis; he is something of a world expert on the abnormal haemodynamic (hypovolemic) aspect of the condition, and it is the advice of his centre (John Hopkins) that formed the basis for my own research/advice in that particular area

Awesome!

Can I ask how long you've been going through all this, triggers and ages if you don't mind me asking? How old are you now, do you think it's improved at all over time?
I wonder if getting older is affecting me more myself!! Esp,with joint & muscular pains. That said I'm needing my walking stick more & I had a shivery shaking fit earlier which scared me a lot!! Left me needing heaps more salt and water!! Well done keeping on top of it all.


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Sorry for the mega late reply, only just noticed you quoted me here

It's been about 5ish years since things first started, but the onset was gradual. Just remember having a recurring viral infection over the course of one summer and I never seemed to be the same afterwards. I'm in my mid 20s now, the condition has worsened with each year gone by unfortunately. Crazy to think that just 5 years ago my philosophy on weather was, the hotter the better. Used to love the sweltering heat. Now I just can't wait for the winter, my symptoms are all round much better in the cold weather.

It's all good. The infamous viral infection..got to hate them. So we're of similar age, that's nice to know of sorts because its hard to find people our age that relate that I've met or know. I love the warmth of the sun just not the humidity mugginess. I hate feeling cold but love crisp winter sunshine/blue skies to go on short walks in. I miss my sporty side, but with the new changes to my health I'm not sure I can cope aside from perhaps doing some swimming or static cycling.

Indeed, met a few young M.E. sufferers on here but we're far and few. Yeah I like a bit of sun, just a general heat thing for me. Sitting in front of a fan right now indoors because it's too hot and muggy. Thing with me is, I never really feel the bitterness of the winter anymore because it seems like I'm always warmer than everyone else anyway! So what most people feel is "pretty hot" I see as "better stay inside today, lest I get heatstroke" and what people feel is "bloody freezing" to me is "a bit nippy"
Yeah as I mentioned earlier in the thread I try and lift weights at least a couple times a week but I'm doing so about once a week atm, too hot for me to keep it up... Whereas in the winter I can normally manage 2 times a week, sometimes manage 3 days a week

I am more likely to feel the cold more but saying that I'm in a hot mode today! Headaches and insomnia could be to blame! I think the PoTS has to blame about my inability to stabilise properly!


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Yup, from what I've read both M.E. and PoTS both can cause poor body temp control. Mine obviously thinks that hot is the new normal

Cool me a cool chick 😚


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I'm just a hot guy Oh I forgot to add about the insomnia on my last post, used to be terrible for it in the summer but it's not been bad this year since I started having a fan pointed at me whilst I sleep.

Chronic Fatigue sufferer here, diagnosed in march after months... missed so much school had an attendance of about 70% trying my absolute hardest to get in everyday. Could barely revise for my AS levels almost didn't make it in for a few modules. Got results today 2 As and 2 Bs feeling blessed... not what i thought id get this time last year haha just letting everyone know that perseverance despite how difficult pays off. All my love and support to other sufferers xx

Thank you!! Well they were only my ASs so I've another year of school yet thank goodness I don't think I could cope with moving away from home at this stage 😂 but rest for the last of the summer and try my best next year xx what stage are you at school or uni? Xx

I did get a high BP to low so POTS confirmed but otherwise I'm very much the same re stomach Migraines and my mental stability though is what I need to keep an eye on and my physical to match because it's a daily change for me which is hard going. I'm being told lactose, gluten, eggs, beef, almonds and I get headaches with tomatoes/cucumbers.


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