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Chronic Fatigue Syndrome/M.E. Society

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Original post by Foo.mp3
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 :smile:


Shyte :lol: 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 :smile:

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/
Original post by WoodyMKC
Shyte :lol: 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 :smile:

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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Original post by Quiet _One86


Thanks :biggrin: 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.
Original post by WoodyMKC
Thanks :biggrin: 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.


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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(edited 8 years ago)
Unknown if linked. Sorry if this post is chaotic, but that would explain my mindset at this time.
But I have a fatigue with migraine, which won't budge. I am having such vivid dreams again but also find that I am finding I'm also too tired to complete the dream..haha.
PoTS is playing on my mind, as I can't drink much more or have more salt. Feeling jittery doing so.
Got my PiP assessment next week and don't know what to do..or to expect! Help if possible thanks.
EDS is sore and uncomfortable. Not to mention my abdominal pains..which are unexplained at this time.
Original post by Foo.mp3
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! :borat:


Wow... I thought at first, I dunno, since I'm on beta blockers for anxiety they might mess with things... but I gave the HR test a go... Laid down for 3 minutes, and got a heart rate of 64bpm... Then stood on the spot for a few minutes and tested again, shot up to 96! The beats felt a bit harder by that point too, could feel the vein in my neck pulsing a bit haha. Been lying again for a few minutes and it's dropped back to the low 60s again. Interesting...

Sounds fascinating, genuinely :smile: Give us a shout if those papers are made public or however it works, love reading anything I can about these conditions.
Original post by Quiet _One86
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 :colondollar:

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.
Original post by WoodyMKC
Sorry for the mega late reply, only just noticed you quoted me here :colondollar:

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.
Original post by Quiet _One86
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" :lol:
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 :smile:
(edited 8 years ago)
Original post by WoodyMKC
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" :lol:
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 :smile:


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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I have 2 friends with Chronic Fatigue/M.E. It makes school life hard for them as they miss most of schooling
Original post by Quiet _One86
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 :lol:
(edited 8 years ago)
Original post by WoodyMKC
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 :lol:


Cool me a cool chick 😚


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Original post by Quiet _One86
Cool me a cool chick 😚


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I'm just a hot guy :lol: 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.
Original post by WoodyMKC
I'm just a hot guy :lol: 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.


Insomnia and vivid dreams..hot guy aye :smile: hope it cools down a little!


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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
Original post by orlaaghxx
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


Hello and welcome :wink:
March was the same month I got diagnosed!! Well done for soldering through with revision..and proving that your hard work was worth it. Congrats on the grades!! What happens now? Uni or rest for a bit till you're ready for the next step?


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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
Original post by orlaaghxx
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


Oh best of luck with yr13! Im 28 - long shot of education - it's all about working now lol unless I do a college course or open university


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Original post by Quiet _One86
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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I'm sad to hear your struggles have been similiar to mine.

However, it's nice to know I'm not the only one out their with complex medical stuff.


Yeah got the letter from the cardiologist to say that although tachycardia was witnessed, the drop in blood pressure wasn't low enough for POTS diagnosis and that I was being discharged from cardiology as long as my echocardiogram comes normal (but that won't investigate POTS).

Feeling quite down today... just got my coursework in today. I know I won't have the option to do some stuff over the summer if I want to graduate with my friends. Was a real struggle so worried how I'll be with a dissertation.

It would also have been my ex and I's anniversary today. Did I say he said the main reason he broke up with me is because he was worried with my health stuff we wouldn't have healthy children? Has anyone else had an ex break up with them due to illness related stuff? Concerned no-one will want to have children with me now :'(

Anyone have any positive stories about completing their dissertation with M.E?

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