Chronic Fatigue Syndrome/M.E. Society

Unfortunately these people don’t tend to take you seriously unless they have direct/indirect personal experience of such illness or you present yourself a certain way; I too was condescended to by the head of the medical practice at uni when I first became ill, the ******* had the nerve to actually chuckle at me when I said I had come hoping for a prognosis. If I had that experience again now he’d be knocked off his chair.. one way or the other!

Even the ‘specialists’ are a bit behind the curve, certainly in the UK

Sorry to hear that Still happy to help as noted in previous PMs

What position were you in when you had it taken?

We can all relate to that I’m sure, however there are many things we can do to improve symptoms and treatment options should be popping up before long One thing that is clear from the research is that acceptance/positive framing is associated with relatively mild symptoms. Easier said than done, and may sound wishy washy, but it is therefore important to be accepting of what we have and try to look to the positives in all situations

I’ve done ‘Lightening Process’ (LP), which is ‘Neuro-linguistic Programming’ (NLP) + ‘Cognitive Behavioural Therapy’ (CBT), and I encourage others to try these things and mindfulness based CBT (MCBT) in particular, as I am convinced that it has potential positive benefits for everyone (whether they have a chronic health condition or not)

Oral antibiotics?

Definitely change GPs, and ideally have an advocate (someone who knows you, a bit about the condition, is adult, and has got your back) attend with you when you register with a new one

Cool. Haven’t tried it but have found Taurine (another amino acid, associated with neurotransmission) helpful with central wind up. Will have to get hold of some of this stuff and give it a shot. Demand for protein synthesis in ME/CFS is particularly marked, which is why I advocate diets high in protein

Hopefully this has been explained to you but for anyone who’s wondering SSRI’s like Fluoxetine have the potential to aid chronic pain, improper regulation of the autonomic nervous system (essentially relating to circulatory abnormalities), and depressive symptoms, in ME/CFS. I don’t take any chemical medicines myself, but I know many people find them helpful, at least for a time

That’s the spirit!

Haha, yeah.. my advice to students has always been to be real about your health situation from the outset, and impress upon others the seriousness of the condition and the limitations it imposes on you, but obviously without banging on about it/coming across like a victim

Hi guys need some help please...

Long story cut short,I have been diagnosed with CFS since 2012 and have only come to terms and accepted it in August 2014.I was taking to Germany,for private treatment at Burn out diagnostic clinic and they found that I had alottttt of problems in my blood including mitonchondrial dysfunction and low thyroid production,autoimmune disase and leaky gut.

All that gave me some closure finally as to why I was feeling so weak and exhausted all the time.So I accepted that I have this illness and it will limit a lot of things I do.I applied to uni September 2014 regardless though because I needed an element of focus in life and I have been already forced to give up so many things in the past,and I knew if I didn't give uni a shot I'd feel more hopeless than I already feel.
I whent against the will of my councillors and parents advice,and applied.It was the best decision ever.

I have made amazing new friends,all the tutors are so lovely and understanding the course itself is amazing and I love the uni atmosphere.However, I have been only going about one or twice a week ,middle of November 2014 I had operation on my sinuses,and a viral infection on my skin due to eczema ,it's been sore all over my body and my face.Weapy,itchy and just so horrible.
Consequently I missed 1 n Half month of uni and haven't been in at all this year as I'm still recovering.
Iv missed two coursework deadlines and I'm abit behind in lecture notes.My parents are trying to force me to drop out and few family members are trying to talk me into it and saying "focus on getting better first etc etc".Currently,my skin has healed abit more and I am have begun phototherapy today so hopefully I won't be getting outbreaks anymore..which means my attendance should improve.

I am 20 years old now,and already a year behind because I was forced to take a gap year.It was totally unproductive and it drove me mad tbh,I got so depressed due to lack of routine and my family just now and again come to my room to check up on me,like I was their pet dog or something.i think my parents want me to drop out because they get worried when I'm not at home,but at the same time I need to have an element of life too,and not just be stuck at home..existing.but I feel like giving up now and just dropping out because everything is literally against me..but at the same time I still really want to stay and try pass first year..but will it be possible to do so?

Sorry for the lengthy incoherent paragraphs I always feel abit confused ever since the diagnosis ,but anyway I just don't know what to do..
Any help would GREATLY be appreciated.
Thanks



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Yup. I included some related tips in my self-help protocol (Section 4, but really the whole thing is related, in an integrative sense)

ME/CFS can involve hypersomnia in its early stages, as can other conditions involving chronic fatigue (conflated with CFS)

They’re all very likely interrelated, aye (it’s rather complex integrative pathophysiology but take it from me, they are!)

I keep getting what I can only really sort of describe as 'soft spots' in certain places on my body. Its like an area that feels really tender like a bad bruise only its not bruised and I know I haven't hit it on anything. I keep getting them on my lower spine, my ribs, near my collar bone,the outside of my thighs and the top part of my knees. Does anyone else experience anything similar to this?

I get these, particularly on my forearms. Sometimes they even come up like swollen welts - like I've bashed into something. Always very tender, they come up out of nowhere but they go away after a day or two.

Mentioned it to my specialist a few years ago but she didnt really have much to say on the matter.


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I can relate to that, my health really started to go down hill in my A2 year (went undiagnosed for a couple of years), and even though I didn't have my acute onset event until the following year at uni, I found it toughest trying to do A2 levels compared with e.g. struggling through uni. At least at uni you tend to have fewer contact hours on most courses, and much more flexibility regarding time planning, as well as less time/energy draining commuting etc if you're lucky enough to live on campus

Getting upset as I keep failing to hand in my essays on time.

I just got diagnosed with IBS as well and that seems to have set my CFS off worse than usual. Just one big foggy, sleepy mess

Hey,is anyone else registered with a dietician here ? I wanna ask my doc to register me with one but iknow she's gonna be fussy and ask why so I made a few reasons ,please can anyone let me know if itl be enough?
My main reasons are that I 1)I have dairy allergy already..but I avoid these foods ,yet my skin gets worse(eczema),which makes my CFS worse also..
2)I have really bad bloating and cramping out the blue when and I can't seem to identifiy which food it is
3)and also in general I'm Always adding new supplements and changing my diet around so it'd be reassuring to have a dietician who I can go to for advise...

Will this be enough?

Thanks!&hope your all doing fine xxx


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There's a lot more you can do about that imo, but it does take training/perseverance (learning to filter, practising mindfulness, CBT type coaching yourself out of vigilance/concentration/related physiological factors like hyperventilation/non-diaphragmatic breathing)

If you haven't see it already, you may find this to be even more helpful info (granted there's a lot to take in but it's worth a read). I also consult PWME privately, as a (presently unaccredited, if experienced/well read) integrative health & wellness coach, so if you're (ever) in the London area feel free to look me up (PM for info)

You should allow yourself to doze in those circumstances for sure. I'm staunchly against sleeping in the day as optional/out of boredom etc, but where unavoidable I believe we really have to listen to our bodies

Not uncommon. I've had hypoglycaemic readings in the AM. The problem is we have metabolic dysfunctions that tend to lead to boom-bust gycaemic swing-states, so the objective is low carb intake and blood glucose smoothing. In the context of IBS prevalence in 92% of cases this means 'little and often', and ideally frontloading carbs earlier in the day (bit tricky if, like me, your appetite is greatest later in the day)

When I'm being good I tend only to have e.g. broccoli/cauli at dinner time, with some meat (protein should form the bulk of our meals really). The body finds it a bit intense at first but once you have shifted dietary habits, after a while it readjusts and you can get by on almost no carbs at all (albeit with slightly reduced physical energy). I find supplementing with a small amount of D-ribose, taken frequently throughout the day, somewhat beneficial in countering energy issues

Time of day, recent dietary habits, and periodic hormonal disturbance were probably factors. I've also had perfectly normal blood sugar readings in the past

Bit random, but does anyone here have episodes where they feel faint or have a very slow heart rate when lying down?

I get this when I've had a rough few days ME wise, like this past week. Right now it's 3am and I am really tired but I can't sleep because every time I start to drift off it feels like I'm going to pass out and my heart starts thumping really slowly and loudly. I feel like I have to move to get myself to snap out of it.

I've taken my pulse a few times when I have these episodes and I've had a heart rate of around 50bpm. Which puts me in the 'athlete range' despite having fairly poor/average fitness at the moment.

It feels kind of like having low blood sugar but I don't think it's that as I've eaten a banana, bit of muesli but the feeling doesn't go away. Also it often occurs with sleep paralysis.

Is this worth getting checked out? I'm kind of sick of being tested for things and having tests always coming back negative. Maybe I'm just a hypochondriac. Reading back through this post I definitely sound like one


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