[Jamie]

(Original post by starxriddled)
It's not necessarily a case of how far you walk anymore, you have to do 8 hours of planned activity a day for Gold.

As you have to do a presentation at the end, we spent a lot of our time researching during our expedition for this.

I only managed bronze, appears to me that its a hell of a lot of extracurricular time to get silver and gold under your belt.

Kudos

[starxriddled]

(Original post by Jamie)
I only managed bronze, appears to me that its a hell of a lot of extracurricular time to get silver and gold under your belt.

Kudos

The things I've done, especially my 'service in the community' have really had a huge impact upon my life.

[Jamie]

(Original post by starxriddled)
The things I've done, especially my 'service in the community' have really had a huge impact upon my life.

So, a quick look at these posts and your previous ones tells me
- You have an exceptional academic record at GCSE and are on course with A-levels
- You plan to doa joint honours degree
- You maintain an active sexual relationship
- You do a lot of community service and extra curricular activites.


In my opinion your doctor would have been bonkers to say you have Chronic Fatigue Syndrome.
The people coming to CFS/ME clinics struggle much of the time to even leave the house, let alone all this.
You don't need a diagnosis of CFS, you need to give yourself a break.

[xxAuraliaxx]

hi, i think i have me, suffered very debilitating fatigue for over a year now (various tests done/ not showing any results), along with every other symptom ive come across, but if im diagnosed i wont get into my desired course, plus they cant fix it anyway, so i was wondering are they're actually any benefits to being diagnosed or should i just continue to live with it - its very upsetting to me knowing i have to feel like this the rest of my life! or could you give me any tips to living with such excessive fatigue.

[marille]

(Original post by BeccaAnne94)
My mum was diagnosed with this last week, she works as a receptionist at my old primary school but has been on sick leave since mid-october because she's too tired to do much else.
She's going to see a neurologist at some point and is currently on anxiety medication because she couldn't think straight.
It's making life at home a bit hard, my dad hates his job but he gets good money for it so when he gets home he plays computer games to relax, my younger brother and sister are helping out a bit but aren't really old enough to handle most things. Which leaves me, I try to help out as much as I can (cooking tea, cleaning etc.) but I'm finding it hard to balance this with my studies. I want to be a nurse and I don't mind helping out, but I have 7 exams this month and once they're over I'll be taking up things again; driving lessons, St Johns Ambulance, volunteering at Cancer Research and helping in a pre-school. Everything just seems to be building up .
I feel like I'm being really selfish because it's not me who's ill but I'm struggling to take over when both my mum and myself aren't getting any support from the others.

Sorry if I've gone on a bit there, just needed to let it all out :/

Sounds like things are really tough. Do your family know you feel under so much pressure?

(Original post by sosotalk)
Oh gosh. That's a familiar feeling. It's been hard adapting how I study as well because before I got ill I had to handwrite immaculate notes to revise from. I still do to a certain extent but I actually allow myself to use powerpoints and class notes instead.

Also, did you do any ancient history in Cardiff University? It's one of my potential choices so any information would be welcome.

My main is Oxford University. I'm really worried that if I get the grades I'll go there and get really behind due to ill health. That would suck :/

I'm at Oxford, and I get by. : ) The toughest thing is not being able to do as much as others, both socially and academically, but you do get used to it. I get set twelve essays per (eight-week) term, and I usually manage to get 8-9 of them done. I'm not able to put as much effort in as most others can, either - I definitely don't spend all my waking hours in the library. My tutors are very understanding, though, and I'm on track for a 2.i, so it's all fine.

It is very difficult, but it's worth the pressure if you know you wouldn't want to be anywhere else. If you want to chat at all about it, I'd be happy to go into more detail via PM. : )

[marille]

(Original post by Jamie)
So, a quick look at these posts and your previous ones tells me
- You have an exceptional academic record at GCSE and are on course with A-levels
- You plan to doa joint honours degree
- You maintain an active sexual relationship
- You do a lot of community service and extra curricular activites.

In my opinion your doctor would have been bonkers to say you have Chronic Fatigue Syndrome.
The people coming to CFS/ME clinics struggle much of the time to even leave the house, let alone all this.
You don't need a diagnosis of CFS, you need to give yourself a break.

CFS affects people in different ways. Distinctions are made between mild, moderate and severe CFS, and the fluctuating nature of the illness means that someone can be capable of doing something one day that they won't be able to do the next. Some of those who go to CFS clinics are able to work full-time if they do little else but rest; others are unable even to sit up in bed without assistance. (See here for a good activity/disability scale.)

If someone who chooses to post here has been given a diagnosis of CFS, that should be enough for you. I don't know what your motives are in posting the kind of things you have, but please respect that a lot of people with CFS have a difficult enough time trying to explain the illness to those they meet in their daily lives, and let this be a place where they don't have to constantly justify themselves.

[Jamie]

(Original post by marille)
CFS affects people in different ways. Distinctions are made between mild, moderate and severe CFS, and the fluctuating nature of the illness means that someone can be capable of doing something one day that they won't be able to do the next. Some of those who go to CFS clinics are able to work full-time if they do little else but rest; others are unable even to sit up in bed without assistance. (See here for a good activity/disability scale.)

If someone who chooses to post here has been given a diagnosis of CFS, that should be enough for you. I don't know what your motives are in posting the kind of things you have, but please respect that a lot of people with CFS have a difficult enough time trying to explain the illness to those they meet in their daily lives, and let this be a place where they don't have to constantly justify themselves.

1) Her point is she hasn't been given a diagnosis of CFS
2) If she has a mild form of CFS and is able to do that level of activity (more than most 'well' people) then we may as well call the sniffles 'mild bubonic plague'.
3) The is a numerical point where you include so many people in the 'disease' that it ceases to be a disease and becomes 'normal'. [case in point 'hypercholesterolaemia']

[marille]

(Original post by Jamie)
1) Her point is she hasn't been given a diagnosis of CFS
2) If she has a mild form of CFS and is able to do that level of activity (more than most 'well' people) then we may as well call the sniffles 'mild bubonic plague'.
3) The is a numerical point where you include so many people in the 'disease' that it ceases to be a disease and becomes 'normal'. [case in point 'hypercholesterolaemia']

None of the things she described doing is impossible with CFS. She didn't talk about how long it takes her to recover, or how frequently she relapses, for example, and said in her first post that she experienced symptoms. If we jump in and assume that people who manage those things cannot have CFS, we're not being helpful or respectful of what is a complicated illness (I am diagnosed with it and am not far off, for example).

Sorry if I seemed to be having a go before - I didn't see that she hadn't been diagnosed yet - but I still don't think it's helpful to make such judgements.

[Jamie]

(Original post by marille)
Sorry if I seemed to be having a go before - I didn't see that she hadn't been diagnosed yet - but I still don't think it's helpful to make such judgements.

Judgement is all there is when it comes to 'diagnosing' CFS.
Its not like there is a test for it, and the symptoms are invariably vague and varied.

Ergo you give a list of your symptoms to a doctor and they judge on whether, in their experience and training, they think you have the/a medical condition.

And when they so no, you, as the patient, judge whether you will accept it, or visit as many doctors as it takes before one says what you want to hear.

[BeccaAnne94]

(Original post by marille)
Sounds like things are really tough. Do your family know you feel under so much pressure?

Thanks . We've mentioned it to them a few times and they are getting a bit better. We're making small adjustments so that I can still study (e.g. having smaller meals or my dad cooking for a change) and my exams finish next week so hopefully they'll still feel like helping out once in a while :/.

[fredscarecrow]

(Original post by Jamie)
Judgement is all there is when it comes to 'diagnosing' CFS.
Its not like there is a test for it, and the symptoms are invariably vague and varied.

Ergo you give a list of your symptoms to a doctor and they judge on whether, in their experience and training, they think you have the/a medical condition.

And when they so no, you, as the patient, judge whether you will accept it, or visit as many doctors as it takes before one says what you want to hear.

I shouldn';t really be commenting because we've got into fights over this before and I dobut that's going to change...but I don't really understand why you insist on commenting on these threads. You've got an opinion - we've witnessed that plenty - but so do we. I know you think CFS either doesn't exist/is usually misdiagnosed. Those of us on here would give ANYTHING to be told by our doctors we had a vitamin deficiency which could be cured/helped easily. Literally anyhting. Being told you've got CFS is like being told you might aswell hit your head against a brick wall for the rest of your life. Painful, annoying and utterly pointless. What we do is come on here to release our frustrations at each other - not to be told we're making it all up and wasting people's time. We get that enough in day-to-day life I can assure you.

As for the girl you made the point about doing her DofE - did it occur to you it might have been before she got sick, or that she has good and bad patches? And that maybe in a good patch she made her self do something she could be truly proud of..because honestly lying in bed dozing all day and dealing with the pain really makes you want to use your good time well. Medically unlikely? Perhaps. But I know a bloke who completed a physical endurance test to become a Marine and found out afterwards he'd fractured both legs in the process - he shouldn't have been able to run or climb or anything. I also know a lady with cancer who ran a marathon.
Some days I can't get downstairs. I can't stand for long enough to cook a tin of soup on the hob, I can't get to the shop two doors down to buy a pint of milk. But last summer when I had a good patch, I was running 9 miles a week. It crippled me for months and I nearly failed my exams because of it, because I crashed and ended up relapsing, but the joy I felt whilst I was running means that I would do that a hundred times over despite the horrificness of after. Human beings are amazing and we can force ourselves and push ourselves in incredible ways.

[robstening]

Thinking of starting a twitter account purely to update people on this (probably anonymously) so people can see the effects of symptoms etc. Good idea?

[marille]

That sounds like it's be good for awareness. : )

(Original post by CHAZAA123)
How do you juggle social and work? xxx

With difficulty! But it's important to give priority to both at different times - nothing but work and rest isn't a recipe for recovery...

[Foo.mp3]

I've come up with a rather hodge-podge theory of the common 'chain of events' where M.E. is concerned - would be grand it if y'all would have a look over it and see if it resonates with any of your experiences/understandings. Constructive criticism/any ideas for refinement most welcome

My theory concerning the common 'chain of events' where M.E. is concerned

My advice concerning peak health, particularly with M.E. sufferers in mind

(Original post by Jamie)
So, a quick look at these posts and your previous ones tells me
- You have an exceptional academic record at GCSE and are on course with A-levels
- You plan to doa joint honours degree
- You maintain an active sexual relationship
- You do a lot of community service and extra curricular activites.

Not every sufferer is severely affected, or affected in a linear manner dude - I was practically back to normal in 2004/5, and 2008. I've managed a few jammy results at uni, I've managed to also function as a course rep/help others with their work, and I've managed (and I use the word managed in the loosest possible sense because actually it's kinda destroyed me) to play a small number of competitive level sports pretty much throughout my time at uni (except when really ill). Also got laid now 'n' then, shock horror

[koistyjayne]

Only just found out about this thread- I'm a CFS sufferer too. I'm 20 and was only diagnosed about a month ago but I've been suffering from all the symptoms for over a year and after numerous tests, I finally got diagnosed with CFS.

Glad to see this thread- didn't realise there were so many sufferers!

[03hope03]

I've had M.E for almost 3 years now, but was only diagnosed 2 years ago. Since then the hospital and GP have been no help. When I was first diagnosed I wasn't affected very badly (Year 10) and so was able to complete my GCSE's, get good results, and get a job. However, since I started AS Levels I've been getting steadily worse. I'm now at a point where I'm in school only 50% of the time and don't go out much. I have a small job for 4 hours a week, but it's a real struggle for me, mainly due to the pain that I'm in, but also because I barely have the energy to get through a day at school, let alone work as well.

So my main question is, anyone have any good tips for dealing with pain? The pain is mainly in my legs, particularly in the calf muscle and ankles, which means it hurts to both walk and stand. I'm already using paracetamol (pretty much every day) and while it does help a little, I'm in too much pain for it to stop it completely. I occasionally take ibuprofen when I'm in so much pain it makes me cry. I've tried taking warm baths but that seems to make it worse, and I had some physio who gave me stretches to do, but after a year of doing them every day I've seen no difference, and they're becoming more and more painful to do. I finally managed to get a referral to a specialist after over a year of trying to convince my GP to give it to me, but I'm not seeing the specialist for another month, and the pain is pretty bad right now. Any advice?!

[koistyjayne]

(Original post by 03hope03)
I've had M.E for almost 3 years now, but was only diagnosed 2 years ago. Since then the hospital and GP have been no help. When I was first diagnosed I wasn't affected very badly (Year 10) and so was able to complete my GCSE's, get good results, and get a job. However, since I started AS Levels I've been getting steadily worse. I'm now at a point where I'm in school only 50% of the time and don't go out much. I have a small job for 4 hours a week, but it's a real struggle for me, mainly due to the pain that I'm in, but also because I barely have the energy to get through a day at school, let alone work as well.

So my main question is, anyone have any good tips for dealing with pain? The pain is mainly in my legs, particularly in the calf muscle and ankles, which means it hurts to both walk and stand. I'm already using paracetamol (pretty much every day) and while it does help a little, I'm in too much pain for it to stop it completely. I occasionally take ibuprofen when I'm in so much pain it makes me cry. I've tried taking warm baths but that seems to make it worse, and I had some physio who gave me stretches to do, but after a year of doing them every day I've seen no difference, and they're becoming more and more painful to do. I finally managed to get a referral to a specialist after over a year of trying to convince my GP to give it to me, but I'm not seeing the specialist for another month, and the pain is pretty bad right now. Any advice?!

I get a deep tissue massage and that's really helped with my pain, although you feel bruised for a day or so afterwards because its pretty rough. My doctor told me that swimming is meant to be really good for CFS sufferers too, something to do with movement in the water temperature or something.
Hope that helps!

[Anonymous]

(Original post by Foo.mp3)
I've come up with a rather hodge-podge theory of the common 'chain of events' where M.E. is concerned - would be grand it if y'all would have a look over it and see if it resonates with any of your experiences/understandings. Constructive criticism/any ideas for refinement most welcome

My theory concerning the common 'chain of events' where M.E. is concerned

My advice concerning peak health, particularly with M.E. sufferers in mind

Not every sufferer is severely affected, or affected in a linear manner dude - I was practically back to normal in 2004/5, and 2008. I've managed a few jammy results at uni, I've managed to also function as a course rep/help others with their work, and I've managed (and I use the word managed in the loosest possible sense because actually it's kinda destroyed me) to play a small number of competitive level sports pretty much throughout my time at uni (except when really ill). Also got laid now 'n' then, shock horror

what symptoms did you get and when did you realise you had it?

[Foo.mp3]

(Original post by Anonymous)
what symptoms did you get and when did you realise you had it?

Had the following (very rarely all at the same time) over the years:

Physical Symptoms

• Muscle weakness
• Irritable bowel syndrome
• Sensitivities (to light, touch, food, chemicals, perfume, paint etc.)
• Headaches
• Dryness of mucous membranes (throat, mouth, eyes)
• Uncomfortable or frequent urination

Cognitive Symptoms

• Poor concentration
• 'Foggy' thinking
• Poor memory

Nervous Disorders

• Interrupted sleep patterns
• Mood swings, anxiety

Realised something wasn't right when I started getting colds in winter that would linger increasingly and began to feel fatigue at around the age of 16/17

Had a bad viral infection at 18 (later found to be EBV in blood tests) and went further downhill. Been up and down ever since

[zoooey]

(Original post by 03hope03)
I've had M.E for almost 3 years now, but was only diagnosed 2 years ago. Since then the hospital and GP have been no help. When I was first diagnosed I wasn't affected very badly (Year 10) and so was able to complete my GCSE's, get good results, and get a job. However, since I started AS Levels I've been getting steadily worse. I'm now at a point where I'm in school only 50% of the time and don't go out much. I have a small job for 4 hours a week, but it's a real struggle for me, mainly due to the pain that I'm in, but also because I barely have the energy to get through a day at school, let alone work as well.

So my main question is, anyone have any good tips for dealing with pain? The pain is mainly in my legs, particularly in the calf muscle and ankles, which means it hurts to both walk and stand. I'm already using paracetamol (pretty much every day) and while it does help a little, I'm in too much pain for it to stop it completely. I occasionally take ibuprofen when I'm in so much pain it makes me cry. I've tried taking warm baths but that seems to make it worse, and I had some physio who gave me stretches to do, but after a year of doing them every day I've seen no difference, and they're becoming more and more painful to do. I finally managed to get a referral to a specialist after over a year of trying to convince my GP to give it to me, but I'm not seeing the specialist for another month, and the pain is pretty bad right now. Any advice?!

I have just recovered from M.E. - personally I suffered severe pain in my stomach, and I was prescribed Cocodamol which is a much more powerful painkiller than paracetamol. Just make it plain to your GP that ordinary painkillers are not reducing your pain, and they should give you something stronger! Hope this helps!