M.E. or chronic fatigue syndrome info plz

M.E.2-2

Don't worry about it as it took them 9 years to diagnose mine.My GP asks me if there are any developments

november

loopy_lass wrote:

apparently, my drs dont like to diagnose ME as theres no treatment and if someone is labelled with an illness they may lean on the fact they are ill and not get better! the only way someone with ME can get better is with determination and effort!!!!

there is no advantages to having ME diagnosed .......

Of course there is advantages to having a diagnosis. How the hell else are you supposed to get time off work to recover, make everyone believe you are genuinly ill, reassure yourself you are not going potty!!

If only people could get better just by putting in 'deterimination and effort' no-one would ever be ill would they :mad:

Really sorry to hear that Loopy. Sounds like your drs is a bit (lot) behind the times.

If I were you I would contact Action for ME to see if they can offer you any advise on getting some help.

MonkeyGirl

*hugs* Sorry to hear that didnt help. Any chance you could maybe see a different GP in the practise? It may or may not help. *hugs* Hope you are on a good day today.

Karfy

hey loopylass,
im really sorry to hear that...about your doctor believing there is basically no point in giving you a diagnosis and that you will 'lean on the illness' more and so wont get better. that really is utter rubbish!!

i've read through this post and i know phoenix you have said that ME is not well understood at all, which is very true much more research is needed into it to aid in diagnosis and treatment however ME has now been formally recognised and under the WHO criteria established as a neurological illness and it really does have a collection of distinct symptoms. Even though the symptoms may wax and wane and some may be worse at other times the symptoms of the illness are better understood now and your gp shouldnt be able to do this to you. If he suspects or you suspect that this may be your problem, then you can ask to be referred to someone who specialises in CFS/ME and say that u have been having these problems and could you have ME? Some gps are still living in the dark ages with this illness but that doesnt mean you should suffer.

He is right however that there is no bog standard treatment once you do have a diagnosis but to have a diagnosis will at least let you know that this is what you have. Yes that may not mean you understand why you feel the way you do (just like doctors all over the world are trying to better understand!) but you will not be alone and you will have a definite diagnosis of a disease that is recognised and IF your health worsens or you wish to work you will be able to explain you have ME and that you may have some specific needs.

Phoenix, you said:

"Also I understand being diagnosed with M.E offers support, even benefits to help you cope with the strains of the illness. However ask yourself what's really causing these problems? If you can't find a reason then sure, accept an M.E diagnosis, which is not meant to degrade M.E diagnoses but it's important to understand that these things are difficult to diagnose and hence you may not have it at all. Being diagnosed will have a psychological effect and I'm not sure that it will be wholey positive".

I'm not really sure what u mean by, 'whats really causing these problems?' If any doctors really knew what caused this illness then it would be the biggest breakthrough in medical science in years let alone a girl who thinks she may have ME but isnt sure. I know maybe your suggesting that if you have a few symptoms that maybe its easy to just take a diagnosis and get the support that might be offered. It sounds like people who accept a diagnosis are getting off easy then if they do that!! But REALLY if you have ME/CFS it is not a good deal at all, getting a diagnosis is one hurdle over the run and it can be a long run. This is a very hard illness to cope with and sure you are right it is difficult to diagnose if you know very little about it, like a lot of gps however the CFS/ME specialists will be able to diagnose people a lot more clearly. There are bound to be people who have a diagnosis of ME who dont just like other illnesses, but it can be hard enough getting a diagnosis when you do have the illness let alone when you dont.

Phoenix you also said:

"My own gut feeling is M.E has something to do with disruption to sleeping patterns which causes prolonged sleep disruption and these are just the associated effects. Maybe I'm wrong but I may be about to spend alot of time with ME suffers which will be of great interest."

I guess there are many theories surrounding ME and what triggers and causes the symptoms, there are many medical papers which suggest alternative theories like persistant viral, (glandular fever), infection in muscles, imbalances of neurotransmitters, depression, problems with adrenal glands, immunological problems. With most people it seems to be a combination of triggering factors that leads to the illness. But everyone is different and it seems that the illness does affect people in individually in slightly different ways. It is important to help correct your sleep pattern as much as possible and is disrupted most of time in ME like u said, however once sleep disruption is corrected the symptoms normally continue or patients will wake up from a nights sleep totally unrefreshed and unable to function unlike people without the illness who sleeping actually reboosts the energy stores.

It is very frustrating with this illness like you said and i really understand when u wrote

"If there's something physically wrong with you, you should be properly physically examined but it seems there is no proper method of physical examination to find the what is "out of place" with your body."

The only thing doctors can do is physically examine you and rule out other possibilities which may be causing your symptoms that do have a treatment, when they are ruled out it doesnt mean that nothing is "out of place" because sometimes it really can u make u feel like that, its coz the doctors dont have the medical understanding and technology yet thats why there isnt a proper method yet because they are still working on understanding the illness. I mean not that long agao really they would treat people with MS as the same as patients with mental illnesses until the medical technology caught up they realised it wasnt the same sort of illness as depression/schizophrenia.

Anyway i guess i should say im 21 and have had ME since i was 7 years old. Loopylass im not sure how old you are but there is a very good charity called ayme which is association of youth with ME which ranges from 5-25 years, the website is https://www.ayme.org.uk and you can call them up or get in touch to just talk to someone about this stuff or getting a diagnosis or at least just finding a bit more out about it. The big ME charities have been doing a campaign this year about how important early diagnosis is.

take care, Karfy xxxxxxx

loopy_lass

thanks for that reply, most encouraging.. sorry i havent been around for a few days, been whacked out. Had a friend visit on friday, talked for 4 hrs, whacked me out, had to drive 16 miles saturday, whacked me out. Nurse app tues (more blood tests) whacked me out.

I seem to be a bit seized up in the joint dept last few days, so taking it easy.

im 40 tomorrow!!!! bit of a non event i guess, but there you go...

will let u know wot bt turn up...

thanks for all replies, very encouraging... i appreciate it, least it helps to know im imaginin it...

loops xxxxx

frankie1star

Hi loopy-lass,

I was diagnosed with CFS/ME 5 years ago (when i was 16). I am now 21 studying at uni and finding it such a struggle. I have had to take the last 2 months off uni to recuperate because I was getting to the familar stage of not being able to look after myself properly as I get so tired all the time. Here is some advice that might help:

1) Don't let the doctors mess you around. Explain to them it is affecting your lifestyle too much. It affects your self-esteem, uni work, and you can't live a normal life. Although i was diagnosed with this illness 5 years ago it actually took a year or more for them to diagnose it. With their support you can get financial, academic and emotional support from your university. But trust me without the diagnosis in writing no one will take you seriously.

2) Once your doctor has diagnosed the illness, get him/her to write a medical letter explaining the diagnosis. Then take a copy of this to your student admin office. This will then entitle you to extra time, rest breaks, and won't allow you to have more than one exam on one day. The best person to talk to about this at your university is the disabled students officer who will explain what help you are entitled to. Which includes disabled students allowance from your LEA. If you can't get any sense out of the doctor you see regularly then change! Also i would recommend speaking to your personal tutor directly, I have done this and they have been so supportive of everything. Don't be scared of taking time off, I was and now do not regret one bit. Your health is so important!

3) I recommend talking to someone like a counsellor which can also do at student services of your university. They can talk to you about routines, rest and regimes which help getting through the hard days.

4) The best way to getting better is to build yourself up gradually. I have been home for 2 months now and have gone from not being able to do anything to doing a bit of exercise each day, doing 3 hours of uni work a day and looking after myself a bit better. When i started from scratch (2 months ago) I made myself get in bed by 10.30 and read for 30mins, then set my alarm for 8.00am. Some days it was so hard to get out of bed, especially as I am light sleeper. During the day set yourself goals, for example I set myself 5 a day but start off small if not you will be going back to square 1 all the time. Make yourself do 10mins walking everyday, some household chores, rest for at least 2 hours, it is vital to balance rest with activity. I have to admit it is boring because it is such an up and down illness, as you say one day you have absolutely no energy and the next day you have loads. Try your hardest not to sleep during the day, because this will mess the routine up completely.

5) If you can buy some books about the illness, it helps to understand it a bit more. Also yoga is ment to be good for build up strength. As i said when starting from the beginning go for 10mins walk a day and then once you dont feel too exhausted from that and everything else you have to do within a day, start 10mins running a day.

6)Make sure you eat a healthy, balanced diet. Drink lots of water and eat 3 meals a day, with lots of fruit and veg. If you eat sweets, chocolates and sugar a lot this gives you a sudden energy burst but then disappears very quickly making you feel exhausted.

I know how you feel about the family side of things, my family always just thought i was lazy and could not be bothered to anything. But now that I have been diagnosed with the illness they have come to understand why I am the way I am. It's important to let your body rest when your tired because if you continue to fight the illness you don't get anywhere, trust me ive been doing that for 5years and now have finally decided to make a change. Hope Ive been of some help

katstar2

sorry accidentally posted this on my mums account


Hi loopy-lass,

I was diagnosed with CFS/ME 5 years ago (when i was 16). I am now 21 studying at uni and finding it such a struggle. I have had to take the last 2 months off uni to recuperate because I was getting to the familar stage of not being able to look after myself properly as I get so tired all the time. Here is some advice that might help:

1) Don't let the doctors mess you around. Explain to them it is affecting your lifestyle too much. It affects your self-esteem, uni work, and you can't live a normal life. Although i was diagnosed with this illness 5 years ago it actually took a year or more for them to diagnose it. With their support you can get financial, academic and emotional support from your university. But trust me without the diagnosis in writing no one will take you seriously.

2) Once your doctor has diagnosed the illness, get him/her to write a medical letter explaining the diagnosis. Then take a copy of this to your student admin office. This will then entitle you to extra time, rest breaks, and won't allow you to have more than one exam on one day. The best person to talk to about this at your university is the disabled students officer who will explain what help you are entitled to. Which includes disabled students allowance from your LEA. If you can't get any sense out of the doctor you see regularly then change! Also i would recommend speaking to your personal tutor directly, I have done this and they have been so supportive of everything. Don't be scared of taking time off, I was and now do not regret one bit. Your health is so important!

3) I recommend talking to someone like a counsellor which can also do at student services of your university. They can talk to you about routines, rest and regimes which help getting through the hard days.

4) The best way to getting better is to build yourself up gradually. I have been home for 2 months now and have gone from not being able to do anything to doing a bit of exercise each day, doing 3 hours of uni work a day and looking after myself a bit better. When i started from scratch (2 months ago) I made myself get in bed by 10.30 and read for 30mins, then set my alarm for 8.00am. Some days it was so hard to get out of bed, especially as I am light sleeper. During the day set yourself goals, for example I set myself 5 a day but start off small if not you will be going back to square 1 all the time. Make yourself do 10mins walking everyday, some household chores, rest for at least 2 hours, it is vital to balance rest with activity. I have to admit it is boring because it is such an up and down illness, as you say one day you have absolutely no energy and the next day you have loads. Try your hardest not to sleep during the day, because this will mess the routine up completely.

5) If you can buy some books about the illness, it helps to understand it a bit more. Also yoga is ment to be good for build up strength. As i said when starting from the beginning go for 10mins walk a day and then once you dont feel too exhausted from that and everything else you have to do within a day, start 10mins running a day.

6)Make sure you eat a healthy, balanced diet. Drink lots of water and eat 3 meals a day, with lots of fruit and veg. If you eat sweets, chocolates and sugar a lot this gives you a sudden energy burst but then disappears very quickly making you feel exhausted.

I know how you feel about the family side of things, my family always just thought i was lazy and could not be bothered to anything. But now that I have been diagnosed with the illness they have come to understand why I am the way I am. It's important to let your body rest when your tired because if you continue to fight the illness you don't get anywhere, trust me ive been doing that for 5years and now have finally decided to make a change. Hope Ive been of some help

Savvy_Sue

I don't know if this will be depressing or encouraging, but I have a friend who has had ME for a number of years. They still have really bad flareups when they can't get out of bed for a few days, but find that they recover more quickly after them these days than they used to. They have learned to pace themselves: a trip into town one week, but very little else that week. Long distance visitors (even family!) on alternate days only. Asking people not to visit if they have coughs, colds etc.

loopy_lass

well, it was my 40th yesterday, & i thought i had gotten off very lightly, only one breif visitor & one phone call.... until.... my 14yr old wanted driving 7 miles, which wasnt a problem as i had an easy day (mmm wish i still thought that at the end of the 7 miles back home!)

then i got a phone call...... OH NOOOOO my family had got together and decided to take me out for a drink!!!!! i put it off as long as possible but had to go when one arrived in car to pick me up. They moaned because i only drank sparkling water (which i quite like) and then because i was quiet, and then proceeded to tell me how much weight i had put on, and how i needed to do more. Then the diagnosis started, i had anything from Thyroid to MS..... didnt get in till 10.30, now they all arrived to take me for lunch ....... AHHHhhhhhhhhh GO AWAY......

next few days will now be very difficult for me!

thanks for above support.

loops

Savvy_Sue

I think they will learn gradually not to overwhelm you like this. You will also learn to say No and stick to it. I know it took my friend's family a long time to accept that a journey of 200 miles was now impossible, and that they couldn't stay at my friend's house any more, and that if they came and stayed locally it would only be possible to visit every other day.

Your son will have to learn independence, and that there will be days when you can do stuff and days when you can't. But he will survive!