Has the forum got M.E again ??

Brain and nerves
1

I found your article quite helpful.

I just recently had a diagnosis of CFS and did not believe or understand what it was about. It is good to know in your article that may there be some options and support to improve this condition. It is also helpful to know there are books or organisations that may be good for me during this period. I have found that doing a little bit of excercise make me tired but helps me to avoid depression or feeling part of the community.

This message was automatically imported from the original Patient Experience

2

I have had ME for over 4 years now. I went from an full-time job as a housekeeper in a conference centre, housewife, and mother of 5 children to someone who cant hoover or do my own housework. I have trouble walking any distance and find any slope painful and very exhausting. If I know I have a particularly busy or tiring activity coming up then I rest for two days beforehand, and make no plans for 2 days afterwards. This is the only way I can cope without totally burning myself out. My ME has flared a few times for no obvious reason, and that is one of the most frustrating things to cope with. Restless legs and a grasshopper mind make sleeping very difficult, which just adds to the fatigue the next day. I feel I am almost always trying to think through a brain fog. My doctor does not seem to be of any great help - although I think this is quite a common problem amongst ME sufferers. They cant put a bandage anywhere, or give you a pill, so they dont do anything!!!

This message was automatically imported from the original Patient Experience

3

My husband has recently been diagnosed with ME/Chronic fatigue/POTS after suffering for about 6 years. He has it pretty severe unable to get out of bed most days due to tachycardia, burning chest and arm pain and extreme fatigue. He has been on homeopathic treatment for about 3 weeks which currently is making no difference whatsoever but I feel he has no other option but to continue with this. Medical doctors have been no help at all. I find it extremely tiring and frustrating trying to carry out all the normal menial everyday tasks whilst I care for my husband who can be quite demanding at times. I know he gets bored and fed up and is in a lot of pain most of the time but I am now back at work after being off sick for 6 months due to stress and he worries when I'm not there when he gets what can only be described as 'an attack'. He gets breathless, gets burning pain in his chest and arm and gets real pressure in his abdomen pushing up into his chest. In other words he feels like he is having a heart attack. However, he has had more heart tests than any doctor would care to imagine and has been told he has a very strong healthy heart - apart from the constant tachycardia - which he has been told can not be medically repaired. I suppose I am writing this to offload. He currently has no measure of life - I have a very restricted lifestyle and we have a 13 year old daughter who has had to live with her dads illness since she was about 6 years old. He was previously an extremely fit and healthy person and this illness has completely floored him.

This message was automatically imported from the original Patient Experience

4

I have had me for nearly 10 years now. My gp has tried to be supportive - i have tried physiotherapy - a disaster, hydrotherapy - no better - and finally an offer to "go away" to a clinic - not practical for various reasons. People i thought were friends have not kept in touch. You only have to turn down a couple of invitations because you are too unwell and they soon stop coming. Until you have actually experienced, or know of someone with this condition it is impossible to understand the change it has on your life. I have had comments of pull yourself together and get up and do something and go to bed earlier at night. Oh if it were that simple. I would try anything if i could have my old life back.

This message was automatically imported from the original Patient Experience

5

I have tried the nutritional supplements and found them to be completely ineffective, in addition to being very inexpensive (over $200/month).

I currently experience profound fatigue which worsens quite dramatically with my menstrual period. At this moment the muscles in my arms are so sore they feel as if I worked out with weights to the point of complete muscle exhaustion. I am too tired to shower, too tired to prepare a meal; I am so tired that it is an effort to breathe, and I would be afraid of dying in my sleep from sheer exhaustion, except that it's been going on for over six years. I feel like a battery that has lost its charge.

It will be a great day when someone figures out what to do about this.

This message was automatically imported from the original Patient Experience

6

If I do a FLAT walk as many days in the week as possible, and for about 25 to 30 minutes, it helps me to feel stronger. I've had ME for 5 years, and am "wiped out" if I try anything vigorous or stressful: moving furniture, weeding, carrying heavy objects or even having an animated conversation! So I THINK I would improve if I could strengthen my lungs in some way . . . it all seems to be connected to breathing deeply. I realise I am one of the lucky ones.

This message was automatically imported from the original Patient Experience

7

I have had ME for 19 years. I have coped by taking each day as it comes and being careful in what I do. Unfortunatly it has flared up again with avengance since new years eve, I did not feel this ill when it was first diagnosed, I cannot do anything at all I am totaly exhausted, I have spent the last two weeks confined to bed. Has anyone had this happen to them?

This message was automatically imported from the original Patient Experience

8

Unfortunately yes. I have had M.E since 2001. In August last year I was feeling pretty ok as far as ok goes with this condition so I thought I would have a walk into town, I only live a short walk away and I thought, "I will just stroll up and catch the bus back." (its literally 2 stops away) As I got to the end of my street, about 50 yards or so, I had to stop and come back. My heart felt like it was going to burst in my chest and the ringing in my ears made it impossible to to stand up without swaying, so I thought "perhaps another time, just not today." I crawled on my hands and knees up the stairs and just sprawled on my bed where I hardly moved for 3 weeks, totally washed out. I could fill pages and pages with similar experiences if only I could remember!!!! But this has to be one of the worst set backs as I have hardly been through the door since. As soon as I start to feel a little better it whacks me back down again, its that very thing that sucks at my positivity and optimism and losing them is the real danger I think, as it takes such a long time to build all that back up. I have this little affirmation that keeps me going- "This time next year I will be better"- How many times did Del Boy say he was going to be a millionaire? Its what kept him going!

This message was automatically imported from the original Patient Experience

9

Triggered by an over enthusiastic boss who bullied relentlessly for a year.

Started to sweat and have excrutiating pains in wrist joints especially thumb and finger which at times became rigid and swollen.

Sharp pains in feet, knees and calves mostly on left side although recently both. Extremely stiff neck, upper back and arms.

Broken sleep pattern with as little as two to three hours of unbroken sleep and sometimes less.

Sensation of lack of balance, tending to wander to the right and that the ground was soft and squashy.

Periods of nausea, feeling faint and blurred vision.

HELPFUL

yoga brings relaxation and reduction in anxiety symptoms although have to be careful not to worsen hyperventilation

acupuncture and massage brings a relief to most of the symptoms for several days

indian head massage helps the stiffness in the neck, shoulders, arms and hands

Hope to go for CBT

Would like to hear of other people's experiences and what they have found helpful

10

I read your modest missive.

I value other users comments on cfs and if you wish will respond indetail

I am confident that sharing helps.

ray.a@ntlworld.com

11

Hi, sorry to hear that you developed CFS after a period of stress. I too developed CFS last year and was unable to carry out most activites for several months. I had very similar symptoms to yours. I did lots of different things and I am now about 90% recovered and hoping to return to work. I started having accupuncture to help with my pain which was really effective (I couldnt move my neck before I went). I also listened to Glenn Harrolds 'Heal Your Body' cd every day for several weeks. I drank lots of mineral water and took fish oils and evening primrose oil. I also undertook a therapy called reverse therapy, which bases itself under the theory that your body is trying to tell you something important and it is not until you understand this message that the symptoms will go. I was very sceptical at first but this really was the key to my recovery. You can find the website online, it was developed by John Eaton. He has produced a free downloadable book on his website which is well worth the read (brainfog permitting!). Hope this may help you, wishing you a speedy recovery.

12

Probably not as severe, its been going on with me i believe to be about 2 years or so but im not totally sure because it was such a gradual onset. For some time i was unaware. i feel the same way although i seem to go through highs and lows. i work a 9 - 4 quite physically demanding job i post illness would have found a breeze. It leaves me flat out and dont emerge again till the next morning. The weekends are just spent sleeping. affectively i dont have a social life. Just to point out im 18 years old and throws out the window any perception that its just old age sinking in. Its only recently it crossed my mind i should seek proffesiona help after long hard hours of research on this condition, and considering it considerable effecting my life. i havent been diagnosed yet but i have no dout in my mind i suffer from cfs. some day ill be incabale of working, then life wont be worth living. i will resist going out as much as i can but temptation can be futile epecially when your having a particullarly good day and forget your seriously ill. one drink cant harm but ends up being twelve then you regret it for the next 2 weeks. ive spent many days confined to bed (but i could get up if i wanted to) is not like i was paralysed, but you get the drift.

13

i only hope and hang on, technologys advancing at such an accelerating rate im pretty sure we ll have the medical science soon if not already that we westerners dont know of that some country has already developed. who knows its a big world.

14

i get thrown the most ridiculas comments that make me want to straggle them till there head exploded. my brother said once "its all those pills you take" (refering to the nutrtional supplements i started taking) but i relised id be exactly the same if it were the other way around. i learnt that people can be nieve. i find it easier now just to tell people im an isomniac because i have a good doctor so i dont care. still winds me up though. My boss is the worst, so unsympethetic. He just thinks im dim, he doesnt know i suffer from a chronic illness and if he did he wudnt take it seriously. i really need someone who will be understanding.

15

I'm sorry to hear of your illness, you sound quite similar to me. I am trying to hold down a fulltime job in the civil service. What gets me is no one cares about giving financial aid, because we don't fit into a category like incapacity or disability. I would love to do a four day week but can't afford to lose the money. We need to push for more support. CFS sufferers have no life , it's just a struggle from day to day, with no energy left for enjoyment. do you find this? The fact that the name is now CFS trying to get away from ME doesn't help. If I tell people I have CFS, they are not sympathetic.. If I say ME it's different -a bit.

Have you found anything to help give you more energy.

anne

16

ive heard about incapacity benifits and my doctor has mentioned it too and believes its possible with some persuasion and proof of your symptoms. Whats important is too have a really good doctor. Look into it my doctors cetainly been posing the idea. id like to stay in work because it fills my days and gives me a sense of purpose but some days its just such an effort

17

:roll: I have had ME since 1983,

:roll: Then, advised to get more exercise by my GP's partner at the time.

It had taken me an hour to walk about two thousand yard,s downhill

had to go back up again, I was not able to drive, this left me in bed absolutely exhausted.

I thought I would get some help or relief as every joint was screamingly painful

After six week off work, in and out of bed, crawling to wherever I wanted to go in the house, and still having to have a lots of rest

Standing was scary, I was so disorientated and light headed and oh so weak,

I had to go back to work under protest,the business I was running was deterioting fast, although I was never the same person who had left before.

Every thought, every activity was soul destroying and forced

I went to work, I went home to bed, I rose for work,

that was all I did for those years,

My family were despairing of any company from me at all,

They grew up watching me crawl around,getting on with their lives.

I spent shopping trips and days out sleeping in the car in car parks and seaside esplanades.

When I did venture out I usually had to return to the car,

Lighting in many shops was so glaring it hurt and brought on terrible headaches and loss of focus,

the noise from refrigeration units especially grated in my head,

I thought I was imagining the effects ordinary everyday things were doing to me. odours, scents became extremely potent and intrusive ,sensivity to temperature diferences, debilitating me rapidly,pespiring one moment shivering seconds later

I always walked behind, as i could never keep up the walking pace no matter how slow,continually stopping for rest,

my legs became very painful and so heavy every step a cognitive effort my left leg to this day still lags behind

I gave up working in 1986 because I could no longer think straight or logically any more,physically,phsychologically i was empty, completely drained of any will to do anything, after trying to cope normally for over three years,I basically could no longer cope and the business sold

I had nothing left and was glad it was over,there came many medicines visits to doctors and clinics, a course of duogastrone, landed me in hospital for test as i was unable to stand i was weaker than ever before my heart was going crazy, slow,missed,extra? and fast beats, blood pressure was wild, many test proved cause was depleted pottasium due to the above medicine,

I was glad I was released early,there was no heating in the ward,

Never any sleep for 3 days, the cold was making me so ill,

this is where the diagnoses came about in late 1988,

continued with varying degrees of these symptoms ever since,

You feel alone, every one I knew became a bit wary of me, even my family, forever refusing invites for almost anything,

Never knew if I would be able to take part in whatever was planned.

Symptoms today are as varied and as many as all other ME sufferers, some days, lucid bright and kind of active in my case, followed by the reckoning to various degrees,and lengths of time being incapacitated

I never plan anything, but take every chance to do something every day,no matter how little, you just roll forward and hope that you complete what you started,

This is as I was once told, not life, but my life

:oops: Please excuse my grammar as this is excruciating trying to make some sense

Best wishes to who are ill

18

I have to say, your first two lines says it all. By all means, get yourself a sick line, and have time off work, but if you think you'll get In capacity benefit, think again. The benfit system works, on the basis, for every 5 claims, only two will get passed, regardless if the other three are dead walking. So it won't matter how much, people try to persuade, and prove their symptoms, less than half claiming will only ever get!

http://www.meassociation.org.uk/content/view/305/70/

[quote:9d9d9729a1="Anonymous"]ive heard about incapacity benifits and my doctor has mentioned it too and believes its possible with some persuasion and proof of your symptoms. Whats important is too have a really good doctor. Look into it my doctors cetainly been posing the idea. id like to stay in work because it fills my days and gives me a sense of purpose but some days its just such an effort

19

Hi

Just wondering if anyone can offer any advice?

I've suffered from extreme exhaustion for a good couple of years now. I usually need to nap in the afternoon (when I sleep very heavily), but wake frequetly throughout the night. Im pretty much tired all the time, even if I have had 12 hours sleep. if i have a late night for any reason, I feel like it takes me a good couple of days to recover. I am at my best first thing in the morning, but tire very quickly.

I intermitantly suffer with bouts of nausea (though i never vomit) and diziness, and see 'sparks' in front of my eyes. My joints ache most of the time. I have seen doctors and was sent for blood tests which ruled out anemia etc. I was also put on anti-depressents which brightened my mood, but did not stop me from feeling tired!

I am constantly yawning and small tasks like housework or walking tire me out. The idea of exercise seems literally impossible! I would say that my tiredness gets in the way of daily activities because when I get tired I HAVE to sleep, i am mentally and physically exhausted and I literally have to drag myself into bed as all my energy disappears.

Im 27, within my normal weight range, but i do suffer from asthma, which is well controlled but sometimes causes me breathing problems. I also have a slightly low blood pressure, but other than that I would say I was generally physically healthy.

Do these sound like symptoms of CFS or ME?

Thanks.

20

i have had cfs/me for many years now , i have had no help from anyone , i have lost my partner over it due to being seen as a lazy no good bum cause it was all in my head, doctors turn me away saying its depression , anklyosing spondulitis, m.e , cfs, many other thing , doctors made me feel like i was going crazy..anyway 2 years ago after a really bad spell where i couldnt walk properly and felt at my lowest i started taking omega 3 , i take 3000mg a day and now life seems a little brighter , i dont take any other medication now after how bad i got on all the rubbish the doctors put me on .....omega 3 is my saviour