Has the forum got M.E again ??

: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

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[/quote:9d9d9729a1]

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.

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

How long can this post be??I have been ill for 2 and a half years, hospitalised 3 times and on each occaision the docs could not decide what was wrong but they all concluded that it was a neurological problem so I have now seen 3 different neurologist.One told me I was doing this to myself i.e it was functional and sent me of to see a shrink- whom confirmed that I was normal!!

The second said that it was a post infection disorder from Campylobacter food poisoning I had and I would make a full recovery in about 6 months time.

After waiting a year from seeing the second neurologist and not made a recovery I asked to see a third.

Guess what he told me yep I have CFS from the food poisoning and could not say when or indeed if I would be well enough to go back to work.

This is the shortened version of all that I have been through and it would take too long to fill in the bits between.

However I have found something that has helped from speaking to my local health food shop after getting a diagnosis of CFS and they suggested I start taking Coenzyme Q-10 which has helped a lot with the tiredness/fatigue.This is not a cure by any means but gives me the energy to get through the day.

Just a suggestion

Dawn

i have been suffering the symptons of CFS for i think about 3 years and all this time my doctor has said it was due to side effects of my diabetes and 'depression'. what makes me furious is that after choosing to go private i discovered that i too had CFS. i have felt like i was making an issue out of nothing all this time and have been denied or ignored and just shoved on anti-depressents for a year or so and now i am actually relieved to discover that it has a name and is an actual condition. i am cross that people are not more aware of this ailment, i have been saying i thought i had it for yonks and cant believe no one listened to me! Wow, what a relief to find out im not alone. its demoralising in its self not being able to do what others can. i am saddened by it but looking forward to curing myself through healthy diet, medication and loads of vitamin B! This is my first day of 'officially' having CFS, wish me luck :roll:

I had glandular fever 4 years ago and I've been ill almost constantly since. I think my doctors now just think I'm a bit of a hypochondriac, and tend to just order lots of blood tests only to tell me nothing seems to be wrong.

I've had cold like symptoms for the past 2 months now, and I'm finding it hard to carry on with my studies (I'm currently a 3rd year law student) especially as I always feel really drained around exams time.

Having read up on CFS/PVF/ME for a while now, I'm fairly convinced that I am a sufferor, but I wish I was properly diagnosed so I wasn't just considered lazy by my tutors and my peers.

Has anyone else had problems getting a diagnosis?

Hi Alice, I'm 31, married, 2 kids, 1 pony, 2 cats and a full-time job. However, I have recently been diagnosed with CFS/ME too! That's why I am sat here at 1am because I cant sleep! Like you I frequently mentioned to my GP the persistent feeling of fatigue and one Dr told me " YEP Your depressed" So in sheer frustration I started to get upset and told him of my constant fight with fatique both physicaly and mentally and feeling "flu - like". His reply was " SEE crying is another sign of depression" I was absolutly shattered and went back to work in floods of tears. A colleague made me ring back the surgery and see another doctor...and so I did! I have now found the most understanding Doctor ever. She takes times to listen, offers as much medical advice possible and most importantly gives me a sense of controlling my CFS/ME by supporting my views and options. This is very comforting to me when at a time of feeling so exhausted, aching, memory loss and most of all people not believing I am genuinly ill. I wish you all the luck in the world and who knows there may me a miracle cure for CFS/ME soon. x x x :wink:

Hi, sorry to hear you are both suffering with CFS. I was too last year but now I am back at work. I recovered using reverse therapy. This asserts that CFS is a real physical disease but by using a variety of techniques (easy ones) they can get you back to health. I would really recommend downloading John Eaton's free book from his website. Have a look at it (brain fog permitting) and see what you think. It is the only thing that worked for me and I am sure that without it I would still not be able to stand up, be free from joint pains etc etc. (not sure of the exact website address but if you type in reverse therapy on google it should come up). Good luck, I hope you get better soon. :D

You may wish to look at www.MEFreeforall.org for further support and information regarding ME. Lots of news and views as well as opinion and feedback on alternative treatments. Info on benefits and living with ME.

Hope this is useful.

NPR

You may wish to look at www.MEFreeforall.org for further support and information regarding ME. Lots of news and views as well as opinion and feedback on alternative treatments. Info on benefits and living with ME.

Hope this is useful.

NPR

My son wsho is now 23 was diagnosed with CFS aged 13 and we had major problems with my GP who put the illness down to school phobia. 6 months down the line and the illness getting worse I WENT TO see the GP who thankfully not there only a locum who arranged blood tests and a vitit to a consultant at the HOSPITAL. Finally CFs diagnosed. Ten years down the line, things not much better. My son a year ago found employment ( his first job as he is now feeling some what better) but needed his hours reducing. We told them about the cfs and sent reams of paper about the illness, and was advised a letter would be needed from the gp. Same gp, but he did do a letter for the cost of£30.00, but stated in the letter that my son may want his hours reduced because of DEPRESSion, not that the 10 hour shift was not suitable for a cfs sufferer. Times it would appear do not change. Anyone else with these problems?[/b]

I HAVE A SON WITH CFS who has had it for 10years. We found that vitamin B, C and ahloe vera tablets helped somewhat with his condition. Be careful of eggs and cheese as we found these really made him ill. Recently we tried well cooked eggs again, which were fine, but cheese is still a no go. Granary bread we also found was a good energy boost. Keep smilling, it is a long road but things do get better. Until a year ago my son was in bed for about 16 hours a day, but now working 15 hours per week and thinking of doing an open u niversity course

It has being a life changing event. Family and friends never seem to understand how I feel. They see that sometimes I appear alright and therefore can't understnd why the next day or even hour feel unwell. It's a year since I was diagnosed with m.e., I still can't cope with pacing myself, it's hard when you feel well, not to continue when the going is good but you always pay a heavy price.

Hi Lou

I frequently visit this site to help me too come to term with ME/CFS. I truly understand your frustration when at times I feel well and continue doing all the normal things I enjoy. I will even do that bit more because I need to "get it done" before I feel unwell again. I have just had a good spell when my son has been in hospital and I managed well - altough I think that was nervous energy. Now he's home and doing well BANG I am back to square one. As usual I'm one to keep smiling and put a brave face on it all but as much as my friends and hubbie try to understand I feel they dont. When I need to go to bed I believe that people think I am just lazy, when I have brain fog people think I am dizzy and when I ache there is no rash to show people. Thankfully I have found a great GP who supports me in whatever choices I have and without her support I believe things would be much harder for me. With only being diagnosed just 3 months ago my advice is to take your family or friend to one of your appointments, find an underatnding GP and cotinue to seek experiences such as this site to comfort yourself that you are not alone. I wish you well x x :lol: