This is a condition which is poorly understood and not well researched. Can I suggest that anyone who suffers with this condition look out for clinical trials or other research into the condition.
It's probably related to subtle changes in the sufferer's immune system and stress responses at the cellular level.
This is a condition which is poorly understood and not well researched. Can I suggest that anyone who suffers with this condition look out for clinical trials or other research into the condition.
It's probably related to subtle changes in the sufferer's immune system and stress responses at the cellular level.
Yes thank you for that information. That is good advice.
Hey man, that sucks. I get fatigue a lot, with rare bursts of energy, usually evening time. The morning is the absolute worst. However, I've never been in a wheelchair. Must suck sometimes.
Same here, fatigue , exhaustion, and at least I know why it happens, and its just something I have to live with
My problems is, I have a slow heart rate, and just like candyfloss2000, get fatigued, ehausted mostly near end of my shifts, the bursts of energy never seemt o have any when I need them.
And as for mornings, this is the worst time for me
Hi there,
A Fibro sufferer here coming up four years now. Had a hell of a time getting diagnosed as others have said. Been through pain clinic courses and accupuncture etc all without success.
I was first diagnosed with Trigeminal Neuralgia and was on the edge of brain surgery when i pulled out cos i wasnt convinced, luckily i did cos it was wrong!
A while ago i was maxing out Tramadol and Pregablin (Lyrica) and Amitrityline etc etc and i was still in awful pain as well as side effects and i decided id had enough. I've weaned myself off all tablets now and although im in a lot of pain a lot of the time, sometimes more then i can stand, i know it was the right thing for me.
I suffer fatigue, foggy brain, pain, sleep disturbance and all the others under the heading and i feel for anyone who has it.
My partner has me on a cocktail of vitamins/minerals/oils etc hoping to help me cos he's heard they're meant to be good. Havent noticed much to be honest but i figure it can only do me good.
I hope you're all having as good a day as you can.
Hi there,
My partner has me on a cocktail of vitamins/minerals/oils etc hoping to help me cos he's heard they're meant to be good. Havent noticed much to be honest but i figure it can only do me good.
Take Care xxx
Hi butter fly, think the vitamins/mineral to get anything out of them, you have to be taking them for more than 30 days
I take vit c, vit b+, zinc, Q-enz 10, magnizum, iron, l-arginine, and have been doing so for the last 2 months, do notice slight changes, not fatigued/exhausted as I was 2 yrs ago
Can I ask everyone - were you on any kind of medication before it began, or supplements?
My husband was very fit and on no medication at all, he had rarely had a day off work in his life. He took ill with flu like symptoms on Boxing Day 2011 and it all commenced from there....
My husband was very fit and on no medication at all, he had rarely had a day off work in his life. He took ill with flu like symptoms on Boxing Day 2011 and it all commenced from there....
What about vaccines?
It's just that some of the symptoms sound liver related, eg brainfog, tiredness. Toxins in the blood that aren't filtered by the liver cause brain fog, memory problems.
Hi butter fly, think the vitamins/mineral to get anything out of them, you have to be taking them for more than 30 days
I take vit c, vit b+, zinc, Q-enz 10, magnizum, iron, l-arginine, and have been doing so for the last 2 months, do notice slight changes, not fatigued/exhausted as I was 2 yrs ago
Hi roland,
Thank you for your reply, I've been taking most of the stuff for a long time now I'm afraid, the problem with vitamins etc is you have to go on faith that they're working. I seem to be one of these people where tablets work on me to start with to varying degrees and amounts of time, then they seem to stop working very well and I never get the same from them. Are you the same?
Mine started after a mycoplasma infection in 2002. For 2 years the doctors tried to treat me with antidepressantss. After 2 years I paid for a consultation at the National ME centre and got a definitive diagnosis. A bit later I was referred to an ME clinic at a local hospital but have now been discharged as new government legislation only allows one diagnostic and 2 follow up appointments on the NHS and I have had way more than this. However I have learned sufficient from them and through trial and error and information on forums to find how my body works best with the condition.
It took me a long time to stop fighting and reach a point of acceptance but when I did and agreed to let ME co exist with me as long as it left me alone I started to manage better. Also finishing full time work in 2007 made a lot of difference to my stability.
On the whole it now stays fairly stable and dormant and I have roughly between 55% and 65% ability but when my body has to fight a virus or an infection (like now) it wakes up and makes a nuisance of itself dropping me to around 35% ability.
I totally agree with this comment "It's probably related to subtle changes in the sufferer's immune system and stress responses at the cellular level". as I was told this at the NMEC. I have had a lifeltime of chronic mental and emotional stress predisposing me to develop the illness when my body came under the physical stress of illness
My immune system certainly does not fight things off efficiently now, but then I am also getting older as well.
One word of warning, I have spent a lot of money over the years on alternative therapies (nutritionist, counsellors, reflexology, chiropractic, ) The ony thing that has not been a waste of money was custom made orthotics fitted by a podiatrist. I am not joking as these corrected poor posture which means that walking does not take the same amount of physical energy that it did and I do not get the same degree of joint pain in my legs and back.
I've had ME/Fibro since I was 18 after flu(like) virus + chest infection. I'm now 42. At first it was thought to be MS, so in a way I was lucky. Mercifully, I am so much better than I was - my whole 20s went up in smoke.
I'm working part time which means a lot to me. But I'm in a lot of pain, particulaly nerve pains, suffer constant fatigue, exhaustion, aching glands, fast + irregula heartbeat, immune issues, brainfog etc.
I found the CFS Unit at King's College hospital in London very good.
Same here. I don't even recall having any illness/virus beforehand. I was however in a very stressful job, and had suffered a couple of bereavements in close proximity. I don't know if that is connected or not. I've had M.E. (diagnosed) for about 13 years now.
Apparently physically fit, sporty, driven personalities can be succeptible to ME, also stress is definitely a precursor, I can vouch for that. I have had a lot of chronic stress and stress will always cause me a relapse now.
I've had it since 1991 - went for every test under the sun, eventually Dr Simon wessley at Kings (seems to be the UK expert on it) diagnosed ME/CFS, feels like I have a hangover and the flu 24/7,
its a sod because outwardly you look OK - so people don't understand at all. ME/CFS is classifed as a physical illness by the world health organisiation and is also recognised by the disability discrimination act as a disability - some Dr's don't believe in it however. I've been sent to Pyscotherapists to see if I was depressed - but no,
I'm kept going by does of amtriptyline, which make me feel like shit anyway, but at least I can function. I'm still at work, but energy levels are such it doesn't leave much for anyting else.
adequate rest and monitoring yourself are the key - graded
no stress and don't push yourself
I feel for you, its a terrible illiness which I am only to aware of
Posted on here earlier to say that my husband suffers from cfs and has recently returned to night shift. His work have a vacancy for day shift which would be much easier for him as it is over 5 days and not the gruelling 10 hour nightshifts over 4 nights that he is currently struggling with. He has to put in a letter to express his interest and his reasons for wanting to go on dayshift so I will be composing this when I finish work today.
There are 3 other engineers who work backshift and are also going to be applying for the dayshift position (one cos his wife has a new baby, one who just prefers dayshift and one who doesnt get on with his backshift manager). I was wondering if any of you were able to suggest good lines or buzzwords I could put in my husbands letter to make it stand out and to stress the importance of his health (without it looking as though he is not capable of doing the job!)
What sort of relationship does your OH have with his GP? If the GP is sympathetic you could do a lot worse than ask him to write a short letter stressing the effects of nightshift on his health and wellbeing and that a change to dayshift would be recommended.
I have had chronic fatigue for 15 years, but it is undiagnosed as my Doctors are useless, they test me, they find nothing, they offer nothing , I go away, I go back when it all gets too much, they test , the tests are clear, I go away, so I gave up trying to get a diagnosis.
The closest I came to being diagnosed was a nurse who told me after I collapsed yet again and ended up in hospital, that she was 100% sure its what I had, but the Doctors dont want to know.
When it first hit me I spent months unable to walk, and had to crawl to the toilet etc, it was agony and my arms and legs were so weak and painful but still nothing was diagnosed.
Just been back last week with so many different symptoms, they tested me yet again and yet again all bloods are normal.
I am at about 60% on the scale at the moment, having to rest lots and in a bit of pain, irregular heartbeat,complete exhaustion, brain fog bad sleep pattern etc.
I am glad you have been diagnosed, I just wish that someone would listen to me after all these years
Some specialists [Endocrinology] think CFS is just made up by lazy thinking on the part of GPs who rule out hypothyroidism as a possible source, because they have a textbok centric view of what hypothyroidism is [within arbitary margins of error], and if it doesn't agree with their reading from the blood tests, they say you don't have it, and call it something else, in this instance Chronic Fatigue Syndrome.
Some specialists [Endocrinology] think CFS is just made up by lazy thinking on the part of GPs who rule out hypothyroidism as a possible source, because they have a textbok centric view of what hypothyroidism is [within arbitary margins of error], and if it doesn't agree with their reading from the blood tests, they say you don't have it, and call it something else, in this instance Chronic Fatigue Syndrome.
In some cases that may be true. I believe CFS has many causes, much like headaches. That doesn't mean headaches don't exist.
I have ME/CFS after glandular fever a good few years ago. The best support site Ive found is Brainfog.org
Theres support, chat, advice, laughs and basically someone who knows how you feel
Comments
It's probably related to subtle changes in the sufferer's immune system and stress responses at the cellular level.
Yes thank you for that information. That is good advice.
My problems is, I have a slow heart rate, and just like candyfloss2000, get fatigued, ehausted mostly near end of my shifts, the bursts of energy never seemt o have any when I need them.
And as for mornings, this is the worst time for me
A Fibro sufferer here coming up four years now. Had a hell of a time getting diagnosed as others have said. Been through pain clinic courses and accupuncture etc all without success.
I was first diagnosed with Trigeminal Neuralgia and was on the edge of brain surgery when i pulled out cos i wasnt convinced, luckily i did cos it was wrong!
A while ago i was maxing out Tramadol and Pregablin (Lyrica) and Amitrityline etc etc and i was still in awful pain as well as side effects and i decided id had enough. I've weaned myself off all tablets now and although im in a lot of pain a lot of the time, sometimes more then i can stand, i know it was the right thing for me.
I suffer fatigue, foggy brain, pain, sleep disturbance and all the others under the heading and i feel for anyone who has it.
My partner has me on a cocktail of vitamins/minerals/oils etc hoping to help me cos he's heard they're meant to be good. Havent noticed much to be honest but i figure it can only do me good.
I hope you're all having as good a day as you can.
Take Care xxx
Hi butter fly, think the vitamins/mineral to get anything out of them, you have to be taking them for more than 30 days
I take vit c, vit b+, zinc, Q-enz 10, magnizum, iron, l-arginine, and have been doing so for the last 2 months, do notice slight changes, not fatigued/exhausted as I was 2 yrs ago
My husband was very fit and on no medication at all, he had rarely had a day off work in his life. He took ill with flu like symptoms on Boxing Day 2011 and it all commenced from there....
What about vaccines?
It's just that some of the symptoms sound liver related, eg brainfog, tiredness. Toxins in the blood that aren't filtered by the liver cause brain fog, memory problems.
Hi roland,
Thank you for your reply, I've been taking most of the stuff for a long time now I'm afraid, the problem with vitamins etc is you have to go on faith that they're working. I seem to be one of these people where tablets work on me to start with to varying degrees and amounts of time, then they seem to stop working very well and I never get the same from them. Are you the same?
Take care xxx
It took me a long time to stop fighting and reach a point of acceptance but when I did and agreed to let ME co exist with me as long as it left me alone I started to manage better. Also finishing full time work in 2007 made a lot of difference to my stability.
On the whole it now stays fairly stable and dormant and I have roughly between 55% and 65% ability but when my body has to fight a virus or an infection (like now) it wakes up and makes a nuisance of itself dropping me to around 35% ability.
I totally agree with this comment "It's probably related to subtle changes in the sufferer's immune system and stress responses at the cellular level". as I was told this at the NMEC. I have had a lifeltime of chronic mental and emotional stress predisposing me to develop the illness when my body came under the physical stress of illness
My immune system certainly does not fight things off efficiently now, but then I am also getting older as well.
One word of warning, I have spent a lot of money over the years on alternative therapies (nutritionist, counsellors, reflexology, chiropractic, ) The ony thing that has not been a waste of money was custom made orthotics fitted by a podiatrist. I am not joking as these corrected poor posture which means that walking does not take the same amount of physical energy that it did and I do not get the same degree of joint pain in my legs and back.
Not me - I was just very very busy and got glandular fever that decided to rogue into CFS.
I have had fatigue, for example on weekends after a hard week, that I think is more than usual fatigue, but not like what is described here.
I wonder does anyone do yoga. My boss who has an immune disorder swears by a supplement with clostridium. I never tried it but thinking of it.
Balls.
I'm working part time which means a lot to me. But I'm in a lot of pain, particulaly nerve pains, suffer constant fatigue, exhaustion, aching glands, fast + irregula heartbeat, immune issues, brainfog etc.
I found the CFS Unit at King's College hospital in London very good.
I was physically very fit + sporty.
Same here. I don't even recall having any illness/virus beforehand. I was however in a very stressful job, and had suffered a couple of bereavements in close proximity. I don't know if that is connected or not. I've had M.E. (diagnosed) for about 13 years now.
its a sod because outwardly you look OK - so people don't understand at all. ME/CFS is classifed as a physical illness by the world health organisiation and is also recognised by the disability discrimination act as a disability - some Dr's don't believe in it however. I've been sent to Pyscotherapists to see if I was depressed - but no,
I'm kept going by does of amtriptyline, which make me feel like shit anyway, but at least I can function. I'm still at work, but energy levels are such it doesn't leave much for anyting else.
adequate rest and monitoring yourself are the key - graded
no stress and don't push yourself
I feel for you, its a terrible illiness which I am only to aware of
good luck
There are 3 other engineers who work backshift and are also going to be applying for the dayshift position (one cos his wife has a new baby, one who just prefers dayshift and one who doesnt get on with his backshift manager). I was wondering if any of you were able to suggest good lines or buzzwords I could put in my husbands letter to make it stand out and to stress the importance of his health (without it looking as though he is not capable of doing the job!)
thanks
Some specialists [Endocrinology] think CFS is just made up by lazy thinking on the part of GPs who rule out hypothyroidism as a possible source, because they have a textbok centric view of what hypothyroidism is [within arbitary margins of error], and if it doesn't agree with their reading from the blood tests, they say you don't have it, and call it something else, in this instance Chronic Fatigue Syndrome.
In some cases that may be true. I believe CFS has many causes, much like headaches. That doesn't mean headaches don't exist.
Theres support, chat, advice, laughs and basically someone who knows how you feel