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Chronic fatigue syndrome, talk it through with ME...not nosey, just very interested
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You're talking about very wide and disparate symptoms and a label that is usually reached by doctors after they have exhausted all other diagnoses and still can't work out what's wrong.
imo
Ask my dad. |
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By (user no longer on site)
over a year ago
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I'm always tired,I've been blaming my medication but I don't take much of that now. I had a very difficult day yesterday and today I am struggling. I spoke to a couple of the doctors at my surgery; one ignored me and went on about my past medical history and hormones,the other laughed down the phone. So I don't talk to them about it any more. Some days my muscles are so weak and aching I can't function. I'm tired but too tired to relax and sleep. Every muscle hurts today and every joint but a doctor took my anti inflammatories away and said take paracetamol and use ice packs. |
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By (user no longer on site)
over a year ago
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"golly just the title is enough to tire me out. Seriously though, I'm interested in the condition and the implications and impact it has on peoples lives"
I got ill when I was 13 and i'm now 28. It's had a massive impact on my life but aside from the fatigue and pain, the biggest hurdle to try and manage is the mental side of constantly feeling like that. |
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By (user no longer on site)
over a year ago
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When I told a doctor I'm tired all the time,I have blurred vision,I have no strength in my muscles after a busy day previous,she stared at me as if she didn't know what to say. I have to go in and say I think I may have X or Y. I'm trying to find out what's wrong because they don't seem to know what I'm talking about. If I have something planned I have to rest for a couple of days beforehand or I don't have the strength. I'm put off arranging to meet people from here because I need a couple of days rest before and a couple after. It dictates how you run your life. I tried cutting out wheat and stodge,it didn't make much difference. |
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By (user no longer on site)
over a year ago
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"I'm always tired,I've been blaming my medication but I don't take much of that now. I had a very difficult day yesterday and today I am struggling. I spoke to a couple of the doctors at my surgery; one ignored me and went on about my past medical history and hormones,the other laughed down the phone. So I don't talk to them about it any more. Some days my muscles are so weak and aching I can't function. I'm tired but too tired to relax and sleep. Every muscle hurts today and every joint but a doctor took my anti inflammatories away and said take paracetamol and use ice packs. "
I'm so sorry to hear that and hope your okay. Can you change surgery's, see a different Dr. I work for someone with me and she said it took her ages to find a Dr to take her serious.
Wish could help more ,sending you a hug x |
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By (user no longer on site)
over a year ago
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"I'm always tired,I've been blaming my medication but I don't take much of that now. I had a very difficult day yesterday and today I am struggling. I spoke to a couple of the doctors at my surgery; one ignored me and went on about my past medical history and hormones,the other laughed down the phone. So I don't talk to them about it any more. Some days my muscles are so weak and aching I can't function. I'm tired but too tired to relax and sleep. Every muscle hurts today and every joint but a doctor took my anti inflammatories away and said take paracetamol and use ice packs.
I'm so sorry to hear that and hope your okay. Can you change surgery's, see a different Dr. I work for someone with me and she said it took her ages to find a Dr to take her serious.
Wish could help more ,sending you a hug x"
My gp surgery teamed up with other local ones and went from an 8000 a patient surgery to a 20,000 patient surgery. You get a different doctor most times you go now. If I went to a different surgery it would probably be the same doctors. I'm lucky that I can work from home and sleep or rest when I need to. Some people have to look for work and have no help. |
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By (user no longer on site)
over a year ago
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I had constant fatigue in the mornings got my levels checked privately And they diagnosed a Testosterone deficiency that the NHS dependent on your area don't do much with.
They then prescribed Testosterone daily and the fatigue melted away.
Well worth pursuing if your a male suffering from these symptoms |
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By (user no longer on site)
over a year ago
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A friend of a friend had chronic fatigue syndrome, and was really bad with it for a year or so. The main thing that bothered her was that time disappeared so quickly... while she was sleeping 18 hours a day, the rest of the world was carrying on without her, which is incredibly sad. She is much better now, I believe!
The problem is, it has to be a diagnosis of exclusion - pretty much every illness you can have has tiredness as a symptom so its very difficult to eliminate all those possibilities and it has to be severe enough to say it is chronic fatigue syndrome. It is also incredibly incredibly rare and I don't think (having not checked out the latest research on it) that anyone knows what the cause is. |
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By (user no longer on site)
over a year ago
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I have a friend who was on here as a 'three' (suz1web). He had an operation a few years ago and has been left with Chronic widespread pain and Adrenal insufficiency (had to have one removed).
As a result, I have found out about this condition. Just the 'fatigue' is likened to a 'healthy person' staying awake for three days straight and then trying to function. He suffer from acute pain randomly 24/7. His nervous system is 'fulty' the pain is as real as if he had just broken a leg/burnt his arm/been stabbed etc. He has the pain of a heart attack often.
How anyone lives with that, I don't know.
The choice he has is to take such strong pain killers (legalised heroin), and 'exist'. Or live is perm pain.
I cannot conceive how he manages.
Yet he has two wives!
There are thousands of people with similar conditions. Destined to spend the rest of their lives in agony.
 |
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"I have a friend who was on here as a 'three' (suz1web). He had an operation a few years ago and has been left with Chronic widespread pain and Adrenal insufficiency (had to have one removed).
As a result, I have found out about this condition. Just the 'fatigue' is likened to a 'healthy person' staying awake for three days straight and then trying to function. He suffer from acute pain randomly 24/7. His nervous system is 'fulty' the pain is as real as if he had just broken a leg/burnt his arm/been stabbed etc. He has the pain of a heart attack often.
How anyone lives with that, I don't know.
The choice he has is to take such strong pain killers (legalised heroin), and 'exist'. Or live is perm pain.
I cannot conceive how he manages.
Yet he has two wives!
There are thousands of people with similar conditions. Destined to spend the rest of their lives in agony.
"
You live with it because you have to. Life is always better than death, although sometimes only just.
As a poster said above, sometimes the biggest struggle is the psychological acceptance that your entire life will be like this.
It's shit. And a lot of the time I think I'd rather be dead. But little mercies make living worthwhile. |
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By (user no longer on site)
over a year ago
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"
You live with it because you have to. Life is always better than death, although sometimes only just.
As a poster said above, sometimes the biggest struggle is the psychological acceptance that your entire life will be like this.
It's shit. And a lot of the time I think I'd rather be dead. But little mercies make living worthwhile. "
I take my hat off to anyone like this.
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By *annooWoman
over a year ago
Hastings |
My dad has cfs and me and it really pisses me off that people say coz they cant see what is wrong.that he cannot possibly be that ill..they should live with him and catch him when he collapses after doing a tiny bit of walking or something in the house
This is something that should be taken seriously tho as someone previous stated I is a wide range of things |
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By (user no longer on site)
over a year ago
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My Friend uses a scooter to get around. He can walk, but if he does, he is in so much pain and exhaustion, that he can not do much. I know from what he has said that because he has 'both arms and legs', he gets looked down on by some. Including family. He was a workaholic (far to much so). Now he cannot work. This is the thing that has 'hurt him the most'. He is still getting used to it. |
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"My dad has cfs and me and it really pisses me off that people say coz they cant see what is wrong.that he cannot possibly be that ill..they should live with him and catch him when he collapses after doing a tiny bit of walking or something in the house
This is something that should be taken seriously tho as someone previous stated I is a wide range of things"
It upsets me when people comment on how 'well' I look. When the reality is that I can't hold a plate for more than 30 seconds before a searing pain goes through my fingers, and I can't do various other things like tying shoelaces or brushing my hair some days because it's just too challenging. |
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By (user no longer on site)
over a year ago
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"My dad has cfs and me and it really pisses me off that people say coz they cant see what is wrong.that he cannot possibly be that ill..they should live with him and catch him when he collapses after doing a tiny bit of walking or something in the house
This is something that should be taken seriously tho as someone previous stated I is a wide range of things
It upsets me when people comment on how 'well' I look. When the reality is that I can't hold a plate for more than 30 seconds before a searing pain goes through my fingers, and I can't do various other things like tying shoelaces or brushing my hair some days because it's just too challenging. "
could be carpel tunnel syndrome also
just an idea. |
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By *annGentMan
over a year ago
With a cracking view |
Had my post-viral fatigue syndrome a few years ago ...
I had a brill GP, who diagnosed me by adding up my signs and symptoms, and then referring me to specialist support.
Improved over several months, but still got a gremlin or two, so still feel subtly fatigued as a minimum most days ...
Worst things for me still are the lasting memory issues, and the naff sleep pattern ...
Apparently, your body overproduces adrenaline ... WTF !!! lol
I had it mild, feel for those who have it really severe ...
And it's not 'Yuppy Flu' !!! |
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By (user no longer on site)
over a year ago
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"I have a friend who was on here as a 'three' (suz1web). He had an operation a few years ago and has been left with Chronic widespread pain and Adrenal insufficiency (had to have one removed).
As a result, I have found out about this condition. Just the 'fatigue' is likened to a 'healthy person' staying awake for three days straight and then trying to function. He suffer from acute pain randomly 24/7. His nervous system is 'fulty' the pain is as real as if he had just broken a leg/burnt his arm/been stabbed etc. He has the pain of a heart attack often.
How anyone lives with that, I don't know.
The choice he has is to take such strong pain killers (legalised heroin), and 'exist'. Or live is perm pain.
I cannot conceive how he manages.
Yet he has two wives!
There are thousands of people with similar conditions. Destined to spend the rest of their lives in agony.
You live with it because you have to. Life is always better than death, although sometimes only just.
As a poster said above, sometimes the biggest struggle is the psychological acceptance that your entire life will be like this.
It's shit. And a lot of the time I think I'd rather be dead. But little mercies make living worthwhile. "
I've alway said if I could push a button and not have ever existed then I'd push it without hesitation. Obviously that button doesn't exist and I don't do anything to solve it myself because I wouldn't want to do that to my love ones. |
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"My dad has cfs and me and it really pisses me off that people say coz they cant see what is wrong.that he cannot possibly be that ill..they should live with him and catch him when he collapses after doing a tiny bit of walking or something in the house
This is something that should be taken seriously tho as someone previous stated I is a wide range of things
It upsets me when people comment on how 'well' I look. When the reality is that I can't hold a plate for more than 30 seconds before a searing pain goes through my fingers, and I can't do various other things like tying shoelaces or brushing my hair some days because it's just too challenging.
could be carpel tunnel syndrome also
just an idea. "
It's not, but thanks x |
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"I have a friend who was on here as a 'three' (suz1web). He had an operation a few years ago and has been left with Chronic widespread pain and Adrenal insufficiency (had to have one removed).
As a result, I have found out about this condition. Just the 'fatigue' is likened to a 'healthy person' staying awake for three days straight and then trying to function. He suffer from acute pain randomly 24/7. His nervous system is 'fulty' the pain is as real as if he had just broken a leg/burnt his arm/been stabbed etc. He has the pain of a heart attack often.
How anyone lives with that, I don't know.
The choice he has is to take such strong pain killers (legalised heroin), and 'exist'. Or live is perm pain.
I cannot conceive how he manages.
Yet he has two wives!
There are thousands of people with similar conditions. Destined to spend the rest of their lives in agony.
You live with it because you have to. Life is always better than death, although sometimes only just.
As a poster said above, sometimes the biggest struggle is the psychological acceptance that your entire life will be like this.
It's shit. And a lot of the time I think I'd rather be dead. But little mercies make living worthwhile.
I've alway said if I could push a button and not have ever existed then I'd push it without hesitation. Obviously that button doesn't exist and I don't do anything to solve it myself because I wouldn't want to do that to my love ones."
I just hope euthanasia will be legalised and I can eventually choose my time to go, as I expect it to get worse as other age related health issues come along. |
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