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Fibromyalgia & M.E
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By (user no longer on site) OP
over a year ago
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Hey everyone 
Im looking to chat with people who suffer with these two conditions.
After developing double pneumonia 8 years ago and being mis diagnosed and treated by my gp i ended up with sepsis which very quickly turned to septic. I have never been so poorly in my life. All my organs started shutting down and i was rushed to a&e where again i was mis diagnosed and treat by being left in a side room for 18 hours!
I never fully recovered and suffered massive amounts of pain and tiredness even sleeping a whole weekend away once! I was diagnosed with fibromyalgia and M.E after they tried to rule out anything else. I do not medicate and stay clear of any painkillers etc as have seen how zombie like they can make people without helping the pain. Im looking to connect with people with the same conditions to maybe learn from each other hints and tips with coping with it all.
Feel free to send me a message if you dont fancy replying on here. Male or female i dont mind.
Gentle hugs to anyone suffering with these |
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"I have chronic pain/fatigue. Same same but different? All gets the same treatment x
Gentle hugs to you! How do you manage it? Meds? "
I take tramadol and paracetamol, but the minimum. Takes the edge off.
I was also B12, folate and Vit D deficient, so take alot of supplements and do my own B12 injections, they've really helped with some of the symptoms like depression/anxiety. |
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By (user no longer on site) OP
over a year ago
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"I have chronic pain/fatigue. Same same but different? All gets the same treatment x
Gentle hugs to you! How do you manage it? Meds?
I take tramadol and paracetamol, but the minimum. Takes the edge off.
I was also B12, folate and Vit D deficient, so take alot of supplements and do my own B12 injections, they've really helped with some of the symptoms like depression/anxiety."
Thats interesting how do you get the b12 injections? Was that from your gp? |
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"I have chronic pain/fatigue. Same same but different? All gets the same treatment x
Gentle hugs to you! How do you manage it? Meds?
I take tramadol and paracetamol, but the minimum. Takes the edge off.
I was also B12, folate and Vit D deficient, so take alot of supplements and do my own B12 injections, they've really helped with some of the symptoms like depression/anxiety.
Thats interesting how do you get the b12 injections? Was that from your gp? "
I buy them from a German pharmacy site, you can get them over the counter in Europe. GPs here are useless for that kind of thing, they don't know enough. |
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By (user no longer on site) OP
over a year ago
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"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees."
 wow uncalled for! For the record i was failed by 1 gp. I have an amazing gp now who goes above and beyond to try and help |
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By *asmeenTV/TS
over a year ago
STOKE ON TRENT |
"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees."
Yeah because your opinion is helpful right???
Doctors do get it wrong
The girl was I'll have some
Human compassion |
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"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees."
Bit like the 2 GPs who told me the lump on my face was nothing to worry about... When it was actually skin cancer? Ok mate... |
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By (user no longer on site)
over a year ago
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Pussycat here I have something similar Elhers danlos syndrome a connective tissue disorder.
Fatigue pain subluxations and dislocations on every joint some days are very hard I've been seeing a chiropractor for about eight weeks with some improvement which has been uplifting and constant pain is debilitating to say the least Elhers danlos is a similar thing to fibro muscles feel like they are on fire mainly back and hips .massage gun splints and braces all help but key is also to rest listen to your body .xx |
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By (user no longer on site)
over a year ago
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"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees."
Reported |
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By (user no longer on site)
over a year ago
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"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported"
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does. |
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By (user no longer on site)
over a year ago
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"Pussycat here I have something similar Elhers danlos syndrome a connective tissue disorder.
Fatigue pain subluxations and dislocations on every joint some days are very hard I've been seeing a chiropractor for about eight weeks with some improvement which has been uplifting and constant pain is debilitating to say the least Elhers danlos is a similar thing to fibro muscles feel like they are on fire mainly back and hips .massage gun splints and braces all help but key is also to rest listen to your body .xx"
My ex has EDS, he used to regularly dislocate something and just pop it back himself |
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By (user no longer on site)
over a year ago
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"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does. "
Absolutely ignorant. I've know a girl who died from myalgic encephalomyelitis and another on a feeding tube. You have no idea how bad it can get. Thank your lucky stars and don't judge when you know nothing. |
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"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does. "
Pushing through the pain doesn't do you any good in the long run, just because one person can do all that, doesn't mean they should or that everyone else can. Pain management always advise pacing. |
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I've been living with depression, anxiety and fatigue for about 5 years. Depression and anxiety are pretty much under control now and mentally I'm feeling much better.
My fatigue issues were compounded after getting Covid in Jan21 after a second pulmonary embolism. My symptoms fit for Long Covid but I haven't had an 'official' CFS/ME diagnosis. I also get awful migraines that put me out of action for days at a time.
Sending hugs to all who need them x |
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By *ad NannaWoman
over a year ago
East London |
"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does. "
They can't be that bad then, or they wouldn't be able to push themselves through.
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By (user no longer on site)
over a year ago
|
"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does.
They can't be that bad then, or they wouldn't be able to push themselves through.
"
Did you really just skip through what I wrote? Clearly she IS that BAD |
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By (user no longer on site)
over a year ago
|
"I've been living with depression, anxiety and fatigue for about 5 years. Depression and anxiety are pretty much under control now and mentally I'm feeling much better.
My fatigue issues were compounded after getting Covid in Jan21 after a second pulmonary embolism. My symptoms fit for Long Covid but I haven't had an 'official' CFS/ME diagnosis. I also get awful migraines that put me out of action for days at a time.
Sending hugs to all who need them x"
Have you had your Vitamin D levels checked? It was thought in 2018 that I had CFS (not the same as ME), I’d be absolutely shattered after taking a shower, couldn’t do anything without collapsing later on. Then I had a vitamin D blood test done and was found to have a low level. Been on supplements ever since. Low Vit D can also cause migraines |
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By *ad NannaWoman
over a year ago
East London |
"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does.
They can't be that bad then, or they wouldn't be able to push themselves through.
Did you really just skip through what I wrote? Clearly she IS that BAD"
Clearly not, if she can look after all of those animals every day. Unless she's Superwoman. You seem ignorant of how these kinds of illnesses affect different people. You think because one person can carry on as normal means everyone can. She's managing with her medication, and I applaud her for that. Hopefully, it doesn't get so bad she has to give up her animals. |
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By (user no longer on site)
over a year ago
|
"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does.
Absolutely ignorant. I've know a girl who died from myalgic encephalomyelitis and another on a feeding tube. You have no idea how bad it can get. Thank your lucky stars and don't judge when you know nothing. "
I’m sorry to hear that of your friend, but deaths from ME are quite rare. |
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By *ad NannaWoman
over a year ago
East London |
"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does.
Absolutely ignorant. I've know a girl who died from myalgic encephalomyelitis and another on a feeding tube. You have no idea how bad it can get. Thank your lucky stars and don't judge when you know nothing.
I’m sorry to hear that of your friend, but deaths from ME are quite rare. "
Are you serious? Because not many people die from it means it's not a serious illness?
|
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By (user no longer on site)
over a year ago
|
"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does.
They can't be that bad then, or they wouldn't be able to push themselves through.
Did you really just skip through what I wrote? Clearly she IS that BAD
Clearly not, if she can look after all of those animals every day. Unless she's Superwoman. You seem ignorant of how these kinds of illnesses affect different people. You think because one person can carry on as normal means everyone can. She's managing with her medication, and I applaud her for that. Hopefully, it doesn't get so bad she has to give up her animals."
Yeah that’s the problem - she’s not managing with her meds, if you saw what she writes on FB every day you wouldn’t be saying these things, not two months ago she was BEGGING people to take her horses, she’s attempted suicide more than once because of her condition, she can’t get PIP because they keep turning her down so she’s forced to work, she lives in a rural place, so had to learn to drive, which she hates, but buses where she is aren’t regular enough. So the only ignorant one here is you. I only wish I could help her more but I can’t because we are in different countries, and I’m disabled too. |
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"Hey everyone
Im looking to chat with people who suffer with these two conditions.
After developing double pneumonia 8 years ago and being mis diagnosed and treated by my gp i ended up with sepsis which very quickly turned to septic. I have never been so poorly in my life. All my organs started shutting down and i was rushed to a&e where again i was mis diagnosed and treat by being left in a side room for 18 hours!
I never fully recovered and suffered massive amounts of pain and tiredness even sleeping a whole weekend away once! I was diagnosed with fibromyalgia and M.E after they tried to rule out anything else. I do not medicate and stay clear of any painkillers etc as have seen how zombie like they can make people without helping the pain. Im looking to connect with people with the same conditions to maybe learn from each other hints and tips with coping with it all.
Feel free to send me a message if you dont fancy replying on here. Male or female i dont mind.
Gentle hugs to anyone suffering with these "
Can’t send you private message as I’m outside your age range.
I was diagnosed in 2014 have done lots of research and read lots done by a friend who went to USA for treatment.
Too much to write on here. Drop me a message and I may be able to give you some tips.
Big hugs to all suffering
Tony |
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By (user no longer on site)
over a year ago
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Yes in relocate joints myself were possible as to stay out of a n e .were there's a will there's a way .
It's hard but I lead the best life I can it won't define me . |
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By (user no longer on site)
over a year ago
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"Yes in relocate joints myself were possible as to stay out of a n e .were there's a will there's a way .
It's hard but I lead the best life I can it won't define me ."
  |
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By (user no longer on site)
over a year ago
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"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does.
Absolutely ignorant. I've know a girl who died from myalgic encephalomyelitis and another on a feeding tube. You have no idea how bad it can get. Thank your lucky stars and don't judge when you know nothing.
I’m sorry to hear that of your friend, but deaths from ME are quite rare.
Are you serious? Because not many people die from it means it's not a serious illness?
"
FFS, where do I say it’s not a serious illness? And actually those that do die that have it generally die from complications that raised from the condition - like Freddie Mercury - he didn’t die from AIDS per se, he died from pneumonia that his body couldn’t fight because of AIDS. Stop seeing what you want to see and try reading what’s under your nose! |
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By (user no longer on site)
over a year ago
|
"I'm glad you think being a GP 8s easy, tell you what why don't you do they're job? Typical person with M.E adopting the sick role. No wonder the nhs is on it's knees.
Reported
Why did you report him?
I know one person with M.E she once ran 3 businesses at the same time despite not being able to get out her bed on a regular basis.
I know loads of people with Fibromyalgia, all work, one is so bad with it there’s not one day she’s not complaining about the pain, but she has two jobs and 5 horses to care for, and cats, dogs, chickens & geese, and a useless doctor. She’d love to not have to get up every day but she has no choice but to drag herself up. It’s not just the NHS being on its knees but how you look at life itself, take the medication offered push yourself through the pain to get things done. If one medication doesn’t suit you, keep going til you find something that does.
They can't be that bad then, or they wouldn't be able to push themselves through.
Did you really just skip through what I wrote? Clearly she IS that BAD
Clearly not, if she can look after all of those animals every day. Unless she's Superwoman. You seem ignorant of how these kinds of illnesses affect different people. You think because one person can carry on as normal means everyone can. She's managing with her medication, and I applaud her for that. Hopefully, it doesn't get so bad she has to give up her animals."
Exactly, people don't understand that both M.E and fibromyalgia effect people differently. I know a police woman with fibromyalgia and even though she can do her job she understands others have it worse. She's a great lady. X |
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By *onsey83Couple
over a year ago
Glasgow |
I’ve had fibromyalgia since I was 18 it didn’t affect me every day like it does now. I had my thyroid removed in 2012 since then my fibromyalgia has got really bad. I’m now in pain 24/7 the only time I’m not pain is when I’m sleeping or sexy time. I also have low b12 so have b12 injections for life every 10 weeks as 13weeks is to long for me.
There is a really good Facebook page with lots of support. T x |
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By (user no longer on site)
over a year ago
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Just scanned the thread OP so maybe already suggested but look into massage & complementary therapies. Loads that can be done to help manage symptoms. Hope you find something that helps. |
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