Hi and welcome to the board. This is a great place to meet others and ask questions, plus provide support for others. Hopefully you will find the same support I have.
Sally
Sally
1 - 8 of 8 Posts
Welcome to the forum !
Having lupus can be a very lonely business but here you will find understanding and sympathy.
There is nearly always at least one person who has had similar experiences and problems.
Fatigue is the symptom most complained about and is often associated with inadequately controlled disease. Other possible causes are often neglected - people who have been diagnosed for many years can fall into a sort of treatment doldrum depending on what sort of care they are getting at both specialist and GP level.
It is important to have a thorough check at least annually for posssible thyroid problems, anemias of various sorts, diabetes and fibromyalgia as well as for any signs of worsening disease.
Depresssion is a commonly unrecognised cause of undue fatigue not to be dismissed out of hand because it takes many forms. Low level depression is very common when there's chronic disease and may even be caused by the disease itself, apart from a natural reaction to the difficulties of living with it. Many doctors believe there can be a serotonin problem in people with lupus who are often helped by an SSRI type antidepressant.
It is very difficult living with an 'invisible' illness & accepting whatever limitations that it almost inevitably brings to each of us even if we are not severely affected. There are many complicated and conflicting emotions. The emotional and psychological implications of having lupus is a vast topic.
Often people struggle along making few concessions to being ill in a misguided effort not to be ' defeated' and are very demanding of themselves. Taking a good look at diet and considering suitable forms of exercise is another avenue to explore.
On the medicine side the addition of another anti malarial to the Plaquenil can bring huge benefit. It's called Quinacrine in the USA and Mepacrine in the UK and is well known for its energising benefit as well as bringing additional disease modifying benefits and helping with joint aches and pains.
I hope you will find the forum very helpful for both information and support
Bye for now
Clare
Having lupus can be a very lonely business but here you will find understanding and sympathy.
There is nearly always at least one person who has had similar experiences and problems.
Fatigue is the symptom most complained about and is often associated with inadequately controlled disease. Other possible causes are often neglected - people who have been diagnosed for many years can fall into a sort of treatment doldrum depending on what sort of care they are getting at both specialist and GP level.
It is important to have a thorough check at least annually for posssible thyroid problems, anemias of various sorts, diabetes and fibromyalgia as well as for any signs of worsening disease.
Depresssion is a commonly unrecognised cause of undue fatigue not to be dismissed out of hand because it takes many forms. Low level depression is very common when there's chronic disease and may even be caused by the disease itself, apart from a natural reaction to the difficulties of living with it. Many doctors believe there can be a serotonin problem in people with lupus who are often helped by an SSRI type antidepressant.
It is very difficult living with an 'invisible' illness & accepting whatever limitations that it almost inevitably brings to each of us even if we are not severely affected. There are many complicated and conflicting emotions. The emotional and psychological implications of having lupus is a vast topic.
Often people struggle along making few concessions to being ill in a misguided effort not to be ' defeated' and are very demanding of themselves. Taking a good look at diet and considering suitable forms of exercise is another avenue to explore.
On the medicine side the addition of another anti malarial to the Plaquenil can bring huge benefit. It's called Quinacrine in the USA and Mepacrine in the UK and is well known for its energising benefit as well as bringing additional disease modifying benefits and helping with joint aches and pains.
I hope you will find the forum very helpful for both information and support
Bye for now
Clare
Hi there,
I too have just joined the forum and i was diagnosed 10 years ago with lupus.
I'm sorry to hear that you suffer so badly from fatigue, it must be hard for you. I do suffer from fatigue but only in flares but when it hits, it hits hard to the point where i could just sleep anywhere for any amount of time and i get very tearful!
Hopefully this site will provide you with some helpful advice and guide you in the right direction
JessW24
I too have just joined the forum and i was diagnosed 10 years ago with lupus.
I'm sorry to hear that you suffer so badly from fatigue, it must be hard for you. I do suffer from fatigue but only in flares but when it hits, it hits hard to the point where i could just sleep anywhere for any amount of time and i get very tearful!
Hopefully this site will provide you with some helpful advice and guide you in the right direction
JessW24
1 - 8 of 8 Posts
