[gridphn007]

Hi,

I'm new to this site. I was diagnosed with Lupus or a "possible connective tissue disorder" about 10 years ago. The reason for the lack of a definitive diagnosis was inconsistent blood work results.

Despite a definitive diagnosis, my (deceased) mother had Lupus and I believe I have it too. I am on plaquinil and diclofenac. I have been on prednisone once for a flare, but do not need it regularly.

I often appear very healthy and because of that, my illness is very deceiving. Combine that with an outgoing personality and most peoiple don't believe I feel as lousy as I do. But the chronic fatigue hardly ever disappears. HOw many of you have that problem?

I guess I just wanted to stick my head out and say hello and get a start on connecting with people like myself. I have no one in my area that has this diagnosis and I often feel very frustrated.

Hello for now and I hope to find this site helpful in some way.

Thanks for being here.

gridphn007

 

[Pink Pearl]

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

 

[Clare.T]

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

 

[debatat]

Just wanted to say a quick hi

The site is a great place to get support and a wealth of information.

The fatigue is deadly and can be hard when we look so well.

I think Clares advice is excellent.

Take care

Deb

 

[KarolH]

Hello and welcome to the best place on the Internet for support, information and compassion. These people have been a life saver for me.:wink2:

I take 200 mg of Provigil daily for fatigue and it really works. I do not know how I would function without it. You should ask your doctor about it.

Clare has given you great advice. I understand what you mean when you talk about having a out going personality and how others perceive you by that. I put on the happy face all the time and people really don't know how sick I am.

 

[LolaLola]

Hello,
Like you I do not advertise my illness. Hate it if people see me on crutches or a frame. I actually do look ill though, so I do get some understanding.
I have good friends, most with Lupus, two without lupus but one is blind. These people all understand and have the same frame of mind i.e we all just get on with it and have learned not to need "validation" from people who just can't understand. You will find plenty of people here who can identify with how you feel, so you need have no worries about being understood here.

My Daughter also has Lupus and hates anybody knowing. It is worth bearing in mind that as much as 80% of all disabilities are invisible. I have told this very firmly to someone who thought my Daughter looked too well to be ill!
x Lola

 

[Lupo30]

Hi and Welcome:bow:

Hope you find this forum as useful as I do. Fatigue is a real problem and it is so frustrating that people think that because we look normal we must feel normal. This is something that I have trouble dealing with, also.

Hope to hear from you again.

Love Kat x

 

[JessW24]

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