Lupus progression

[presto2]

Hi I was diagnosed with fibromyalgia and lupus in October 2012. I was told that my lupus is only mild and is secondary to my fibromyalgia.

My question is can lupus get worse overtime?.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I am sorry you have had a diagnosis of lupus and fibromyalgia. The good news is that for most patients, lupus is well controlled, many coming off all medication. Diagnosis is far more advanced and there is far better treatment than 40 years ago. Therefore, there is every good reason to feel confident.

No one can predict what will happen in the future. This is true whether we have lupus or not. It is natural to feel anxious and therefore it is important you have someone to whom you can talk - sometimes this is too difficult for family and friends.

We have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[miltonmadden]

I have SLE Lupus which my Rheumatologist said is mild however I have been diagnosed with Fibromyalgia in 2014 and I think that both diseases mimic each other so I believe you do not know which is the Lupus flaring up or the Fibromyalgia it can get so confusing at times but the pain can be so unbearable I do not know how you feel.

[Atibrat Moderator LUPUS SUPPORT]

I was diagnosed in 2009 and for me it is not that it is worse but new things have developed along the way. I also have flares so bad times and better times. I am one who responds well to prednisone when the disease is flaring with little side effects. I think I am lucky in that so far.

I have found working closely with my doctors and learning the signs and listening to my body has helped me to control my disease so far.

It helps me to avoid stress, get plenty of rest and try to eat a healthy diet but I guess that is general for most things.

It is not always easy but I try to make the best of it. My best friend is a type one diabetic so I realize many people have chronic medical issues and we give each other support though they are different diseases.

Good luck and I always say at least now I stop and smell the flowers because I had to slow down. Positive things can come out of anything.

[Freckle1000 Volunteer]

To keep your SLE under control it is important to be very aware of what signals a Lupus flare for you and be sure you're Dr knows your particular and possibly peculiar Lupus pattern. It takes a lot of time to figure this out, and its worth going back over the symptoms that originally lead to your lupus diagnosis and being very pedantic about every little detail. I know how fibromyalgia can muddy the waters.

DO NOT WORRY It sounds like you will never have to worry about the kind of things I'm about to say -

But I have a rather nasty - internal organ attacking form of Lupus that shows very few outward symptoms. I am now suffering from serious renal and pancreatic problems. This is primarily due to a Rheumatologist who was fixated on my Fibromyalgia and anxiety state.

This was at the expense of what I was plainly telling him.

That I was having a Lupus Flare !

He seemed very pleasant and caring and did not provide the slightest inkling of not believing or processing what I was telling him - other than taking very little action. At the time I thought 'He must know what hes doing, he's a highly regarded Professor?'

When it comes to seeking medical help for your Lupus, my advice is to leave Fibromyalgia completely and utterly out of the conversation. This will leave you less prone to being fobbed off as a somatic hysteric.

Sorry to be so jaded. But Ive had SLE for 33 years now. (I'm 48)