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New here and to SLE

330 Views 4 Replies 4 Participants Last post by  Joandublin
Hello everyone,
I am new to this site and resently dianosed with SLE. I was looking for information about symptoms, medications, and ways to cope with the misc. changes (fatigue, rashes, sore muscles, joint pain, head aches, mouth sores, and hair thinning). Is this normal for Lupus patients ? :worried:

Alabama Girl
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Hi Zymae and :welcome:

You have come to the right place to get information on your particular symptoms and also for reassurance and understanding of your situation.

The symptoms you mention are very common in Lupus and if you do a search in the Symptoms forum you will come up with lots of posts about them. If you have specific problems you would like to discuss then just put a post in the appropriate forum :) someone will come along and help out.

What medications are you currently on, usually once we start on them these symptoms become less troublesome but we do still go through periods of flares and need to make a few lifestyle adjustments to help control our disease.

I hope you enjoy the site and all it has to offer.

I am currently on Plaquenil, Flexeril, and mobic. My doctor recomended I exercise more, but either my pain or fatigue hinders me. I am starting to wonder if I will see a day without pain. Are there any secrets to handle the fatigue? :unsure:
Hello and welcome :)

I presume if you are newly diagnosed that you haven't been on plaquenil for very long? It is a wonderful drug for most people and is disease modifying so reduces the frequency and severity of flares. However, it does take a long time to start working so you need to be patient. It ususally takes 3-6 months to start working and can take up to a year (sometimes more).

The symptoms you describe are very typical for someone in a flare. I'm sorry you're feeling so rough for the moment but you will get better times and you will learn to deal with it all. If you are in a lot of pain, don't hesitate to complain to yur doctor who may be able to give you something else to help until the plaquenil starts working.

At first a diagnosis of lupus can be rather overwhelming. There is so much to deal with and it is a complex disease. With time you will learn where to find information (beware of too much random internet searching and stick to reputable hospital sites, this one and the Lupus Foundation of America).

Support is also very important and even if you are not someone who typically talks about things when they are bad it is good to learn to come here and look for that support.

One of the most important lessons to learn (for me this isn't just limited to lupus...) is to take one day at a time. Looking back is not terribly helpful and looking too far forward with regard to your disease isn't either (as it is unpredictable). I know that that is easy for me to say but it takes longer to put into practice.

It isn't easy but we will be there to help whenever you need us, just ask.
many hugs :hug:

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Hi Zymae

Welcome to the Forum :) You ask a pertinent question about secrets to handling the fatigue.

Fatigue has got to be one of the most troublesome symptoms cited by people with Lupus. I know it is for me. Other symptoms come and go but for many the fatigue is always there.

I dont know if there are any secrets but there are some common sense approaches to managing it. You mentioned in your introduction post that you have been on Plaquenil since 2007 so you will have reached maximum benefit of this drug at this stage. Let me tell you how I try to manage the fatigue.

Firstly I used to work full time but over the past couple of years I have had to reduce this to working half time only. I just couldnt manage a full week's work without crashing completely - usually midweek. If you are working and can manage to reduce your hours it can be a good idea to take a midweek day off (say Wednesday) and just use this to sleep and rest your body.

Secondly I got someone in to help me with housework and ironing. Its only once a fortnight but it has been a godsend as I cant hold the weight of the iron for too long and I just dont have the energy for washing floors, etc.

Thirdly, when I can, I sleep. If Im tired when I come in from work I lie down for an hour on the sofa. There is no point in fighting it because my body wont let me do anything else but lie down.

Lastly there are medications that can help the fatigue - provigil for example. But you need to talk this through carefully with your Rheumy as it might be better for your body to slow things down rather than artificially creating energy. Having said that, sometimes we just need that extra energy in order to function. I guess it all depends on our lifestyle and commitments, etc. Not everyone can afford to just rest up when they can.

Do mention the fatigue to your Rheumy. Keep a record of how it feels, how often you feel fatigued, what it prevents you from doing, how it is impacting on your life, etc. These are important considerations for your doctor and very good for you to get an idea of how your Lupus is affecting you.

The very best of luck and let us know how you are doing
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