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Discussion Starter · #1 ·
Hi ya everyone,

I posted on a different thread a few months back, since then I have formally been diagnosed with SLE and Raynards. Although I have had the problems for many years I am finding things hard to deal with right now. I have had very little information from my consultant :( I don't know what the future holds and I know lupus is very unpredictable but I need to know for the sake of my two children ( 15 months and 3 months) and my husband who is taking the full force of my ups and downs.

Some days I really feel poorly, my joints are the worst thing, I get so stiff and sore in my neck, lower back, hips, knees, hands and elbows. Some morning its a challenge to even sit up in bed :( I am only 27 years old and I feel like a 100 year old.

I have heard that lupus had flare ups, but mine just seems a constant flare up. For 4 years now i can not remember a day when i have not been in pain with my joints or feeling generally unwell :(

When i was first diagnosed i was so happy that this mystery illness had been named but now its just the same as it even was just got a name. Sometimes its harder to deal with as people really don't understand it even if they say they do. How can a normal person understand the constant feeling that I have all day every day. They are going to start me on anti malaria drugs next month and I am scared of what that means to me and what it will help or not help.

I think right now I just need to know I am not alone because it certainly feels that way at the moment.

Thanks for reading my little rant :)

Jenny
 

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elisabethm
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:welcome:Hi Jenny welcome to the site you have came to the right place to get some good advice and plenty of support.You are not alone we also have a good chat room so come in and have a chat with us Best Wishes Elisabeth
 

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Hi Jenny

The despair you are feeling now has been felt by us all. I was diagnosed last December and until a week or two ago, I felt as if my life was just about over. At my lowest, I even said this to my husband. I've been on the anti-malarial, plaquenil, since my diagnosis. It took until last week for me to start feeling anything like a "normal" person - and it is absolutely amazing and beyond all my expectations!!!!!!!!! So the message is - you may need to be patient for a little while longer - BUT don't loose hope!

Take care

Merle
 

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Hi Jenny,

It's true that Lupus is very unpredictable and it's impossible to say for sure what course someone's individual disease will take. However as you have had these symptoms for around 5 years and nothing major has happened so far that's a very good sign. It's often said that if one is going to have any major organ involvement that it will occur in those first 5 years, so take heart in that.

The other thing is that once you start on Plaquenil then it's like an insurance policy against disease worsening and it alone works very well for a lot of folk and is all they need. It's quite possible you will fall into that category. I'm glad you will be starting it soon, it won't work instantly, it takes time to change things, anywhere from 3 to 9 months seems the norm. However during that time you will see improvement along the way. It is very helpful for joint pain, rashes, mouth ulcers, hair loss and helps relieve some of the fatigue. If your joint pain is very troublesome they will often give you a non-steroidal anti-inflammatory medication as well to help with that.

It's a bit overwhelming when first diagnosed, especially if you have a young family to take care of. No you don't have to travel this path alone, that's what this place is for ;) to help you come to terms with things, talk to others who know what you are going through and most importantly to reassure you that you can live with Lupus with a little bit of lifestyle adjustment and moral support.

I hope that we can provide that for you. In the meantime try and rest whenever you get a chance. If the baby and toddler have naps, then you should nap too. Everything else can wait and you might have to relax your ideas about housekeeping etc. in order to get enough rest. What's most important now is your health and your family - getting adequate rest and taking precautions in the sun can go a long way to helping your body cope a lot better.

(((((((((((Jenny))))))))))) :hug:

love
Lily
 

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Hi Jenny,

I assume the medication you will be starting is Plaquenil. It is commonly used to treat Lupus and has few side effects. Plaquenil takes awhile to start working, for me it was 6 months but it is different for everyone. It should not only lessen the symptoms you are presently having, it should help keep you from flaring once you are stable.

I hope things start looking up for you soon.

Take care,
Lazylegs
 

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The Other Illinois Tammy
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Jenny,
Hi and welcome. It can be scary at first and often. The medicines you are talking about will help with keeping the lupus flares somewhat down. There are other meds that you can take for pain and some for the joints. I would talk to the doctor about all of this and let him know that you have to have something that you can not go on this way. Sometimes it just means conveying that the condition has gotten to a point of not handling it very well.

No one can tell you what is in store for your lupus, it does vary from person to person. The fatigue seems to be the big one for most people and pretty consitant in all of us. I can say with some confedience that the joint pain and stiffness is yet another one. The degree each of these things bothers us depends on a number of things. How well you tolirate pain, how much pain you are having, how much help you are getting with day to day things, and of course what else might be going on to affect all the pain and fatigue. Lupus is everyday changing for most of us. One day you might feel like you was hit by a 747 and the next day you feel like someone played tugawar with your body in the night.

You will have to adjust with each of the daily problems as they come on and how long they last for you. I know this is not much help but it is the best I can do. I have sle for 17 years and am still adjusting to the ever changing body of mine. I stop looking for a cure and just hope for better meds to treat the problems now. I don't want it all to sound bad. I have had some good days and when they come most if not all of us cram all that we can into those few days of feeling well again.

I do hope that in time you find your trigger and learn to stay away from them, and feel good as often as possible.
 

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Discussion Starter · #7 ·
Thank you all,

You have already given me so much hope for the future. I thought i would be like this for ever. I have been pretty depressed about the whole situation. I have found it hard to see my family and friends running around with my kids, wanting to join in so much but physically not being able to. In the future i want to go back to work ( a bit impossible at the moment with two kids :) ) i thought it was out of the question as i could not work in the state i am in at the moment. I am really looking forward to starting the treatment as i hope now that i have a name to my condition i could finally get a treatment that may not be 100% successful but one that will at least give me some relief.

The future does not look so gloomy any more. Thanks

Jenny
 

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Pamela b
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Hi Jenny

HI Jenny
I am like you, very recently diagnosed with SLE, Sjorens and Reyanrad and Vasculitis and am waiting to start my medication and the only info I have thus far is from these great people here and the Lupus site. I think when you get the DX you are just shell shocked even if in your heart you knew you had it you just want to hope you are wrong.
I am going to write down my questions and pass it over next time I go. My Gp is nothing worse then useless to say the least so will give me nothing in the way of info
Try not to worry, hard as it is, share your worries with your family, they will be worried.
Like you I am scared , confused and worried and yet hopeful that after years of being ill maybe, just maybe I may evetually get to feel better.
I do have major organ involvement ( heart. liver and lungs ) but am hopeful things will not get worse
Keep in touch and never be afraid to ask them here, I must drive them to distraction but they have beeen just wonderful
Please look after yourself and my advice is rest and dont feel guilty about it either Keep in touch
Hugs and hopes
Pam
x
 
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