View Full Version : Hello all, I am 24 my name us Sarah and I'm 24 . I have just been told I have SLE
05-12-2013, 01:26 AM
I seem to going through throu the mill ATM. I have poorly for several months ranging from severe head pains joint and muscle swelling, rash. It feels never ending with something new appearing. I do have a full time job but have had to be signed off due to all the above and constantly wanting to sleep. How long does tis last? Will I be able to return to work? Any advice would be greatly appreciated. Thank you
05-12-2013, 02:26 AM
Sorry to hear you're so poorly. I'm new here myself but welcome x
I've been I'll for 22 years so maybe you don't want to know how long it can last?!? But seriously, lots of people find things that help, some people 'grow out of it' and some people live a relatively 'normal' life with it.
I think the first step is always controlling a flare, which I hope your doc is working on with you.
There are some experts here...I'm sure they'll stop by and say hi soon.
05-12-2013, 05:59 AM
Thank you Jayne for your advice. Yes the doctors are looking I to things but I can't see the light at the end of the tunnel. They have told me I will have this for the rest of my life and have had more bloods done . Hope your ok and thank you again. I have struggled to breathe done days and have serious back pain. As I am new to this I just don't really understand fully what and why this is happening.
05-12-2013, 07:01 AM
Welcome to our family! I am sorry to hear that you are feeling so badly and that you've had to be taken off of work due to this.
You did not mention if you were taking any medication. If you are, what meds are they? Often, with proper treatment, your symptoms can be alleviated to enough of an extent where you can return to work. Also, it might be a good idea for you to consider asking your job for a different type of assignment that would not be so taxing on you and/or for some type of job accommodation. Many members have found other means of employment that were a bit more conducive to the needs of their health.
In short, there is no way for anyone to say how long your symptoms will last. Lupus affects each us of differently and causes different limitations in each of us. How your Lupus affects you is a completely unique symptomology and your treatment options, management strategies, and lifestyle changes will also be completely unique to you.
Even though we are unable to answer your specific question, we are here to help you as much as we can and to answer those questions that we can. I wish you the very best.
Peace and Blessings
05-12-2013, 11:01 AM
Thank you for your response . U was given a steroid then I gave to take hydroxychlotoquine 2 times a day. They have given me these until my other blood tests are back. I am hoping I will be able to return to work as I think drying g at home will drive me crazy. I just cannot seem to get out of the tired ness and it drives me crazy. Aiay nice to talk to people who understand and be. Able to help, I am so new to this disease I am unsure what is normal . I currently have. Rash sore head and back and feel like I constant have the flu I am just hoping it will get easier because at the moment it's something new every day. Then you again for talking to me xx
05-14-2013, 01:01 PM
If its lupus it's sounds like a flare and your docs are looking at getting it under control. Don't try and look too far into the future right now. Take each day as it comes (or each moment if a day is too much to think about!). Write down your symptoms even if they feel irrelevant. Rest as your body tells you. I find listening to podcasts stops my head buzzing!
Worry will not help! Be kind to yourself!
Sorry there are no definates here, just hang on in there.
05-15-2013, 08:44 AM
The fatigue and the feeling that you have the worst flu in your life that never seems to get better are very common symptoms of Lupus (as well as many other auto-immune disorders). Your regimen of Prednisone (I am assuming this is the steroid) and Plaquenil (I am assuming this is the quinine) are pretty standard treatment for most of us and especially those of us who are newly diagnosed. Inflammation and an over-active immune system are the major causes for many symptoms in Lupus and both drugs, together, work on the inflammation and the over-active immune system (as well as other symptoms - like your mouth ulcers and skin issues).
The Plaquenil is a cumulative drug, which means that it needs to build up in the body before you will see any substantial results. However, once you do see results, it works very well for most people. The Prednisone will help to alleviate many of your symptoms and starts to work much faster than the Plaquenil. Steroid medications, such as Prednisone, work quickly to decrease the swelling, warmth, tenderness, and much of the pain that is associated with inflammation. It reduces the immune system’s response. As I mentioned, Prednisone is the most commonly prescribed steroid for lupus.
I hope that your symptoms start to ease up a bit and that you can continue to work. I with you the very best!
Peace and Blessings
05-16-2013, 06:54 AM
Thank you so much. I am waiting to see my consultant on the 7 June to inform me more of what is going on. I think like may people on here you just need to understand fully what your body is up to. I'm holding to see a councillor as my moods are not great and I'm in a very low place at this moment in time. How long does it take to fully diagnose this type of diease. I have been told that this is what I have but I understand there are many test before this is official. I just want the old me back :-(.
05-16-2013, 09:20 AM
Yes, there are many tests involved in the diagnostic process and it can be quite lengthy. For some, it has taken up to a year (it took a full year for me!). You are lucky, however, that your doctors are treating your symptoms absent a confirmed diagnosis. Many doctors will not do this for their patients!
I am glad to hear that you are going to see someone about your moods. I am a very strong advocate of taking care of your emotional health as diligently as you take care of your physical health. One cannot heal without the other!
Please keep us posted on your next appointment.
Peace and Blessings