How quickly did your health deteriorate after diagnosis?

I have been thru so much since being diagnosed a year ago . At that time i thought it wasnt hoing to be a big deal because of how the rhrumy positoned it. Now im like, omg, whats going to happen next???!

[Slowmo]

Oh dear, I bet you're going to be sick of hearing this but everyone's illness is different, I recall wanting to scream at the consultant every time they said, it's like "how longs' a piece of string"? But everyone's lupus is different. For me, I deteriorated within a year of being diagnosed and within two years had given up work. But please please don't be influenced by this, i've met lots of sufferers in my lupus group in my area who work either full or part time and are able to make the most of their life and do their best.

It sounds from reading your posts recently that you're going through a bad patch and maybe you're just not stable on the right meds yet? Hopefully this won't last and you will feel better soon. I think though that there are always going to be times that are better or worse than others, keep your chin up, I hope things improve for you soon.

Take care

[Gillyg]

I agree with slowmo. Everyone is different and you will have good time but also when you think you are going backwards. I think you are not yet on the meds that maybe have settle you down. It took a long time for me to be given the right ones and sometimes it's who your Rheumy is. On your bad times don't try and be superwoman ask for help, we all need help. Talk to people and find out as much as you can. Good luck. Lots of hugs xx

[Purpletop]

Depends what you mean. Generally, by the time we make it to the rheumatologist, the disease is already up in arms. As it takes a while to bring that back into line, you might feel as if the health is deteriorating while the disease tries to progress and the meds struggle to stop it. Add to that the multitude of side effects from the meds themselves and no wonder you think "what next".

[MargaretGail]

I have held down a stressfull very demanding full time job since my diagnosis 7 years ago and have had only one long term sick leave in that time which was 3 months just after my diagnosis.. I now have not worked since Christmas and cannot see when I will return- quite likely not so like the earlier comments we are all different in how the condition developes. What is really important is that you take good care of your self and listen to your body and don't do what I did and battle on.

[sezzie]

Hi singlemumloopy,

I'm exactly the same as you. Got diagnosed just over a year ago and I truly believed at that time that lupus would have to fit in with me not me fitting in with lupus, oh boy how wrong was I. Like you since diagnosis my health has gone from bad to worse and I rarely get good days and when I do I'm too scared to do things as I'm fearful of the consequences and how long it will take me to recover. I agree with what everyone else is saying that we've not yet reached that "perfect tweaking of our meds" but on the other hand the thought of the other meds scare the hell out of me. I'm sorry I haven't been much help but at the moment I'm in your boat so to speak. Hang in there, be strong and we will get there eventually. X

[Lupylass]

When I was first diagnosed, within the first 18 months I received one diagnosis after another after another.

I felt rubbish and wondered if it would ever end.

But then the meds kicked in and I was well for a couple of years.

I flared last year due to that sunny weather we had (despite wearing factor 50 every day) and the Rheumatologists adjusted my medication. A few tweaks later and I'm doing ok again. I'll never be back to the old me, but life is good.

Don't give up hope that you may feel well in future. Your doctors will be striving for that goal. I hope you find it x

[kazp]

I was only 9 and at school when I was diagnosed and spent 9 months in hospital, that was 30 years ago and GPS, Docs, Meds and tests have improved so so much.

Your body is fighting with itself and Lupus affect every one of us in different ways, id say you are in a 'flare' when your body is really having a good ole 'scrap' with itself.

You will find your way to live with it, I try to accept it as part of me and me as part of it and listen to what my body is saying.

Hope you feel better soon

[Elle-26]

Hi singlemumloopy

It's just been less than a year for me, and Im still having different symptoms. Ive just been diagnosed recently with Sicca and Fibromyalgia ... Im now suffering with my muscles seizing up (thoracic) it affects my arms legs and I get pins and needles and sometimes they go dead ... I suffered with my legs collapsing last year (that was all to do with me being Photosensitive, which i didnt know at the time, caused a Lupus flare thus being diagnosed)However Its different for everyone, we are all unique xXx

My neighbour's niece has Lupus but she has no problems, thus I get judged by her well being and not how it affects me. I lost all my hair barr a few patches by me ears, lost my eyebrows and eyelashes too. I also have a droopy eyelid (GP thought Id had a stroke) but thank God its just an attack on the muscle around the area. Its going to be a long summer for me, Im dreading it Last summer accelerated the condition, nausea, migraine, high temperatures, low temperatures, eyes hurt in the light, scarring caused by Lupus lesions, IBS flared its ugly head... and finally legs collapsed at work. I ended up giving up my job as the fatigue,pain and muscle spasms were too much, let alone restless leg syndrome and insomnia ...

I still dont understand this battle. I told the Rheuma I just want to go back a year when I was normal, health fit and active with my hair intact, a career ahead of me that I loved and struggled for .... sadly I dont know what to expect ... Ive also been diagnosed with Arthritis, Spondylosis, nerve encroachment, bakers cysts which developed when I pushed myself back to work in September ... Your so right in saying OMGoodness whats going to happen next?? the answer is .... unknown .... I just live day to day now, I have had only a few good days, but Ive realised when you wake up and feel its a good day, dont over do it!! as I paid for it the next day.

Im glad you have asked this question, as we are all different in our symptoms and pains, but even those who have it very mild could one day wake up and feel like we do .... we can only then help them by sharing our own experiences -x-

The humourous side is when I came home with loads of Medication and thought .... Ive never seen so many tablets, gels, creams, drops and Ive never wee'd so much for tests or had my arm punctured so much either (blood tests) ... -x-

[Natura]

I have just been diagnosed, and was told by my primary care that he believed people can stay at the low end of lupus if that is what they started at, but I feel like I am getting worse. I think he was trying to make me feel less scared. As I am reading all these posts, I am starting to get really worried. I have not seen a rheumatologist yet, and not on meds. I hope for the best for everyone with this disease....