[alimonkey]

I've been reading a lot of stories of people on this forum, and some other forums, and I guess what I'm coming up with is, I feel a bit of a fake?

I guess I just don't feel like my diagnosis is 'real' yet. I was told I had lupus nearly two weeks ago now. That visit was only my second visit to a rheumatologist. The first was to go through my medical history and take bloods. I'd had two positive ANAs at 1:640 last July and October, taken by a consultant at another hospital before I got my referral. At the time I didn't really have that many symptoms, other than numb hands. There were a couple of other things which I'd just accepted were part of 'me' - red patches that look like sunburn across my face, neck and chest, big 'spots' on my neck and chest which scar. I'd been to the GP many, many times over the years because of fatigue - constant thyroid and anaemia tests, with only anaemia coming back positive occasionally, iron tablets brought it up to the acceptable range, although its always low or borderline for me. Then my GP decided I was depressed - antidepressants helped at times. I've had huge rashes on at least 5 occasions, and was told there were shingles, but on two occasions I had blood tests and swabs which were negative for the virus. I started having real pain in November, and my joints have got significantly worse in the last 4 months. I'm nearly 37 and I feel like I'm 80 sometimes. If I sit too long in one position I literally seize up! But some of these symptoms have been around for 10-12 years - the rheumatologist asked me why my GP kept testing my thyroid - because I complained of fatigue. I still don't know what tests my rheumatologist ran and what the results were.

I guess I just didn't expect to have a diagnosis so soon after my referral. Are my symptoms and results so conclusive that the diagnosis could be made so quickly? Not sure whether I'm in denial or shock or what, but I guess I just don't believe it. I see my GP tomorrow and hopefully get started on medication. It just doesn't feel real to me.

 

[Katharine]

Hi Ali,

I have been ill for around ten years. The last two really spiraled and got pretty bad but I am lucky, I don't have major organ involvement and when I finally got diagnosed just over two years ago I was put under good care with meds straight away. Things have calmed down a good deal. My bloods are pretty good now and my main remaining worries are the unbelievable fatigue, joint, tendon, muscle pain and some neuro symptoms (to cut a long story short :lol.

And yes, after so many years wondering what was wrong and the last two being much worse and even frightening at times, still not being able to work and my docs telling me several times over that I am absolutely not imagining it... it still feels unreal.

There is actually a psychs name for it - impostor syndrome - and nope, not limited to illness. I have felt it when teaching, when translating, when training horses... like the feeling someone will catch you out for being a fraud. And yes, totally unfounded.

I think that you'll find that many here can understand your feeling. In my case, I think there's a good dose of denial in there. Probably that helps me get through a lot of things (even if I do kind of go bump when the disease reminds me it's there).

Katharine

 

[Merle]

Hi Ali-m

I relate entirely with that "somebody pinch me" feeling. I was highly successful in the working world and am now "disabled" by a chronic illness! This is not someone I recognize.

I catch myself saying to myself - "Why do I hurt there?" or "Why do I only want to sleep" and then I remember - "Oh yes, I've got lupus". Its almost as though I am testing the diagnosis each day.

Take care

Merle

 

[Mrs M]

Hi Ali

I'm not diagnosed yet but just started meds a couple of weeks ago after 2 years of illness! I just wanted to say Hi and I hope the appointment for your meds goes well and that you get some relief.

I can kinda understand it been a little strange to be told you have lupus even though you hve been ill for a long time. When I was given the pred and plaq a couple of weeks ago I came home and I felt really rather odd ( nothing new there then LOL!!) It was as though my feeling ill and not myself for such a long time was finally being acknowledge and that yes I am unwell.

Hope I've made sense?

Hope everything goes well for you and take good care

Mrs M x

 

[keebler]

I was diagnosed Nov,2004. Some days it feels like I am in a bad dream and when I wake up I won't have lupus. It is a roller coaster ride of emotions.

Love,
Lyn

 

[Fairy]

Eight years later I'm still in denial :lol: It's how I've always coped with 'bad things', and it works well for me. I've got a distinct lack of treatment options now, and if I focussed on that all the time I'd probably never leave the house... As it is, I've got a job and I carry on.

You'll find a coping strategy that works for you - it just takes a while for it all to sink in.

Take care :hehe:

 

[onetay]

Ali,
If you think about it, it has been 10-12 years of symptoms that just got worse. So even though you were told a couple weeks ago they have been searching for the answer that long. It often takes getting worse over the years to get someone to say you have lupus. Even then it can be worse than pulling teeth for some of us. I am happy that it was pretty quick for you with the rhuemy. You could share your doctor with those that are having trouble just getting someone to say they are sick lol.

It is pretty new to you the word and having a name for what is wrong with you so it is possible that you are in shock and that it has not had time to sink in. If you need to talk there are wonderful people on this site that are willing to share a lot of information with you. You had a good reaction when you were told. When the rhuemy told me I simply said ok now give me the pills for it and that will be that. Yes I had no idea what it was and at first did not care just wanted it gone and to me again. You know 19 hour days an 5 hours of sleep. Give yourself some time for it all to take hold and in the meantime you could educate yourself at good sites. I only say that cause once I did a search I was in tears for hours. I did not know it was different for everyone.

We will be here once it does hit you, and it will. I do hope that you are feeling well and doing well also.

 

[bugsy]

Hi Ali :wavey:

I was told i had lupus 5 years ago, but its 8 years since i started having major problems (unknown rash for about 12 years).

I am also still in denial, if i am explaining to someone what is wrong i know in my head that its me i am talking about but it still doesn't feel real. I feel like i am talking about someone else.

I am having counselling at the mo to try and help with the depression but also to help me come to terms with what i am going thru and to help me accept what is wrong with me.

Its only been a few weeks for you so i am not surprised that you don't feel that any of it is real, as some of the others have said it can take years and some times you may never fully feel its real and i think that is partly because we don't want it to be real.

I hope things start to improve when you start your meds, good luck :luck:

Take care :hug: Jo :hug:

 

[alimonkey]

Okay so now I'm looking at my little packet of Plaquenil and wondering if this makes it real. Does it validate me because I have something tangable in front of me? In some ways. I had a really long chat to a colleague this afternoon who was wanting to know why I was so unwell, what would happen to me. For the first time I was able to put words together in sentences to describe what was wrong with me and what lupus is. I'm amazed at how few people actually know about it, other than people who watch House. Someone asked me you can 'catch' it, and if not, how do you get it?

Starting to come to terms with stuff I think, and starting to develop a sense of humour about it, which is I guess some sort of acceptance and more like 'old me'. I'm amazed at just how low I'd been as I've just felt so unwell.

 

[MamaLaiste]

I was told I had lupus 12-ish years ago. Every single time I go to a new doctor, I have the fear that they are going to say that I don't have it and that I am just making everything up. And yes, there's been a couple of times that I was told that very thing.... but it hasn't been often and the number of doctors that have said I *DO* have lupus far out number the ones that say not.

I've had to family members die from this stupid disease, 2 others that have it, and myself with a huge range of symptoms that all require their own little treatments. I hate it, and sure wish I didn't have it, but I do so I go on with life the best I can.

I have an appointment on June 9th with the rheumy clinic at Vanderbilt in Nashville and am rather anxious about it. My first trip to this clinic so again, I wonder if they are going to say I don't have lupus or what.