think i have lupus not fm

[hayley65]

what do i do tell the rhemy doc that i do think i have lupus? ive read a lot of this condition and i do fit into it dont no what to do help please

[Hidden]

Hi Hayley. I seem to say this to a lot of people here - but please, don't wish lupus upon yourself. The symptoms of lupus do mimic symptoms of many other (less destructive) conditions, so of course, there is a possibility that your fibro is lupus. But don't wish it upon yourself. This is a hideous, destructive life wrecker of a disease, poorly understood by the medical profession and little known among the wider public in the UK.

Even if you get a diagnosis of lupus, there is no guarantee of getting a treatment that will control it - and almost all the drugs used have unpleasant and often life threatening side effects.

Why am I saying this? Well, I WISH with all my heart I'd never had a diagnosis of lupus, or tried the various side effects of prednisolone, MTX, Cyclophosphamide et al. and the idea that someone would go looking for lupus is pretty upsetting to me. So maybe this response to your question is all about me:I wish I hadn't got lupus and I really hope you don't have it either.

Good luck.

[roobarb]

Hi Hayley

I have both fm & lupus, which is quite common. Are you currently under the care of a rheumatologist? I think you should approach your doctor, whether it be your GP or rheumy, carefully about this. Outline your symptoms &, very importantly, how they are effecting your quality of life. I imagine that you must be feeling pretty poorly at the moment? Take some one with you who can back you up & support you.

Perhaps say that you feel you need to rule out the possibility of lupus, because you can see that you are displaying many of the symptoms. As I am sure you have realised by reading the posts on here, diagnosis of lupus is very difficult. Mine took 9 years, even though I was under the care of a rheumatologist for most of that time.

Although having a diagnosis can seem to validate all the problems you are obviously having, it is by no means an answer, as Maggie has said. The treatments available are harsh & don't work for everyone. But I imagine that right now you need any ray of hope that you can feel even a little bit better.

My other tip would be to contact your local lupus UK group. You don't have to be a member or diagnosed. They will give you support & advice, & may know local doctors or rheumys who will be more helpful for you than those you already have.

My heart goes out to you Hayley. I fully endorse Maggie's words, don't seek this terrible disease. But I imagine if that you have got to the point of seeking for answers yourself, you are not getting them from your healthcare professionals. I know how it feels to be undiagnosed, & getting more & more ill.

Very best wishes, & please let us know how you get on. X

[mstr]

Hi Hayley,

I too hope you don't have lupus though I understand your quest to find out what is wrong with you. Believe me you will get to the bottom of what is wrong with you it just takes time (average two years) I now understand why it does take two years as it is a difficult condition to diagnose and does mimic others. I would suggest taking pics of joints, any rashes you have on body etc as well as keeping a diary of symptoms as this will help any rheumatologist, as well as having certain blood tests that are positive indicators too. This way you will get diagnosed if you do have lupus. There are other conditions that are similar and so it does take time. There are also overlap conditions to so it is not always as simple as one would think. I would also say though to also trust your own instincts too as this gave me the impetus to keep going even though at times I even doubted myself. Take Care x

[hayley65]

thanks for advice x

[hayley65]

thanks for all your kind words i im under the rhemy in the hospital but have moved address so my new doctor is going to refer me back also does blood test determine if you have lupus or not? xx

[Zforsyth]

I have lupus SLE , fibromyalgia, and chronic fatigue syndrome/ME as well as depression and anxiety . Lupus was diagnosed six years ago but the rest was diagnosed last year. I had been off work sick alot before we found out it was lupus and that was only diagnosed because the rheumatologist did a extra blood test which showed positive ANA blood test. I too hope you don't have lupus as even with the diagnosis I am still searching for answers . i have not been able to work for nearly sox years . its not easy living with any of the conditions but the one thing I know is true for all of them (which I think most on here will agree with) is listen to your body , don't over do things, have a good diet and make sure you have a good support network

[roobarb]

Hi again hayley, Lupus is diagnosed by a combination of blood tests & symptoms. It's usually also a case of watch & wait on the doctors part, to see how your symptoms develop. There is no one test that will confirm you have lupus, because it is a very complex disease which effects every one differently.

There is lots of good info on the process of diagnosis on the Lupus UK website, St Thomas' lupus trust site, & The Lupus Foundation of America. If you are changing consultant anyway, how about asking for one who has a special interest in lupus. There is a list of these on the St Thomas' site, or you could ask for recommendations of specialist in your area on here.

Best wishes. X