Do really have Lupus?: Hi, newbie here, in bed... - LUPUS UK

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Do really have Lupus?

Lupdaloop profile image
7 Replies

Hi, newbie here, in bed , depressed, isolated,can't decide what to do , haven't got a current gp,I know I have all the symptoms of autoimmune or lupus or both , I'm 40 , female, first symptoms arose in 2001, been suffering over the years with the symptoms one after the other and been diagnosed with various things and the complimentary psychiatrist , having read through the symptoms myself ,I know what I have is most likely one of these I just don't know what I should , as I said I haven't got a gp at the moment it's a tricky one but in between if that makes sense, and so if there does happen to be a sympathetic ear out there I would be grateful for a bit of help, many thanks.

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Lupdaloop
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7 Replies

Hi Ludaloop.

I think you know the answer to this question yourself. You're not well and it may or may not be lupus or another autoimmune disease. It may be unrelated. But nothing is going to happen unless you are proactive about things. The diagnostic fairy can't magically find you in your bed and wave her clever wand and know the answers - you have to seek them out.

You're depressed; you think no one believes you; you may even feel like a hypochondriac - but you need to get yourself a GP and make a list of all the things that are wrong, so that you can communicate clearly with him or her.

It may not be lupus (I really hope it isn't, for your sake) or one of the other autoimmune diseases (ditto). Your symptoms may be unrelated to one another. But you are as important as anyone else in the world and whatever is wrong you need treatment.

Go get it!

Lupdaloop profile image
Lupdaloop

Thank you maggies , I have made a list , that's how I came to be on this site, following the links from one illness to the others , I have, debilitating joint problems, sores in my nose,ears, raynauds in fingers and tongue,skin sores in summer,dizzy, eyes blurry, I could go on,thanks for being out there .

Silvermyst profile image
Silvermyst

Hi there and welcome to the site. I really hope you find your time here beneficial, and that as a consequence you don't feel so alone.

What Maggie said above is exactly what I would say. You will never get any diagnosis (Lupus - which I hope it isn't, or otherwise) unless you first make the appointment to see a GP. Your GP is your first port of call, they will then refer you to see a consultant who will make a diagnosis and get you on the appropriate treatment asap.

It all starts with you, take control and make it happen :)

Purpletop profile image
Purpletop

If you're here, it means you already know that you now need to do something about it. Try not to focus on what specific thing you've got, just make a list of your symptoms and the dates when they occurred, whether they react to painkillers, etc and take that list to a GP (not sure why you haven't got one but you can also go to a private one if you don't trust your local one). Mention that you're concerned about autoimmune disease and ask him to order the relevant tests to put your mind at rest. He won't refer you immediately, only if your blood tests results are abnormal. But at least you've started the process. Be strong and take control!

mstr profile image
mstr

Hi there and welcome to the site. Congratulations at taking the first step in reaching out to us on the site.....it's a big one:) They say the journey of a thousand miles start with a single step and you have made that. .....Now next is to trust your own judjment and follow the advice above. We would all be interested in hearing how you get on following your GP appointment too. Wishing you all the best and sending lots of strength your way too x

Lupdaloop profile image
Lupdaloop

Can I just say huge thanks to everyone that replied to me , I am going to make an appointment to see my Gp on Monday, my husband and I watched a very useful video and are 99.9% certain that I have auto immune/ lupus, thanks for all your encouragement and can I just say, the feeling of knowing someone's out there understanding what you are going through is priceless, in my hour of need you were there to help, thank you from the bottom of my heart. I have a list to take to my Gp , promise to keep you updated with the outcome . Thank you :-)

roobarb profile image
roobarb

Hi Lupdaloop

I feel for you so much, because I was undiagnosed for many years. I was fobbed off by doctors & getting sicker & sicker, but didn't want to go back & face get another rebuffal. It was a locum who finally realised that something wasn't right.

Perhaps you could politely ask the GP for a referral to a rheumatologist? You could explain that you feel so many of your symptoms are lupus related, & you would like to rule this out as a possible cause for your illness. Do you have any one in your family with auto-immune conditions like rhuematoid arthritis? This might encourage them to see a possible link.

Will your hubbie be able to go with you to the appointment & support you? Sometimes this can make a big difference. It's sad but true, but when you are sick sometimes you need someone strong to stick up for you.

All the very best with your GP visit. Please let us know how you get on. X

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