The Lupus Forum banner

1 - 4 of 4 Posts

·
Registered
Joined
·
1 Posts
Discussion Starter #1
I really don't like to self-diagnose but I thought I'd make a post here as I have a few questions about the symptoms I'm having. I had a look online (fatal in the avoiding-self-diagnosis process, I know) and some of my symptoms do seem to correspond with lupus. Like I say though, I don't know if I do have it or not. It could be anything, really. But I'm scared and confused about what I'm experiencing right now and it'd be so helpful if I could get some feedback.

I went to the doctors the other day because the lymph nodes in my groin had been swollen for months. I would've gone sooner but I didn't even realise they were my lymph nodes. Because I'm very thin I thought it was just muscles or part of my anatomy or something- I can often feel lumps in my body. But I happened to stumble across something online about lymph nodes and realised that this is what it was and that it really wasn't normal for them to be swollen for months at a time. The doctor examined me and said that the lymph nodes in my neck were also swollen. He weighed me and it looks like I've lost quite a bit of weight as well. My liver and spleen aren't swollen. I've been booked in for a blood test and am just going to have to wait on the results of that.

Other very vague symptoms that I have are fatigue (I'm ALWAYS tired) and pain/weakness/stiffness in my hands, wrists, fingers and neck. I'm not sure whether its more muscle pain than joint pain or a combination of both. Perhaps even bone pain. I really don't know. This pain thing seems to come and go though.

I also have symptoms that I'm even sure are even related to lupus- bloating/swelling in my lower abdomen, intermittent/fleeting pain in my lower abdomen (particularly on one side) and diarrhea. Although I've also gone through periods of constipation. I went to my doctor about all that a few months ago and he diagnosed me with IBS.

The thing that really caught my attention about lupus though is the sun-sensitivity thing. For a couple of years now I have had that pain in my wrists and hands (sometimes extremely intense) when it gets to the summer. I hadn't even noticed the link before. Last year wasn't so bad (it was a rubbish summer though) but the year before that it was very intense. And since the weather's been good so far this year, I've noticed the pain/weakness/stiffness starting up again. Is it possible to have lupus and not even know about it for that length of time? If I've had a 'flare up' in the past, could I have had it without knowing about it?

Obviously, I don't know what's going on with my body and I'm just going to have to wait on the blood test. I'm pretty scared that the swollen lymph nodes combined with the other symtoms means it could be cancer. But I'm just trying to get as much info as I can about all the possibilities.

I feel like such an idiot always going to my doctor with these vague symptoms. I feel like a complete drain on NHS resources. When I go to the doctors I tend to focus in on a few symptoms that are bothering me the most because I feel silly coming out with this long list of seemingly unrelated symptoms. So my other question is, how do you get across what you've been experiencing symptoms-wise when it is so vague, varied, confusing and possibly unrelated?

Sorry the post is so long! :eek:
 

·
Registered
Joined
·
1,399 Posts
Welcome Yemaya,
Lupus is a very complex thing to diagnose, it can take years for many of us to get to the point, yes you have SLE.
First thing is you must write down all your symptoms, even if you think them trivial, take pics of your rashes and take them with you when you go back to the DR.
And ask for a referal to see a Rhuemie who knows about lupus it is a must, as not all Rhuemies know about it.
We can all relate to you cos alot of us are in the same postion as you, we don't know if we have SLE either.
I myself am still waiting for a specialist appt, and will not get my other test results until i've seen the specialist, which could still be 6 months or more.
It can be very upsetting & frustrating at times, and stress can make us all feel very unwell at times.
There are very knowledgable people on here, so ask many questions if it helps,
Try not to stress about it, and rest as much as you can.
Hugs Sandra.
 

·
Administrator
Joined
·
10,181 Posts
Welcome to the forum Yemaya,

It is very important for you to let your doctor know all your symptoms no matter how vague. The one you leave out might be the difference between swaying a diagnosis one way or the other. The easiest way to remember everything is to keep a list and give it to your doctor at your next appointment.

I have always been sun sensitive and never attributed it to Lupus. I just figured it was due to my fair skin. Even when I was diagnosed I didn't put two and two together. It wasn't until I was telling my doctor about a sailing experience that I found out about the sun connection. Avoiding the sun has definitely helped me. Since you have noticed an increase in symptoms you should probably avoid the sun as much as possible.

Good luck with your upcoming tests.

Take care,
Lazylegs
 

·
Registered
Joined
·
67 Posts
Hey Yemaya,

I haven't been diagnosed with Lupus--but along the way I have been dx with Celiac Disease (another autoimmune disease). That means I'm allergic to gluten--and so have to avoid all foods containing it. Most of my stomach symptoms (pain, constipation, bloating, diarrhea etc) have cleared up. It also helped ease the pains in my joints and my migraines. A lot of people with Celiac are misdiagnosed with IBS. It might be worth checking into. (I also know that Celiac can mimic many Lupus symptoms--migraines, fatigue, rashes, joint pain, weight loss, etc. Unfortunately for me, most of my other symptoms are still there and still causing concern.

I just thought I'd mention it and see if it could help.

I hope you get some answers soon. :calm:
 
1 - 4 of 4 Posts
Top