[mizpah]

Hi,

For the last couple of years I've been experiencing extreme tiredness I get up in the morning and I'm tired with a headache and in the 2weeks before my period by 1 o'clock I feel overwhelmed with tiredness and weak and need to sit down and go to sleep/rest. About 2 years ago I caught a cold that has never left me for more than a couple of weeks at a time and which is now accompanied by swollen lymph nodes. When I went to the doctors in 2007 they ruled out lymphoma with a biopsie and put it down to infection, and like an idiot (so my mum says) I've lived with them swollen since.

Last month I went to the doctors as the lymph on the back of my neck had got quite large and was really painful, the doctor due to my Nan having lupus has ordered several blood tests... she asked me all the usual questions about rashes, joint ache etc and at that time all I had was knockout tiredness and my swollen glands. But now I literally feel like my body is shutting down on me... My hands and knees hurt, I sleep all day and when I'm not sleeping and trying to be a mum I'm so tired I want to cry, and I've now got this rash across my cheek bones which is really angry looking, bright red and stings and I have had a constant headache/migraine for the past couple of weeks.

My question is (sorry about the rant) does this sound like lupus? and should I go back to the doctors with all this as the blood work isn't due back for another 3weeks? and if I do go back what could they do to help?

Thanks for taking the time to read this

 

[spellbinder]

greetings and salutations :wavesmile:

sorry to hear that you are feeling so bad, no you are not being a drama queen. something is definately going on here.
your symptoms could be possibly lupus or it could be something else as lupus has many faces. its also not a easy diagnosis.
but you seem to be headed in the right direction. i would keep a list of your symptoms and maybe a picture of your rash to take with you to the doctors. write down everything that seems odd to you. this will help when you have a brain fart (hopefully i'm not saying a bad word i mean no offence), or as others call brain fog. we all forget something we need to tell the doctor so writing it down helps alot.
you might want to see if you can get on a cancellation list until your appointment in three weeks.

keep resting and try not to stress too much as this will exsacerbate the situation.

feel better and take care

and ....:welcome:

hugs and kisses

 

[Merle]

Hi Mizpah

Welcome - you'll find lots of great information and advice on this forum.

Your symptoms have much in common with my own - particularly the tiredness, endless swollen glands and non-conclusive gland biopsy in my twenties. As I knew nothing about connective tissue diseases until last year, I only found out what it was going on in December 2008 at the age of 53!!

When you see your GP, be sure to ask for a referral to a Rheumatologist, and preferably one that has an interest in lupus.

Be aware that you can be diagnosed with lupus, even if your ANA test is negative - so don't be put off from being referred just for this reason.

You will find lots of useful material related to diagnosis in the stickies to the various boards on this site, particularly that entitled "symptoms".

Best of luck and take care.

Merle

 

[Lily]

Hi Mizpah,

There's definitely something going on, I'm sorry you feel so unwell. I'm surprised the tests will take 3 weeks, depending on what was run 10 days is usually the outside longest it takes for most bloods to come back.

I agree you should take a photo of your facial rash as it may go and at least that way you have some evidence it was there.

If you are in a lot of pain joint and muscle wise then they would be able to give you anti-inflammatories for now to help ease those symptoms. So I wouldn't tough it out waiting another 3 weeks. Go in now, at least that waY they can see how it is affecting you and give you some form of relief for some of your symptoms.

love
Lily

 

[dixy]

Hello

Dont put up with it. Be pushy get on to your GP PESTER him to get you refered to a Rhumetolgist or Vasculitis clinic.
Sounds very like Lupus:sad: there are so many symptoms. I was dx ulticaria vasculitis.To start with

Take care

 

[x_claire_x]

Hiya. when I first had a load of bloods taken it took 3 weeks for the auto immune tests to come back, and that was privately! It seems to be a bit quicker now but they haven't tested quite as comprehensively again..so far.
You definitely need this all investigating and shouldn't put up with living in this much discomfort without some answers etc, they should be able to get some treatment started which will make you feel better..psychologically as well as physically. The others have given good advice about logging the symptoms with photos and written journal. It can take time for the Drs to find you some answers but trust in your body and keep plodding on...all the best.:lol:
Claire X

 

[Katharine]

Hello Mizpah and welcome

I agree with the others. No, you shouldn't put up with it. There is very clearly something wrong.

Sometimes these things creep up on us rather insidiously and we kind of let them happen. I often found that a quick check back on how I used to be, what I used to be able to do, actually made me realise how much things had changed. It kept me going through years of no answers and eventually got me back to pester the right people and get diagnosed.

I would definitely be pushing for more in depth blood tests (such as ANA and the ENA tests) as the others have mentioned and also a referral to a rheumy - even if those tests are not very conclusive.

Whether it is lupus or not is impossible to say. Lupus and other auto-immune diseases are incredibly hard to diagnose even for the most experienced docs as they mimic so many other diseases and can also have overlaps between them.

bye for now,
Katharine

 

[LolaLola]

Dear Mizpah,
You are not being a Drama Queen. You are clearly unwell. I don't know how good your GP is, but please make sure he knows the extent of your symptoms and how much they are disrupting you.

A big Welcome here, hope you find plenty of support and information here.
x Lola

 

[mizpah]

Thank you for all your encouraging words its been really frustrating feeling like this as nobody seems to get it and if I hear maybe your a little run down one more time i think i may scream

I'm going to take all your great advice and make an appointment at the doctors on Monday, a friend took a pic of my rash today so I'm going to take that and my list/log with me and bug him till he takes me seriously hopefully he won't think I've gone mad lol :wacko:

Thanks again its really appreciated

 

[onetay]

YES, you should at the very least give them a call. It would be better if you got another appointment to see the doctor again as you have new symptoms that are important. They maybe able to give you something for discomfort if there is any. Remember that it is not being a drama queen when it is your health that is in question, right? You know your body better than anyone so you are the one to know if this is new, feels different, or hurts you and they don't know why or can't find it in an exam. I hope you find some answers soon and feel better even sooner.

 

[mizpah]

Thanks again everyone... I got my test results Friday I do have lupus. I feel relived in one sense as I have an answer as to why I feel bad, but I'm so angry, confused and sad :sad:

I consider myself an intellgent person (when I don't have brain fog:ermm: ) and I've read loads and thought about it all but I feel like I know nothing... I just can't get my head around it or even what it is. My mum always says that people fear the unknown and lupus feels like a big unknown and I'm really worried and scared. I've got a little boy and I feel like I need answers and the doctors can't give them to me and just keep saying everyones different, my nan's death certificate says lupus and what if everyones not different and we're the same.

Sorry for writing such a depressing post but I just need to get it out

 

[Katharine]

Hi there,

I'm sorry your feeling so down about this :hug:

I'm just wondering, what test results did you get back and which ones show that you have lupus? Did you see a rheumy?

Now, on to the disease itself. Lupus is a relatively common disease, more common than we might think given the low level of lupus awareness. It does however have many degrees and variations. For MANY people, once treatment has kicked in, they will be able to go back to a normal/near normal lifestyle. You mustn't be afraid of what you read here. You need to bear in mind that those that post here are generally the people looking for answers pre-diagnosis, the newly diagnosed and the rarer more seriously affected.

Most lupus patients are able to lead busy, active lives and don't have the time to come here very often

Medication can make an enormous difference. It may take time to kick in or to be tailored to you as an individual but it really can.

It is very difficult for doctors to give answers as lupus is notorious for being very individual and also very unpredictable.

I would suggest that you learn slowly about your disease but certainly not panic. Give yourself time to take it in (it IS a lot to take in). It's quite natural to read loads and yet still not understand. It is a very difficult disease to understand even for the experts. You can find a lot of general information on the main site linked to this forum and there are also some very reputable hospital sites where you can learn a lot but you don't "need" to do that now; be easy on yourself.

Be careful of outdated information on the internet or any sites whose underlying aim is commercial. It's easy to twist information to your benefit when you want to sell something.

Lastly, remember that we have all gone through similar feelings and really do understand. Diagnosis is a very hard time and you need to expect to have lots of ups and downs. We are, of course, happy to finally be believed but then the sheer enormity of the "unknown" hits us. Don't forget that there are many very knowledgeable people here who can also help with questions that you have.

If you have any other questions don't hesitate to start a new thread with them so that everyone sees it clearly.

sending loads of big hugs :grouphug2:
Katharine

 

[keebler]

(((Mizpah)))

I know that roller coaster ride of emotions all to well. You are relived, scared, angry and grieving.

Waiting for the meds to kick in is one of the hardest things for me to do. :ermm:

I have a brother with lupus too. We are the same in that we are fatigued, pain but then we are totally different in other aspects of our lupus. He still works.(I really don't know how he does it) Don't worry that you will follow the path that your Nan followed. Lupus is different in all of us.

Take care of yourself.
Love,
Lyn

 

[LolaLola]

Hello Mizpah,
I have had Lupus in varying degrees for nearly 30 years, during which time I raised my own children and took in lots of extra ones too. It is upsetting for you I know. It took me many years to get diagnosed but once I was, I learned very quickly and you will too.

Lupus treatment has improved in leaps and bounds over the past few years so it is really not a very fair comparison with what your poor Gran suffered.

Think very seriously about sun protection/sun avoidance, which can be a huge help. Also try to downsize whatever you can. Even simple things like an electric tin opener can make a difference.

As Katherine said, you must ask whatever you want-we are all here for you.
x Lola