think i might have Lupus

[chris1]

for as long as i can remember ive been tired...no matter how much i rest all i want to do is sleep. whn i was about 16 i started having crippling migraines started suffering with depression and developed IBS. im now 23...im constantly tired (which as you can probably imagine causes a lot of problems at work and at home), i still get crippling migraines and now have developed joint pain too.

ive had various mixed prognoses from my doctors such as hormone imbalances, dietry problems (these wre both used to explain the migraines...not that changing anything has helped). and theyve put my joint pain down to arthritis...it only appears in my family in later age and not in the knees only in the hands. i literally cant carry a heavy bag of rubbish down three flights of stairs to the bins and find the cold weather really hurts.

i was sat on the bus the other day and saw an advert for lupus (which i hadnt heard of before) and being a biology student was interested in what it was...only when ive read through the list of some of the symptoms thet some things have rang bells. do you think its an idea to go to my doctors with? how did you get diagnosed?

[Joandublin]

Hi Chris:)

Welcome to the Forum. Im sorry about all your problems but unfortunately it does sound like a very common scenario. Not many GP's are aware of some of the signs of systemic Lupus so its normally not something that they check for. Having said that, you have presented with a range of symptoms and seemingly no proper diagnosis. You say they have put your pain down to arthritis. Who has? Your doctor? If so, are they saying you have arthritis or are they guessing? It just seems very bad medical care from where Im standing:(

Lupus can be hard to diagnosed. Its known as the Great Imitator and there are many other conditions which could explain your symptoms. However you certainly do need further investigation. Being so tired and in so much pain is not normal for any 23 year old so you need to start by believing that and gritting yourself for perhaps a bit of a 'battle'.

I would suggest that you write down clearly all your symptoms, keeping a track on them from here on. Make an appointment with your doctor and bring along your list. Its not advisable to 'self diagnose' and most doctors take umbrage if you go in and suggest you have some disease or other so you need to be careful in how you handle the appointment. Tell your GP that you have been looking up your symptoms and you are concerned that there may be a connection between them and that there might be something 'autoimmune' going on and you would like if he could run some blood tests. You should ask for your thyroid function to be tested as under-active thyroid causes extreme fatigue and cold sensitivity. Its also very easily treatable by the way. Heres a useful link to explain the symptoms, etc
http://www.netdoctor.co.uk/diseases/facts/hypothyroidism.htm
Also ask for your B12 levels to be checked. Here is another link explaining B12 deficiency.

http://www.nlm.nih.gov/medlineplus/ency/article/000574.htm

Also ask your GP to run an Anti Nuclear Antibody Test (ANA), an FBC or CBC (Full blood count or complete blood count). Here is another link which helps to explain what these tests (and others) are for:

http://www.uklupus.co.uk/tests.html

Whatever is wrong, its time to put the jigsaw together and to see if all these things are related. It may not, of course, be Lupus, but whatever it is it needs investigating. You have a right to appropriate health care and you can be your own best advocate, so take a deep breath and push forward. We will help you all we can as you seek answers for what is going on.

Finally, here is a link to the diagnostic criteria for Lupus and also some other common symptoms. You might find it useful.
http://www.arc.org.uk/about_arth/med_reports/series3/pp/6332/6332.htm

If you have any further questions please post them.

Take care for now
Luv n stuff
Joan:rose:

[chris1]

ive had tests on my thyroid (usually about 4 a year) which dont come back with anything.

my doctor has guessed that its arthritis...and i had to go to them to tell them i had IBS cos they didnt diagnose that!

thank you for the help

[chris1]

how detailed should my notes be?

[Joandublin]

Hi Chris:)

I have two sets of notes. Firstly at the start of all this process I wrote down a history of my symptoms, tests, procedures, etc chronologically. I had to delve back about three years so Im sure I forgot some of them:) Keep them simple but clear. I know you are just querying Lupus as the moment and you will be discussing all this with your GP first. The likelihood is that your primary doc will run certain blood tests and depending on these results it will then be determined whether you need a referral to a rheumatologist. Its most important to have your notes for this appointment as they will take a history from you as well as asking about current symptoms.

The second set of ongoing notes I keep are what I call my Symptoms Diary. If something is bothering me some day (e.g. if I have any joint swelling or mouth ulcers, etc) I simply keep a note of that. A few days before my rheumy appointment I then go back over this diary and pull out what have been the main problems (if any) since my last appointment, how frequent they were, and if they were painful I will rank the pain level on a scale from 1-10. I also keep a track of whether I have had to attend my GP for any issues as well and if I was put on anti-biotics or other meds. My notes for my rheumy are written like this:

Main concerns at the moment (this might include new symptoms or ongoing problematic ones - write the most worrying ones first)
Other issues for the record (these would be usually minor things that dont really concern me too much but I like them to have a record in case it might be something important for them. It might also include any GP visits and outcomes in between my rheumy visits)
Questions to ask (these would usually be related to the first bit about main concerns or they could be related to meds I am on for example)
Current list of medications (I always write these down as they have changed so much over time and I need to make sure I dont come away and either forget my prescription or get the wrong one!)

I concentrate mostly on the questions and try and ensure that they are all answered before I leave. I never go over one page of typing by the way! I bring two copies and leave one for my file (even though they always try and give it back to me:lol: ) I insist on them keeping it!

Hope this helps
Luv n stuff
Joan:rose:

[chris1]

thanks for the help. ive got a note book together so will use that to keep my records.

should i take any info ive found with me (like your links etc)?

[Joandublin]

Hi again Chris:)

To be very honest it really depends on your relationship with your GP. Some doctors get very irked if they think their patients have been researching their own illnesses. Others are much more open minded and realise that patients actually 'do have a brain' and can look things up for themselves:)

In my own case I had an 'okayish' relationship with my GP and it was me who started to join the dots together at home one day doing online research. I was in the middle of an almighty flare (I hadnt a clue what a flare was - or Lupus even- at that stage) and I wasnt able to walk. My research led me to the 'conclusion' that I might have Rheumatoid Arthritis. I dont by the way!;) Anyway to cut a long story short, I phoned my GP and told him that I was looking up the net and I was having a 'eureka' moment and was concerned that I might have RA. He told me to bring in a print out of the link and when he went through it, the penny started dropping for him as well. The rest is history. It took almost a year before confirmation of SLE after that.

I know that not all doctors are the same. If I were you I would take along the print outs that you find most useful or most resemble your symptoms but would hold off showing them if you feel it would antagonise your doc. The important thing here is not to self diagnose - but to make sure that your doc is carrying out the right tests to find out what is going on. There are many, many conditions that have similar symptoms to Lupus and only the proper testing can uncover the story.

Take care and best of luck
Joan:rose:

[chris1]

thanks again. what i might to is take every 'symptom' singulaly and then look at other options (including the ones weve already covered) and get the tests done to cover as much as possible. (atm it seems that the only blood tests they ever do are for anemia and thyroid!)

thank you for your help

[pinkpiggy]

Hi to everyone, i'm new to the forum so please be patient with me!!
I have had years of sudden onset of urticaria which starts on my feet and travels up my body.For the past 5 years I have had hair loss, not chunks but loose hair all day everyday, no bald patches though. I now have had ulcers in my mouth one which is very very painful on the side of my tongue and has been for the past 2 months. also have constant ear pain and pain in glands, now seeing oral surgeon in december. I have now have sores/scabs in my nostril and occasionally get severe stinging watery eyes. I get abdo pain although Ive been admitted to hospital with it they put it down to being non specific. last but not least have had frequent very loose bowels for months.I agonize about seeing my GP only to be fobbed off. been terrified I have oral cancer, is lupus possible?
does anyone experience anything like this

pinkpiggyx:)