View Full Version : hello im new and frustrated
12-07-2006, 03:25 AM
I am new to the forum! Im 24 and live in northern ireland i was diagnosed with juvenille rheumatoid arthritis when I was 4 and I have had it ever since. For the last couple of years I have been in and out of my doctors constantly. I know something is wrong and I am sick of not being taken seriously. I am at university and every other year I have had to take a year out due to severe fatigue. Getting through every day at the moment is difficult as I have fatigue so bad. Ive also had boughts of insomnia, pains at my sids and at my kidneys. I have arthritis in my knees but i am now getting pain in my wrists. Ive had protein in my urine and something indicating an auto immune problem in my bloods.
In the last four months Ive had 2 urinary infections, tonsillitis and I have constant flu like symtoms. The other day I saw a doctor who actually said it could be lupus.
Dont get me wrong its not that I have the desire to have lupus but I just want a diagnosis. I know my friends think Im being silly but I know my body and I know when something isnt right!
Does anybody have any advice on what I should do? Or has anyone had a test done that helped prove they had lupus?
12-07-2006, 08:46 AM
As you probably know from living with it for so long, JRA is an autoimmune disease like lupus - meaning that the body's immune system has turned against itself. So some of the tests used to diagnose lupus may also be positive because of your JRA. This may make it more complicated to determine if your symptoms are the onset of a different disease, or the worsening of your JRA. Depending on what type of medications you are taking for your JRA, this could also affect the results of your lab work. So it's really important for you to find a doctor who specializes in treating arthritis and rheumatic diseases. Since you're in Northern Ireland, I assume you are on the National Health Service. If you already have a specialist or consultant treating your JRA, you might ask this doctor about doing a workup to rule out other autoimmune diseases. Explain how the symptoms you are having are different from what you've had before with the JRA and how they are impacting your life. The doctor who had mentioned lupus as a possibilty might be more open to doing a complete workup, so he might be the one to approach.
Part of the problem with autoimmune diseases is that the underlying defect in the immune system means you can develop more than one illness. So it isn't unusual for someone with RA to also have lupus or some form of myositis (diseases that attack the muscles), or a related disease like fibromyalgia or chronic fatigue syndrome. Sorting out the different possibilities can be complex because there are more than 100 different types of arthritis and 80 different autoimmune diseases. And because lupus can look like a dozen or more other disorders, and every patient may have different symptoms, there is no one test that will definitely diagnose lupus. Doctors are working on ways to improve the diagnostic process, but it isn't like hepatatis or a viral illness where a blood test says yes, you have this disease, or no, you don't.
Many of the symptoms you're describing certainly sound like lupus, and lupus most often strikes women of child-bearing age. So your doctors need to look at the pattern of your symptoms, and any abnormalities in your lab results. Getting doctors to take you seriously is a problem in any country, it seems. There are several members on this forum from the U.K. and Canada, so they will probably have some tips for you on dealing with the National Health service to get the best possible care.
There are some good websites for information about lupus in the UK - you might be able to locate a support group physically in your area to meet people with lupus. Any chronic illness can be isolating, and that's especially hard when you are in your teens and twenties, and all your friends are out doing things. Any of these websites will have helpful and reliable information. And I know the UK members of this forum will be happy to help you however they can.
There is also a North Ireland lupus group but I don't think they have a website. You can contact this group at
North Ireland Lupus Group
10 Downview Road, Greenisland, Carrickfergus, BT38 8RX Co. Antrim, Northern Ireland.
Phone: 028-9086-6606; Fax: 028-9086-0784
Hope this helps!
12-07-2006, 10:15 AM
Thank you for your detailed reply! I went to the doctor today and got some bloods done so hopefully this will help. The doctor I saw today had to look up lupus in a book to see what tests to do! I dodnt think it was that rare! I think next time I will go back to the other doctor who actually suggested lupus. She used to work in rheumatology so that may help. I have not seen a rheumatologist in years adn Ive been waiting for an appointment for six months so hopefully I will be soon! I will also check out the websites and yes fortunately Im on th NHS.
Thank you for your help!
12-07-2006, 11:15 AM
Caroline: I am sorry to hear of your increasing symptoms and hope you get some answers and relief soon. I think that MaryCain answered many of your questions about the possibility of Lupus so I just wanted to say welcome and let you know that there are many of us here who can provide you with support. Like MaryCain said many of us here including myself have more than one autoimmune disease and it is difficult even for the rheumatologists sometime to sort out what is causing what because of the symptom similarities.
Reading through your post I didn't get the feeling that you have been followed through the years with your JRA by a rheumatologist. If you haven't it would be really important that you get a new referral from your primary care physician. I know many people who have been diagnosed with JRA as children who were in remission for years and simply didn't get continued monitoring for it.
I live in Canada and know that with any National Health Service country things can take a little longer so patience may be needed. In the mean time it sounds you are doing all the right things getting your primary physician at least to do some more tests. Remember though that many of the + results you get could be simply a flaring of your RA or indicative of another illness like SLE. You can help yourself by making sure you are eating a healthy diet, excercising (moderate) getting enough rest and trying to modify the stress in your life the best you can.
Sending you positive thoughts and healing energy today. Take care of you and keep posting so we can all get to know you better.
12-09-2006, 12:57 AM
thank you for your kind words! i got more blood tests done on thursday so hopefully that will shed some light! i do eat quite healthy but I am the most stressed person ever! Im sure that isnt helping things lol! Yeah Ive heard when people have JRA they do tend to get forgotten about I cant even remember my last visit to rheumatology. My doctor did a referal letter for me in july and i still havn heard anything! So my doctor is going to chase it up as she says im a priority case...I hope I get seen soon!
12-14-2006, 11:01 AM
I've changed doctor's quite a bit, the Internists just don't know what to look for when it comes to Lupus. I actually now call into my doctor and tell them the tests I want done. I get a call back from the nurses asking why these tests and I tell them they need to look at my chart and see the amount of medications I'm on and that it's been a year since I was last tested for my liver, kidneys and ANA. They then call me back and o.k. it. I get so angry that my doctor knows I have Lupus but doesn't even take the time to study it or go to conferences on it. Even I go to the Stanford University Conference each year to see what's new (or not). It's very frustrating. I'm stilll a huge fan of acupuncture/herbs, but I blend western w/Eastern meds.