There are a few things I would ask you first...

1) what kind(s) of doctor are you seeing?

2) how many times have you had your ana tested? Your ana can change according to flares (at least in lupus). Also, while having a positive (1:160 or higher) ana does not mean you have lupus; the best estimate shows that about 90% of lupus patients do have a positive ana. Thus, a lupus patient with a positive ana will find that their ana results may change when tested at different times.

3) what other tests have they done? To get a diagnosis of lupus, you would need a battery of tests combined with a thorough medical history (symptoms). These tests include c reactive protein, sedrate, double stranded dna, single stranded dna, etc. Also remember, that every single lupus patient can have different test results. Thus, there is no one test for lupus.

4) have you kept a daily diary of your symptoms? This can help you and your doctor.

Okay, this is just a start...
Ladybrannon

Lissen to lady brannon she knows alot about it. The only thing I can add is it is possable to have both , fibromyalgia and lupus. The reason I say that is I was first told I had fibromyalga. Then I saw my rheumatalgist and neroalagist. Both said it was lupas. They forgot to tell me that I also had fibromyalia. It can confuse you. I thought lupas covered fibromyalgia. But I was told I had both.
Good luck sharon

Hi ladybrannon and sharon. Thank you both for your imput. I have seen all kinds of doctors over the past seven years, including rheumatologists, neurologists ect, with liitle more than the fibro diagnosis. New symptoms such as vascular rash have developed recently, and I have had plureisy at least 3 times over the last couple of years. I will try to find a good rheumatologist and try again. My family doc is great, but I think she is not experienced enough with these kind of diseases. Thanks again.
Patty

Here is something you can do for your doctor and his/her nurses...

Contact the nih and get a free copy of the book about lupus for healthcare workers...

It is great!

Just an idea,
ladybrannon

I was also dx'd with fibromyalgia and was told that it "is" a form of lupus. I also have multiple sclerosis and am on copaxone for that. I take a number of meds and get the bloodwork on a regular basis. I'm also on cytoxin once a month. The dr says that the cytoxin is supposed to decrease inflammation and slow down the progression of new lesions (ms). I hope this helps.

Hello it's me sharon,

I was diagnosed with lupus and fibromyalga also. It's hard to tell sometimes what is causing what .Ithought lupus covered fibro. But my doctor told me they are two seperate things. I have found that a lot of people who have lupus also have fibromyalgia. Also i've talked to someone on line who was told she has fibromyalgia only. But after talking to her, I think she might have lupus also. I advised her to ask for more testing. Alot of these horable diseasees have similar symtoms. I just wish they would fine a cure.

Sharon

1) there does seem to be a lot of people who get diagnosed with both.

2) big difference between lupus and fibromyalgia...Lupus can be formally diagnosed with tests(most the time)...I have never seen tests for fibro.

Anyone else?
Ladybrannon
ps- I was having internet issues...Sorry if it posts twice!

Hello......I am new here and have been reading all the post concerning fibro and lupus. My 20 yr old daughter has been having problems for some time now and has been to see her doctor who in turn sent her to a rheumotologist for the fibromyalgia. He has done a number of blood test and xrays and has yet to tell us what is going on. The last three test show that her crp is elevated and that there is evidence that there is an inflammation but they aren't doing anything for her. Her regular doctor did tell her that he believes that she has fibro and every medication they have given her to this point is not working. She also has severe migraine headaches and sometimes has them 2 or 3 times a week and they haven't found anything to help with that. The last time she saw the specialist he gave her vioxx and that doesn't seem to be helping any at all. I don't know what to do for her as she is in constant pain, she has the headaches so often, and she is getting very frustrated. She has been off of work since the last part of june and is really frustrated as she has no income right now and feels guilty that she isn't able to contribute financially to the household. I tell her not to worry about it but she isn't used to not having income and helping. I try to get her to go file for disability and she won't do it as she don't want to be rejected. I am just about at my wits end as to what to do for her or what to expect to get from the doctor to help her.

Thank you for hearing me out......
A concerned mother.......

Welcome!

A couple of things: disability...Most people are denied their first attempt. Tell her that is pretty much standard. There are people to help...Even disability lawyers!

Tell her to keep a diary of everything that is bothersome. Pain? Where is the pain? What type of pain? Stabbing? Aching? What is the severity of the pain (most hospitals and doctor's offices use the 1-10 scale)? Does she have any rashes? What about nausea? Throwing up? Hair loss?
You get the idea...

Once she has a few days down, take it to the doctor. If the vioxx is not working, then it is not working. She needs to tell them that. It is her body and she does know it best.

Also remember that you can change your doctor. I realize that it sometimes is a difficult thing...But collect your medical records and move on if you get no relief.

Have your daughter double check the tests they have run...What were the exact results. Get a copy of those results. If you go to see a rheumatologist, those numbers are very important.

I hope this helps in some small way...Also, tell your daughter to join! She may find it helpful to vent!!! I know I do!

hugs,
ladybrannon

Thank you ladybrannon............

I told her that it is usual to be turned down the first time you apply.

Also she has been keeping a journal of all the medications and aches and pains. Her primary doctor had her doing this and it has been the rhuematologist that has done the last two test on her and has done all of the xrays. They haven't gotten ahold of her with the rest of the results from the last blood test that was done almost a month ago. When she calls to get the results the nurse tells her that they aren't all in and what is in does show that she does have an elevated crp and that she is to continue to take the vioxx until she sees the specialist again even tho she tells her that it isn't working.

It is in writing from her primary doctor that she is on leave from her job and is being treated for fibromyalgia. And I told her that she can take all of that information with her to file for social security. Right now she is really frustrated and it is hard to get her to do anything as she is in so much pain all the time and when she does go anywhere she ends up with a migraine headache that takes days to get rid of.

I do intend to have her to ask for a copy of the results when we do go next monday to see the specialist. I will also get her to get her results and information from the primary doctor so that she can have them for social security purposes. I know when her father was terminal with cancer I had to keep all of his medical records and had to get a lawyer to get his social security for him and it took a little over 2 years to get and I think that is what is bothering her.....Having to depend on mom until she gets something coming in.

Again, thank you for your response.

Hugs,
concerend

I also have fibro and I stay in pain. The doctor said I proverly had lupus but it takes years for it show up in you blood stream.

My pastor at church has lupus and it took them 7 years to diagnose him.
I also have osteo arth. And osteo poros. My bones are gettig real thin and I am 54 years old.

I also have had epsen -barr disease too. I think that playes a part of fibro. My niece has fibro and she had epsen-barr too. I am so tired all the time I have to do one chor at a time.
Hope this helps somehow.

Aches

Couple of questions for you:

is the epstein-barr virus *active*? If so, this is mono and will cause the same type of symptoms as in many autoimmunes, including a positive ana, achy joints, fever, etc.


What tests did the doctor do on you to determine that you *probably* had lupus? What was his reasoning? Because I know of people testing postive on *some* of the lupus tests long before they have any *actual* symptoms...


As for taking 7 years to diagnose, unfortunately that is quite common amongst lupus patients...But because lupus mimics so many other illnesses...Flu, epstein-barr, cmv, aids, lymphoma, anemia...You get the idea.


I do, however, know people with positive lupus tests, but have a negative ana for a while. It did eventually go positive though.

I also know of people who never had a postitive ana.

I would really like to hear more about your story and your tests.


Hope you stop aching!
hugs,
ladybrannon

I have had the following diagnoses:

you have lupus, fibro, both or neither.


What am I supposed to do with that? I am 26 and have not been able to work in 3 years. I am in pain pretty much a daily basis. While filing for disabilty, I was told that no one experiances pain daily. Want to bet. I also swell up horribly . My hands, legs, feet, ankles arms all swell. Does anyone else experiance this?

My legs get so swallon that if I try to squat the pressure feels like a inflated ballon that you try to twist (think of the resistance you get when you try to make balloon animals).


I would really like somone to share what their sympotms are so I can at least feel that I am not alone.

Thank you,
kelly

Hi kelly!

You are not alone. I have pain daily. I'll share with you. What would you like to know?

Hugs,
ladybrannon

thanks so much..... Do you experiance swelling?

Hi kelly!

Yes, I do. At first, it was just in my joints. You know, in my elbow...Here and there, an ankle, a knee, etc.

However, I also have kidney involvement. So, sometimes, my swelling is not joint related at all.

To make it worse, the prednisone makes my feet swell so bad there are days that I can barely walk.

How about you?

I'll be honest; as I have said before, my diagnosis took seven years (19-26). I am now 30. I was diagnosed with a host of things before lupus was even on the radar and some of them were really out there...I mean out there.

What are your primary symptoms?

Hugs,
ladybrannon

Hello I am 20 years old and today I was diagnosed with fibromyalgia and for the longest I felt like there was nothing that I could do about my pain. I didn't know why my whole body hurt the way it did and I didn't know why all the test that I took were coming back normal. I already have high blood pressure, a condition called sacroilitis, and costochondritis. Today I also did some blood work done to see if I do have lupus because I also have many of the symptoms of that as well. My hair is falling out I have some memory loss (which goes hand and hand with fibromyalgia). It is just really hard to be so young and have so many things wrong. I would have just been happier if it were just one but to have several things go wrong all at once hurts. I was active, at 17 I joined the military but I was only in for 1 1/2 because I hurt my back had that not happened then yea I would still be in the army. Its just hard for the longest my body would just hurt so bad and to go to the doctor and they know something is wrong to but not knowing what it is and not having any type of peace because im stressing about hurting. I would just like to know if there is anybody out there that has gone through what im going through now. How are you dealing with all this? How do you find a peaceful spot when all these things are going wrong.

Thank you
scorpio6907

Hey, I'm also new to this.
I'm 19 years old .. and have a lot of medical problems.
I was diagnosed with cancer at age 15, and beat it.
I thought cancer was what made me feel the way I do,
but I still feel this way, years later.
I have been diagnosed with fibro as well.

But I was with my mother at the ER due her having problems,
and the doctor overhead my mother and I speaking of how I feel like I'm dieing .. and how this rash on my face won't go away. Well the doctor came up, and asked me my symptoms.. and said my rash was called a "butterfly" and she believes I have lupus.

One problem, I have no insurance.
And my mother thinks I should go for disability,
as she is. But I think it's pointless, I have had many doctors in my life time, even have been kicked out of school due to missing so many days .. Nobody really believes me when I complain.
Second problem, I'm terrified.

Any advice, help?
Thanks.

Hi everyone,

My symptoms aren't nearly as severe as any of yours, although I probably don't even have lupus. I'm 17, and I've been having joint pain for almost a year. It has caused me to drop out of all sports, and I'm having difficulty playing my flute and even typing because of pain in my hands. My doctor at first thought that it was some sort of arthritis or fibro myalgia. He referred me to a rheumatologist, though, because blood tests revealed elevated ana levels. She asked some questions about symptoms that I thought were completely unrelated to the joint pain. These include a rash on my face (under my mouth, not a butterfly rash -- mine used to be scaly, and I figured it was ecsema because it got a little better with lots of lotion and ointment), Raynaud's phenomenon, and a little tenderness in my lower back. She ordered more blood tests, which still haven't come in. I'm kind of anxious to find out if I have lupus or not, though, so I was wondering if any of you would mind giving your input. Also, when do you think that the blood tests will be in? Will they call and tell me? I have an appointment with the rheumatologist in another 5 weeks, roughly, so they might wait to tell me. Also, I've heard that they cannot just test for lupus, because everyone is so different. Will these tests even diagnose anything for sure, or will they simply be able to rule out the possibility if they're negative?

Thank you for any help you can give!

- Anxious