Guess my original post wasn't effective. I am new at this and not sure how much info to put out there.

From what I have read, others with fibro have had normal blood test results prior to their diagnosis. I have heard everything from Lupus, Fibromyaglia, Scleroderma, as well as connective tissue disease.
Confused since doctor feels my physical exams don't match blood test results (so it must be fibro).

Have tried meds - Etodalac (pain), Flexeril (muscle relaxant), Trazodene, Elavil, Soma, Paxil. Most have made symptoms worse. Pain meds don't have much effect.

I have tried vitamin supp, drinking more water, changing my diet, and exercise (which is a double edge sword)
My muscles have become so tight (no matter how much stretching) I am currently seeing massage therapist.

Was hoping by posting my test results (ENA panel) that someone else may have had a similar situation.
Originally, Histone, RNP, and Smith antibodys were positive. Doctor suspected drug induced lupus from doxicycline (acne drug). Have been off drug for over a year. Recent blood work changed showing Centromere antibody was positive.

I have heard/read that depression and stress can induce fibro. I have had plenty of stress in my life and have suffered from PMDD but I am just not sure if I can except that it is fibro just because my physical exams don't match my test results.

Any advise would be appreciated.

What the doctors call the pressure point test is a joke. I went to two different Rhuemies in Chicago. Both are nationally known for their books and are constantly listed in magazines as two of the best doctors in Illinois. Both gave me the pressure pont test. Basically just pressed on certain spots. One said I had Fibro and the other said I didn't. How I hope someday they will come up with a blood test for this nasty disease

The rheumy that I went do did not even check for pressure points. I told him I had them. He did checked my joints and said they were OK and based on my history said I had Fibro. My PCP had already said that.

Thanks for your responses.
Yes, I think the pressure point test is point less. I have always had aches and pains. l have injuries from past sports and other activites. So I have pain at most of the pressure points no matter what. To me that test means nothing.
The blood test are the ones that worry me the most but the doctor doesn't seem to be effected.

Question for RSTARRE.
I am also from the Chicagoland area. I am looking for a new Rhem doctor. Was looking at Loyola.
Would it be to much to ask where these doctors you reference where from?
Do you recommend any particular place?

Gunner, I am no expert, but have been paddling around in the Lupus pool for a while. From what I understand (and I have double-checked this in a lupus textbook) the anti Smith antibody is extremely specific to Lupus.

So I guess I'm wondering why you are getting all this other 'stuff' and not getting a lupus-specific medication such as an anti-malarial? From reading the The Lupus Book by Daniel Wallace 95% patients with drug-induced Lupus do have antihistone (although so do 40% of 'normal' lupus patients). He says, though, that patients with drug-induced Lupus do NOT have the other antibodies (such as anti-Smith) apart from (but not always) ANA.

According to him, your doctor needs to differentiate DILE (drug-induced lupus) from bacterial or viral infections, polymyalgia rheumatica, SLE, rheumatoid arthritis, or Dressler's syndrome (that last one is after a heart attack, so no need to worry about that !!!)

It looks to me as though your doctor hasn't made that differentiation????
regards
Georgie

Georgie-

I have been looking at the lupus posts and see alot of familiar stuff.

Doctor is leaning toward fibro since my physical exams/symptoms are not similar to the "diseases" that could be indicated in my blood tests. After looking at the lupus posts this concerns me since many have stated that their symptoms haven't been text book.

My original tests ruled out rhuemi arthritis. Each blood test (ENA - is that different from ANA) has come back alittle different from the others. The doc hasn't tested further - the same tests each visit. He has had a wait and see approach for almost a year now.

This has made me somewhat frustrated and confused. He has given me meds that are mostly helpful to fibro patients - nothing for lupus. I am starting to feel like its all in my head. I don't understand how the tests say one thing but the doc doesn't feel that its important to go further. Thats why I am looking for a new rhuemi.

Also, if I hear anyone else say "Stress and Depression trigger your symptoms and you need to try different antidepressant to find the right one that will work for you" I will scream!! My whole world has been turned upside down by this. I am coping the best I can and I think you have a right to be depressed when you feel like *@#*! everyday. (Sorry just needed to vent)

Obviously I am just a patient with a book, but from what I'm reading your doctor has the answer staring him in the face based on your test results. Maybe you should get a copy of that book and have a look? (He also says you can differentiate between fibro and lupus with a bone scan - but that's for patients who don't have the very specific antibodies that you do).

And I hear you on the "depression" thing. My doctor was so convinced I had depression she thought THAT was causing the symptoms, and didn't see the need for anything other than anti-inflammatories by the truck load. I KNEW it wasn't depression - I finally told her if I had to carry on feeling the way I was I would rather be dead. That only confirmed her depression theory LOL but it did at least get me to a (very good) rheumatologist who found part of the answer in ten minutes.

I hope you can find a rheumatologist who has more experience in this area - IMO waiting and seeing when you feel that bad and have those results shouldn't be the approach.

best wishes
Georgie

Gunner, if I wasn't clear enough in my first post I'll try again - what Dr Wallace says in his book is that the presence of anti Smith rules out a diagnosis of drug-induced Lupus. At the same time of course it rules in very specifically the possibility of some type of Lupus.

If your doctor diagnosed DILE when in fact it wasn't, he probably will have stopped looking in that direction at all, expecting that has all resolved itself after you stopped taking the acne drug.............

Does that make a wee bit more sense?

Georgie -

Thanks for clarifying and the support.
I have just gone on the advise of the doc and did a little bit of research on the net. Boy, have I been blind.
Finding these boards have really helped and opened my eyes. I know now that I need to be more aggressive in finding answers.
I have ordered a copy of my medical records so I can research the test results better.
I have seen alot of posts quoting Dr Wallace. It must be a good book. As soon as the snow stops I am going out to get it.

Something else from Dr Wallace :) - an educated patient has a far better outcome in the management of their condition.

It's been several years but I'm still hopping mad at (my now ex) doctor for the years of labelling me depressed when in fact I was really sick - I was going through hell and it affected everything - health, relationships, work etc.

Now I probably go a bit too far in the opposite direction - but I make sure I always know enough to at least understand that the docs are doing the right tests, and interpreting them correctly. And I have a lovely new doctor who doesn't mind that a bit.

Good luck!!!!

Hi gunner welcome to the board and welcome georgie I haven't seen your posts before either.

Georgie is right gunner the Dr. Wallace book is excellent. I have read and re-read many parts of it looking for answers and ideas to trigger questions to ask my rhuemie. It is possible for you to have both lupus and fibro they are crossover diseases. It is also very difficult to get treated properly for both. You are your own best advocate, educate yourself and always remember the doctor works for you and if they don't do a good job they can be fired and you can find a better doc.

Just a few suggestions, always get copies of any bloodwork and tests you have done, it is your right and keep a file to refer too. That way you don't have to try to remember. Write all your questions down for the doc and take them with you and write his answers while you are sitting there if you need to. One more thing be sure your thyroid is ok by getting a complete bloodwork on that not just tsh but Ft3 and 4. My ANA count was high and a few other positives that looked like lupus but suddenly some bloodwork came out negative. It was theorized that some of my positive bloodwork was because of my messed up thyroid. Just some suggestions to help you get started. Good Luck and let us know how you are doing. Oh and georgie is right about the anti smith test, I have always read if it is positive that is pretty conclusive.

Glojer

Thanks for the welcome glojer, I have certainly seen you 'around' and have often learnt from your posts. There are some things about gunner's position that have really concerned me (not least that according to Dr Wallace she seems to have been misdiagnosed), because I have been in a similar position and I still don't know how I got through it (but I am very glad I did). For background, my condition was first thyroid, and now probable lupus - but the labels were first depression, and then fibromyalgia.

So I am absolutely passionate about helping others who get indiscriminately labelled. I understand fibro is a very real thing, but as in my case there are situations where it is assigned as a 'don't know' kind of diagnosis and that is a real crime in my opinion.

I am in the category of people who know what clinical depression is, having experienced it in the past. So I had a level of confidence when my doctor kept saying 'depression' that she was wrong. Yes, I was depressed - who wouldn't be feeling like that - but I knew it wasn't the cause.

My doctor kept trying to medicate me for depression - my past experience made me wholeheartedly reject that (don't misunderstand, if you have depression there is nothing better than you can do). It's just that I knew that wasn't the root problem and I didn't want to muddy the waters with side effects. With the benefit of hindsight, the kind of antidepressent she was recommending would have made my thyroid MUCH worse!!!!!

I had never experienced that level of illness before and was in a huge state of ignorance/denial. I tried to soldier through the fact that it took me an hour to get dressed, that I was completely exhausted to the point where I couldn't be bothered to shop for food, that I didn't feel interested in my job any more, the fact that my memory was shot....... I didn't put any of those things down to illness - I just blamed myself for being lazy.

In addition to what I didn't acknowledge, I hid from my doctor a lot of the other symptoms because it would have just added fuel to her 'depression' fire - lack of sleep, inability to concentrate.....

It is only just recently that I have come to understand that my then gp was referring me to specialists (only because I insisted) with letters that said I was depressed and refusing medication and there was nothing wrong with me other than that. How helpful is that????

It's just so awful, as is the case with you gunner, that the time in your life when you are least able to get your head around all this and have the energy to do something about it - is the time when you most need to!

But, a little bit of attitude and a second opinion can get you much further along the path to finding a solution, and I really urge you gunner to do just that.

best regards
Georgie

georgie your story is sad but so true for many fibro sufferers. I was very fortunate that the doc I had at the time, I had for 15 yrs or more and knew me well and he diagnosed with fibro immediately, however he would not help me with my thyroid. He has sinced moved on and my now Dr. Kate has taken his place, and again I am so fortunate she is wonderful. I am also fortunate that none of my docs has ever suggested or questioned me about depression. I am one of the lucky ones who has never had a problem with that. One time I tried to switch rhuemys to get one closer to home. When she heard I had fibro the first thing she tried to do was give me anti-depressants and went so far as to give me a bag full of samples and a book about the one she wanted to prescribe. This was at my second visit and she hadn't addressed the problem I went to see her about....my joint pain and the things relating to my connective tissue disease. Needless to say I did not make another appt. and the samples went in the trash. I am not opposed to anti D's if they are what you need to make you feel better, I understand they do work to help the pain in some people. Like you,I knew this was not it for me, reading and educating yourself and using the good old healthboards for others personal experience I think has helped me.

I hope your story inspires others to keep going until they find a doc that will help them find a protocol of whatever pills and supplements and exercise etc. that will help to heal them.

Glojer

There's a new book coming out in March by Jerome Groopman, MD, entitled How Doctors Think, where he cites evidence showing that the average doc takes only 28 sec. to pick a dx, before even examining the patient, and often even before talking to the patient, just by looking at the patient -- a first impression.

One of the main aggravations of having even "true" diagnoses of things like depression & fibro, is that such a history predisposes docs to attribute every other symptom to those diagnoses. It really puts one at a disadvantage.. IME, even having a family HISTORY of depression has had docs offering me ADs -- before I had fibro, and without any symptoms of depression. Apparently just the family history & symptoms that stumped the doc were enough to clinch the deal. When I challenged the doc by reciting a laundry list of depression symptoms, each followed by "not applicable," he backed down to, 'well sometimes these meds help even if it's not true depression & even tho we don't know why or how they help.' Yah, but I know WHO they help, and it's not me! :blob_fire Rant over.

Georgie, those letters from your GP to the specialists are THE END. or they should be, IMO -- of your relationship w/the GP.

Best wishes to all.

Elmhar, that sounds like a very interesting book - I'll look out for it.

Sorry for the rant - I guess I need to try harder to achieve a zen-like calm about all this!!!

And yes, she is now very much my EX-doctor, and I hope for her sake she is never crossing the same road I am driving down :D

Gunner, thinking further about this - are you familiar with the 11 criteria for diagnosis of Lupus? If you are not, you can find them at the top of the Lupus board here. You need to have at least four of those (at any time in your life, not all at the same time) for a Lupus diagnosis. I'm guessing that is what is what is holding your rheumatologist away from a diagnosis.

Your blood results are a very big tick in the box, no question. But you may be in the same position I am - in my case I have some blood results and some very impressive lupisy rashes. Not enough for a diagnosis, but my rheumatologist is paying attention.

In your case, if fibro hasn't been proven, and if medications haven't been efffective, and there is that lupus thing lurking around, one option is to go for a diagnosis of undifferentiated mixed connective tissue disorder (which from my reading I think you qualify for).

My rheumatologist (this may vary from doc to doc) is prepared to diagnose that if I ever have joint or muscle pain that can't be attributed to my thyroid. On that basis he will prescribe an antimalarial - I am just thinking since you seem to have tried everything else - trying an antimalarial, given your blood test indications, might be a good idea?

Georgie-

Been alittle busy lately and have not had time to surf the boards. I received a copy of my test results and picked up a copy of Dr. Wallace's book. I am somewhat overwhelmed with info right now.

My blood tests (which surprised me) have shown positive for centrimere antibody since Oct 2005 and the titer has varied over the years. The results have also shown positive for other antibodies but have varied on each test as to which one was positive at that time.

As far as the 11 criteria - I know I have at least 2 maybe 3 of them. I don't have the facial rash but I have noticed over the last year that I have had small circular dry patches on my stomach. They itch like crazy and nothing seems to make them disappear. My rheumi has even looked at them - he said it isn't related. Have read in "the book" and seen comments on the lupus posts about similar symptoms.

My symptoms just don't "match" any particular criteria and my rheumi just doesn't go any further. Just wait another 3 month, we'll check the tests again and see if anything changes. The only constant is that I feel like a train has run me over and I am wandering looking for help.

As I have been studying I have been somewhat hopefull at finding an answer but confused at the same time since there are so many variables with these diseases. I have an appointment at Loyola in two weeks and am hoping something positive comes from it. At this point, I can handle whatever "it" is as long as I know what "it" is.

Its so good to have this place.

Gunner good luck at Loyola. Your confusion is normal, I have been in that state of confusion and frustration many times. Let us know what happens.