Secondary Fibro? Fibro-like Symptoms?
 

Can anyone out there explain to me what terms like that are supposes to mean? I understand that my fibro was caused by the chronic pain I've lived with for five years now. I was diagnosed with the fibro four years ago. So far I have seen twenty-seven doctors and specialists, and they still haven't diagnosed the source of my original pain. But each one of them seems to have a different perspective on fibromyaligia. Some say I have it, others say that it's a secondary condition, so it's not that important. And now I keep hearing that I don't have fibro at all, just "fibro-like reactions to living with pain all the time."

When a Rheumatologist first diagnosed me with fibromyalgia, I researched the condition very thoroughly, and one thing that I read over and over again is that this condition is usually unleashed by some type of physical or mental trauma in the patient's life. Does the fact that the trauma still exists mean that the fibro doesn't? It wouldn't bother me so much except for two reasons. One is that my disability is officially for fibro. And the other is that some of the specialists I go to seem to immediately view me differently when I use the word fibro at all.

Has anyone else had to deal with this problem? I know I can't be the only one who has fibro in conjunction with other illnesses. Have any of you been told that it's not important because something else is worse? I would really love to come up with some effective line to use with these doctors so they would quit making me feel like an idiot.

Thanks A Lot, Everyone,
Idealist

Okay primary Fibromyalgia is when there is a catalyst like a car accident causes the issue. For example, a person gets whiplash and hurts themselves. The pain goes away then a few months later FM starts in. That is primary.
Secondary is when you have something like RA or spinal problems and then FM develops. They co-exist while the primary does not co-exist.
Let me share my experience.
I have primary FM. I have no reason for it, no car accident, no pre-existing condition. It just happened. I do have RA in my family and there are reports out there that if there is a family history for RA, then FM is a possibility as well. Aren't I lucky?:D I do have other health issues but the FM came first.
I hope that helps. I know its confusing.

What i have told is primary fibro is when there is no known cause and secondary fibro is fibro after trauma or something like a autoimmune disease.

although this can be misleading in that fibro has so many symptoms that many autoimmune disorders can be missed or not found till years latter.

I my case the autoimmune disorder was not found till 14 months after the fibro started and the very very rare autoimmune disorder i had was a asymptomatic type (castleman's disease) and was found by accident during a CT scan.

One small study of people with primary fibro for over 15 years found that 95% had been DXed with a autoimmune disorder years after there fibro started.
The doctors that did the study believe that these people had the autoimmune disorder all a long but were asymptomatic or the symptoms masked by the fibro and the autoimmune disorder had been missed.

If this is the case then fibro would be a Secondary Autoimmune Disorder.

As I look back I can see the start of fibro. I was in the hospital a few years ago with kidney stones. They sent me home to pass the stones. I developed a 105 temp. and the stone was star shaped and passing through my ureter. Back to the hospital I went. They did a surgery to basket out the stones. When I woke up the pain was unbearable. I cried and begged for help for four days, I just wanted to die. The Dr. said ,"we are losing you", but we don't Know why. He went in for a second surgery and found the stone had torn my ureter apart. I was all infected inside. I woke up with drains and all kind of stuff all over my body. They worked frantically to elevate my immune system. It took one month in the hospital. As a resolute I got immune deficiency disorder in my eye (herpes). They said it was a staff infection. A wonderful Dr. found it , I almost went blind. I have a permanent stint in my eye. From that point on my immune system has never been right. And now I have Fibro. I know stress is a lot of the pain to, But the stress is not going away for me. I have had fairly good luck with attitudes of Dr.'s, but I demand respect from them. If they bother to ask whats going on in my life, they can see the hell I live in and part of the cause of the fibro. You'll get use to the looks and learn to nip it. The best thing you can do is educate yourself and them. Copy articles you read and take it to them. Talk soon, by.

Oh, Rashelle...
 

What an awful experience you had! To think that something as common as a kidney stone, even after it's found, could lead to the risk of death or even blindness just sounds extraordinarily incompetent on somebody's part, at least to me unless there were extenuating circumstances.

I'm so sorry you had to go through so much pain and misery, and then be left with medical problems that might last a lifetime, just because of something like that. I do hope that you are much better now, and continue to improve as time goes by. Good luck and my best wishes to you!

Rashelle makes a good point!
 

Idealist;

Rashelle makes a good point. You need to continue to educate yourself and continue that education until you are a fibro expert. When I was diagnosed, I was sent to a pain management team. (I also have Idiopathic Peripheral Neuropathy.) One of the docs there told me to get Dr. Devin Starlanyl's book, "The Fibromyalgia Advocate". He told me right up front that some docs still don't recognize fibro as a disease, that these doctors feel that fibro patients have many symptoms that could be attributed to other medical conditions. They also are not comfortable with fibro because there is not a definite test, like a blood or urine test, that tells them a patient has fibro. This is probably the reason why you get funny looks from some of the doctors you have seen. My neurologist is one of these doctors and we had a rather heated discussion about it. I need to read up on where things are headed with fibro because I was told we are getting close to a cure. Now doesn't that beat all - we are close to a cure for a medical condition that doesn't exist! :eek: HA!

Good Luck!
Nancy-H

Thanks
 

I for bring this up. And thanks to everybody for explaining it so well. Sue

Yes, thanks guys for all your wisdom and help. I consider myself fairly well educated about FMS as a condition, but the reason why I am concerned is that mine is not the major problem with me. I have another, undiagnosed condition that causes most of my problems. But since it hasn't been classified yet, my disability is based on my fibro, so it worries me some when the docs start telling me that I don't really have it, even though it was diagnosed in me by a Rheumatologist.

Listen to the Rheumy.....he would know best.

Wendy is right
 

Listen to your rheumy and as long as his paperwork is done properly along with any and all other docs you see, you should be ok.

nh