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05/05/2012 12:28 PM

Shanti33

Shanti33
Posts: 17
New Member

Hi everyone.

I'm not positive I have Fibro. I've had two different doctors tell me that I do, but I wasn't so sure. All I know is I have PAIN. I'm on about 6 vicodin a day and I'm going to have to start tapering because it's just too hard with constipation plus it's not working as well. I've already had to have surgery for absess on my colon, had 6 inches of my colon removed. I do not want to go through that again so not having perfectly functioning colon really scares me. Anyway, since I've had every kind of test imaginable and nothing gets proven to cause pain, I am wondering if it's Fibro. I'll read more here and see experiences you all have.

I have nerve pain and neuropathy. I did have an EMG and it shows I have neuropathy of unknown origin. That's the only thing that has shown up. Anyway, I am glad to meet you all.

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05/05/2012 02:29 PM
MoiraWolf
MoiraWolf  
Posts: 3416
Senior Member

Hi and welcome! There is no definitive test for Fibro. The doctors test for all other things that have symptoms similar to Fibro to rule them out, then you get a diagnosis of Fibro.

Getting a diagnosis of Fibro is very much like going thru a death. You experience Grief, because you're mourning who you used to be (a person without Fibro able to do anything and everything) and have to face who you are now (a person with Fibro, limited in what they can do). Grief has several stages, including denial, anger, depression, grief, acceptance. Sounds like you're in the Denial stage right now. You state they've run all kinds of tests, didn't find anything else, and two different doctors have said it was Fibro.

Nerve pain and neuropathy go hand-in-hand with Fibro. I have peripheral neuropathy of unknown origin too. Irritable Bowel Syndrome also goes along with Fibro. Many of us here have it. As does Chronic Fatigue Syndrome, reproductive tract disorders such as fibroid tumors, dry skin, etc. There's a whole laundry list of co-morbid conditions.

It's hard to face a diagnosis of a chronic pain condition that has no cure and only limited treatment. But that's why we're here. You are allowed to vent, rant, laugh, cry, love and just about anything else here. We "get it" because we all "have it."

Welcome to the group!


05/05/2012 03:06 PM
mabri
mabri  
Posts: 4769
VIP Member

Shanti33,

If you have been told by 2 different drs that you have fibro, it is very possible that you do. I'm not sure what criteria they used, but if you have a lot of the symptoms, and they have ruled out everything that may mimic fibro...then you probably do. I will add a link to a good list of symptoms and you can look them over and see if you believe that you fit the symptoms.

I know that a diagnosis of fibromyalgia is a horrible thing to be told that you have. A lot of us have went directly into denial. It is more comforting to believe that there has to be a mistake or that it just has to be something else. I'm not saying that this is what is happening to you, but it does happen.

Once you know in your heart that this is what it is, then the grieving process will start. I'm not trying to upset you, or tell you that it is hopeless, because it's not. This can be manageable. You will need to find the correct mixture of meds, and take care of yourself. That means getting plenty of rest, and not overdoing things to throw you into a flare. No, it doesn't happen overnight, but there is hope. Know that we are here for you to help you, and support you all the way. You will get through this. Let us know what we can do or help you with. HUGS


05/05/2012 03:23 PM
Julzy
Julzy  
Posts: 503
Member

Shanti - you sound a lot like me not long ago. Be very careful. I got soo constipated I was almost taken to the emergency room. I'm not kidding. It wasn't pretty, and I don't have colon issues!!

Not a nice way to start a friendship, but suddenly very worried abou t you!

Julzy


05/05/2012 03:41 PM
Shanti33
Posts: 17
New Member

Wow, you all hit it all right on the head! It seems that I went through all those stages and I'm back at denial. I think it's because I was hoping it would be something that there is a cure for. Every time I'd get test results back I would be so disappointed to hear that it's "nothing". Because there is no definitive tests like you said, it's hard to feel validated when you are in so much pain. I could tell someone I have multiple sclerosis and I feel like I'd get more understanding. Is there a stigma like that with Fibro, or is it just me? I'm so glad for your responses. It is hard!

05/05/2012 04:11 PM
mabri
mabri  
Posts: 4769
VIP Member

Shanti,

Yes, there is a stigma with fibro. It's invisible, and since there are no test results that you can refer to we are judged. They say we are lazy, faking, drug seekers, attention seekers, and whiners..amongst other things. I can understand that it is so hard to be validated with this disease. That's why this group is so important to me, cuz regardless what I have to say, these wonderful people understand and don't judge. You will find friends here, and it will really make a difference that someone else really understands you. HUGS


05/05/2012 05:35 PM
Shanti33
Posts: 17
New Member

Yes Mabri, I can totally see this now. And I felt such a relief when you all posted these things. I felt like there was understanding. It has been so frustrating because I don't want to look like a slacker and lazy. Or weak and just sensitive to pain. But man, you just can't deny this pain. Not wanting it doesn't make it go away. Believe me, I tried!

05/05/2012 06:44 PM
MoiraWolf
MoiraWolf  
Posts: 3416
Senior Member

Thirty years ago, HIV was called the "gay cancer." Probably because of the Karposi Sarcoma skin lesions that go along with advanced stage HIV. No one understood it. No one knew what it was. When diagnosed, the sufferers were treated like lepers, because no one knew how it spread and didn't want to "catch it."

Now of course, we know what it is, there's treatments for it, even if there is no cure, and we know how it's transmitted and how to protect oneself.

Fibro is much like HIV was in the early days. It's poorly understood, we don't know what triggers it, there's no "cure" for it or really even a set protocol of treatment, just a hodge-podge of drugs that works for some but not for others, and can take years of trial and error to find which ones work for each individual.

One of these days, I'm sure, like HIV, we'll get definitive treatment, and the syndrome won't be treated with such disbelief, incredulity, and outright denial. But like those early HIV victims... we have to hang in there while the medical community, research and drug companies do the required research and developement.

In the meantime... support groups like this one are our lifeline (even HIV sufferers 30 years ago didn't have the internet so we're one up on them). We're family. We may not be related by blood, but we are related by having this syndrome that no one understands, and most don't believe. But we do!


05/06/2012 10:19 AM
Shanti33
Posts: 17
New Member

That's true! I know as well that Multiple Sclerosis was once looked at like Fibromyalgia until they invented MRI and was able to prove the lesions. Even still, people struggle with it at 1 in 10 people with MS don't have lesions. My dad had MS before MRI.
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