Fibromyalgia Support Group

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.

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!

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

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

Julzy

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

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!