If Fibromyalgia is Real, Why is There Debate In The Medical Community?

The Diagnosis that Shames People!

Fibromyalgia is a diagnosis that does not sit well with alot of people, especially the people that have it. In October of 2006, I had a 7 1/2 hour surgery to replace the bone in the cervical area of my spine. The surgey was more complicated than originally thought and although my neurosurgeon is renowned as one of the best in the country, even he was surprised at how damaged my neck was. I recovered well and in 3 months was back to my old self, able to move my head, and even able to walk without pain.

In March of 2007, I went to the oral surgeon. I asked him to splint my neck because of the recent surgery, but he said it was unnecessary. I had 3 wisdom teeth removed and within days, began to experience not just the old, familiar neck pain, but new symptoms: shoulder and arm pain, back pain that wouldn't stop, just pain everywhere and I was always tired. I was a mess! My reclaimed life was slipping away again and I didn't know why. The neurosurgeon gave me cortisone injections, but they didn't help. An MRI was done and the surgery looked okay. But the symptoms got worse. My regular doctor started me on a pain regimen and I was sent to the pain clinic. Narcotics were prescribed to treat the symptoms, but still no answer.

I knew that I had arthritis of the spine, but could arthritis pain be that bad? I didn't know. My primary physician sent me to a rheumatologist. After an hour of poking and prodding, he said, "You have fibromyalgia." He sent me home with tons of information and told me NOT to go on the internet to do research. He wanted to walk me through this disease himself and I guess he didn't want me buying into alot of the quick cures that are all over the net.

I got home and immediately went online. Because I have been employed in the health care field my whole life, I had some pre-disposed opinions of fibromyalgia. I thought, like many others, that fibromyalgia was not real because it cannot be documented on any labs or X-rays. But I also knew myself. The pain was real. I was not a nut (at least in this area of my life) or a hypochondriac. This reminded me of way back when chronic migraines were not accepted as a legitimate medical condition. Years ago, people who said they had migraines were "drug seekers" or depressed housewives. Yes, that was the prevailing opinion, and up until the time I had my first migraine, I agreed. But something happens when you experience the very thing you refuse to accept. The reason that some in the medical community refuse to accept fibromyalgia as a legitimate disease is the same reason I didn't accept it. It doesn't show up in traditional lab tests, X-rays or blood work. But, there is now evidence that will change the minds of medical professionals who must see everything in black and white. People with fibromyalgia have MRI's that are distinctly different than people without this disease. Finally, there is proof in black and white! This is a new discovery and will help, once and for all, to establish the legitimacy of this disabling illness! It may also open the doors to effective treatments and a cure!

Thank God for my rheumatologist! If you have fibromyalgia, you must have a rheumatologist! They are the most knowledgable practioners in this field. Even though my primary care physician refuses to accept fibromyalgia as a legitimate diagnosis, my rheumatologist is there for me. We have tried many different medications and even though the results have not been great so far, he always has hope and now I do, too. I have learned how to accept this awful disease and know that I still have a life; it is just a different life. I don't tell everyone that I have fibromyalgia. It is not their business. My family and friends know my limitations and accept them. I have modified my life and know that this disease is not curable right now. Someday there will be a cure. Right now, for most people, it can be managed. I don't buy into any of the "quick and miraculous" cures that I hear about. These may work for some and that is wonderful, but I just follow my own instincts and my doctor's advice. We have not discussed the new discovery with MRI's, but soon my primary care physician and I will be having this discussion about fibromyalgia. I imagine that now, because she can see the results in black and white, her opinion will have changed!

According to my rheumatologist, one third of his practice are patients who have fibromyalgia. It ranges from mild to completely disabling (where I am now). He tells me that most rheumatologists have the same percentage of fibromyalgia patients.

Probably the most important advice I can give to other people with fibromyalgia is to watch out for depression. Anyone with a chronic illness knows about depression. Make sure that you still laugh about the same stupid things that you have always laughed about. Think funny! Laughing always keeps me grounded. My kids are always quite willing to make fun of me and that makes me laugh. They make sure that I know how unimportant fibromyalgia pain is in the scheme of things. It is hard to laugh when you are unable to walk through the grocery store without limping occasionally or walking with your head down because you can't lift it up due to the pain in your neck, but try to laugh anyway! It is so much better than crying!

The National Fibromyalgia Foundation is the best resource I have found. The information they provide is thorough. They have answers to many of the questions that I have had and they have referral information that can help fibromyalgia patients connect with the right medical professionals. Fibromyalgia pain relief is primary. The National Fibromyagia Foundation will keep you up to date and current on new treatments and when there is a cure, I am sure they will be among the first to know.

 

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Comments 3 comments

Ingenira profile image

Ingenira 6 years ago

Great hub and good info ! Thanks for sharing.


UrsulaRose 5 years ago

WOW! The Hub-Title aroused my curiosity and i'm so glad that I checked it out.

Great information on such a mis-understood illness!


Jillian Barclay profile image

Jillian Barclay 5 years ago from California, USA Author

It is misunderstood and I understand why some in the medical profession doubt the legitimacy of the illness-if you can't see it on lab work, they think it doesn't exist-but they are the uninformed. Glad you took the time to read! Thank you!

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