This post is geared toward those with a Fibromyalgia diagnosis, but might be a good read and please share this information as I feel it could help people find answers and a path to a normal life.
I know this post is going to offend. Ok maybe REALLY offend. But with the recent great article posted by Envita, I think this topic needs some further dwelling and consideration. But readers, I am blogging with all the good intentions as I want nothing more than you all to get your lives back. Many of you are completely debilitated, and your lives have been destroyed.
I am hoping that you can all read this with an open mind.
This one really hits home to me since I was misdiagnosed with Fibromyalgia and CFS at the age of 21. I was an overachiever and had all the “trigger points”, IBS, and my blood work didn’t give any revelations so I got slapped with the FMS diagnosis. I had little improvement in the next few years, other than a bit more energy by cutting gluten from my diet.
By the age of 25, in September 2012, I found myself at a Lyme Literate Doctors office as I could no longer feel my left leg. And then came my real diagnoses and my journey began.
I write this for those with Fibro in hopes that you will consider seeing a Lyme Literate Doctor. It could save your life.
Please read my story. Start from the beginning. My first post was on June 22nd. I guarantee that my story will sound very similar to yours. You have been there. You will understand.
Across the United States, there is an estimated 5 million cases of Fibromyalgia. That is a lot! It generally effects women from the ages of 20-50 but no one is exempt from having Fibro as men, and those older and much younger can also be diagnosed with FMS as well.
The Mayo Clinic describes Fibromyalgia as a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that this condition amplifies painful sensations by affecting the way your brain processes pain signals.
Like it or not, I am trying to help those who are NOT getting better. I only wish everyone to feel well. Fibromyalgia is term that describes an array of symptoms… it is technically not a diagnosis. Many doctors slap this on you when they cannot find the root of the problem. Many prescriptions have probably been prescribed to you. A variety of antidepressants: Cymbalta, Savella, Prozac, Anticonvulsants: Lyrica, Neurontin, Painkillers: Percocets, Vicodin, and other medications such as Ativan, Klonopin, and Xanax have been prescribed. Some have found relief with these scripts, but truth be told many are used to treat Lyme symptoms as well. With Lyme, your kill the bastards, treat the symptoms, keep your immune system in check. So these are fairly common tools. You are also told to exercise, sleep, and eat well. Ok. Easier said than done. Especially when you feel like dog doo. I HAVE BEEN THERE!
Although it has been said there is “no known cause” for Fibromyalgia, researchers are now beginning to see some things in blood work that can be linked to having Fibromyalgia. Inflammatory markers, hormone production, HPA levels, Vitamin D levels…. Once again… things that commonly also pop up with Lyme disease.
In my personal opinion, after this diagnosis that I had accepted even though it never felt right, and progressively got worse, even by doing “all the right things”, I do not believe Fibromyalgia exists. There, I said it. Hate me or not. I say this not as if your pain and suffering is not real, because it is indeed VERY REAL, but I am saying this because there is a legitimate cause for how you are feeling. And it could be Lyme.
I will share with you some important facts about Lyme disease:
– Lyme disease is also called “the great imitator”. It is called the great imitator because Lyme mimics so many other diseases and illnesses, including Fibromyalgia and Chronic Fatigue Syndrome (As I am sure you all are aware, when you get a FMS diagnoses you generally also get a CFS diagnosis as well). A picture to illustrate some of the most common illnesses and diseases Lyme mimics:
– Fewer than 50% of people with Lyme disease get the classic “bulls-eye rash”. Only 25-30% of people with Lyme recall being bit by a tick.
– Lyme is not just a “New England thing”. It has been reported in every single state in the U.S, and every continent, except Antarctica.
– If you are reading this thinking, “well, I never had a positive Lyme test!”.. think again. The test that is generally given is called an ELISA test. It produces false negatives SEVENTY PERCENT of the time. The test that I highly recommend is called a Western Blot and the best company I have found is Igenex. Their website is http://www.igenex.com if you would like further information about the test as well as another test they provide called a PCR. Although the Western Blot is more reliable, the tests are still flawed and a clinical diagnosis can be made by a LLMD (Lyme Literate Medical Doctor).
If you get the test from a doctor that is not Lyme literate, get your hands on a copy. The CDC holds a different set of standards than ILADS (International Lyme and Associated Diseases) do. The CDC requires 5 bands to be positive, while if you have bands, you are positive. Everyone just doesn’t go walking around with the Borrelia Burgdorferi bacteria in their body. It is like saying you are “a little pregnant”. Once again, good doctor = clinical diagnosis.
A chart of some of the symptoms of Lyme:
A chart of some of the symptoms of Fibro:
Look familiar? As you can see there is an extremely high overlap in symptoms.
Dr. Daniel C. Dartini has found 70% of patients with Fibromyalgia to have a viral or bacterial cause for their illness. Being sick, your immune system depresses, causing a worsening of symptoms. Many things can also trigger a worsening of symptoms or “flares” such as stress. He found many to have food allergies and sensitivities, and has treated many with a short course of antibiotics such as doxycycline (Lyme first line of defense) to find that many had improvements.
I am not a doctor. I am just sharing information to those who have been sick for years and never see improvements. I truly believe that there is a real cause for your suffering. Lyme disease. A diagnoses that can finally give you the answers you deserve and with the right treatment plan, you CAN get to a symptom free level of remission.