I’m so irritated. Today I was surfing YouTube looking at videos from Fibromyalgia sufferers and, sadly, came across a few that were promising cures (some in “just a few weeks!”) and giving false hope to real people who really suffer from this debilitating disease. The worst, I think, is the “doctor” (I don’t know if he’s really licensed or not) who offers a discount for patients to come to his clinic to get “diagnosed and treated”. The second worse is the lady that claims that FM is just a build up of toxins in the body that can be “purged”. Research into the “purging” lead me to find that the technique—or Protocol—for the purging was ongoing and that if the patient were to stop then the FM would suddenly reappear. I’m pretty sure that’s not a cure by any means.
The thing that these folks offering “the cure” for Fibromyalgia forget is that it’s not all about the pain. Yes, the pain is a significant part of the disease and it is what generally gets the patient into the doctor initially. The pain makes it difficult to get around and be physical and can cause severe and chronic depression ( which makes the pain worse which feed the depression, which …). However, to “cure” FM you’d have to go beyond the pain, because most of us who suffer with it have more than just the pain. None of those offering up the miracle of an end to our suffering seem to take that into consideration. Sadly, though, it’s the pain that makes people throw their money away on these types of scams cures.
The pain is horrible. Don’t get me wrong about that. I hate the pain. But I think it would be more endurable if there weren’t the other things that go along with it. I don’t know if that’s true, of course, because we can’t find that out (as we’re all a list of symptoms, unfortunately) but I think for me it would be better. The pain, though, is not from toxins, studies have shown that it’s a central nervous system condition—that are brains are short circuiting and sending out pain signals constantly. It’s something in our brains.
One woman, whom I won’t name, claims that she’s suffered from FM since birth, but she’s been cured by this “protocol”. She explains her pain symptoms. She explains the tender points. She explains her “good days and bad days”. On her good days she goes surfing and bikes for miles. Since she’s started this protocol she’s miraculously better. Just take this medication, drastically alter your diet and if you’re especially strong you too will overcome FM and live a “normal” life.
When she explained her suffering (due to the “toxin buildup”) she never once mentioned sensitivity to sounds, smells, chemicals, lights and/or touch. I’ve spoken with a number of different folks who have FM and we all are highly sensitive to something like that. These things trigger different reactions in us and the sensitivities are part of the disease.
She doesn’t mention any digestive issues. Many of us have IBS in some form or another. We have to be careful of what we eat normally especially because of that. Other people have bladder issues on top of that. It’s humiliating, but common with FM.
She doesn’t mention a very big issue: Fibro fog (cognitive dysfunction). We struggle with short-term memory loss, unable to find the proper words, forgetting important dates and, sometimes, forgetting where we live. This is an incredibly frustrating aspect of the disease because we feel like we are, quite literally, losing our minds. For me, it began before I started any kind of medication and slightly improved when I started my high doses of Vitamin D. I still suffer from it. I still trip over words in a conversation or stop writing so I can find that one word—sometimes hours later. I still forget how to do routine tasks, things that should be ingrained in my brain and automatic. And if you research via Google you’ll see that I’m not the only one who deals with this. And yet, this person who is cured, doesn’t mention it. Why? How can you discuss your suffering with FM without the fog? I can almost see the other things, but that? I became doubtful of her claims when I realized that she never even alluded to the fog.
Other things that these scam artists people leave out are the Sjogren Syndrome, restless leg syndrome, insomnia, twitching, the skin problems and irritability (due to all of the above, obviously). There are reasons why it’s called Fibromyalgia Syndrome and these people are don’t get that. They’re feeding off of the desperation of people looking for relief from the pain (which itself is bad) and those people don’t think to look for truths in their spiels. Those truths can be found by examining what isn’t included in the symptom list and which symptoms are “cured”.
I looked at that doctor who offered a discount to people who flew to his clinic to get diagnosed and treated and almost gagged. Here is someone that will most certainly diagnose anyone who comes to his clinic with FM—though there are no specific tests for it. No doubt he will make money off of people who don’t have it (but whom received his diagnosis) and then “cure” those people. They would believe him, of course, and tout his treatments as effective. And people who have the disease will become hopeful and fly to get help—only to be disappointed once again.
If you suffer from Fibromyalgia—or any other chronic pain condition—be especially careful of the scam artists that want to get rich off your suffering. Much like you would when searching for life insurance, do the research, listen closely to what they say, check them out thoroughly before giving your money. I know how bad you want relief because I do too. Sometimes I can’t even stand to breathe because I’m suffering so. Sometimes I just want to give up because it seems to have taken control of my life. I know how you feel. I’m there with you. But there are people that want to cash in on your suffering and don’t care if you’re actually “cured” or not. They know that we’ll do almost anything to get back to our real lives. Be so very careful of these people that offer miracle cures for a disease that isn’t even clearly understood by actual science. Don’t become a victim of those feeding on our suffering.