By National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) ,Public domain, via Wikimedia Commons

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 feeds 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. 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.

As someone who suffers from chronic pain, I was wondering what are the long term effects of my pain medication? At this point in time Lyrica is not available to me and SSRIs, like Cymbalta, have horrible side-effects with me. So, my doctor in all his wisdom prescribes me Vicodin to control my pain. So, what are the long-term effects of it’s usage?

During my research I found very little on the long term effects. Most of what I found dealt with addiction to opioids and opioid-mix drugs. Currently, very few people become addicted to drugs like Vicodin and Percocet, though they do become physically dependent– which is not the same as addicted (explained further below). Some of what I found also dealt with the effects of overdose on opiods mixed with acetaminophen, such as liver and kidney damage that could ultimately lead to death (which is the case with any drug that contains acetaminophen).

Here are some of the facts regarding addiction and physical dependency to opioid/opioid-mix drugs from WebMD:

Addiction Myths¹ :
Addiction: Hospice patients worry about becoming addicted to opioids. With hospice, however, it is rarely an issue. People with chronic pain also worry about addiction, but it turns out that for most adults, if they do not already have a substance (alcohol or drug) abuse problem, addiction is not much of an issue even when opioids are used on a long-term basis.

• A study was done in which 12,000 nonaddicted people who needed opioids were followed up to see if they had become addicted. Four out of 12,000 showed addictive behavior (less than one tenth of 1%).
• Generally, the only people who develop addictive behavior after being given opioids had an addiction problem before the opioids were given for pain. Most people take opioids until the pain goes away. Then they stop taking them because they do not want to feel dizzy or drowsy. Once the pain goes away, the toxic side effects of dizziness and drowsiness come back.
• Anyone who takes any medication just to “get high” is already showing addictive behavior and needs to stop taking addictive substances, including opioids, other addictive drugs, and alcohol, immediately.
• Some people with actual painful illnesses are addicted to mind-altering substances. They get prescriptions because of their actual illnesses. Here’s how the patient or the family can tell the difference between someone who needs opioids for pain and someone who is abusing opioids. Normally, the dose of opioids is arrived at by the patient telling the doctor how they are doing with the pain and by participating in their activities of daily living. A chronic pain patient who is not addicted to medication will tell the doctor the truth about his or her ability to function and do what needs to be done in daily life.
• Addicts will lie about performing activities of daily living. The addict will claim that the pain is so severe that they need a higher dose until they get to a dose that causes them to be asleep most of the time. Then, they will tell the doctor that they are doing fine and are able to do all the activities that they need to do.
• Selling the medicine to others is a federal crime that could get the seller a very long jail sentence and could lead to government seizure of your car or your house.
• Family members must let the doctor know what is actually happening in this sort of situation. When an addicted person actually has a painful syndrome, the doctor, with the help of the family, may have to decide what the dose of medication should be, without reference to the dose the pain patient thinks would be best. Sometimes, in severely addicted people, the opioids should not be used at all. Some addicted people can be treated with opioids if necessary as long as they cooperate carefully with the treatment plan.

The physical dependency of my Vicodin is well documented, but I’m glad to know that the kind of addiction exhibited in such shows as “House” is so rare. Still, I worry about the damage my body will have due to long-term use. The WebMD article tells me that opiod/acetaminophen and opioid/NSAID (ibuprophen, naproxen) aren’t recommended for long-term use by chronic pain sufferers simply because over time they can damage the liver, kidneys and stomach (NSAIDs). However, an article from the Mayo Clinic states²:

No evidence indicates that long-term use of single-agent opioid analgesic preparations results in end-organ failure, as may be seen with other analgesics (eg, NSAIDs), or with certain combination opioid analgesics

And the WebMD states:

Strong opioid medications are slightly different in this regard, and this is fortunate for people who suffer from severe pain. With strong opioids, the dose depends on the amount of pain. These medications should not mixed with acetaminophen or other non-opioid drugs when used to treat chronic pain. People with intense pain can take very high doses of opioids without getting side effects. Some people with intense pain get such high doses that the same dose would be fatal if taken by someone who was not suffering from pain. In the pain patient, that same high dose can control the pain and still allow the person to be wide awake enough to do his or her activities of daily living.

• Long-acting opioid: The best way to treat chronic, severe pain is by keeping it under control all the time. Your doctor can do this by using a long-acting opioid to keep the pain under control and a short-acting opioid to deal with those few times during the day when the pain breaks through. So, if you are on morphine, you would get a slow-release tablet that would keep your pain under control most of the time, and a short-acting tablet or liquid for those times when your pain breaks through.
• Bad opioids: Some opioids are not recommended for chronic pain.
  • Demerol (meperidine), which is used often for acute pain after surgery, is a poor drug for chronic pain. It is not absorbed well when taken by mouth, and it causes dysphoria (feeling truly lousy) and seizures if used for more than a few days.
  • Talwin (pentazocine) is also bad for chronic pain. It has a ceiling effect. There is a maximum dose after which raising the dose gives no further pain relief. It also causes withdrawal symptoms when given to someone who is also taking another opioid.
  • The opioid/acetaminophen or opioid/NSAID combination drugs are fine for short-term use, but acetaminophen is poisonous to the kidneys and liver when used for a long time or in high doses. Many NSAIDs are toxic to the kidneys and stomach when taken for a long time or in high doses.

Doctor’s Argoff and Silverstein, writing the article located on the Mayo Clinic Proceedings, clearly states that “single agent” opioids show no long-term effect leading to organ failure, but combined with acetaminophen or NSAIDs can have dire results as shown by WebMD. So, am I to take from this that I should find another way to manage my chronic pain? I’m thinking that over the long haul I will be forced to go back to Amitriptyline and possibly try Lyrica– after I talk to my doc about this new drug.

Yesterday, while I was doing my research for this post, the FDA was busy approving a new, long-acting opioid for moderate to severe chronic pain.

The US Food and Drug Administration (FDA) has approved morphine sulfate/naltrexone hydrochloride (Embeda), an extended-release oral opioid analgesic for the management of moderate to severe pain when a continuous, around-the-clock opioid analgesic is needed for an extended period of time. This Schedule II agent is the first FDA-approved long-acting opioid that is designed to reduce drug liking and euphoria when tampered with by crushing or chewing.

Does this drug count as a “single agent opioid” and will it be safer to use than Vicodin (mixed with acetamenophin) or Percocet (mixed with NSAIDs)? Can this be something that will have fewer adverse long-term effects for chronic pain sufferers? As I’m not a doctor, I can’t really answer those questions– but they will be posed by me to my own doctor. It’s something I’m genuinely interested in. I have chronic noncancer pain and want relief from that without having to wonder if I know anyone close who would be willing to donate part of their liver later on in my life³. This is something that I’ve been thinking about for quite some time and I believe it’s time to review my options and sit down with my doctors again.

A note on physical dependency:
Physical dependency is different than addiction in that addiction causes people to seek the drugs anyway that they can get them, including lying to their doctors about their pain and daily activities. Physical dependency cause the withdrawal symptoms when people stop taking the drugs as well as heightened tolerance over time. That means that people suffering from chronic pain are likely to take more of the medication to get relief– which is what can lead to the most damage. This is why it’s so important to talk to your doctor honestly about the need to increase your dose of medications if and/or when that happens.

One more note: One of the side-effects of Vicodin is intense itching all over. I’ve recently discovered this in my research (having developed this recently and wondering what is going on). It’s normal and you should make sure to tell your doctor if you experience. I was under the impression that this was an effect of long-term use of the medication, but I’m wrong. It’s normal and can occur in people that have just started taking it.

1. WebMD: Chronic Pain Guide: http://www.webmd.com/pain-management/guide/narcotic-pain-medications
2. Contemporary Clinical Opioid Use: Opportunities and Challenges * W. L. Lanier and E. D. Kharasch
   Mayo Clin Proc. July 1, 2009 84(7):572-575
3. That statement is only half tongue-in-cheek, by the way.

I’ve started a new diet and exercise plan. I heard about the "Mayo Clinic Diet Plan" and so went in search of it. Guess what? It’s not one of those fancy, buy-my-book-cuz-I’m-the-expert type of diets. This is the real kind of diet and exercise plan. What do I mean by "real"? Well, duh, stop eating the fats, the processed foods, and the junk and start stuffing your face with vegetables, fruits and healthy stuff. The exercise portion is "moderate to vigorous exercise 30-60 minutes most days". From the site:

The Mayo Clinic Healthy Weight Pyramid helps you adopt a healthy, lifelong eating plan. This means no severe restrictions on the foods you eat and no extreme hunger. The base of the pyramid focuses on generous amounts of healthy foods that contain a small number of calories in a large volume of food, particularly fruits and vegetables. Healthy choices in moderate amounts make up the rest of the pyramid, which focuses on whole-grain carbohydrates, lean sources of protein such as legumes, fish and low-fat dairy, and heart-healthy unsaturated fats.

[...]At the most basic level, physical activity means moving — every motion of your body burns calories and is therefore beneficial. Cleaning the house, making the bed, shopping, mowing and gardening are all forms of physical activity. Exercise, on the other hand, is a structured and repetitive form of physical activity that you do on a regular basis. Exercise improves your fitness, as well as helps you lose weight and deal with everyday stress. Whatever activity you choose, the key is to commit to doing it regularly. Aim for 30 to 60 minutes of moderately intense physical activity most days of the week. Moderately intense activity or exercise should increase your heart and breathing rates and possibly lead to a light sweat. Brisk walking and yardwork that entails near constant motion are examples of moderately intense activity.

They have a link to the pyramid that the government has adopted in an effort to make their recommendations more personalized. Enter your gender, age, height and weight and you’re given the total number of calories you should consume a day, exercise recommendations and food choices. They even provide a link to healthy recipes for those of us that aren’t too sure how to cook without the fat and calories. My own pyramid tells me that I should eat no more than 1,200 calories a day, exercise 60 minutes a day, take in 5-7 servings of veggies and 4-5 servings a day of fruits. Also included is the amount of fat and junk I can safely eat everyday and still lose enough weight to get to a healthy level. Very basic and very simple. And there’s really no need to buy the book (there is no real book from the Mayo Clinic!) since you can look at it, download and print it all from the website for free.

The Mayo Clinic has partnered with Microsoft to provide a health manager for users. Of course, I signed up when I saw the link. The health manager tracks more than just your weight loss (which was what I was interested in) but also your blood pressure, cholesterol levels, and other risk factors that could endanger your life. Then they provide recommendations on how to manage that and lower the risk as well as a graph which shows whether your levels/weight has increased or decreased, giving you an idea of how you’re really progressing (without the doctor’s fees). They also provide you with a "vault" to input your medical history, medications you’re on and doctor’s appointments (among other things). For your doctor’s appointments, they will email you a reminder and will give you a form to print out with all of your medical concerns (which, of course, you input into their system) so that you can bring those to your doctor’s attention and don’t forget something important (which I do all the time). It’s an amazing little system. By the way, you can add all of your family to the system and keep track of them also. Everyone’s in the same system and accessible. If you want to know if your husband is going to fit into that tuxedo in January, start a graph for him and keep track. You’ll see his progress and can more easily nag him into shape.

Now, privacy could be a concern with the above system, considering the nature of the information involved. If you want to use it, but are concerned that someone could hack your account, just sign up under a pseudonym. The Clinic and/or Microsoft aren’t going to call around asking if that’s really you in the vault. The program is only designed to help you manage your health, not get super secret information. If that’s a major concern for you, just sign up under "Jane Doe" or something equally off-the-wall. The only person that will know any differently is you.

So, I’m beginning my new regimen soon. After my illness, I did drop quite a few pounds, but I’ve been inactive, so it’s slowly coming back as my appetite increases. I want to make sure that I’m not only slimmer, but also healthier. I’ve recently read an article (which I can’t find quite at the moment) that you can be slim but still have the heart of an obese person. How? Dieting without the exercise can leave the fat suffocating your heart and other internal organs. Muscle is needed to burn fat more efficiently for all the body parts you can’t see and that requires exercise. Not to mention your blood flow is increased (necessary for muscle buildup and metabolism as well as healthy bodily functions) when you’re active. Eating 5 calories a day will help you lose weight, but if you’re lying in bed while starving yourself, you’re just not going to win in the long run. And that’s what I’m trying to. I want to have enough strength and energy to fight my disease effectively and be a mom to my little girl. I also want to make sure I don’t end up with heart disease and/or diabetes later on—both diseases which are mostly preventable, but which plague our country (and my family). I’m even more conscious of my health than I’ve ever been so I’m thrilled that I found this site and the tracker. Anything that makes things easier for me to get through this and finally win is a lifesaver (maybe even quite literally).¹

1. Please note that I am receiving no compensation from either The Mayo Clinic nor Microsoft for my usage and review of the Health Manager. I did stumble on the service while I was looking up “the Mayo Clinic Diet” and do find it incredibly useful. I am sharing my experience with both the “diet” plan and the Health Manager in hopes that you find it just as useful.