Guest Speaker - Scott Rigden, MD

Dr. Rigden says, “The cause of Fibromyalgia (FMS) remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as rheumatoid arthritis, lupus or hypothyroidism. These triggering events probably don’t cause Fibromyalga but rather, they may awaken an underlying physiological abnormality that is already present. There are many theories as to what this abnormality could be including release of pain-related chemical transmitters, altered immune system function, abnormal sleep physiology, hormonal irregularities and brain function disturbance.”

After starting out as a ‘country doctor’ in a small town outside Rockford, Illinois, Dr. Rigden was “drafted by my patients” to learn more about and eventually specialize in Fibromyalgia and Chronic Fatigue Syndrome. He talked about the many names that Fibromyalgia has had in the past… Fibrocytis, Fibromyelitis and etc. and in the late 1980’s he had 10-12 patients with a very similar set of symptoms. When Dr. Rigden saw that educational courses were being taught on the subject, he signed up to learn more about this mysterious combination of pain, fatigue and etc. In 1991-’92 Dr. Rigden did some clinical research with a biochemist and he has been involved in the treatment ever since.

The first question Dr. Rigden asked was, “How do I communicate to my patients that they need to conserve their energy?” He asks his patients about their goals at first and most typically, the FMS/CFS (chronic fatigue syndrome) patient used to be a Type A personality, always on the go, with many daily tasks, day after day, week after week. We all knew we could go from ‘a full tank to empty’ and then have no problem filling up with more fuel. We had lots to do and we usually got it all accomplished with no problem…. But we cannot do these things any more. We have to pace ourselves and conserve energy.


Case Studies

Case #1 was an amazing teacher, who was not happy just going from 7am to 3pm and then going home…. She was one of those teachers who put everything she had into teaching. She would always stay in her classroom or at the school long after the students went home… either meeting with parents, preparing for tomorrow’s lesson, helping students with some extra tutoring or pitching in wherever she could for other school activities. After the pain and fatigue from Fibromyalgia started, she stayed in bed for about a year while seeing Dr. Rigden for treatment. She finally felt well enough that she started teaching again, but as soon as she got back ‘into the routine’ again, she got a MAJOR flare-up of pain again.
Dr. Rigden says, “You have to reinvent yourself!” You’re not a bad person because you can’t do all the things you used to be able to do. Like he told the teacher, “Sometimes it’s okay to just show a movie!” She relearned how to accomplish most of her goals and is still teaching.

Case #2 was an ASU Professor, a brilliant man who had made many inventions, even getting patents on some of them. After getting Fibromyalgia/Chronic Fatigue, the professor tried all kinds of things to figure out how to get his life back while seeing Dr. Rigden for treatment. The professor finally figured out what worked for him and told Dr. Rigden that he was a “List Guy” which meant that as long as he made a list of the things he wanted to do, that he did pretty well at getting the tasks done. Dr. Rigden said that the professor eventually worked out a system where he would make a list of 10 things he wanted to do for the day and if he got 5 of them done, it was considered a successful day.

Case #3 was a 29-year-old man, Stanford graduate who made a fortune in the stock market. He was a, making gobs of money, when Fibromyalgia and the fatigue started having an effect and he ended up in bed for a year. Dr. Rigden got him up and running and he ended up moving to the Bay Area over in California. After keeping in touch with him and during a phone call, he told the doctor that he “was doing terribly” because he used to be able to work 80-90 hrs/week and was now only able to work 40-50 hrs/wk. In addition, he used to have a running program that he had stuck to for many years and now he can ‘only’ run 5 miles at a time!! (LOL)

Dr. Rigden says, “You have to ask yourself, “What are my limits?” and you have to learn to conserve your energy. (see Spoon Theory) Get to know your body, find out how many errands you can realistically do in one day, find out how much energy it takes to accomplish each of your day-to-day tasks and eventually you’ll find the right balance.


The Liver

How can we live in this world without a good liver? The liver screens out toxins in the body through two phases… first where the toxins are broken down into smaller particles, they are then combined with other molecules and then excreted. But with FMS/CFS our bodies cannot handle the toxins. Leaky gut can cause stress along the liver’s detox pathways, especially during phase 2 of the process, when highly reactive, intermediate substances left over from phase I are neutralized.

Scientists have come up with a test where the patient is given lethal doses of aspirin, caffeine and Tylenol and then do a 24-hour urine collection to see if the body is processing the toxins correctly.


Irritable Bowel Syndrome/Leaky Gut Syndrome

How does this happen? Think of three terms: GALT…. tennis court…. and bricks! Digestive symptoms (like gas and bloating) can be signs of leaky gut, but so many other symptoms are difficult to trace back through the intestines because they don’t seem related to digestion. We might never imagine that joint and muscle pain, cognition problems, unexplained fevers, poor coordination, and even shortness of breath could be signs and symptoms of leaky gut syndrome!

GALT – Special areas in your intestinal lining called gut-associated lymphatic tissue (GALT) work to protect you from allergy-causing food antigens and disease-carrying microbes. When you have a leaky gut, these harmful entities can elude the GALT and instead are routed through the lymph system to gain access to your bloodstream, where they can travel far and wide throughout your body. This GALT comprises 60% of our immune system.

Tennis Court – If you spread out your intestines out in lines going back and forth, you would cover an area the size of a tennis court! There is usually a balance of about 90% GOOD bacteria and about 10% BAD bacteria in your body which get broken down and processed through the intestines. What happens if you’re off balance? You feel crummy!

Bricks – The cells in the stomach are like bricks being held together with mortar, only the mortar is like an old house… it is crumbling and it leaks! This can be tested with small to large sugars, which can then be detected in the urine. If it’s Leaky Gut, it is very obvious… like comparing a motorcycle to a Mack truck!


NFkB (pronounced ‘N F kappa B’)

NFkB plays a key role in regulating the immune response to infection. Conversely, incorrect regulation of NFkB has been linked to cancer, inflammatory and autoimmune diseases, septic shock, viral infection, and improper immune development. NFkB is what causes the pain in the muscles and inflammation in Cancer patients and Fibromyalgia patients so we must eat foods that reduce the NFkB. Dr. Rigden provided the following list of Inhibitors and suggests that we eat at least 5 per day:


Almonds
Anise
Basil
Black pepper
Caraway
Cardamom
Cashews
Chili pepper
Cinnamon
Clove
Coriander
Cumin
Curcumin
Fennel
Fenugreek
Figs
Flaxseed
Garlic
Ginger
Gooseberry
Holy basil
Lemongrass
Licorice
Mango
Mint
Mustard seed
Nutmeg
Onion
Oregano
Parsley
Pecans
Pomegranate
Prunes
Rosemary
Saffron
Sesame seeds
Tamarind
Turmeric
Walnuts



Flare-Ups!

If you really want to flare up Fibromyalgia pain… eat or drink lots of:

Sugar, White flour, Adult beverages, Cheese and Caffeine



XMRV

As we all know, there has been a LOT of controversy over the connection with XMRV and Chronic Fatigue Syndrome. Some world-class researchers say they found the retrovirus, XMRV, in 86% of the CFS patients in their study and only 7% of the control group. Then, some other world-class researchers (including the National Institute of Health) did another study and could NOT find it and even researchers from abroad say it’s not there. Dr. Rigden’s mentors tell him that it is there, but there’s still a big argument on the subject. Is it an immune system disease or is it secondary to another invader? We’ll just have to wait and see.

Some say, “It’s a retrovirus, like AIDS, so let’s treat CFS with the medications we use for AIDS patients.” Dr. Rigden told us that there are people going online and buying these medications online from overseas and treating themselves with the medication selection, dosage and frequency. This is a very bad idea! First, we need to find out more about the retrovirus, XMRV, and then research needs to be done on what will work safely and effectively for this particular retrovirus. Before we do anything… we need to wait a little longer.


Sleep

Sleep is very important for FMS and CFS patients. This is one area that Dr. Rigden concentrates on… he asks about irregular breathing, sleep disorders, holding breath and etc. We HAVE to have oxygen to the brain 24 hours a day for energy. We had a general discussion about Sleep Apnea Tests (records everything about your sleep), sleep apnea, Restless Leg Syndrome and CPAP machines.


Pain Management for FMS

Dr. Rigden uses pain medications only as a last resort or for back-up pain/flare-ups. “It has never been shown that anything helps Fibromyalgia!” says Dr. Rigden. Each medication has a different set of side effects and they are unpredictable. He has had 2 patients die from an overdose of pain medications, prescribed by another doctor or provided by an ‘friend’ or family member and to this day has no idea if it was intentional or an accident. The doctor suggested lowering pain instead of taking the pain meds. This can be done with Ultram, Tramadol or Dextromorphan (which is in Robitussin-DM or it can be compounded at a pharmacy). It is recommended that you talk to your doctor first, however, since there are some contraindications. Lyrica was the ‘first medication’ for FMS, but unfortunately has so many bad side effects that Dr. Rigden tries to keep patients off of it, if possible.

“Never Give Up” – advice from the Dalai Lama – Dr. Rigden read this poem for the group because he thought it was very appropriate for the group:
NEVER GIVE UP by H.H. The XIV Dalai Lama


No matter what is going on
Never give up
Develop the heart
Too much energy in your country
Is spent developing the mind
Instead of the heart
Be compassionate
Not just to your friends
But to everyone
Be compassionate
Work for peace
In your heart and in the world
Work for peace
And I say again
Never give up
No matter what is going on around you
Never give up


Question and Answer Session –
1. There was discussion on T3, T4 and TSH testing for the thyroid function.

2. Someone asked about the effectiveness of Marinol (Dronabinol), which is the FDA approved, medical marijuana. (see below) Dr. Rigden stated that very few patients have had to take Marinol and feels this ‘medication’ is a rip off. He recently received a mailing trying to get him to sign up to become one of the providers of this medication after the November vote this year.
• A pharmaceutical product, Marinol, is widely available through prescription. It comes in the form of a pill and is also being studied by researchers for suitability via other delivery methods, such as an inhaler or patch. The active ingredient of Marinol is synthetic THC, which has been found to relieve the nausea and vomiting associated with chemotherapy for cancer patients and to assist with loss of appetite with AIDS patients.
• Unlike smoked marijuana--which contains more than 400 different chemicals, including most of the hazardous chemicals found in tobacco smoke-Marinol has been studied and approved by the medical community and the Food and Drug Administration (FDA), the nation's watchdog over unsafe and harmful food and drug products. Since the passage of the 1906 Pure Food and Drug Act, any drug that is marketed in the United States must undergo rigorous scientific testing. The approval process mandated by this act ensures that claims of safety and therapeutic value are supported by clinical evidence and keeps unsafe, ineffective and dangerous drugs off the market.

3. There is a controversy over food allergies… The doctor prefers using the radioallergosorbent test (RAST) immunoglobulin G4 (IgG4) test for food allergies.
IgG4 antibody test and food specific IgG4 tests
There are four subclasses of immunoglobulin G. Selective deficiencies in one or more of the four IgG subclasses are seen in some patients with repeated infections. Measurements of IgG4 antibodies have been used in research settings as diagnostic and prognostic tests to determine response to allergy treatments.

4. Does eating gluten-free help? Eating gluten-free lowers inflammation. Dr. Rigden informed the group that the DNA testing for Celiac isn’t 100% accurate. He suggested that everyone try it for 60 days. You will see a DEFINITE CHANGE if you’re allergic to gluten.

Table of Contents

Page title Most recent update Last edited by
TO TRY MEDICAL MARIJUANA.... October 21, 2011 4:03 PM Diane L. K.
Variety of Strains of Medicinal Marijuana March 7, 2011 2:47 PM Diane L. K.
The History of Medicinal Marijuana March 7, 2011 2:13 PM Diane L. K.
Guest Speaker - Scott Rigden, MD September 16, 2010 1:44 PM Diane L. K.
Finding Dr. Right August 19, 2010 11:11 AM Diane L. K.
Freedom Disability -- A national advocacy group August 19, 2010 11:05 AM Diane L. K.
ARE YOU CLUMSY... or Truly Off Balance? August 4, 2010 1:08 PM Diane L. K.
NEW PRELIMINARY DIAGNOSTIC CRITERIA FOR FM August 4, 2010 12:35 PM Diane L. K.
A Pain Patients' Bill of Rights February 19, 2010 5:41 PM Diane L. K.
10 Commandments for Un-Well Beings November 16, 2009 5:38 PM Diane L. K.
About East Valley Fibromyalgia and Chronic Fatigue Suppo December 31, 2013 4:00 PM Diane L. K.

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