What the heck is a syndrome?

A syndrome is a collection of symptoms that remains the same throughout a particular patient group, but the cause is unknown. These might include fibromyalgia syndrome, chronic fatigue syndrome, Cushing’s syndrome, irritable bowel syndrome, AIDS, Asperser’s syndrome, Barrett’s syndrome, carpal tunnel syndrome, leaky gut syndrome,  paradoxical orthostatic tachycardia syndrome, Sjögren’s syndrome, Ehlers-Danlos Syndrome, urethral syndrome,  restless leg syndrome, Raynaud's syndrome, CREST Syndrome (a form of Scleroderma), complex regional pain syndrome, and many more. You may not realize it, but even rheumatoid arthritis is considered a syndrome. 

Some disorders are confusingly called diseases, when they are actually syndromes.  Diseases generally have a known cause. And syndromes, even when we know something about them are still syndromes. For instance, research shows there is an excessive release of acetylcholine at the neuromuscular (nerve to muscle) junction of a myofascial trigger point, but myofascial pain syndrome is still considered a syndrome. This is because we don’t know what causes the excessive release of acetylcholine, a neurotransmitter, the chemical messenger between the body and the brain.

When invisible disorders have no biological marker, a test that says you specifically have the disorder/syndrome, and sometimes when they do, there is always the doubting Thomas.  We think these folks mission in life is to prey on our psyche.  Why is this? Pretty much the answer is simple; they don’t experience our pain, lack of restorative sleep, life altering fatigue, severe chronic headache, a bladder that is constantly on fire, constantly cold extremities, or feel like everything they touch is barb wire, just to mention a few symptoms of invisible illnesses. Syndromes are not seen as real because some people operate on the assumption that if you can’t see it, it isn't so, even some healthcare providers migraines were once attributed to a woman’s frenzied inability to cope with stress.

Newer research into genetic markers will plow under the misconceptions of those who do not share our syndrome. In the mean time, it is up to us to support those who support the research.  Orphan disorders of all sorts face the same challenges.

In healing and hope, Celeste Cooper, RN author, patient, activist

All blogs, posts and answers are not meant to replace medical advice.  www.thesethree.com

February is Raynaud’s Syndrome Awareness Month: What does this mean to you?

“When [Raynaud’s] occurs by itself, it is called Raynaud’s disease, or primary Raynaud’s phenomenon. When it occurs along with other diseases, such as scleroderma, rheumatoid arthritis, systemic lupus erythematosus, polymyositis, dermatomyositis, Sjogren’s syndrome, or mixed connective tissue disease, it is called secondary Raynaud’s phenomenon.”

Cooper and Miller, 2010, pg. 106-107

The symptoms of Raynaud’s are common in fibromyalgia and chronic fatigue immunodysfunction, and may be present if you have thoracic outlet syndrome.  The symptoms should not be confused with feeling cold, which is often associated with FM and CFID (ME/CFS).  These symptoms could be due to an upset in neuro-endocrine system, and can be attributed to autonomic effects or hypothyroidism. 

The defining characteristic of Raynaud's is that it generally affects only the fingers, toes, and  sometimes nose, and most commonly occurs when exposed to cold. Changes in skin color occur from pale to blue, and turn red during re-warming.  Also associated is extreme numbness during the acute phase. Though the cause is unknown, it is suspected that the nerves to the blood vessels cause them to spasm depriving the skin of blood and oxygen.  When the arteries relax during re-warming, blood flow returns causing the redness, which is frequently associated with pain, stinging or a burning sensation.

Your doctor may order a cold stimulation test to confirm diagnosis or do a nail fold capillaroscopy  or vascular ultrasound if secondary Raynaud’s is suspected.

Myofascial trigger point (MTrP) nerve entrapment can worsen symptoms of Raynaud’s so check MTrPs associated with the referral patterns to the affected area. (Cooper and Miller, 2010).

Treatment goals:

• Re-warm slowly.
• Protect fingers, toes and nose from cold exposure to prevent frostbite and skin ulcers.
• Avoid emotional stress.
• Avoid alcohol, particularly when you know you will be exposed to cold.
• Don’t smoke.
• Avoid use of tools that vibrate the hands.
• Vasodilator type medications may be indicated in severe cases.
• There are certain medications to avoid if you have Raynaud’s, so be sure to consult with your physician or pharmacist.

Report any unusual symptoms or skin breakdown to your physician immediately.

Cooper and Miller, Integrative Therapies for Fibromyalgia,Chronic Fatigue Syndrome and Myofascial Pain: The Mind-body Connection. Vermont: Healing Arts Press, 2010.

All blogs, posts and answers are not meant to replace medical advice.

Demanding body, cellular strength, LGS: Are we what we eat?

The old saying “We are what we eat,” still holds true, but the benefit versus consequences ratio is much lower than it once was. 

Our bodies rely on food for cellular and brain metabolism.  Leaky gut syndrome (LGS), has been strongly linked to autoimmune disorders.  Autoimmune disorders, where the body’s immune system manufactures antibodies against its own tissue, are on the rise, almost at epidemic levels.

Some autoimmune disorders known to cluster with fibromyalgia and/or chronic fatigue syndrome (CFS/ME) include rheumatoid arthritis, ankylosing spondylitis, Lupus (SLE), Sjögren’s, thyroiditis, Raynaud’s disease, autoimmune dysautonomia, interstitial cystitis, chronic Lyme disease, Reflex Sympathetic Dystrophy, and possibly others depending on the individual. 

Leaky Gut Syndrome ©

The purposes of the bowel are to break down food into nutrients and eliminate waste or unwanted products. Leaky gut syndrome (LGS) causes body-wide symptoms because of holes in the intestinal barrier. Due to this breakdown, the bowel does not function normally and does not filter out some harmful substances, such as bacteria, toxic waste products, food additives, infectious agents, and inflammatory substances. These irritants initiate an immune response, causing inflammation. With this disruption to normal bowel function, the immune system leaves the gut open to infections and yeast overgrowth, causing not only gastrointestinal symptoms like bloating, gas, diarrhea, and abdominal pain, but other feelings of ill health......

Book excerpt (Cooper and Miller, 2010)

So how do we minimize the chance of developing Leaky Gut or treat it?

There are specific tests to confirm LGS so discuss your symptoms with your doctor.  Take precautions by eliminating known irritants to the bowel, including certain foods, (Gluten if you are known to be intolerant or have Celiac disease), medications such as NSAIDs (Non-steroidal anti-inflammatories (when possible), and alcohol. 

According to Sharecare health expert Dr. Leo Galland, http://www.sharecare.com/question/how-manage-leaky-gut-syndrome , we should adopt an anti-inflammatory dietary pattern. The principles are simple to understand:

• Avoid foods with added sugar and refined starches made from white flour.
• Decrease consumption of saturated fat and most vegetable oils, using extra-virgin olive oil instead. Eat at least 9 servings of fruits and vegetables a day.
• Eat at least 4 servings of fish per week.

He also says there are dietary supplements that help the small intestine heal and restore its functional integrity, which are readily available in health food stores. The most important of these are:

• Amino acid L-glutamine and
• Amino sugar N-acetyl-glucosamine

It is difficult to find preservative free foods these days, and even fresh vegetables can be toxic because of pesticides.  (see 9 foods likely to have pesticides at http://www.doctorshealthpress.com/food-and-nutrition-articles/the-nine-foods-most-contaminated-by-pesticides. )  There are consequences for everyone, but especially to those of us who already have a dampened or dysfunctional immune or endocrine system.  Many of the chemicals used to preserve our food, artificial flavoring and color are toxic. When in doubt, eat fresh, preferably organic.  Not everyone can afford organic, so here is a link on how to clean vegetables and fruit.  http://suite101.com/article/how-to-wash-pesticides-off-fruit-vegetables-a174074

Today the industry is big business because we need to feed the massive amount of people in the world today.  For this reason we must advocate for the food industry to find or revert to safer methods of preserving our food.  In a world where so many have nothing to eat, it is a bitter sweet reality.

Deirdre Rawlings, ND, and PhD in nutrition asked me to write a contributing chapter to her E book, Fibromyalgia Insider Secrets: 10 Top Experts.  She is extremely educated in these matters and she reports on the plethora of information regarding nutrition and why we should be more concerned about eating healthy to fight the rise in autoimmune disorders.

This blog can also be found at Sharecare, http://www.sharecare.com/user/celeste-cooper/blogs

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.  www.thesethree.com