Wednesday, January 20, 2010

Chapter 2 - Section F - Misconceptions

“You don’t look sick, so you must not be” – This is one of the biggest misconceptions that people have. Simply because a person looks healthy does not mean they are.

Mayo Clinic also has several good Myths… at the moment my brain is turning off so this is probably a good stopping point… here is the link to that article

Chapter 2 - Section E - Personal Experience

It has been my personal experience that not everyone feels the same way about Fibromyalgia. Despite the fact that it has become a more widely accepted diagnosis, there are still doctors who “don’t believe in it.” In fact, my Neurologist does not believe that this is a valid diagnosis. He told me that he feels that it is a lazy diagnosis by doctors who do not want to search for the “true problem.”


I have also discovered that many people have never even heard of Fibromyalgia or have heard an incorrect definition of what it is. When I told my parents about my diagnosis my dad thought the doctor had the diagnosis wrong because he did not think that someone my age could get Fibromyalgia.


It is my personal opinion that these two problems are two of the most discouraging problems that people with Fibro can face. People doubting us makes us doubt ourselves. We begin to believe that we must be crazy because everyone else thinks so. The diagnosis is very reaffirming because there is a doctor telling us that we are NOT crazy. When another doctor tells us that the diagnosis isn’t even a real thing, the doubt in ourselves is redoubled. It is a huge vicious circle that can worsen our condition.


It is important to realize that there are new medical advances made every day. Not every problem has been fixed or even diagnosed. Doctors in the early 1800’s didn’t believe in germs or microscopic organisms! They used to use disgusting leaches to cure people!! We can not allow ourselves to be discouraged simply because there isn’t enough scientific evidence yet to support us and discover a cure.

Chapter 2 - Section D - Terms & Conditions (WORK IN PROGRESS)

(ok, I know that this one isn't finished, but my mind just wouldn't focus on it today. I will work on it more tomorrow)

With Fibromyalgia there are many terms that are not normally used so I will define them here. Also, many conditions walk side by side with Fibro. I will list a few of them here as well. (If you have more of the “norm” that you would like to add please let me know!)

Terms:


Fibro Fog
– Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, Language lapses. Basically this is a general confusion and memory loss issue. Much of the time it is difficult for someone with Fibro to concentrate and/or it takes longer for us to process something. This is not because we are dumb; it is simply because our brain works at a different pace.

Trigger Points
– Also known as Tender Points, these are the pressure areas that a Rheumatologist would test (apply pressure) to determine a diagnosis of Fibromyalgia. There are a total of 18 points, but only 11 points of tenderness are required for a diagnosis. They are located: back of the head, between shoulder blades, top of shoulders, front sides of neck, upper chest, outer elbows, upper hips, sides of hips, inner knees.


Conditions
(also symptoms)

Acid Reflux

Chronic fatigue syndrome


Chronic headaches


Costochondritis
(chest pain) –

Depression


Irritable Bowel Syndrome
(IBS) –

Lupus


Multiple chemical sensitivity


Muscle twitches and weakness

Myofascial pain syndrome

Nausea and dizziness


Painful menstrual cramps

Post Traumatic Stress Disorder (PTSD) –

Skin problems

Sleep Disorders


Restless leg syndrome


Temporomandibular joint syndrome
(TMJ) –

Vision problems

Weight gain

Wednesday, January 13, 2010

Chapter 2 - Section C - Diagnosis

The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:
~ Widespread pain lasting at least three months
~ At least 11 positive tender points — out of a total possible of 18

Tender points
During your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor's fingernail bed. These 18 tender points are a hallmark for fibromyalgia.

Blood tests

While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:
~ Complete blood count
~ Erythrocyte sedimentation rate
~ Thyroid function tests

An Excerpt from Mayo Clinic


What does this mean?

Basically there is no test that can say with anonymity that a person definitely has Fibromyalgia. When a doctor is given a case that they believe may be Fibromyalgia they begin a process of elimination. They will test for a number of illnesses that have similar symptoms to Fibromyalgia. This may seem a pointless endeavor, especially when they are pretty sure that you have Fibromyalgia, however it is possible for Fibromyalgia to coincide with many other disorders, diseases, and/or health problems. In fact, it is very rare for Fibromyalgia to be “alone.”

Some of the things your doctor may/will/should test for:
(They are listed alphabetically, not in order of possibilities, so don’t panic)
~ Cancer
~ Cervical and low-back degenerative disease
~ Chronic fatigue syndrome
~ Depression
~ HIV infection
~ Hypothyroidism
~ Irritable bowel syndrome
~ Lyme disease
~ Rheumatoid arthritis
~ Sleep disorders

Some of the tests your doctor may/will/should do:
~ EKG
~ X-Rays
~ MRI
~ Blood Tests

Chapter 2 - Section B - Symptoms





Common symptoms:

Pain - Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, and muscle groups that are used repetitively may hurt more. In addition, the severity of regional pains (particularly those in the head, neck, shoulders and lower back) are a strong predictor of a person's overall pain rating. The muscles in these painful areas can feel tight, knotted and rope-like. Pressing on the firm, knotted region hurts and often causes the pain to shoot to other muscles when a myofascial trigger point is present.

Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia. Patients may feel as though their arms and legs are weighted down by concrete blocks and their bodies may be so drained of energy that every task is an effort.

Memory and Concentration - Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks. This symptom is referred to as "fibro fog" and may hinder job opportunities. In particular, fibromyalgia patients have serious difficulty retaining new information if they are distracted.

Sleep Disorders
- Patients report trouble falling asleep and more importantly staying asleep, but the unrefreshing quality is what makes the disorder much worse than insomnia. Repeat arousals prevent patients from reaching deep, restorative sleep. As a result, the night is spent in "quasi-sleep" and patients wake up feeling as though they have been run over by a Mack truck. An overnight sleep study will likely show repeat arousals with bursts of awake-like brain activity occurring throughout the night, but a specific sleep disorder may not be identified.

Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse. This is why initiating an exercise program may make you achy and tired. However, if you do not exercise on a regular basis, the performance of normal daily living activities will start to cause more pain. Rather than give in to the increased pain sensitivity related to exercise, patients are advised to do mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them. A study in Sweden revealed that half of the fibromyalgia patients found it impossible or difficult to climb stairs and a majority of patients could not run. Just standing for five minutes was extremely taxing to one-fourth of the patients.

Irritable Bowel Syndrome
- Constipation, diarrhea, frequent abdominal pain and bloating, abdominal gas, and nausea represent symptoms commonly found in roughly 40 to 70 percent of fibromyalgia patients.

Chronic Headaches
- Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients. Most headaches are rated as severe, occur at least two times per week, and often have a migraine component. Referred pain from myofascial trigger points in the shoulder, neck, and head muscles are suspected to be responsible for most tension-type headache and also play a role in migraines.

Jaw Pain
- Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain and affects one-quarter of fibromyalgia patients. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.23

Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities, chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods, irritable bladder, interstitial cystitis, vulvodynia (vulvar pain), difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating, muscle weakness and balance issues can occur. Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed.

Aggravating Factors
- Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups.
http://www.fmnetnews.com/basics-symptoms.php
An excerpt from the Fibromyalgia Network

What does that mean?

Basically there is no area of the body (inside OR outside) that is not affected by Fibromyalgia.

People with Fibromyalgia are often accused of being a Hypochondriac due to the wide range of problems. Unfortunately that also makes a specific diagnosis very difficult. In the next section I will discuss the diagnosis process, which is more of a process of elimination rather than a pinpoint method.

With the multitude of symptoms and problems that a Fibromyalgia patient has it is difficult to find a workable ‘solution,’ ‘cure,’ or ‘sure’ method of treatment. Each patient has a variety of things that will and will not work for them. This makes the treatment aspect just as difficult as the diagnosis side of things. We must be prepared to listen to our bodies and understand that what has worked for one person will not necessarily work for us.

Tuesday, January 12, 2010

Chapter 2 - Section A - Definition

Mayo Clinic:
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.

Google:
Fibromyalgia is a common condition characterized by long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems, headaches, numbness in hands and feet, depression, and anxiety.
Fibromyalgia can develop on its own or along with other musculoskeletal conditions such as rheumatoid arthritis or lupus.

Wikipedia:
(new lat., fibro-, fibrous tissue, Gk. myo-, muscle, Gk. algos-, pain, meaning muscle and connective tissue pain) is also referred to as FM or FMS. Fibromyalgia is characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure. Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other core symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder. Not all people with fibromyalgia experience all associated symptoms. Fibromyalgia is estimated to affect 2-4% of the population.


What does all of that mean?
Basically that means for people with Fibromyalgia is that it is more difficult for our pain receptors to be turned off. There doesn’t have to be a cause, but stress, bad food, over activity, and/or chemicals can set us off. The weather changing can also cause pain to worsen.

Chapter 1 - Section C - List o’ Links

Definitions/Symptoms/etc
~ Google Health - https://health.google.com/health/ref/Fibromyalgia
~ Wikipedia - http://en.wikipedia.org/wiki/Fibromyalgia
~ Mayo Clinic - http://www.mayoclinic.com/health/fibromyalgia/DS00079

Support & Information
~ National Fibromyalgia Association - www.fmaware.org
~ Fibromyalgia Network - www.fmnetnews.com
~ But You Don’t Look Sick – www.butyoudontlooksick.com
~ Know Fibro - www.knowfibro.com
~ Fibromyalgia & Fatigue Centers, Inc - www.fibroandfatigue.com

Tips & Hints

Chapter 1 - Section B - My Story

My name is Angie and I have Fibromyalgia.

Growing up I had several odd complaints about aches, pains, and headaches. I had a limited list of things I could eat that seemed fairly normal for a young child (no onions, nothing spicy, things like that). I was also prone to bouts of depression. I was told that everything I was going through was normal.

As I got older the aches and pains got worse and the headaches turned into migraines. After the age of 19 I had to stop wearing contacts because they gave me migraines and my eyes were always sensitive. I rarely felt truly rested and more often than not had very little energy to go and “party” with friends.

In the winter of 2006 I enrolled in The Art Institute of Houston. January 8th of 2007 I started my Bachelor of Fine Arts journey. I was working 40 hour weeks at work and taking 4 classes. Each class was 4 hours long with about 4-6 hours of homework in each. I would get up at about 5:30am, arrive at work at 7:15, leave work at 5pm, and go straight to school. Class was from 6pm to 10pm. I would get home any time after 10:30pm and if I was lucky I would fall into bed by about 11pm. Unfortunately that was not always the case.

After approximately 6-8 weeks I had so little energy I had to fight with myself to get out of bed in the mornings. By the end of the quarter (they do 11 week quarters instead of semesters) my husband was very worried and insistent that I go to the doctor. I made an appointment with my Primary Care doctor and she sent me to Physical Therapy.

Following about 8-10 weeks physical therapy and a diagnosis of Tennis Elbow, the Physical Therapist told me that he was uncomfortable continuing my therapy due to the fact that I seemed to be regressing instead of progressing. He suggested that I go to a Neurologist to have some tests done. The Neurologist had me do an MRI, X-Rays, an EKG, and several blood tests. He discovered that I have a nerve problem in my neck called Thoracic Outlet Syndrome (TOS). Basically my Thoracic channel in my neck is too small for all of the nerves and blood vessels that pass through that area. He gave me a referral to a Physical Therapist who specializes in this Syndrome, but also gave me a referral to a Rheumatologist because he felt that the diagnosis of TOS was not an explanation of my lower body pain.

My first trip to the Rheumatologist was promising (for those who don’t know what I mean… the ‘not knowing’ is very disconcerting and discouraging. Knowing is ½ the battle). He told me that there were a number of things that could be causing my pain and he was going to start the process of elimination with some blood tests. He also looked over the tests that the Neurologist had done. After about 20 vials of blood and several trips back to the Rheumatologist he diagnosed me with Fibromyalgia.

I can honestly say that I was relieved. Many people do not understand the feelings of disillusionment and depression that come with feeling this way and not knowing what is wrong with them. Yes, this is not a ‘good’ thing to have, but it is also better than not knowing what is wrong. Now I can figure out a way to fight it!

I have several side conditions, aside from the TOS (IBS, acid reflux, allergies, migraines, sleeping disorder, etc) that I have discovered are all a part of my Fibromyalgia. Understanding my condition and finding better ways to live with it has become one of my main goals in life. Helping other people understand Fibromyalgia is another goal.


I am currently 26 years old and happily married to a wonderful and understanding man named Austin. We do not have any children, but hope to one day in the future. I was born and raised in South Texas near Houston.

I graduated with a Bachelor of Fine Arts in Interior Design from The Art Institute of Houston on December 18th, 2009. My degree took 3 years at The Art Institute, but I also spent a few years at Montgomery Community College getting my general study classes out of the way. I currently work as a receptionist to an engineering firm in Sugar Land, Texas.

Living with Fibromyalgia may not be easy, but it is possible!

Chapter 1 - Section A - The Plan

Over the next few weeks I will be blogging at least once a day about these different topics in relation to Fibromyalgia.

I have looked through many books, read many articles, and heard many stories about Fibromyalgia. I am also still learning about Fibromyalgia myself. In my quest for knowledge I have run into a problem. For those who have Fibromyalgia, you are familiar with Fibro-Fog (a term that will be defined in the Terms & Conditions section) and understand almost immediately what I mean… basically I can’t remember ½ the stuff that I research and have to continuously re-look them up. I believe that if I combine everything into a guide for myself it will make my life easier. By writing down my thoughts I believe that it will help me remember even more.

Table of Contents for Fibromyalgia Blogs

1. Intro
.....a. The Plan
.....b. My Story
.....c. List o’ Links
2. What is Fibromyalgia
.....a. Definition
.....b. Symptoms
.....c. Diagnosis
.....d. Terms and Conditions
.....e. Personal experience
.....f. Misconceptions
.....g. Explaining how we feel
.....h. Sources, Tips, and Hints
3. Doctors
.....a. Dealing with the difficult
.....b. Finding a doctor who works for you
.....c. Drugs
.....d. Holistic
.....e. Drugs vs. Holistic
.....f. Dealing with Insurance
.....g. Dealing with Disability
.....h. Sources, Tips, and Hints
4. Family & Friends
.....a. “But You Don’t Look Sick”/Spoons
.....b. “All over body migraine”
.....c. Don’t give them more than they can take
.....d. Friends who understand
.....e. Support and reassurance
.....f. Sources, Tips, and Hints
5. Diet
.....a. Recommendations
.....b. My experience
.....c. Outside Sources
.....d. Keeping a list
.....e. Shopping Smart
.....f. Sources, Tips, and Hints
6. Exercise
.....a. Recommendations
.....b. My experience
.....c. Outside Sources
.....d. Taking Classes
.....e. Finding your own routine
.....f. Sources, Tips, and Hints
7. Articles
8. Requested Topics & Articles