Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts

Wednesday, December 15, 2010

FM Sort of Day



I have really tried to remain positive for almost a year regarding my fibromyalgia. I have refused to let it take over my life and control what I can and cannot do. As I have mentioned before in previous entries, my worst months for fibro flares have always been February, August and November. This year has been a strange one when it has come to the weather which usually plays a big role in my flare-ups. It is December 15th and I am having one of the worst days I can imagine. Actually the last several weeks have been miserable. Today though I am in such severe pain I just want to scream at the top of my lungs! I am having so much trouble typing this but I thought that I would "journal" today on here.

I wish I could describe it but I can't. Yes as usual, I feel like I have been hit by a train, but the weird sensations & pain in my arms, legs, shoulders, neck, etc. right now are so annoying that they are overpowering my every thought. I can't even watch the movie that is currently on. I can't even believe that I am able to even put a straight thought into what I am typing. Maybe I'm not. Maybe this makes no sense whatsoever. Maybe I'm just venting in my own way.

I really hate to complain & discuss my fibromyalgia with negativity because I know that all that does is bring me and the people around me down. I am trying so hard to fight it but right now the fibromyalgia is winning. I know it won't last forever. It comes and goes. The weather sucks! It's cold! We're supposed to be getting some kind of wintry mix tonight! UGH!!!!

I changed my blog so as not to concentrate on the fibromyalgia and try to make it a more positive escape. Today is not positive. That doesn't mean tomorrow will not be. I am still human and I will have my bad days. Yes I feel like complaining about it today because I am so frustrated.

The thing with FM is for instance, right now out of nowhere I get this sharp pain in my left knee that feelis like someone is stabbing it with a knife & twisting it around. It kind of just moves from one part of my body to the next.

I like to offer solutions and help and once again, positivity, but today is about me & my pain and I am going to whine about it! Althought I really don't think I can type much longer as I lay here on the sofa, miserably uncomfortable.

I think my rant is over. I know there is really no real content or valuable information in what I am typing but just knowing that I cannot always be perfect and happy and perky and yes, positive just makes me normal like everyone else.
I suffer for a reason. I sometimes pray that as I suffer in pain that I can take the pain of others away-if that makes any sense. It does to me. Even though I think like that I still am going to complain and say once in a while "It sucks to be me" even if it's just for a moment or an hour or a day, week, month or year. There are other people worse off than me and I should feel blessed and I do! Life really is great!

Feeling better now! :-)

Thursday, December 9, 2010

Pain & The Holidays


Wow- It sure has been a while since I posted so here I am! Yay! Only thing is I am actually sharing something written by someone else. So much for my creativity :) I read this & wanted to share with my friends who suffer from chronic pain.
The following was written by Paul Gileno from the INvisible Project. In this he also quotes from Michele Gargan, Psyd.
Yep it's a long one. Hopefully I will be back on real soon with some good stuff for ya!

Here is Paul's message:

I think during the holiday time people who have pain and or illness actually have a very hard time. I feel this way for many reasons. One reason is I notice it in myself, I am in more pain, I get frustrated and I get depressed quicker. Holiday times become very busy and in turn we try and do more to stay "normal" at least I do: maybe bake some cookies, or travel to someones house, or spend more time on your feet, get less rest, we spend time worrying about others, and we put pressure on ourselves. Living in pain can be draining as it is and then you add some of these to our days and it is a recipe for disaster. The pain is ignored because we are with family or friends for that momemt and we don't want to loose that moment of joy, because that moment of joy is so powerful and uplifting yet at the same time when those moments are over we have higher pain and all the baggage pain brings. Truthfully we need to balance all of this but not only during the holidays but always. We can have those moments of joy all the time, the problem is for me still to this day is I find myself doing all or nothing. When I feel good, I do to much and when I feel bad I do nothing. It is true I preach to everyone to find a balance each day, I have posted and printed articles written by Doctors on how to find that balance. In all honesty I have tried and found some balance but not enough and during the holidays it seems to just disappear. I want everyone to know your not alone in this and do not be hard on yourself. We are all in this together and we understand all of this and together we can help one another through all of this. BELOW IS THE ARTICLE FROM DR. GARGAN. Hoping you have a low pain and high spirits holiday season. - Paul




Pain and Activity: Use It or Lose It

The human body is meant to move. Yet a person who experiences intense, persistent pain will probably move less and less over time. He or she is also likely to develop a number of “pain behaviors” such lying down for long periods, using unusual postures to brace against the pain, or favoring one side of the body over another when moving. After a while, these pain behaviors take on a life of their own and actually add to the pain.

Long periods of immobility disrupt the body’s pain sensing mechanisms because pain perception relies on feedback from normal muscle activity, particularly the larger muscle groups of the body. Avoidance of activity under stimulates the large sensory nerves and results in more pain when movement is resumed. The habitual use of unusual postures results in secondary pain in other areas of the body as certain muscle groups go into chronic spasm while other muscle groups atrophy from lack of use. So, rather than decreasing pain by avoiding certain patterns of movement, a person is actually increasing his or her pain as well as creating new pain.



A common pattern that I see in my pain patients is a burst of activity on a good day followed by several days of increased pain and immobility. As much as I preach consistently moderate activity, my patients habitually try to get everything done when they feel good. But when they do this, they get nothing at all done in the following two or three days. A prudent and effective pattern to follow is to do the approximately the same amount of physical activity each day. On “bad” pain days, you will have to push yourself, while on “good” days you will have to hold yourself back. If you do this, you will see that you get the same amount done as when you do a burst on Monday and nothing on Tuesday and Wednesday. If you do a little each day, you will get the same amount done without misery on Tuesday and Wednesday.

The following are some suggested techniques you can use to maximize your functioning:

Keep an activity log for a two-week period. Write down everything you do including quantity (how many dishes you washed) and how long you spent at it. You will probably be surprised at how much you do accomplish even though it feels to you as if you are doing little or nothing. Keeping this type of log will make you more aware of your patterns as well as help you set reasonable expectations. Challenge the artificial deadlines you set for yourself. What does it matter if the whole task is completed in one hour or one day, or in three hours or three days? How perfect does the work have to be? Learn to say, “That’s good enough.”
Breathe while you move. Be aware of using your breath to support physical exertion instead of holding your breath against pain. Also be aware of the amount of energy you are using to accomplish a task as well as the quality of your movement. Replace short, quick, intense movements with longer, slower, lighter movements. Elongate the muscles when dusting, scouring, or reaching, and slow down to allow a full range of motion.
Take frequent breaks. Every twenty minutes or so, change positions, change activity, or just rest. It may take you longer to do what you used to do in the blink of an eye. So what? It is important to learn to pace yourself.
Schedule a rest period in the middle of the morning and the middle of the afternoon. A half-hour is usually effective, but some people take an hour or longer. If you have to nap, go ahead. But many people find that just relaxing, listening to music, taking a bath, daydreaming, or meditating is effective in extending their ability to function throughout the day. Go back to your activity log and find the natural breaks where you can insert rest periods. If you think there is no time to rest, you are trying to accomplish too much.
Make conscious transitions between tasks. For example, if you are cooking dinner, take a few seconds to breathe and stretch between peeling the potatoes and molding the meat loaf. This allows you to release muscle tension and adjust your posture as well as tune into your physical effort in order to maintain a steady, easy pace.
Put some type of regular physical exercise into your life. Don’t deprive your whole body of exercise and fitness because part of you is in pain. Yoga is excellent for persons with pain because it increases flexibility and strength while focusing on breathing to support movement. Most yoga instructors will modify the poses to fit your needs. Walking and swimming are also good activities to keep the whole body healthy.
Explore new recreational activities. If you used to play soccer or go skydiving for fun, you have to find new pursuits. Music, painting, gardening, creative writing, and handicrafts do not offer the same physical thrills, but they are relaxing and rewarding. Make time for fun even if you have not completed all the chores that need to be done.
If you have a chronic pain condition, you have to accept that much of your life has changed permanently. This does not mean your life is over. It just means that you can’t do things the way you used to before the pain set in. If you set realistic goals, learn to pace yourself, maintain a moderate level of daily activity, and engage in pleasurable pursuits, you will be able to have a full life.



Michele Gargan, Psyd

Sunday, March 14, 2010


Here is a "Letter From Fibromyalgia" that was sent to me by a friend. I don't know who wrote this, but it seems pretty accurate. Yes it seems depressing, but at the same time it brings awareness to exactly what fibromyalgia is to those who suffer from it. One thing is for sure- Only someone else with fibromyalgia can really understand what you're going through.



A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,


Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.


Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.


I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.


Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!


Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!


In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

Have a nice day!! (ROFL),

Fibromyalgia

Tuesday, December 29, 2009

Happy New Year

I really do hope that everyone had a blessed 2009 and I wish only the best for everyone in 2010.
This past year has had it's ups & downs for me, but I'm still here.
I have grown in so many ways and have finally accepted that I am a new person physically due to my fibromyalgia, so I've kind of been able to get a "new beginning" as the "new" Sara. I'm still the same on the inside, and if you look at me, I still look the same on the outside. I am the only one who really knows my physical capabilities although you still may not notice.
I am so grateful for my family & friends, both old & new, and look forward to the new friendships to come.
I wish you all health, happiness, peace, love, joy, financial stability, tolerance, laughter, I could go on & on....
Big HUGS to all of you ♥

Tuesday, December 15, 2009

Fibromyalgia Awareness 5

Here is a video made by one of my fibro friends, Catherine

Tuesday, November 10, 2009

Infection as One Possible Cause of Fibromyalgia


Infection as One Possible Cause of Fibromyalgia

by Dr. Mark J Pellegrino, MD
October 4, 2009

Excerpted from Chapter 10 of Dr. Pellegrino’s very popular book, Fibromyalgia: Up Close and Personal.* Dr. Pellegrino has seen more than 20,000 FM patients in his practice at the Ohio Rehab Center, and has been a fibromyalgia patient himself since childhood. Though Dr. Pellegrino published these observations before discovery of the XMRV virus, the questions they raise are if anything more relevant today.

All of us involved with Fibromyalgia, either by treating it or having it, have come to appreciate how complicated this condition is.

Fibromyalgia has different types and subsets.(1) More than one factor may be involved in causing it. Causes may be recognized, but the exact mechanism of how Fibromyalgia develops from this cause is not fully known. Most importantly, there is more than one way to get Fibromyalgia; it is an “end point” condition with multiple ways leading to it.

I have compiled a list of probable causes of fibromyalgia. This list is based on my experiences and understanding of the current literature. My opinions on these probable causes may not be shared by everyone. My list of probable causes is as follows:

1. Genetics,
2. Trauma(2),
3. Connective tissue disease,
4. Infection,
5. Catastrophic stress,
6. Chemical exposure.

Like trauma, infection is one of those causes of fibromyalgia that just screams for common sense.

I’ve seen hundreds and hundreds of people whose basic story goes like this: “I was fine, I got a virus, I developed fatigue and pain, and I’ve never been the same since.”

The logical thinking in this scenario is that fibromyalgia was not present before the viral infection. There may have been a hereditary predisposition or a vulnerability, but fibromyalgia was not present. The virus caused the condition to develop and it has been present since the virus and continues to be present. This is a straightforward infectious cause.

Not all infections are as straightforward.

Many people who have fibromyalgia get a viral infection and find it worsens the fibromyalgia. People with active viral infections are at risk for additional infections, particularly bacterial infections which can create additional problems.

Some people with fibromyalgia are more vulnerable to any type of infection because the fibromyalgia renders them more immunocompromised or more at risk for infection. The physician needs to sort out the various possibilities to determine whether an infection is the cause, a consequence, or an aggravator of the fibromyalgia.

The mechanism by which an infection leads to fibromyalgia is probably related to inflammatory or autoimmune changes caused by the infection that starts the fibromyalgia cascade. The actual clinical infection resolves and is long gone, yet fibromyalgia symptoms continue.

• Sometimes, the infecting virus or bacteria may hang around and create a persistent low grade infection which activates the autoimmune responses, thereby “triggering” the fibromyalgia.

• Many times, though, the infection has long disappeared, but permanent changes occurred in the body, and these changes caused fibromyalgia to develop.

Various viral infections can cause fibromyalgia.

• The Epstein-Barr virus which causes infectious mononucleosis is one.

• Cytomegalovirus causes a syndrome similar to infectious mononucleosis.

• Different strains of the influenza virus can also result in fibromyalglia.

• The adenoviruses, especially Type II, cause common colds, bronchitis, and various upper respiratory infections, and may lead to fibromyalgia.

• Human Herpes Virus 6 has also been implicated.

• Reactive fibromyalgia has been described in patients with AIDS and hepatitis.

Sometimes viral titers can be directly measured to demonstrate that an acute infection has occurred. This concentration can be correlated with the clinical development of fibromyalgia. Many times, though, the exact offending virus is not known, but we can still categorize the fibromyalgia as one that was caused by an infection, probably a viral infection, if it fits clinically.

Bacterial infections can also cause fibromyalgia.

I have seen patients who have developed fibromyalgia after sepsis (blood infection) and salmonella infections, and one who, I felt, has gotten it from a Listeria infection. Some research studies found Mycoplasma incognitos and Chlamydia pneumoniae(3) in patients with fibromyalgia and chronic fatigue syndrome.(4) These infectious organisms may be causing some of the symptoms.

Indeed, some of the patients improve with antibiotic therapy. Gulf War Syndrome, in part, may have been related to infections from one of these bacteria. Symptoms of Gulf War Syndrome include fatigue, headaches, depression, joint and muscle pain, sleep disorders, and poor memory (sound familiar?). [Note: As of November 2008, a research panel reported their finding that Gulf War illness is real, and “is the result of neurotoxic exposures,” as discussed in Chapter 10 under Chemical Exposure as a probable cause of FM.]

Fibromyalgia can be caused by yeast and parasite infections.

I have seen some patients who developed it following a severe Candida yeast infection, and others following parasite infections such as Giardia. Most of the time, yeast or parasite infections occur in patients after the fibromyalgia has already developed. These infections may aggravate the preexisting fibromyalgia or cause it to flare up.

Fibromyalgia may predispose us to these infections by interfering with our immune function. On the other hand, these infections can sometimes cause the fibromyalgia by “triggering” the fibromyalgia cascade. Many of the symptoms of a chronic Candida yeast infection(5) - such as fatigue, irritable bowel syndrome, bloating, allergies, altered immune response, and skin conditions - overlap with fibromyalgia symptoms. This can make it difficult to “separate” the two conditions and determine cause and effect relationships.

As I’ve mentioned, some infections come in, do their damage and disappear. The infectious agent is no longer present in the body and thus can’t be detected at a later point in time. Other infectious agents may hang around in the body and establish a chronic infection; one that perhaps can be detected with blood tests.

What remains to be seen is whether these chronic infections can be eradicated with antibiotic treatment and, if so, will the fibromyalgia symptoms disappear? Or has the fibromyalgia already established itself as a separate entity which does not disappear with the antibiotic treatment?

Hopefully we will have these answers in the near future. [But]… one thing is certain: We will continue to learn more about fibromyalgia and understand it better.
___

1. See also Dr. Pellegrino’s articles on: “The Fibromyalgia Spectrum – Part of the Big Picture in Understanding Fibromyalgia” and “Fibromyalgia – Ultimately a Disease of Amplified Pain.”

2. See also Dr. Pellegrino’s article on: “Fibromyalgia as a Complication of Injuries”

3. For more on this subject, see “Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia – An Opinion,” by Patient Advocate James Kepner, from the Chlamydia pneumoniae Help website.

4. See “Evidence for bacterial (mycoplasma, Chlamydia) and viral (HHV-6) co-infections in chronic fatigue syndrome patients,” by Dr. Garth Nicolson and Dr. Darryl See.

5. See also Dr. Pellegrino's article on: "Candidiasis - Yeast Infection and Nutritional Repair."

* This article is excerpted with kind permission from Dr. Pellegrino’s very popular book Fibromyalgia: Up Close & Personal, © Anadem Publishing, Inc. and Mark Pellegrino, MD, 2005, all rights reserved. This book may be ordered in the ProHealth.com store (see new products).

Note: This information has not been reviewed by the FDA. It is generic and is not intended to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

Tuesday, October 13, 2009

Lying Down Helps with Fibromyalgia Pain, Fatigue and Anxiety

Here is an article written by my friend Christine, describing an excerpt from the book The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia, which is an awesome book that has really helped me to learn how to manage my fibromyalgia. Pacing is definitely one of the most important things in changing your lifestyle. This was very hard for me to do at first, but you finally get to a point where you have no choice but to take a break and learn your limitations if you want to be able to function.

Lying Down Helps with Fibromyalgia Pain, Fatigue and Anxiety

Finding the right balance of activity and rest is one of the biggest challenges for people managing Fibromyalgia (FM) and/or Chronic Fatigue Syndrome (CFS). The good news is that you can increase your control over your condition by consistently practicing what is often referred to as “pacing”. This means understanding the limitations imposed by your FM/CFS and learning to adjust your activity levels for increased comfort. By using pacing strategies you can bring greater stability to your life and prevent or greatly reduce flares.

Bruce Campbell, Ph.D., a recovered CFS patient, created and directs a CFIDS and FM Self-Help program. This program can be found at www.cfidsselfhelp.org along with a textbook called, “The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia”. In my opinion, this is the best self-management approach I’ve found to date.

In his chapter on pacing, Dr. Campbell defines rest as “lying down with your eyes closed in a quiet place”. He uses the term “pre-emptive rest” which means resting daily according to a planned schedule that works best for each individual with FM/CFS.

One of the best ways to manage FM/CFS successfully with pacing is to alternate activity with rest breaks. Lying down is the most restorative way to take a rest break for people with FM/CFS. When taking a rest break, lie down on a bed, the floor, a couch, a recliner or similar place that allows you to be as comfortable as possible.

Lying down for a rest break should be tailored to what works best for you. It should be a time of complete stillness and quiet with no distractions or activity (i.e., no reading, watching TV, talking to someone, etc.). Your eyes are closed and you are “letting go” of the activities you need to do until you have completed your rest break.

This is your time to just “be”. You might take a nap, listen to soothing music, meditate or listen to a guided relaxation, or just lie still and gently allow your thoughts to “settle down”. The length of your break depends on your individual needs and other activities you have planned. Experiment to see what works best and is most restorative—each day will be a bit different.

For myself, I find lying on the floor (I have a rug covered by a soft blanket) and relaxing for 15 to 30 minutes a few times a day helps me prevent fatigue, pain and anxiety. My breaks always make me feel more calm and tranquil. I enjoy very gentle yoga and stretching before and after my break and find meditation to be the best way for me to restore my energy.

Alternating your daily activities with rest breaks can help you pace your life and avoid crashes and flares. I invite you to send me your suggestions and successes with “lying down” rest breaks and how they help you reduce your FM/CFS symptoms.

Copyright Christine O’Dell, 2009


Wednesday, September 23, 2009

Understanding Fibro Fog


A Little Something to Help You Get Started Thinking About
Fibro Fog:
(Kitchener-Waterloo Fibromyalgia Newsletter)


You know you have fibrofog when......

You boil the kettle dry three times to get one cup of tea.

You read a note you wrote to yourself to pay a bill, and you wonder who the heck is Bill.

You call the school twice, to let them know your child is at home sick.

You can't disconnect the dishwasher from the kitchen tap, because you didn't turn the water off first to release the pressure.



Many people with Fibromyalgia like to make jokes about Fibro Fog because it's often embarrassing and even frightening. A common scenario: You're having a conversation with someone when suddenly, in the middle of the sentence that's coming out of your mouth, your brain seems to turn itself off. Your mouth hangs open as you desperately search for what you were just saying two seconds ago. But it's no use. Where there once was a clear distinguishable thought in your head, there is nothing left but a vacuous black hole of nothingness. This kind of short-term memory loss is experienced by every Fibromyalgic.

"The wheel is turning, but the hamster left town," as Devin Starlanyl and Mary Ellen Copeland put it in their book, Fibromyalgia and Chronic Myofascial Pain: A Survival Manual, which devotes an entire chapter to Fibro Fog and other cognitive deficits. "You may spend hours every day trying to find various items, like your keys. (After a while, you may feel as though your mind is one of those misplaced items.) You may not recognize things when they are right in front of you but are not in their accustomed place, or when it's in a different package or form."

Research at the University of Michigan has validated the reality of fibro fog. The researchers observed a similarity between neuroendocrine dysfunction in patients with FM and older but otherwise healthy people. They compared three groups of people: First, a group of people with FM. Second, a control group of healthy people who were similar to those with FM in age and educational background. And third, a group of healthy people with similar educational backgrounds as the others, but who were 20 years older than the other two groups. Because cognitive function begins to decrease, even in healthy people, as soon as adulthood is reached, the three groups were given various age-sensitive neuropsychological testing to see the extent to which Fibromyalgia affected cognitive dysfunction as compared to the normal cognitive loss caused by aging.

The researchers found that people with Fibromyalgia do not have the same mental agility as healthy people of the same age. Their verbal fluency, long-term memory, and working memory (how much information you can use, manipulate and store at one time) was at the same level of capability as those in the older group. The people with Fibromyalgia performed even worse, scoring lower than the older group and showing a serious deficit when it came to vocabulary, a cognitive function that doesn't normally decline with age.

The findings of this research is important in two ways: First, it validates cognitive deficits in people with Fibromyalgia. Second, whatever is going on to cause the cognitive deficits in people with FM, it is not the same as that which occurs with natural aging. (See: Starlanyl & Copeland, 17:203)

Another study done in 1999 by Glass, Park and Crofford researched metamemory, which is our ability to accurately assess our own memory skills. The three researchers used a control group and a third older group of people, just as in the reported study above. Not only were the three scientists after how well Fibromyalgics could assess their own memory skills, they also wanted to rule out depression and poor motivation as possible causes of cognitive dysfunction. The FM patients were asked how well they felt they could perform simple tasks, such as dialing a telephone and shopping for a few items without a list. The Fibro patients reported lower memory capacity, less control over their memory function, more cognitive deficits, and greater memory deterioration than the older group. The study found that the people with Fibromyalgia were entirely accurate in their assessments. In fact, the Fibro patients used more memory improvement strategies, like lists and calendars, and were more highly motivated as to the importance of keeping a good memory, and although they had more anxiety about memory function than the other two groups, their cognitive dysfunction was not a result of depression.

"These patients were trying to make the most of what they have in every way they knew how. They reported a greater perception of loss than the older control group did, even though their memory loss was similar," says Starlanyl and Copeland, who also report that the study found "this as an accurate perception, since the cognitive function of the FM patients is not age-appropriate." (See: 17:203).

And let's not forget that on top of this general deficit of cognitive function every Fibromyalgic has, there are also those "attacks" of Fibro Fog. Not only can Fibro Fog vary in severity among people with Fibromyalgia but it also can vary in intensity with each individual from hour-to-hour, day-to-day, month-to-month etc. There's no telling when a particular nasty "attack" of Fibro Fog will hit on top of the every day cognitive problems of someone with FM.

This particularly nasty symptom of Fibromyalgia can range from forgetfulness and being muddled headed, like finding your wallet in the refrigerator, to a state that is quite severe. For instance, someone with an extreme case of Fibro Fog might be returning home from the grocery store they've been going to for the last 10 years. They'll be traveling the same route home they take every single time they go to their grocery store. Suddenly, nothing seems familiar. They don't recognize landmarks and everything looks different. They very easily become lost, traveling round in circles or worse, "coming to" in another town or city entirely.

There are a few theories as to why FM sufferers experience Fibro Fog. John Lowe believes the Fibromyalgic's brain receives an insufficient delivery of oxygen, glucose, and other substances the brain needs to function properly. Inadequate thyroid hormone regulation may be causing the metabolic rate and the flow of blood to the brain cells to be defective as well. (See: Wrutniak-Cabello, C., F. Casas, and G. Cabello. 2001. Thyroid hormone action in mitochondreia. J Mol Endocrinol 26(1): 67-77.)

Research conducted with Single Photon Emission Tomography scans show that people with FM have decreased blood flow in the right caudate nucleus of the brain and also in the left and right thalami. It's speculated that the decreased blood flow could be caused by a neurotransmitter dysfunction or by a problem in the glial cells. Glial cells are crucial to our brains because they're active in brain cell permeability, meaning they allow much needed substances to pass into the brain's cells, such as electrical ions. Without this permeability, brain function deteriorates.

There's also a bioelectric connection between glial cells, ion exchange, and cellular swelling in the brain. Because the glial cells have such an increased permeability in the brain of a Fibromyalgic, far too much fluid is allowed into the brain cells. These swollen cells not only account for migraines (where the menningeal blood vessels become hyperpermeable), a common accompanying illness many Fibromyalgics suffer, but also for a generalized increased pressure, which in turn affects cognitive processes. Therefore, these defective cognitive processes, or Fibro Fog, may be due to this flooding of the brain cells and could account for reports from those suffering with FM that their brains feel swollen. In fact, Starlanyl and Copeland say perhaps the brain is really physically swollen. (See: 17:201) But how does Fibro Fog physically feel to a Fibromyalgic that is suffering from it? The sensation, many patients report, feels like the brain has become very heavy and big and slow in a suddenly too small skull.

With migraines, this sensation of heaviness and largeness can grow and grow, until the brain feels like it is trying to push against the inside of the skull and any minute the head will explode. The pressure inside the skull is enormous and in many will cause actual swelling of facial features, protruding eyes and swollen gums. Obviously this is all excruciatingly painful. In fact, it is not all that uncommon for someone with a migraine to have the urge to or actually physically hit their head against a wall repeatedly in a useless attempt to rid their heads of the pressure from the swollen brain cells. Motor actions degenerate and to move their head even slightly brings monumental amounts of pain cracking through their brain and skull. The swollen, pressured brain cells can also cause sensory malfunctions like double vision, extreme sensitivity to light and sound, halo-like rings around light sources, patches of white or black in the vision field and much more.

Starlanyl and Copeland also report that a Fibromyalgic's chronic pain itself could be affecting their cognitive abilities: "In one study, researchers found that some chronic pain patients performed some tests more poorly than patients with head injuries. This study suggests that pain can disrupt cognitive performances that depend on intact speed and storage capacity for information processing. Processing pain occupies most or all of our thought processing networks, thereby interfering with concurrent cognitive tasks such as thinking, reasoning, and remembering." (See: 17:201)

In other words, if someone with FM suffers an increase in their pain levels, like they commonly do in the morning, tasks like picking out what clothes to wear can become mind boggling and an insurmountable job.

Some people can spend days at a time in a Fibro Fog with their cognitive deficits worsening: Unable to speak correctly. Unable to read or to write a sentence a child could do. Unable to remember familiar things like the names of relatives or how to spell "cat". Unable to turn on the stove not only because they forget the mechanics, but also out of the fear they'll forget they're cooking something and start a fire. Unable to remember things, looking everywhere for their cars keys until they're exhausted and can't go out to do their errands and then finding the keys by accident in the freezer with the ice cream they bought two days ago. Unable to take the same amount of sensory input someone who doesn't suffer from Fibromyalgia can, such as exposure to large crowds, or a lot of noise, or the multitudes of visual and physical actions of driving for hours on end, especially at night when light sensitivity makes it an even more difficult task. Unable to concentrate or socially interact because their intense amounts of pain are interfering with their cognitive skills to the point of distraction. Unable to do all of these things just listed and so much more because their minds function at a cognitive level worse than someone far older than them. And take note that all these many negative and life restricting things listed and described as belonging to someone suffering with Fibromyalgia only focuses on what Fibro Fog does to them. All the other symptoms and difficulties, which descend on someone with Fibromyalgia, like extreme pain and chronic fatigue to name only two of the dozens a Fibromyalgic can suffer from, were not even taken into consideration when describing how a Fibromyalgic lives a limited, constricted and socially isolating life.

Monday, September 21, 2009

4 Treatments for Fibromyalgia By Mehmet Oz, MD

I was just going to provide a link for this article, but decided to copy from O, The Oprah Magazine Website for easier reading. You can also click on the title above and it will take you to the original article on the website.

4 Treatments for Fibromyalgia

Mehmet Oz
Photo: Ben Goldstein/Studio D

Dr. Oz will see you now! In his first O column, he analyzes the different treatments for fibromyalgia.

Defining Fibromyalgia: Though classified as a disorder of the musculoskeletal system, the condition is now seen as a central nervous system problem. Symptoms include increased sensitivity to pain, achy and stiff joints, fatigue, and specific tender points on the back, chest, arms, and legs. Migraines, sleep disorders, and irritable bowel syndrome are also common complaints. Up to 3 percent of the population may suffer from fibromyalgia, but with no clear cause, the condition is difficult to diagnose.

Western Medicine Approach: A formal diagnosis for fibromyalgia didn't exist until 1990, but now there are three FDA-approved meds to combat the pain. Still, says Nancy Klimas, MD, director of the Allergy and Immunology Clinic at the University of Miami, "there is much more to treatment than a pill." Strategies are needed to improve sleep, stretch and restore symmetry to muscles that have been shortened by spasm, and raise overall conditioning through exercise.

Energy-Based Approach: Practitioners believe the root of fibromyalgia is a disturbance in nerves that blocks energy. The disturbance, says Devi S. Nambudripad, MD, PhD, and a licensed acupuncturist, is caused by sensitivities to substances ranging from pollen to vaccines to chemical agents in fabrics. Anxiety and depression may also play a part. Practitioners use acupuncture to release energy and allergy testing to identify problem substances.

Psychological Approach: "The pain of fibromyalgia is not caused by depression," says Leonard Jason, PhD, professor of psychology at DePaul University, "but depression can deepen a patient's experience of pain." Mental health professionals may play a complementary role in treatment, but it's a vital one. Cognitive behavioral therapy can relieve depression and help patients identify sources of stress that magnify their symptoms.

Nutrition-Based Approach: Fibromyalgia is a systemwide breakdown, says Jacob Teitelbaum, MD, medical director of the nationwide Fibromyalgia & Fatigue Centers. After suffering from the disease in the 1970s, he developed his own protocol; in studies, patients improved by as much as 91 percent. He recommends supplements to help sufferers sleep, balance hormones, boost immunity, and improve nutrition. He also prescribes regular exercise. (Try Dr. Oz's 20-minute workout plan)

My Recommendation: Because Western medicine was slow to accept fibromyalgia, it is behind in its work; this is an area where patients will want to take a serious look at alternative approaches. Energy-based medicine could offer some important advances in treatment over the next decade, but since it has yet to be tested by independent research, I think it's premature to base your therapy solely on this approach. I'm more impressed by Teitelbaum's supplement regimen, and not only because he has tested his theories: I've put patients on this program with very good results. I would add counseling, as it should always be a part of fibromyalgia treatment. If after a couple of months you don't see improvement, talk to your doctor about drug therapy.

Friday, September 18, 2009

Sick & Tired of Being Sick & Tired


So here I am having another FM flare-up. Once again the weather is a contributing factor I'm sure.
This past weekend I went to a baby shower for Susanna (Jennifer's Stepdaughter) and had a very nice time. It was great to see everyone, including, Jennifer & Payton. I knew that this would wear on me because of the drive to Gastonia and just the fact of being somewhere for that long a period of time.
This whole week has been torturous for me and yesterday was the worst day of all. I literally could not move and got into one of my "why me" moments which I do experience every once in a while. Yes I try to think positive but sometime the pain does overpower that and you can't think of anything else. I actually cried myself to sleep last night. Yes even positive people have bad days too. I am human but I have decided not to let it stop me or take over my life.
I woke up today feeling pretty much the same. The old me would have stayed in bed all day, believe me I really wanted to do that today, but I had plans. My friends Brenda & Beth took me to lunch for my birthday and we had a great time. After that I even went and got my Pandora Teapot charm that I have been wanting for a long time with some money that my godmother sent me.
I refuse to let this thing win! Today is Payton's 3rd birthday and I can't believe how fast she is growing. We will be going out to Jennifer's tomorrow to celebrate. I will be there- no matter how bad I feel. I have to live my life and enjoy every minute of it. I know there will be times when I will have to cancel on someone, but I am going to try my best to pace myself, listen to my body, do what I can while I can. I do need to rest though, and I plan to do that starting Monday.
Once again- another confusing blog by "me"

Wednesday, September 16, 2009

What Should an FM or ME/CFS Patient Do About the Swine Flu?


What Should an FM or ME/CFS Patient Do About the Swine Flu?

by Dr. Charles Lapp, MD*, September 8, 2009

From the August issue of Dr. Lapp’s free e-newsletter (www.drlapp.net/news.htm)

In June 2009 the World Health Organization declared that the spread of a novel H1N1 Swine Flu had reached pandemic levels. At the time of this writing, the swine flu has become widespread in the southern United States, especially the Southeast. However, the illness prevalence, the number of doctor visits, and the morbidity is still no worse than the usual seasonal influenza. It is expected that the number of cases will increase as school resumes because H1N1 is rapidly spread by coughing and sneezing, hand-to-hand, or hand-to-body contact.

Many patients have been alarmed by reports of the seriousness and infectivity of this new flu, and have asked if vaccination is advisable. Our usual recommendations on influenza vaccinations are that:

• That they have been known to trigger flares of CFS/ME/FM,

• That many PWCs to do not respond to vaccination anyway,

• And that viral infections are uncommon in most PWCs due to upregulation of the immune system.

Therefore, we would recommend seasonal flu vaccination only if you have tolerated these well in the past and if you are at high risk.

Because the current swine flu is so novel, a new vaccine needs to be produced. This is not expected to be available until late October.

Unlike seasonal influenza, H1N1 mostly attacks younger age groups, particularly under age 24. Vaccine availability will be limited, so it will be offered to specific target groups first. These include:

• Pregnant women,

• People who live with or care for children younger than 6 months of age,

• Healthcare and emergency medical services personnel,

• Persons between the ages of 6 months and 24 years old,

• And people ages of 25 through 64 years of age who are at higher risk for novel H1N1 because of chronic health disorders or compromised immune systems.

We do NOT consider the immune system in CFS/ME to be compromised to the point of being “high risk” unless there is a history of frequent viral infections and/or pneumonia.

Based on information available at this time, H1N1 immunization may not be available to the majority of our patients until late Fall, perhaps well after the swine flu peak. Therefore, we are recommending that our patients:

• Avoid crowds and sick people (especially coughers and sneezers!),

• Wash your hands frequently or use alcohol-based hand cleansers,

• Avoid touching your eyes, nose, or mouth with your bare hands.

The symptoms of novel H1N1 flu virus in people include fever, cough, sore throat, and runny nose, body aches, headache, chills and fatigue, possibly diarrhea and vomiting. If you suspect that you have contracted swine flu:

• Immediately contact your primary care office or Hunter-Hopkins for advice and possibly medication

• Avoid contact with others for at least 24 hours after the fever subsides

• Consider wearing a surgical face mask if others are around you

• Recognize these warnings signs and seek medical assistance immediately for difficulty breathing or shortness of breath, pain or pressure in the chest or abdomen, sudden dizziness, increased confusion, severe or persistent vomiting, and flu-like symptoms that improve but then return with fever and worse cough.

In lieu of swine flu vaccination two antiviral medications can be taken to reduce the symptoms and severity of the illness.

These must be started within 48 hours of illness onset, and are not recommended for prevention of the flu. The adult doses of these medications are:

Tamiflu / oseltamivir (75 mg tablets taken twice daily for 5 days) or

Relenza / zanamivir (two inhalations twice daily).

For more information go to the Center for Disease Control website at www.cdc.gov/h1n1flu/

* Dr. Charles Lapp, MD
Hunter Hopkins Medical Center
Charlotte, North Carolina
drlapp@drlapp.net
10344 Park Road, Suite 300 - until October, then:
721 Carmel Executive Park Drive, Suite 320
Charlotte, North Carolina 28226
____
Note: This information has not been evaluated by the FDA. It is general and should not replace the attention and advice of your personal physician. Nor is it meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

Saturday, August 8, 2009

New Attitude


So I said I might bring fibromyalgia back to the blog once in a while, well here it is. Yes I still have FM, yes I still have pain & fatigue and other symptoms but a lot has changed at the same time.
After not finding a medication that will work for me, just the occasional hydrocodone, which really doesn't relieve the FM pain just the other pains from arthritis, etc., I was partaking in many support groups both online and a local one here in Charlotte. I even started several groups myself, and my blog was solely about FM. I thought this is great to be able to share with other people who actually understand what I am going through and whom I can talk to. I thought this was very therapeutic until I noticed that my symptoms seemed to be getting progressively worse. I just blamed the FM as a progressive disease, which the doctors say is not. Well I decided to take a break from all of my FM groups and I stopped going to my local support group and something amazing happened--- I started feeling better! I have always believed that you take in the energy of what surrounds you, and if I am grouped with a bunch of people that are in constant misery, then I am going to feel it too, also being the somewhat empath that I am, I do feel what others feel. Oh I'm not cured, in fact I am in extreme pain right now as I type this, but yet I feel great! I know this can not make sense, but it does to me. I hate the pain, but I accept it and I have to live with it and I'm ok with that.
I haven't given up on my fibro friends who need my support, for them I will always be here, and I will always advocate for fibromyalgia awareness. I still drop in on my online groups about once a month to check in and say hi because I am still one of them-I just choose not to write about it everyday and about how life sucks and how I wish I would die-- No- I don't feel that way. Life is good! I am happy and fortunate to have what I have in this life and path that has been chosen for me.
The mind is amazing- creative visualization works- you have the power to control how you choose to feel.
BTW- I am also seeing a reflexologist who might have something to do with this change too but I think I need to take the credit for my mindset, because only I can control that.
Always smile, think positive, spread that positive energy to those around you- it is amazing what can happen.

Sunday, July 5, 2009

Hectic Week


So I've had kind of a hectic week. 1st of all I am having a major FM flare and so my pain has been excruciating and I have had the usual fatigue as well. Stress also aggravates this. Amongst other things, one of my good friends from high school, Francis, had colon cancer surgery on Tuesday. They took 9 inches of his intestine. He is just waiting on the biopsy results from the lymph nodes which he should have tomorrow or Tuesday. I am praying really hard that everything comes back clean. He also seems to have found someone that makes him really happy, she also went to our high school and I am so happy for both of them. They really deserve happiness.
Anyway, on Wednesday, on of my BFFs, Rockin' Robin, had surgery on her tibia from a fracture that she got in an accident. They had to put a plate in her leg so that she could walk normal. She has to keep weight off of it for 8 weeks. Bless her heart- She is an awesome person with a huge heart of gold. The surgery turned out well. keeping her in my prayers too.
I have also had several things going on this week- I just feel crazy!!
My lack of motivation has really shown itself this week. I have been sending daily quotes to over 200 people every week-day for I don't know how long and this past week I didn't send them. I am using the excuse that it was a holiday week and nobody needed extra junk in their e-mail. I also haven't prepared the ones for this coming week. I don't know what to do.
I had some mailings to get out from the HOA to all the neighbors regarding speed limits, which I did manage to do. I am also supposed to be working on the neighborhood website but I haven't had a chance (or motivation) to do that either. I really need to get on the ball. Maybe if I organized my office some then maybe it would make it easier for me to work. I will try to work on that tomorrow- not procrastinating- it IS 10 pm ;-)
So many people have died this week, both famous and personal acquaintances which is really sad for me.
John took the week off to relax- I hope he was able to get some relaxation before returning to work tomorrow.
This is a boring entry I know, but oh well, I guess it is more for my benefit.
I hope my pain starts to diminish soon so that I can feel active again. Still sucks to be me but that is who I am and I accept it.

Tuesday, June 9, 2009

I've changed my blog

I have decided to change directions with my blog. Instead of concentrating solely on Fibromyalgia which seems to bring me down, to a more up-beat positive place. Don't get me wrong, I may still vent frustrations and complain about FM, but I feel like I need to be thankful for everything I have and spread positivity and make this a place where anyone can share.
I hope to cover a lot of different topics, ideas, etc., anything I think is worth sharing with my wonderful friends.

Wednesday, May 6, 2009

Dealing with Fibro-Fog



Dealing with Fibro-Fog

By Karen Lee Richards

My best friend from Florida came to visit me here in Tennessee so she could take fall leaves back for the children in her Montessori pre-school. In our quest to find the most beautiful leaves, we headed for the Blue Ridge Parkway, well known for its stunning scenery. No sooner had we gotten on the parkway than we found ourselves in the midst of one of the worst fogs I ever experienced. We could literally only see about three feet in front of the car. I was struck by was how similar it felt to being in the midst of a severe bout of fibro-fog!

The cognitive dysfunction so many of us with fibromyalgia deal with daily is aptly described by the term “brain fog,” or by my favorite pet name “fibro-fog.” Our minds feel clouded by a thick fog. We are unable to see (or think) more than a few feet (or minutes) ahead.

See if any of these fibro-fog experiences sound familiar. Do you ever…

…get ready to walk out the door and realize you have no idea where the car keys are?

…put the milk in the cabinet and the cereal in the refrigerator?

…run into an old friend and forget her name?

…find yourself driving down a road unable to remember where you are going?

…buy something, not remembering that you bought the exact same think a week ago?

…try to describe or explain something but you cannot think of the word you want to use?

…stop in the middle of a conversation because you cannot remember what you are talking about?

…forget when you last took your meds?

…bounce a check because you added instead of subtracted?

…show up for your doctor appointment on the wrong day?


The forgetfulness, difficulty concentrating and confusion characteristic of fibro-fog is occasionally amusing and often frustrating. But sometimes it can be downright dangerous –– like forgetting that you have chicken frying on the stove or not noticing that a traffic light has turned red. While it is good to be able to laugh at yourself over the little incidents of forgetfulness, it is important to take steps to improve your cognitive functioning so that you do not jeopardize the safety and well-being of yourself or your loved ones.

Increase Blood Flow

Although a clear-cut cause for fibro-fog has yet to be identified, various brain-imaging techniques have clearly shown that the majority of people with fibromyalgia and/or chronic fatigue syndrome have decreased blood flow, and thereby decreased oxygen, to specific areas of the brain. Therefore, the first step in dealing with fibro-fog is to try to increase blood flow and oxygen to the brains. Here are a few tips to get your blood flowing northward:

  • Exercise –– Exercise increases blood flow and oxygen to the brain. Exercising with music doubles the effectiveness. Charles Emery, Ph.D., a clinical psychologist at Ohio State University in Columbus, conducted a research project in which participants were tested for mental performance after exercising both with and without music. Participants performed more than twice as well on a verbal fluency test when they exercised with music.
  • Sleep – Getting enough sleep is critical for good brain function. Not coincidently, getting good restorative sleep is one of the major problems for people with FM. The foods you eat can have a significant effect on how well you sleep. Some foods, like milk and turkey, can help you fall asleep. Others, like caffeine-laden drinks, chocolate, excessive sugar, and MSG, can cause agitation and keep you awake. For additional information about improving sleep, go to the National Fibromyalgia Associations website, www.FMaware.org. If you do a search for “sleep,” you will find several helpful articles.
  • Breathe –– While breathing seems like a normal, involuntary action, the fact is that most people with FM actually hold their breath much of the time. Although holding your breath is a natural reaction to pain, it deprives your body of necessary oxygen. Try to make yourself aware of times you are unconsciously holding your breath and make a conscious effort to take two or three deep breaths several times a day.
  • Check medications –– Certain drugs can increase brain fog. Some of the medications that may make your memory worse are: calcium channel blockers (for hypertension), analgesics (for pain), hypnotics (for sleep), and antihistamines (for allergy or sinus problems). If you suspect that one or more of your prescriptions are increasing your fibro-fog, talk with your doctor to see if a lower dosage or a different medication might help.
  • Improve nutrition –– Recent research suggests that getting enough of certain nutrients –– particularly iron, zinc and B vitamins (especially folic acid, B6 and B12) –– may help cognitive functioning…or at least prevent it from getting worse. Iron and zinc are found in meat, poultry, seafood, whole grains and dried beans. The B vitamins are found in whole grains, meat, poultry, seafood, eggs, dairy products, leafy green vegetables, beans, peas and citrus fruits. Additionally, it is important to fight the free radicals seeking to damage our brain cells by eating a diet rich in antioxidants. Antioxidants are found in fruits and vegetables, especially those with the darkest and brightest colors, like spinach, carrots, tomatoes and red bell peppers.
  • Consider supplements –– If you feel your diet is not supplying adequate amounts of the nutrients mentioned above, you might consider adding one or more vitamin and mineral supplements. Other supplements that some have found helpful in lessening fibro-fog are Coenzyme Q10, Gingko Biloba and NADH (a coenzyme made from vitamin B2). Always check with your doctor or pharmacist before taking any supplement to make sure there are no dangerous interactions with medications you may be taking.

Mental Exercise

In addition to physical exercise, emerging evidence is showing that mental exercise can also help improve memory, concentration and problem-solving abilities. Mental exercise can be any activity that causes your mind to think logically, focus, strategize, sort, calculate, or create. Choose at least one mental exercise that you enjoy and spend some time each day “working out” your brain. Following are examples of a few brain-exercising activities:

  • Work a challenging crossword puzzle.
  • Solve a word search puzzle.
  • Put together a difficult jigsaw puzzle.
  • Play a game that forces you to think or strategize, like Scrabble, chess or bridge.
  • Make up a fairy tale.
  • Choose a Norman Rockwell painting and create a story about it.
  • Memorize a poem, proverb or Bible verse.
  • Read a book.
  • Play a musical instrument.
  • Learn a new language.
If you find yourself in the midst of a thick mental fog, do not allow yourself to get lost there. You can work your way through it and find some clarity again. It is ironic that for about a month prior to writing this article, I went through one of the worst bouts with fibro-fog I have ever experienced. I felt like I was living in la-la land. But, using many of these tips, I found my way through the fog…and so can you.

___________________
Reprinted with permission of the National Fibromyalgia Association from Fibromyalgia AWARE, December 2004 – March 2005.

Tuesday, April 14, 2009

Checking In



Well it's been a while. I've had good days and I've had bad days.
The weather was nice for a while and I was able to do a little gardening and I was so excited. Something I love to do but can't just do it whenever. My allergies have been killing me though- I am completely miserable.
Easter was so nice here at our house. We had the family over and I actually had a green day that day so that I was able to enjoy it. What a difference that makes.
I think I am still half asleep so if I am not making any sense, that would be one explanation. I am really not in a writing mood but just thought that I would check in.

Tuesday, March 31, 2009

Article About My Support Group



This article was printed in today's Charlotte Observer about my ME/CFS/FM Support Group. Luckily I am not in the picture but you can see my mom's right arm in the 2nd row on the far right-LOL.
This group has been very helpful to me and Dr. Lapp is an amazing doctor who is internationally recognized as one of the best FM doctors in the world.
Just so you know, the clutter question came from me since I noticed so many people wanted to clean areas, including me-My target was to work on clearing off a table in my office, 3 times a week, for 30 minutes. Well I haven't been able to start that one yet.
Anyway-here is the article:


Sick and tired finds company
By Karen Garlochkgarloch@charlotteobserver.com
Posted: Monday, Mar. 30, 2009

Dr. Charles Lapp leads a series of free classes at the Sharon Presbyterian Church in Charlotte for people with chronic fatigue syndrome & Fibromyalgia.


Most of the 15 people gathered for a support group this month did not look sick.
But when they began to talk about their common conditions, the list of symptoms went on and on.
Pain, fatigue, depression. Insomnia, nausea, headaches. Muscle spasms, ringing in the ears and sensitivity to heat, cold or light.
Dr. Charles Lapp has heard all of this before. He's medical director of the Hunter-Hopkins Center, a Charlotte clinic that focuses on patients with chronic fatigue syndrome and fibromyalgia. Many group members are his patients.
But instead of letting the support group descend into gloom and despair, Lapp tries to lead with hope and help.
He's currently offering a new series of free classes that help patients take back some control over their lives and better cope with the main symptoms: pain, fatigue and insomnia.
“They're all related to one another,” Lapp said. “If one gets worse, the others get worse. Conversely, if you treat one and it gets better, the others get better, too.”
Some 9 million U.S. adults suffer from chronic fatigue syndrome, but many go undiagnosed, according to the Centers for Disease Control and Prevention. Fibromyalgia affects as many as 6 million, says the CDC.
It's often difficult to distinguish between the two medical conditions. Some experts believe they are separate disorders. Others feel they are different facets of the same disorder. Pain is the primary symptom of fibromyalgia; fatigue is the main symptom in chronic fatigue syndrome.
The course Lapp is teaching was developed by Bruce Campbell, a California educator and psychologist who based the curriculum on his own experience in overcoming these often-misunderstood conditions.
Campbell's personal prescription involved “enforced rest” – setting limits and taking short rest periods every day – in addition to regular exercise, emotional support and medicine for symptom control.
“He was able to totally recover in five years,” Lapp said. “He can easily hike 10 to 15 miles, which is the envy of many patients with chronic fatigue syndrome and fibromyalgia.”
Clutter is common
At the recent support group meeting, Lapp asked the members – mostly women – to identify small, specific tasks they'd like to accomplish. Some mentioned the need to go to bed earlier or exercise regularly. Several wanted to organize their homes and get rid of clutter.
The clutter problem is almost universal with these patients, Lapp said. “They get so distracted that they start multiple projects, and the house ends up … a mess. It's overwhelming.”
As always, the group members offer ideas and support.
“Instead of trying to take on the whole room, maybe you could take on a table,” suggested Maggie Reed, 47, of Fort Mill.
“Or a corner of the table,” said Leslie Vann, 56, also from Fort Mill.
When Lapp asked for ideas on how to prevent fatigue and pain, suggestions included hot showers, massage, deep breathing and petting the dog.
Reed, who has suffered from chronic fatigue syndrome and fibromyalgia since 2006, said she visualizes a backyard pool and the landscaping she'd like to have around it to get her mind off pain or stress. “I go to what I call my ‘happy place,'” she said.
Kebbie Cannon, 45, of Waxhaw, who has had chronic fatigue syndrome for 22 years, said she tries not to get too cold because that causes her muscles to tense up in pain.
To the contrary, Reed said she works to avoid getting too hot. “I start to feel like I'm suffocating.” Several in the room said they also have trouble with heat.
Reed almost cried for joy when she heard that. Until she made these friends, she felt lonely and misunderstood.
Reed was a data analyst at Transamerica in Charlotte before going on medical disability last summer. “It just got harder and harder for me to continue working,” she said.
Having worked since she was 17, it's hard to be at home, “barely able to do a load of wash” or take care of her 13-year-old daughter. Because she doesn't look sick, she says other people view her skeptically. “I look fine, and I'm a large woman. You're automatically perceived as being fat and lazy. There's tremendous guilt and isolation,” Reed said.
The support group helps. “You can get together and make friends and say ‘I can't do it today,' and they understand,” Reed said. “We've had to create our own community because we're the only ones who understand what we're going through.”

What is chronic fatigue syndrome?
In the mid-1980s, chronic fatigue syndrome was first identified as a cluster of symptoms in clusters of patients in a few spots in the United States. Dr. Charles Lapp, then a family physician in Raleigh, identified one such outbreak among all the members of the N.C. Symphony Orchestra. Seven remained ill with chronic fatigue.
“Patients started coming to me with persistent flu-like symptoms,” said Lapp, now medical director of Hunter-Hopkins Center in Charlotte. “They would
work one day and have to sleep for two. Perfectly well-adjusted people became disabled almost overnight.”
By the time Lapp notified the federal Centers for Disease Control and Prevention about his findings, the agency had heard similar stories from Lake Tahoe and Rochester, N.Y.
At first, because the illness seemed to strike middle-income, well-educated people, it got tagged with the name “Yuppie Flu.” Patients hated that because they thought it made light of their conditions. In time, researchers confirmed the syndrome was real, and it was given more respectful names – chronic fatigue syndrome, chronic fatigue and immune dysfunction syndrome, or myalgic encephalopathy.
Experts initially believed the syndrome was caused by a virus or retrovirus. But that proved wrong, and later research looked at immune system abnormalities. The most recent focus is on the central nervous system and the body's metabolic system, Lapp said.
Researchers in Spain and England have shown that certain genes in patients with CFS and fibromyalgia are turned off and on differently than those in healthy people, Lapp said. A blood test was recently patented but is not available commercially, he said.
The cause is unknown, and there's no cure.
About 70 percent of people who have chronic fatigue syndrome also have fibromyalgia, and vice versa. It's often difficult to distinguish between the two. Although fibromyalgia is not a new syndrome, it was officially defined by the American College of
Rheumatology in 1990 as chronic widespread pain (at least three months duration) associated with at least 11 of 18 pressure points on the body. Like CFS, it can be extremely debilitating and interfere with basic daily activities.
Insurance coverage for chronic fatigue syndrome and fibromyalgia is sporadic, Lapp said. “In our practice, 30 percent of patients get full reimbursement, 30 percent get partial, and the rest get minimal.”
Karen Garloch