Therapeutic Advice You Can Trust

Hi fibro-cfs friends,

I am finding that quite a few doctors, even entire populations are confusing Chronic Fatigue Syndrome and Myalgic Encephalomyelitis.  In Fact, many of the articles I read actually combine the two as one syndrome/disease! For example, I’ve read too many articles that begin with the definition (CFS/ME). I am not a doctor, so this of course is my opinion, but I think updated reasoning is required here. 

I pulled the following paragraph directly from Wikipedia.

Chronic Fatigue Syndrome (CFS), which is also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), and various other names, is a syndrome(or group of syndromes) of unknown and possibly multiple, affecting the central nervous sytem(CNS), immune, and many other systems and organs. There is no simple diagnostic test; CFS is a diagnosis of exclusion, although recent research indicates biological hallmarks of the syndrome, and a diagnostic test is predicted soon.

I did locate from ahummingsbirdsguide established by Jodi Bassett, the following paragraphs which brought some relief.  Thank you Jodi and *Dr. Hyde. 

It is important to be aware that the disease Myalgic Encephalomyelitis, which has had a World Health Organizational classification since 1969, is not the same illness as the subsequently-named ‘Chronic Fatigue Syndrome’ definitions, although they are sometimes treated as similar.

In contrast to many of the ‘CFS’ definitions, Myalgic Encephalomyelitis is not a diagnosis of exclusion. Lack of knowledge of this has led both to people being incorrectly diagnosed with the illness, and also to the stigma that sufferers are complaining of an invisible disease, and must hence have a psychosomatic illness.

Adding to the confusion, some research ostensibly done on CFS population samples has in fact been done on sufferers of M.E., and some research ostensibly done on M.E. has in fact been done using test subjects diagnosed with one of the types of CFS which are quite different from M.E. (for instance the Fukuda criteria), or with those who simply have some sort of fatigue, due to the mistaken belief that M.E. is synonymous with chronic fatigue some definitions of CFS. 

It should not necessarily be concluded that those diagnosed with “Chronic Fatigue Syndrome” have, in contrast to those with M.E., a psychosomatic disorder or problems. Part of the problem of the extremely broad criteria of some CFS definitions is that they can incorporate both those whose fatigue is primarily related to depression and emotional stressors in their lives, and those who have fatigue and other physical symptoms which are caused by undiagnosed physical disorders or diseases. Thus the definition CFS is, as Dr Byron Hyde has written, unhelpful to those with M.E., and unhelpful to those who have been diagnosed with CFS. Dr Hyde advocates that the concept of CFS should be abandoned, as in practice it leads to stigmatizing those with physically-caused illnesses as psychosomatic or hypochondriacs, and is often used as an excuse not to conduct proper testing and treatment of the genuinely ill (by doctors who assume the diagnosis of  CFS means that there is no point in conducting more than rudimentary physical tests).

It would be extremely helpful to MANY if a reader of this blog who is or knows someone who is suffering with either Chronic Fatigue Syndrome or Myalgic Encephalomyelitis would post a comment indicating their understanding regarding these conditions.

*Dr. Hyde founded the Nightingale Research Foundation  in 1988. Nightingale is dedicated to explore, understand and treat the patients disabled with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (M.E. and CFS), fibromyalgia-type illnesses and post-immunization injuries. 

Care Tip:  Disease is challenging to say the least.  But taking action to understand one’s own body and the numerous attacks from disease, syndromes, virus’s etc. will reduce fear and stress, and increase the proper protocol to help relieve pain and suffering.   

 Hi fibro-cfs friends,

Did you read the article regarding restless leg syndrome?
Doctors are trained to prescribe drugs for conditions. I
understand the administration of medication for restless
leg Syndrome with fibromyalgia can be very beneficial
along with our care tip for today.

Care Tip:  For restless leg syndrome with fibromyalgia
try chiropractic manipulations, nutritional supplements b-12, folic
acid and iron. Ask your doctor to test your iron and B-12 levels
prior to starting administration.  You don’t want to enter the realm
of over medicating, even with supplements. Supplements are
as potent as Rx drugs.  

If you are reading this post and have experience with the above or
another treatment for fibromyalgia restless leg  tell us about it in the
comments section. 

Your friend,

Cheryl

A 2007 study conducted by a group of rheumatologists from the American College of Rheumatology found that Fibromyalgia is not discreet, but a part of a large continuum of pain and other syndromes.  This illness causes tremendous pain over the entire body, which is not the result of inflammation or damage.  Interestingly, significant scientific evidence shows one huge spectrum of illness, which includes Fibromyalgia, as well as TMJ, Irritable Bowel Syndrome, Restless Leg Syndrome, and others.  People with Fibromyalgia are not simply tender to touch, but in serious pain that also manifests in various ways, all of them negative. However, with a confirmed diagnosis and the right treatment, the symptoms can be controlled.

With this symptom of Fibromyalgia and Restless leg syndrome, patients experience an unpleasant and uncomfortable sensation,  something difficult to define.  The legs seem to move involuntarily and often, most often occurring during sleep. Interestingly, Restless Leg Syndrome is prevalent with this illness, along with leg cramping.  New studies show that this symptom and others seen in Fibromyalgia could be a spectrum of overlapping issues, specific to a common, biophysiological mechanism of neuroendocrine. In many cases, Clonazepam, Levodopa, or Carbamazepine are beneficial treatment options.
   

Clough C. Restless Leg Syndrome. BMJ 1987; 294;262-3. Yunus MB, Masi AT. Fibromyalgia,
Restless Leg Syndrome, periodic limb movement disorder and psychogenic pain. IN: McCarty DJ,
Koopman WJ, eds. Arthritis and allied conditions: a textbook of rheumatology. 12th ed. Philadelphia: Lea and Febiger,
1993;1383-1405. Reynolds G, Blake DR, Hall HS, Williams A. Restless Leg Syndrome and rheumatoid arthritis.
BMJ 1986;292;659-60. Yunus MB, Masi AT, Calabro JJ, Miller KA, Feigenbaum SL. Primary Fibromyalgia (Fibrositis):
Semin Arthritis Rheum 1981;11;151-71.

Hi fibro-cfs friends,

How are you today/tonight?  Are you taking action to decrease the pain of fibromyalgia-cfs?  

In today’s world, people move about at supersonic speed. But for individuals living with fibromyalgia-cfs fast forward has been locked on hold and for a large number of sufferer’s in reverse!

Most fibro-cfs sufferer’s can relate completely to watching life on standby. I fully understand. The message my fibroebooks.com blog is passing on to you is we don’t have to allow fibromyalgia-cfs to take away our lives!  I’m not saying we (or someone you care about) can suddenly be well by taking a pill, exercising or replacing all sweets intake.  What I hope for you today is to just read the care tip and give it a try.

Care Tip: Do continue to drink water throughout your day. Do pace yourself while stretching or exercising so you don’t fall prey to flare-ups. Do pay closer attention to your body. Listen to it.

Do you feel more in charge of your future when you are more in charge of your life, even with small but noticeable improvement?   

You are!  Notice the tiny changes with corrective action.  We move forward with a little less fatigue, a little less constant pain, and a little less frustration.  A little larger smile!

Your friend,

Cheryl

Hi Fibro-CFS Friends,

How many of us have questioned if fibromyalgia-cfs leads to other complications and have been told by medical professionals “No”. Complications of Fibro and CFS are not as straight forward as a direct “yes” or “No” answer.

Wikipedia states that “a complication is an infrequent and unfavorable evolution of a disease, a health condition or a medical treatment.”

This brings into the questions is being tired daily, weight gain, loss of personal relationships and quality time a complication of fibromyalgia-CFS? I say “yes” and Mayo Clinic agrees with me. Mayo clinic elaborates that “the frustrations of dealing with an often misunderstood condition can also be a complication of the condition.”

Care Tip: increase your water intake daily and give up the soda for 2 weeks (I bet you heard this before:) But this time really take action and try it. Let me know if this has helped you with the complication of weight gain? It works! Just because the label reads DIET Soda doesn’t mean you will not gain weight! Think of this as a seriously positive step in Your Fibro-CFS Survivor comeback. It is!

Your friend,
Cheryl

Hi fibro-cfs friends,

Today Fibromyalgia and Stress combatted the gulls that sailed across the sky blue waters of Lake Michigan like white wash clothes drying in the breeze. Fibro fog… yes. Light sensitivity…yes. Work to be done (that includes rolling out of bed)… yes!

STRESS… YES!

Care Tip:

Stress ignores no living being, especially those with chronic pain! A little cognitive behavioral therapy may help! How many of your thoughts, feelings and behaviors were based on your pain today causing hours and hours of stress? How many watched the gulls sail by?

Vocalizing your pain and stress to someone who listens may help. How do you feel today?

Your friend,
Cheryl

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Hi fibro-cfs friends,

A little Fibro-cfs care talk:

The 2007 physician fibromyalgia exercise article in this blog was right on track. CFS-Fibeomyalgia Sufferer’s can barely get up off a chair some days less start up an exercise program. THe mention in the article regarding swimming or walking is a fantastic program. Only issue I find here is one must get out of bed or the chair and go do it! For those of you who can, wonderful! For the sufferers that are to tired or hurt to much to participate, exercise is out of reach! Or is it? This is were stretching plays an under utilized role for CFS-Fibromyalgia sufferer’s. Chiropractors and physical therapists play a vital healing part in your life. Work with them and follow the stretching erercises they provide you. Make sure the stretching exercises are explained clearly and written down with an example of each exercise. Go for it! Nobody can do it for you!

Care Tip: an exercise I perform in bed before I attempt to roll out (I’m not kidding) is lying on my back with one knee bend and foot sole down on the bed, with knee bent I bring the other leg toward me, circle my arms around the bent knee and draw the leg as close to my chest as I am able. I Hold to a count of 3 and lower my leg. I do this 3 times for each leg. This is one of my stretches that has helped my flexibility. I don’t even need to get out of bed for this one!

your friend,
Cheryl

                                      Exercise and Stretches

Because Fibromyalgia causes significant pain in the muscles, ligaments, and joints,stiffness is also a common problem.  With proper exercises and stretches, you can help loosen the muscles and joints, ultimately bringing the pain to a more management level.

Of course, it is important that you work with a qualified person to learn the right exercises and stretching techniques to avoid making the pain worse. In most cases, exercise is a great way of preventing illness although in the case of Fibromyalgia, it can also provide physical and mental benefits.  By incorporating exercise and stretching as a part of the treatment plan for people with this illness, marked improvement is noted.  The type of exercise should be simple such as swimming or walking, always starting out slow and then increasing gradually. This illness causes serious pain, which results in sleep problems, fatigue, and a number of other symptoms.  Today, it is believed that 3.5% of all women and 0.5%of all men in the United States have Fibromyalgia.

One study conducted by the Arthritis Foundation and U.S. National Institutes of Health used exercise to determine the level of affect.  Exercises were basic, showing improvement specific to depression, fatigue, mental health, social function, and pain.  In combination with patient education, the benefits lasteda minimum of six months.

Daniel Rooks, Sc.D., Assistant Professor or Medicine, Harvard Medical School, Boston, MA; Roland Staud, MD., Professor of Medicine, University of Florida, Gainesville; Nov 12 issue, 2007, Archives ofInternal Medicine.

Hi fibro-cfs friends,

A little “cfs-fibro care talk”: Has anyone given massage a try?  What was your experience?

A couple months ago I was introduced to a lymphatic massage.  The licensed/certified therapist provided her services from her home.  She furnished a pleasant upper room with a massage table and all the comfy’s that make’s one feel safe and relaxed.  It turned out to be a very special helpful Fibromyalgia treatment for me. 

I understand if you are unable due to skin sensitivity to have this therapy performed at this time.  But some fibromyalgia information that may lift your spirits is at one time I too was unable to be touched without unbearable pain.  I couldn’t even use a light sheet to cover with.  I have journeyed through what seemed an endless fog and am gaining back health due to taken action to learn what works and what doesn’t work for me.  I truly hope all fibro-cfs sufferers become survivors.  

If you are able to be touched, try a massage.  You’ll be glad you did!

“care tip”:  use a “soft” ear plug for a better night’s sleep.  Even if you take medication or a remedy at bedtime an ear plug blocks out the noise. Especially if your cfs-fibro noise sensitive.

Join in on overcoming this thief cfs-fibromyalgia.  Take back what is yours!  Did you find this info useful? I hope so.  As it’s about You! It’s about Us!

Hope to hear from you soon.

Your friend,

Cheryl

In some instances, the skin of a Firomyalgia patient is simply too sensitive to touch thus eliminating massage therapy. However, if you are okay to touch,  this can be a very beneficial option. With manipulation, the body’s muscles and soft tissue are worked, which is great for easing pain, as well as improving nutrient flow to the muscles, As a result indivivuals who suffer from Restless Leg Syndrome and stress associated with Fibromyalgia would likely find relief.

Other benefits of massage therapy is that with better circulation, endorphins, which are natural panikillers within the body are released, therefore reducing pain levels while improving flexibility. Of course, it is crucial that you work with a well trained licensed therapist, one who specializes in bringing comfort to people living with this illness.

With massage therapy, the parasympathetic nervous system is stimulated. This causes the heart to slow, which helps by relaxing the body.  A 2002 study involved Fibromyalgia patients, each given a 30-minute session, two times a week.  The result of all patients in this particular study was a noted reduction in stress.  What makes this study so intriguing is that the pain was greatly reduced within just five weeks.

Sunshine W., Field T., Schanberg S., Quintino O., Fierro K., Kuhn C., Burman I.  Fibromyalgia benefits from massage therapy.  Journal of Clinical Rheumatology.