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Mar 24, 2010

That old bugbear, fibromyalgia

Lately I dropped in to Textbook of Pain to see what it had to say about fibromyalgia, or as it is commonly referred to, FM. I found out quite a lot I never knew before, actually.
I already knew that people who are diagnosed with FM hurt - the main complaint is body pain. Careful differential diagnosis comes first; serious major depressions, panic and anxiety disorders are ruled out.
Next, apparently there is more than one kind of FM, primary and secondary. They look and act a lot alike so clinical reasoning is key: Existence of a prior condition means the FM must be treated as secondary:
   1. Rheumatoid arthritis - 30%
       of patients will also likely have FM
   2. Systemic Lupus Erythematosus - 40%
   3. Sjögren's Syndrome - 50%

What "secondary" means, is that patients will have two kinds of pain at once, and treatment of the primary condition must be managed in a way that won't aggravate the pain from the secondary FM. Furthermore, one kind of pain might be well-managed and the other not. For example, "increasing the dosage of antirheumatic medications in the absence of active inflammation may have little effect on the pain amplified by FMS." There are issues with steroid treatment - e.g., patients withdrawing from steroid treatment for their RA might find the FM pain increasing temporarily with each decrease in glucocorticoid dosage. This is a surprise in that primary FM has not been helped with glucocorticoid.
Various infectious and inflammatory conditions such as Hep C, TB, syphilis, and Lyme disease, are associated with FM. FM, and aches and pains from subacute bacterial endocarditis could be confused with it.

Primary FM is referred to these days as a "disorder of abnormal sensory processing of sensory information within the CNS, exhibiting a limited array of recognized objective physiological and biological abnormalities."
1. Mountz et al 1995: CT scans showed abnormally low regional cerebral blood flow in thalamic nuclei and other pain processing brain structures, correlated with spinal fluid substance P levels.
2. Gracely et al. 2002: fMRI evidence for augmented pain processing in brain
3. abnormal spinal cord "wind-up"
4. In over 60% of cases, there exists a temporal relationship to a physical trauma or febrile illness and FM onset.
5. Evidence relating FM to actual muscle abnormality or pathology is weak, scant, inconclusive, or completely missing, in both invasive and non-invasive testing compared to healthy controls. At a neurochemical level, findings support the concept of objective pain amplification. Various pro-nociceptive substances, and a few anti-nociceptive substances, have been examined. One of the pro-nociceptive substances is  substance P  (P for pain):
1. Russell 1998: Elevated levels of Substance P found in cerebral spinal fluid of patients diagnosed with FM
2. Vaeroy et al 1988, Russell 1998, Mountz et al 1995: average concentrations of  substance P  in CSF found to be 2 to 3-fold higher in FM than in healthy controls. Substance P levels in saliva, serum or urine were not elevated.
3. Cerebral spinal fluid contains an esterase for breaking down Substance P - this substance was normal, not deficient, so the elevated levels of substance P must be because the body makes more than the esterase can take care of.
4. substance P  is elevated in other conditions such as rheumatic diseases with or without FM (Russell, unpublished).
5. In painful OA of the hip, levels of Substance P returned to normal after hip replacement.
6. Tsigos et al 1993, Sjostrom 1988: In chronic low back pain, and diabetic neuropathy, cerebral spinal fluid Substance P levels are lower than normal. (So go figure...)
Another substance is  nerve growth factor, elevated in CSF of those who have primary but not secondary FM (Giovengo et al 1999). It may even be NGF that is responsible for elevated levels of Substance P, whereas in secondary FM, the primary condition (arthritis etc.) itself may be responsible. Cytokines called interleukins were found to be elevated, specifically IL-8 and IL-6. IL-8 is stimulated by Substance P. G-protein-coupled receptors were found to not be able to inhibit intracellular cyclic AMP production by adenylate cyclase - more cyclic AMP was found floating around. This is being considered as a cause of the allodynia characteristic of FM. Apparently there is no opioid deficiency; levels of Dynorphin A are found to be normal. Serotonin levels, however, are lower.
Numbers of active FM tender points correlated nicely with concentrations of serotonin in body serum (Wolfe et al 1997b). Noradrenaline levels might be low; concentration of methoxyhydroxyphenylglycol, the inactive metabolite of noradrenaline, was found to be significantly lower than normal in FMS cerebrospinal fluid (Russell et al 1992).
Up to 35% of patients with FM, when tested using hypoglycemic hyperinsulinaemic clamp procedures, show inadequate responsiveness, or excessive response to feedback inhibition, of the hypothalamic-pituitary portion of the HPA axis (Adler et al 1999). This shows exaggerated adrenocorticotropic hormone response to insulin-induced hypoglycemia or stressful exercise and indicates poor tolerance for physiological stress.
Women are more commonly affected than men, and FM onset is often perimenopausal. About 30% of female FM patients are prematurely menopausal due to surgical removal of female reproductive organs. Forty-four % of female FM patients have premenstrual syndrome and pain which cycles in phase with their menstrual cycle (Anderberg et al 1998). It is thought that these differences are less a feature of estrogen and more to do with serotonin (Nishizawa et al 1997).
Sleep is a problem in FM.
Deep stage IV non-REM sleep is when human growth hormone is released. It stimulates the liver to produce a long half-life peptide called insulin-like growth factor-1, found to be deficient in FM (Bennett et al 1997). It has been hard to develop a treatment based on administering this, even though it helps; growth hormone therapy is expensive at $1000/month. Iyengar et al 2005: in a study of 80 multi-case families, 8 genetic markers were detected. Posted by Diane Jacobs

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Posted: Mar 24, 2010 4:13pm
May 26, 2008

Living With Fibromyalgia and Chronic Fatigue

Adapted from a WebMD Feature

I literally get sick if I don't get sleep. Fatigue is my biggest problem. I've had to give up a lot of things because of the fatigue.

Fibromyalgia and
chronic fatigue syndrome 
share a common symptom --
severe fatigue that greatly interferes with people's lives.

Sleep and Fibromyalgia Fatigue

Mary Rose, PsyD, a clinical psychologist and behavioural sleep specialist in Houston says..."Insomnia -- and the lack of deep, restorative sleep -- is a big part of the problem."

When Dr Rose first sees a patient with FM and CFS she makes sure that other causes of fatigue, like anemia (low blood count) and thyroid problems, have been addressed.

"We know from research that sleep improves mood, pain, and in general how people feel during the day. Regardless of the reasons for the chronic fatigue, if we can get some control over quality of sleep, we're likely to see positive benefits to mood, fatigue, concentration."
The chronic lack of sleep affects a patient's overall health as well as their pain. They feel lousy, exhausted, and their immune system can be damaged.

Living With Fibromyalgia and Chronic Fatigue

Sleeping pills aren't the answer....

"They are intended for no more than six weeks. It's not just that your body gets habituated to them, so you need higher levels of the sleep drug as time goes on. The problem is that they just don't work well with these patients."

Indeed, living with fibromyalgia is more than just popping a pill, patients have to be active, not passive...
says Martin Grabois, MD, Houston.

First step:

Check patients for and correct the following:

  • sleep apnea
  • breathing problems
  • allergies
  • big tonsils or tongue  

What you can do.

Lifestyle changes --

  • cut back on caffeine, alcohol, and smoking to improve sleep.
  • sleep habits may need to change.
  • make your bedroom more sleep-friendly, e.g.
    • Limit noise, light, and other stimuli (like pets).
    • Keep the room temperature and bedding comfortable.
    • Do something relaxing before bed, like listening to music or reading.
    • Turn the alarm clock so it's not facing you.

If you're having trouble getting to sleep, get up and do something restful in another room...

  • "Don't lie in bed, worrying and stressing. Get up, go to the other room. When you're calmer, relaxed, feel tired, go back to bed."

Don't nap.

Make sure your sleep time follows a regular schedule

  • A lot of patients have circadian rhythm problems
  • Napping can throw you off. Any sleep during the daytime will be taken from your sleep at night

Reduce stress.

Anything that reduces tension, anxiety and stress will help you sleep better and normalize heart rate and BP, e.g.:

  • yoga
  • Pilates
  • psychological therapy
  • relaxation exercises, visualization, meditation, and
  • biofeedback.

Start stretching.

Several times a day, it's important to give tight muscles a good stretch.

  • Before you get out of bed in the morning, start with stretching: move your head and neck, and your shoulders up and down.
  • Make stretching a ritual.
  • A warm bath can make the stretch more comfortable.


Dr Rose says. "Any time you have pain, insomnia, and fatigue, I always say exercise...

  • Exercise has a profound effect on mood, weight, and fatigue.
  • Water exercise is easier on joints, so it's a lot more tolerable for fibromyalgia patients.
  • Although physical therapy and exercise may be difficult, the short-term pain is a trade-off
    • Exercise helps reduce stress, and that helps sleep.

Pace yourself.

Moderation is important if you have fibromyalgia

  • When people feel good, then they tend to do too much -- then pay the price later.
  • Others give up on exercise altogether, because they don't sleep well, feel fatigued, and exercise makes the fatigue worse.

Start with very low intensity exercise and build up very slowly.

  • Do not run around the block three times... WALK around the block one time -- and do it on a regular basis, seven days a week.

Set up a daily schedule

  • Learning moderation is a skill that can help you get things done despite discomfort and fatigue.

Try medications.

Antidepressants and other medications can help greatly in pain control

  • If your body is worn down, and you're in pain, it's something to consider to see if it helps.

Consider complementary therapies.

Alternative therapies like massage and acupuncture have helped some people living with fibromyalgia.

  • Be sure to talk to your doctor before trying natural or complementary therapies,
  • Volunteer work, hobbies, and a social support network also help make it easier living with fibromyalgia
  • So does a sense of humour.

Anything you do to make your quality of life better
-- to give you more happiness -- you can't lose.

Do what brings you happiness, and chances are
it will help you refocus,
get your focus away from the pain.

Check out
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Posted: May 26, 2008 2:30pm


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Jenny Dooley
, 3, 2 children
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