Free Falling

recent study linked falls in people with FM to poor sleep the previous night.

Frequency of falls in the last 6 months in 48 FM and 32 ‘normal’ subjects were recorded. The number of falls in the last 6 months was significantly higher in the FM group. Worse postural performance and fall risk found in the FM patients were found to be related with the sleep quality in the last 24 hour period and level of fatigue.

falling-10This research supported earlier work suggesting that falls were especially common with our condition and sought to find out why. Researchers determined that there’s a significant increase in fall risk after a bad night of sleep that leaves you fatigued. Is there any other kind of sleep for us?

You should also note that FM is believed to predispose you to osteoporosis, which increases the likelihood of breaking a bone in a fall. Your doctor can help you determine how healthy your bones are and whether you need to make dietary changes or should consider osteoporosis medications.

Do you fall frequently?


HYPERMOBILE (Sounds Like a Super-Power!)

It appears that joint hypermobility may play a part in causing the pain of FM.

An Israeli study looked at 338 children (179 boys, 159 girls; mean age 11.5 years, range 9-15 years). Of the 338 children, (and according to the 1990 American College of Rheumatology criteria for the diagnosis of FM) 21 (6%) were found to have FM; 43 (13%) joint hypermobility; 17 (81%) of the 21 with FM had joint hypermobility and 17 (40%) of the 43 with joint hypermobility had FM. (The blind assessment of joint hypermobility and FM were carried out independently.)

4573321162This study suggests that there is a strong association between joint hypermobility and FM in schoolchildren. It is possible that joint hypermobility may play a significant part in causing our pain. These results could lead to earlier diagnoses and much quicker treatment for all FM sufferers.

But as always, the researchers have said that more studies are needed to establish the clinical significance of these observations.

Surprise Posting

My head is not working right at the moment. I was totally prepared for this and had a number of pre-prepared posts (…and here’s one I prepared earlier) ready to publish. I even had one for today BUT this wasn’t it.

One of the doctors in the hospital (who didn’t know me from a bar of soap) said that my blog was a sign of maladaptive behaviour. Firstly, I am not exactly sure what this is but it sounds bad. Next, he wants me to change my anti-depressant by going to a new psychiatrist. He also wants me to see a new psychologist (despite the fact that I have been happy with the one I have had for 5 years now; and that I thought I was doing pretty well and hadn’t been to see her in quite a while (ok, I have no idea how long it has been!)) I won’t be seeing a new psychologist, although I think I will drop in to see my ‘old’ one to check on this maladaptive behaviour.

So back to that…this had me thinking and I started to go back and read some of my old posts. I came across ‘Waking Up with Debbie Downer’ (written in May of this year) which I am re-blogging because it sort of sums up my mood right now:

Guess what? I woke up this morning – that’s all I can say without getting negative; and even that can be taken in a negative light. I was going to write wonderful, positive things about home treatment but my mean-spirited voice kept adding in asides.

As such, on the left is the post I was intending to write (when I went to sleep last night) and on the right is the Debbie Downer digressions. Do NOT read the right-hand side if you’re feeling horrible!

Although fibromyalgia is a

chronic condition, there is

much you can do to relieve

and control your symptoms.                    Yeah, right!

Taking control and becoming

involved in your own

treatment is the most

important part of treating

fibromyalgia. There are many

things you can do:
Exercise regularly. Of all                    Regularly? Does that

the treatments for                                  mean when I’m 

fibromyalgia, cardio-                              regularly feeling well?

vascular (aerobic)                                   Or when I’m feeling

exercise may have the                            like I regularly do?

most benefit in reducing                        (which means I really

pain and other symptoms                      don’t feel like 

and in improving your                            exercising!)

overall condition. Work                          And who is going to

with a physical therapist                        provide the money for 

or other professional                              this professional help?

who has expertise with

fibromyalgia to build an

exercise program that

works for you.

And then stay with it.

Improve sleep. Sleep                          Oh, really? Because I

disturbances seem to                              haven’t been trying to

both cause and result                             do that already?

from some of the other                           Because I really enjoy

symptoms of FM,                                     waking up feeling this

such as pain. Learn good                        bad? Because I love

sleep habits. And try to                           feeling this tired all

get enough sleep each                            the time?


 Relieve pain. Heat therapy,                   Anyone got a

massage, gentle exercise,                       battery operated heat

and short-term use of non-                    suit?

prescription pain relievers                      My chemist already

may be helpful.                                       believes that I am

                                                                   running some kind of

                                                                   lab from the basement

                                                                  of my house!

Reduce stress.                                       Have you been in my 


Learn about fibromyalgia.                    Control is merely a 

The more you know, the                           figment of the

more control you will                                imagination!

have over your symptoms.                        Even at my most

People who feel more in                           positive, I know that I

control also tend to be                              am just running

more active and report                             (figuratively) from FM.

less pain and other


Learn ways to manage                         If I could do that, I

your memory problems.                            wouldn’t have memory

Feeling as though you                               problems!

are not thinking clearly

increases stress and can

make memory problems

worse. Simple things like                            But where did I put

writing yourself notes                                 that note? And what

can help you feel more                               did I mean when I

in control.                                                    wrote SHARE?

Adopt a good-health                               Even I’m speechless

attitude, along with these                          for this one (and I

other healthy habits. It’s                            wrote the stupid

hard to stay positive when                        sentence)!

you don’t feel well. But a

good attitude helps you

focus less on your

challenges and feel more


The best results occur when                       No-one can say that I

you take an active, committed                   haven’t been taking

role in your own treatment.                        an active, committed

You may need to adjust your                      role in my own

lifestyle to fit home treatment,                  treatment – and this is

especially regular exercise,                       the BEST I can come up

into your daily routine. It may                    with? I’m going back

take time to find an approach                    to bed!

that works for you. Try to be

patient. And keep in mind that

consistent home treatment

usually can help relieve or

control symptoms of


All expletives (and there were many) have been erased!

Hmmm, which way are you leaning today?


***Maybe I should make that appointment with my psychologist on Monday!


Play It Again, SAM (-e)!

Do you know about is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. As of today, currently lists 134,739 studies with locations in 180 countries. (You might want to keep an eye on this site!)

Aside 1: I love to learn new things and research

Aside 2: I started SAM-E (at 400mg) this week (not feeling any better – in fact, this week has been my worst week in as long as I can remember!)

I’ve had AUSTRALIA and FIBROMYALGIA bookmarked with for quite a while but nothing much is happening here.

However, one thing I noticed was a Double-Blind, Placebo-Controlled Trial of the Impact of S-Adenosyl-L-Methionine (SAM-e) on the Mood and Other Symptoms in Fibromyalgia.1 The phase 2 trial was completed in March 2007 but there were no results published – zip, nada!

Well, that was not particularly helpful. BUT I am an alumnus of the university where the study was run. So, one email later, I had the draft report in my grubby little hands (or inbox).

Available from

Quick background: SAM-e is of fundamental importance in a number of biochemical reactions and has been trialled previously in the treatment of FM. This study aimed to examine the clinical impact of SAMe-B-ForteTM – a complex containing 400mg of SAM-e – in the treatment of fibromyalgia in the light of possible melatonin (MLT) mediated circadian enhancing properties (basically, sleep).

Statistics: FM is the third most common disorder in rheumatologic practice after rheumatoid arthritis and osteoarthritis and its prevalence in the general population has been estimated to be between 1% and 4%.2,3,4 The prevalence of FM in primary care settings (at GP level) is much higher, where it is estimated to be between 5% and 20%.3,5 Studies examining the outcome in FM patients suggest that the probability of complete recovery in the short-term is low.6

As we know, no treatment (medical or psychological/behavioral) has been demonstrated to be clearly and reliably effective (or we all would have shared it by now!)

Patients were randomly allocated into two groups (placebo and active treatment). The SAMe-B-ForteTM group received capsules containing SAM-e 400mg, over an 8 week period.  The placebo group received capsules that were of identical appearance. All participants were instructed to take one of the capsules in the morning with food (the directions on my box of SAM-e state to take it without food?) Only 49 patients completed the trial.

It appears that the 4th week was the breakthrough week – SAM-e was effective in reducing global symptoms, sleep onset insomnia, and bowel dysregulation. While the results failed to support previous findings that SAM-e could aid depression, the dose given (400mg) and the short time period may not have allowed for optimal antidepressant action of SAM-e and future trials would be required, including a range of doses, in order to better examine dose-response data.

Conclusion: The SAMe-B-ForteTM complex tested shows promise in alleviating symptoms in FM. The promising results confirm there is a potential benefit of SAM-e administration in FM but also that this finding needs further exploration.

Well, I don’t want to wait (really sick of waiting – and it’s taken 5 years for researchers to produce a draft report!) so, as I said earlier, I am giving it a try. Hopefully, the next few weeks will be better than this one.


  1. Luke Xantidis, Gregory Tooley, Daniel Lewis and Laurence Lacey
  2. Doron Y, Peleg R, Peleg A, Neumann L, Buskila D: The clinical and economic burden of fibromyalgia compared with diabetes mellitus and hypertension among Bedouin women in the Negev. Fam Pract 2004, 21(4):415-419.
  3. Kirmayer LJ, Young A, Hayton BC: The cultural context of anxiety disorders. Psychiatr Clin North Am 1995, 18(3):503-521.
  4. Staud R, Domingo M: Evidence for abnormal pain processing in fibromyalgia syndrome. Pain Med 2001, 2(3):208-215.
  5. Al-Allaf AW, Dunbar KL, Hallum NS, Nosratzadeh B, Templeton KD, Pullar T: A case-control study examining the role of physical trauma in the onset of fibromyalgia syndrome. Rheumatology (Oxford) 2002, 41(4):450-453.
  6. Dobkin PL, De Civita M, Bernatsky S, Kang H, Baron M: Does psychological vulnerability determine health-care utilization in fibromyalgia? Rheumatology (Oxford) 2003, 42(11):1324-1331.



A Magic Pill? Not!

107. happy pills“There’s no magic pill…to fix their fibromyalgia,” says Mark J. Pellegrino, MD, of Ohio Pain and Rehabilitation Specialists and author of 13 books on fibromyalgia. “A balanced approach is important.”

For some people with FM, that balanced approach includes trying complementary and alternative medicine (CAM) in addition to medication, exercise, and physical therapy.

Here are some of the most popular alternative treatments and their track records.

Dietary Supplements for Fibromyalgia

Supplements commonly used to treat fibromyalgia symptoms Include:

  • 5-HTP (5-Hydroxytryptophan). This is a building block for the brain chemical serotonin. Low levels of serotonin are associated with depression, so it is believed that raising serotonin levels can lead to a better mood. One study found that 5-HTP supplements may also help ease anxiety, insomnia, FM pain, and morning stiffness. In the 1980s, 5-HTP supplements were associated with a serious illness called eosinophilia-myalgia syndrome (EMS). However, it is believed that a contaminant in some products caused those EMS episodes. Other potential side effects of 5-HTP include heartburn, stomach pain, nausea, vomiting, diarrhea, drowsiness, sexual problems, and muscle problems. Personally, I was nauseous and kept gagging, trying to throw up, despite my stomach being empty.
  • SAMe (S-Adenosyl-L-Methionine). This amino acid derivative may boost levels of serotonin and dopamine, another brain chemical. Limited research suggests SAMe may improve mood and sleep. Potential side effects may include gas, vomiting, diarrhea, constipation, dry mouth, headache, mild insomnia, anorexia, sweating, dizziness, and nervousness, especially at higher doses. I am giving this one a try, starting tomorrow, as I have heard such great things – I will let you know I go.
  • Magnesium. Low levels of this element may be linked to FM. However, research has not turned up solid evidence that taking magnesium supplements improves symptoms. Excess magnesium intake will result in a laxative effect so it should be taken in divided doses. I couldn’t even handle that! Combined with my IBS, I had to be surgically removed from the toilet seat! Magnesium can be obtained naturally from green leafy vegetables (but this is another IBS kick-starter!), pumpkin and sunflower seeds, 100% wheat bran cereal and raw spinach.
  • Melatonin. This hormone is often used in supplements to improve sleep. It may also ease FM pain. Melatonin can make symptoms of depression worse. It can cause some side effects including headache, short-term feelings of depression, daytime sleepiness, dizziness, stomach cramps, and irritability. (N.B. Do NOT drive or use machinery for four to five hours after taking melatonin.) I found taking a slow release/time release version very helpful (in fact, I only had to use 3mg) AND it can be obtained very inexpensively.
  • St. John’s wort. Though this herb is sometimes used to treat certain FM symptoms, there’s no solid evidence that it works. A few studies suggest it may help with mild depression.  But it can also limit the effectiveness of some medications.

I had a bit of a look around the Net and put together a little table (here). By no means does it have all the information about each supplement, nor does it have every supplement. So, I’m suggesting (strongly) to you that, prior to trying, adding, reducing any of your supplements, please talk to your doctor. Some supplements can have harmful interactions with prescription medications. Some are unsafe if you have certain medical conditions. Be wary of products that promise FM relief or contain supplements not commonly used. When it comes to supplements, more and more is being learnt; but unlike drugs, there is minimal rigorous research. It’s important for you to work with a doctor who is knowledgeable about supplements.

Pellegrino, who has FM, considers the “three pillars of treatment” to be medicine, physical therapy, and supplements. The idea behind using supplements is to boost levels of certain substances in your body that may reduce the symptoms of fibromyalgia. “If there’s a deficiency you can measure,” says Pellegrino, “it makes sense to replace that deficiency.”

If you’d like to see iHerb’s selection of supplements, click here. Use Coupon Code LHJ194 to get $10 off any first time order over $40 or $5 off any first time order under $40.

Acupuncture to Ease Fibromyalgia Pain

In traditional Chinese medicine, acupuncture was thought to rebalance the flow of energy through one’s body. For modern Western practitioners, it’s a healing method that increases blood flow and production of the body’s natural painkillers.

In its most common form, acupuncture involves stimulating points on the body by inserting thin needles into the skin. When a slight electric current is run through the needles, it’s known as electro-acupunctureBoth methods are used for FM.

203. acupunctureSome people believe acupuncture is an effective, if temporary, treatment for FM symptoms. Others are not so sure.

In a 2006 Mayo Clinic study, acupuncture appeared to significantly reduce fatigue and anxiety among people with FM. Other studies have suggested that acupuncture can temporarily ease FM pain as well. Yet researchers who analyzed several clinical trials, including the Mayo Clinic study, concluded that overall, acupuncture is not effective in treating FM.

Since then, a new study of acupuncture — the most rigorous and detailed analysis of the treatment to date — found that acupuncture can ease migraines and arthritis and other forms of chronic pain. The findings provide strong scientific support for the age-old therapy. Though acupuncture has been studied for decades, the body of medical research on it has been mixed and mired to some extent by small and poor-quality studies. Financed by the National Institutes of Health and carried out over about half a decade, the new research was a detailed analysis of earlier research that involved data on nearly 18,000 patients. The researchers, who published their results in Archives of Internal Medicine, found that acupuncture outperformed sham treatments and standard care when used by people suffering from osteoarthritis, migraines and chronic back, neck and shoulder pain.

Trying it yourself may be the only way to find out if it works for you. It may take several acupuncture treatments for you to conclude whether its benefits, if any, are worth the money.

Further Reading

Alternative Fibromyalgia Treatments: Massage

Massage can reduce muscle tension and ease pain in the muscles and soft tissue. It can also improve circulation and range of motion and boost production of natural painkillers. Some studies suggest it can improve your mood. And it may help people with fibromyalgia sleep better, too.

Formal studies of the effects of massage on fibromyalgia symptoms are few and results are mixed. However, researchers at the University of Miami’s Touch Research Institute report that just 20 minutes of moderate-pressure massage can lessen the flow of chemicals associated with pain and stress while increasing production of serotonin.

The result: a better night’s sleep. That can help combat fatigue and the inability to concentrate known as “fibro fog.”

Further Reading

Fibromyalgia Treatments at Home

Don’t forget simple and inexpensive home remedies for pain. For example, heat – especially moist heat – can temporarily ease pain and stiffness by boosting blood flow to the places where you hurt.

Try applying a moist heating pad, taking a warm shower, or just warming your clothes in the dryer before you put them on. Cold packs can help you feel better too, by reducing the deep muscle pain of FM. Why not have a look at tips from others in the comments here.


General Further Reading:

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Fog Patches Dissipating With Morning Sunshine

Fibro Fog is the name commonly given to the cognitive problems that can go along with FM. These problems with concentration and memory can lead to confusion, losing your train of thought, or forgetting or mixing up words or details.


I find that the more tired I get, the more I mix up words and lose my train of thought. But, there are ways to help yourself manage it. (Sorry! No cure here.) Why not try some of the following tips:

1.      Write it down.

Making a note helps you get a thought more firmly in your mind. You might want to keep a calendar or notebook with you so you can write things down while you’re thinking of them.

2.      Get treated.

Other symptoms that commonly go along with FM – including depression, pain, and lack of sleep-can also make it harder to concentrate and remember. Medical treatment for these other problems may also help your memory.

3.      Stay active-mind and body.

Keep your mind working by doing puzzles, reading, or seeing a play to get yourself thinking. Moderate physical activity can increase your energy and help clear the fibro fog. Talk with your doctor or physical therapist about an exercise program that is right for you.

4.      Find ways to help you focus.

Try breaking tasks up into small steps. Don’t take on more than you can comfortably manage, so you’re not trying to do too much at once. When you do start a task, avoid distractions that can keep you from concentrating. A loud radio or TV, or trying to work where other people are talking, can make it hard for you to focus on what you’re doing. Try working in a quiet place when you are trying to concentrate or remember, so you can give the task your full attention.

Then there’s my trick:

Albeit a band-aid solution, to stop forgetting things at home, I have attached this vine to the entry of my small hall leading to the front door. Then I use clothes pins to clip those things, which I have to remember to take with me, to the vine.

I hit my head on these as I go to my front door. And they are still in a safe place – just not one of THOSE places where I’ll forget them.

Anyone got any other tips?


10 Reasons To Increase Fibromyalgia Awareness

Today I have run out of things to say so, yes! this is a repeat post – but it is still vitally important!

    1. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about fibromyalgia, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
    2. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
    3. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
    4. Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
    5. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
    6. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
    7. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
    8. More support groups will be formed as a result of more people realising that they have fibromyalgia.
    9. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
    10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Attention Single, Divorced and /or Friendless


Firstly, some facts (this is not me feeling sorry for myself, just facts):

  • I am single (read divorced and/or friendless depending on your situation)
  • I am sick (with no cure on the immediate horizon)
  • I have only one friend who actually visits with me
  • I have no particular interests outside my home

So, I was thinking, is this my lot in life forever? Will I ever meet a prospective partner? How will I meet a prospective partner? Does he deserve a partner who is continually unable to meet her responsibilities? Okay, forget a partner, how about some new friends?

These questions sent my mind racing – I can’t drive more than about 10 kilometres before my arms, shoulders and head start to hurt; I can’t go to parties (even if I was invited) because the noise and other distractions are too much for me to handle; there are no clubs or groups in my area that I wish to join. So, what is a FM sufferer to do?

Why, take to the internet, of course! ‘How to meet new people’ was my search term:

Succeed offered a list of places to meet people

  • Through your friends, significant other, and other people you already know

This point obviously will not work for one in my situation

  • Work

I am still unable to work

  • Volunteering

As I am unable to be reliable in a work situation, I am unable to commit to volunteering. I used to volunteer regularly at a local legal centre – it was incredibly satisfying and I miss being able to help others.

  • Classes

I go to my self-help hydro groups, where the closest person in age to myself is about 25 years older than me. They are a lovely group at Hydro but I doubt greatly that we have very much in common outside being ill and/or disabled.

  • A club or organization

The appeal here is obvious. You join up and you instantly know a group of people who share a similar interest to yours. But what happens if you no longer have any interests? Other than researching fibromyalgia, spreading awareness about fibromyalgia and raising funds for fibromyalgia research. Kind of sounds like I should join or start my own fibromyalgia support group, right?  But, with this type of group, it would probably take all our efforts just to turn up to meetings, let alone maintain friendships outside the group.

  • A sports team or league

Are you kidding?

  • Through your religion

I am not religious. I believe in a higher being but I do not know of a public denomination which shares these same values.

  • Through your kids

Another moot point for me

  • Your living situation

Living in a large building with lots of other people your age around is better than being in a small place with no one who’s similar to you. Guess what my situation is? I live in a block of units (alone) where, currently, there is no-one with any similarities to me at all. How can this happen? (rhetorical question!)

  • Your family

No real help there, although my grandfather (before he died) tried to set me up with a 71-year-old ex-doctor.

  • At a party

Too much noise, too many people, just TOO!

  • An individual sport

How many FM sufferers do you know who do a sport? And I’m not one of them.

  • Online

Hmm…what would my ad look like:

SWF in chronic pain, with control freak tendencies, seeking understanding, compassionate friends with low expectations.

Would any of you answer that one?


There were a number of other suggestions but you get the idea…so, tell me, fibroMAGICians, what do you do?


Please Share…

Fibromyalgia has many, many more symptoms than I have included here – but I feel it is important to get some knowledge out into the public sphere, without inundating them with too much information.

This is just a start.
Please join the VISIBLE Army by checking out:…

Grow Up!


I found this inspiring. It is Leah Tyler‘s blogpost from Chronicles of Fibromyalgia (published Thursday August 9th):

The other day I was doing dishes and thinking about the 75 million steps in life I have taken to bring the Fibro dragon down. I remembered the scared frightened girl who got sick with something nobody knew much about. I thought about the years of misery, just plain misery, I endured as I searched for the steps to reduce the impact Fibromyalgia had on my life. And then I started laughing. Because I remembered that scared frightened girl had a lot of anger, and a fair amount was directed at my parents. They didn’t do anything wrong to deserve it per say, but I still shot blame at them. If Fibromyalgia is genetic or the result of an overdriven personality it was their fault I got sick, not mine. I mean they made me and they raise me so why wouldn’t it be? While my bank accounts fell deeper into the red I decided they should pay my medical bills because they had done something, albeit unwittingly, to cause this horrible illness to invade my life. It wasn’t my fault, it was theirs.
Flash forward five years and that thought pattern is precisely why I was standing in my kitchen laughing my head off. Boy you sure have grown up, I thought to myself. Because in the years between blaming the world and getting Fibromyalgia to a manageable place I did precisely that, grew up. It’s what allowed me to get control of my life, educate myself and figure out what was going on inside my body. Take action and seek success no matter the sacrifice. Insist on results regardless of how much hard work it took. Oh yes I wanted to give up many times. Still do, on any given day depending on how that day happens to be going. But now the thought of crediting my parents for my problems and expecting them to fix them seems simply preposterous.
Ultimately taking full responsibility for my circumstances, no matter the source or cause, is what’s allowed me to prevail and keep going. And still to this day as challenges arise it is picking up that bag of blame and hurling it as far away as possible that forces forward progress. Who on earth cares whose fault it is? What matters is what I do with the difficulties that land in my lap. I can find plenty of people to blame everything on, but what good is that? For me it only incites panic and bitterness. No, I much prefer to take control and deal with things on my terms as I see fit. Life is never short of challenges. From the perspective I have today I believe they are part of what keep us growing, improving and thriving in life. It took serious health problems of epic proportions to break me down and build me back up to this point of view, though. That and the values instilled in me by my parents.