The common denominator with all chronic conditions (not just FM): those who are diagnosed with them tend to feel isolated: mentally and physically. It’s a huge blow to learn you will forever have an incurable syndrome that may affect mobility, lifestyle and independence.

Research has shown that family and friends play a tremendous role in helping patients deal with a chronic illness. But sometimes it is difficult for a) you to let those people in, and b) for those people to know what to do help.

Hands up if you never tell people how you really feel – then how are they supposed to know? Hands up if you never let anyone see you when you are having a flare – then how will they know what it’s like? Now, I’m not just blaming us – our friends and family (those that matter) need to make some effort, too.

Tips for You (“the sufferer”):

• Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.
• Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.
• Be selective about who you talk to about the illness. Choose carefully those with whom you’d like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.
• Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help.
• Be your own advocate. It’s so hard to learn to speak up about your condition. It’s hard to talk about it sometimes. And it’s really hard to ask for special treatment if you’re not that kind of person. But be brave, and learn to ask for help when you need it.
• Find a support group. Go to it. Take a family member or friend if you’re scared. It’s okay to be scared.

There will be people who will not understand, and may not believe you. Those people may be people you care about. There may come a point where you simply have to accept that you can never talk about your condition with that person. It will be okay, even though it sucks. Some people simply cannot deal with a chronic illness. And can we blame them? Wouldn’t you walk away from your own chronic illness, if only you could?

Tips for Your Family and Friends (“the Family and Friends”):

• Be honest – all I want to know is that you are here and that you care about me.
• Be there for me in any way you can.
• Come to support group meetings with me. Family and friends are always welcome, and that’s the best place to ask questions you’re nervous about asking.
• Keeping it light and making jokes is okay. I’m not as fragile as I sometimes seem. It’s all about the timing and the presentation. Laughter is healthy.
• Let me know that I can always talk to you – even if it’s just a vent session.
• Always listen when I am frustrated – chronic illnesses are VERY frustrating.
• Be there if I need help, but also encourage me when I want to do it myself.
• Remind me, every now and then, that I am coping well.
• Treat me like a whole person – despite any limitations. I want to feel in control and capable, not as if I have SICK PERSON tattooed across my forehead.
• Learn about my illness. Ask me for more information. Just because you read about FM online doesn’t mean you know how it affects me.
• Remind me that you are thinking about me – send a card, an email, a text, a phone call (flowers and presents are good, too!)
• Offer specific forms of help – you might be able to pick up something from the supermarket for me, when you’re there.
• Offer to help research, if I want your help.
• Volunteer to watch my children. Take the kids out for ice cream or to a movie to give me some peace or during doctors’ appointments. It’s often hard to find babysitters, and taking kids to an important appointment isn’t always an option.
• Offer to drive me to places where I may need help – the doctor’s office, the supermarket, other errands.
• Offer to take me to the doctor and take notes for them.
• Encourage me to continue trying new things. When treatments don’t work, I get discouraged. Stay by my side, remind me that you’ll be there when I am ready to try something new. (That tells me that I have a reason to keep trying.) Just keep it generic, so I don’t feel like you’re being a know-it-all.
• Advocate for me.

DO NOT:

• Don’t tell me how I “should” feel – Unless you have my illness, you do not know.
• Don’t presume you know what’s wrong with me.
• Don’t compare your (xyz) to my (abc). That’s like comparing apples to elephants.
• Don’t discuss worst-case-scenarios unless I bring it up first.
• Don’t suggest drugs or treatments someone you know takes. I am going through a treatment plan with my doctor – let the doctor take care of the medical advice.
• Don’t criticise me for whining on a rough day.
• Don’t offer the latest medical advice you heard about on Dr Oz. In fact, don’t give me medical advice at ALL, unless I have asked for you to help research the illness.
• Don’t downplay or belittle my condition in any way. I am fighting a battle – don’t lose sight of that.
• Don’t assume I cope in the same ways that you do. Let me cope in my own way. Don’t tell me that I am coping the wrong way.
• Don’t say, “God will heal you,” it may make me think that you don’t understand what I am going through.
• Don’t bring up each “cure” that you’ve heard about. Sometimes I just need a break!
• Illness isn’t just a matter of attitude. Don’t say things like “when are you going to get out of bed?”
• Be sensitive to my limitations. I know my limitations, which may change from day-to-day. Things I could do yesterday may not be the same as what I can do today. Don’t question that.
• Never insinuate that I am”faking it.” People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is “made-up” is a special breed of hurt.
• Don’t ever ask “How are you?” or “How are you feeling?” because the answer never changes and I don’t want to talk about it. Instead ask, “How is your day going?” or “Is there anything you need help with today?”

*** If you need some basic information about FM, please feel free to download any of my pages or brochures to give to family and friends.

*** Perhaps watching a short video may help your friends and family understand more.

*** If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list)

Related articles

• Letter to a Pain-Free Person (fibromodem.wordpress.com)
• Having a Social Life Despite Chronic Illness (theadventuresofarthritisnfibromyalgia.wordpress.com)
• Chronic Illness: How Much Do You Share with Your Spouse? (chronicillnessarticles.wordpress.com)
• 10 Reasons To Increase Fibromyalgia Awareness (fibromodem.wordpress.com)
• Caring for Your Carer (fibromodem.wordpress.com)

Technically, it was no different to all my other classes (in fact, we have a set routine) but my body really didn’t like moving. I’m guessing that it’s because it’s been about a week and a half since my last session (which was a self-help session), where I felt like I was moving through molasses!

I had given up my self-help session while I was attending rehab as I went to a hydro class there, but their hydro was very low impact and I had built up my session to be quite physical – so it seems that I had lost my momentum during all of this.

Mind you, I am finding it harder to walk the same distance that I do every day – but I am still doing it, at least!

Because it is (seemingly?) getting harder, it would be easy to just say that the exercising is not helping my FM – a very self-sabotaging mode of thought – BUT we know we should be exercising. All the research tells us so! But when it comes time to actually get out there and start moving, many of us have a long list of excuses not to exercise:

Excuse #1: I Don’t Have Time!

What is it that is sapping all your time?

If it’s your favourite TV shows, how about during your shows, you use resistance bands, or walk in place; or you could record your shows so you can skip the commercials and see a one-hour show in just 40 minutes – that’s a 20 minute walk right there!

If it’s work that’s sapping all your spare time, try exercising on the job. Close your office door and walk in place for 10 minutes. (It’s not a long time but it all counts!)

People who exercise regularly ‘make it a habit’ – they don’t have more time than anyone else; instead, they have prioritised their exercise time as something that needs to be done and is of great value.

Excuse #2: I’m Too Tired…(said in a whining voice)

It may sound counter-intuitive  but working out actually gives you more energy, says Marisa Brunett, spokeswoman for the National Athletic Trainers Association. Once you get moving, you’re getting the endorphins ( the feel-good hormones in your body) to release – in turn, this WILL make you feel better (in the long term).

Excuse #3: I Don’t Get a Break From the Kids.

This is the time to multi-task (says the woman without kids!) Take the kids with you – while they’re swinging, you can walk around the playground or the backyard. Walk the kids to school instead of driving them. During their soccer games or practices, walk around the field. Use your family time for active pursuit – go for a bike ride with your kids or just walk around the neighbourhood with your children. When the weather’s bad, you could try all those new exciting interactive video games like Dance Revolution, Wii Sport, and Wii Fit. (Do your kids want any of these as a Christmas present? They could be a gift for you, too!)

Excuse #4: Exercise Is Boring.

“Exercise should be like sex,” says sports physiologist Mike Bracko, EdD, FACSM, a certified strength and conditioning specialist and director of the Institute for Hockey Research in Calgary. “You should want it and feel good about it before you do it. And it should feel good while you’re doing it.”

So how do you get there? First, find an activity you love. Think outside the box: try dancing, walk to the post office or gardening. Or, if you love music, try ballroom dancing. There IS an exercise for everyone.

If it makes exercise more enjoyable for you, it’s okay to watch The Good Wife or read Fifty Shades while you’re on the exercise bike or treadmill — just don’t forget to pedal or walk.

Working out with a group also helps many people. I’m not talking bootcamps or running groups. Check out your local Arthritis Foundation office – that’s where I found my hydrotherapy classes.

And, every once in a while, try something totally new: for one term I joined a Tai Chi for Arthritis group (again through Arthritis Victoria). Mix it up so you don’t get bored!

Excuse # 5: I Just Don’t Like to Move.

There are people who really DO NOT like moving but how about walking in a mall? Window shopping counts as walking!

If it’s sweating you don’t like, you can get a good workout without perspiring excessively: you can work out indoors, where it’s air conditioned; you can swim so you won’t notice any perspiration; or, try a low-sweat activity like yoga.

If exercise hurts your joints, try starting by exercising in water (my favourite – hydrotherapy!) The stronger your muscles get, the more they can support your joints, and the less you’ll hurt.

If you don’t like to move because you feel too fat, start with an activity that’s less public, like using an exercise video at home. Walk with nonjudgmental friends in your neighbourhood while wearing clothes that provide enough coverage that you feel comfortable.

Excuse # 6: I Always End up Quitting.

Set small, attainable goals – then you’re more likely to feel like a success, not a failure! If you exercise for five minutes a day for a week, you’ll feel good (maybe not immediately, but soon enough. I promise!)

Don’t try to increase your exercise by too great an amount each time. My rehab physio reminded me that Olympians try to increase their best by 5 per cent – so why work harder than an Olympian? If you do 5 minutes one day, try 6 minutes (okay, it’s actually 5.25 minutes, but really?) the next. I started at 10 minutes of walking and am now up to an hour by doing it this way – I only increased my times 4 times a week; the other 3 days, I walked for the same period of time as I had the day before.

It also helps to keep a log (especially as fibro fog can have us forgetting where we are up to). A log may help you see if you’re starting to fall off the wagon (or the treadmill).

Having an exercise buddy keeps you accountable as well – when you back out of a scheduled workout, you’re letting down your buddy as well as yourself.

And look toward the future. It’s harder to start than it is to stick with it once you’ve got your momentum going!

Any more excuses, people?

Other exercises you might like to try:

• Pilates
• Body Balance
• Nordic Walking (another Arthritis Foundation activity)

Fibro Friendly Exercises slideshow

Related articles

• Common Excuses for not Exercising (massageenvy.com)
• An Excuse to Abandon the Treadmill (mensjournal.com)
• Choose Your Exercise Personality (massageenvy.com)
• Yoga NO EXCUSES! (myyogaboutique.wordpress.com)
• 5 Easy Ways to Help You Find Time to Exercise (massageenvy.com)

The Honourable Tanya Plibersek MP is currently the federal Minister of Health.

The Honourable Tanya Plibersek was elected to the Australian Parliament as the Federal Member for Sydney at the 1998 federal election. Since then, she has been responsible for a range of portfolios including childcare, work and family, women, youth, human services and housing.

As Minister for Health, Ms Plibersek holds overarching policy and coordinating responsibility for issues pertaining to the portfolio, including high level responsibility for the portfolio’s responsibilities relating to Council of Australian Governments’ reform agenda, and has specific administrative responsibility for (according to the Australian Government Department of Health and Ageing website):

• Medicare benefits;
• hospitals;
• medical indemnity;
• private health insurance;
• health workforce issues (including policy oversight of all areas of workforce distribution, education and training);
• the Pharmaceutical Benefits Scheme;
• pharmacy issues;
• population Health, including issues concerning BBVs/STIs including HIV/AIDS, and other communicable diseases, immunisation, obesity, specific women’s health issues, environmental health issues and drug abuse reduction;
• eye health;
• national health priorities;
• rural and regional health;
• biosecurity and bioterrorism;
• diagnostics and technology;
• e-health;
• tobacco;
• human cloning and stem cell research;
• health and medical research; and
• asthma.

Many responsibilities in this list relate to FM. As such, should we want to take our awareness campaign to a federal level, Ms Plibersek is evidently the person to contact.

Additionally, in her first speech to the House of Representatives, Ms Plibersek spoke of her strong interest in social justice and her conviction that ordinary people working together can achieve positive change.

Our newest project involves demonstrating how ordinary people working together WILL achieve positive change: WE are the ordinary people; and we will be encouraging our government to establish effective protocols for the treatment of Fibromyalgia.

So, what is this project? A petition to the Honourable Tanya Plibersek MP – Minister for Health (as follows):

To the Hon Tanya Plibersek MP,

Fibromyalgia is a condition that affects 2-4 per cent of the population. Currently, health care providers lack understanding, guidelines and treatment protocols to effectively treat Fibromyalgia.

Further, the general public has no understanding of Fibromyalgia. Due to this lack of awareness, millions of people are suffering EVERY DAY with this debilitating syndrome – they just don’t know what to call it! And most doctors are unable (or unwilling) to diagnose the condition.

Fibromyalgia does not only affect its sufferers, but also the family and friends of anybody that is unlucky enough to have this condition.

We, the undersigned, stress the need for the Department of Health to provide effective protocols for the treatment of Fibromyalgia. It is time for positive change in healthcare for all Fibromyalgia sufferers and their families in Australia.

To sign this petition, click here.

Every single time that some-one signs this petition, Ms Plibersek will receive an email. If she, like so many others, has never heard of FM, she will now!

Once you’re done, please ask your friends to sign the petition, or share it on Facebook, as well.

Grassroots movements succeed because people like you and I are willing to spread the word!

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 ClinicalTrials.gov 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 iHerb.com

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-Forte^TM – 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-Forte^TM 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 4^th 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-Forte^TM 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.

Related articles

• A Magic Pill? Not! (fibromodem.wordpress.com)
• New Style and New Content for ClinicalTrials.gov (jflahiff.wordpress.com)

Tonight was the premiere performance of A Funny Thing Happened on the Way to the Forum, starring Geoffrey Rush (yes, one of the few people who have won the “Triple Crown of Acting”: an Academy Award, a Tony Award and an Emmy Award. He has won one Academy Award for acting (from four nominations), three British Academy Film Awards (from five nominations), two Golden Globe Awards and four Screen Actors Guild Awards. He is the foundation President of the Australian Academy of Cinema and Television Arts, and the 2012 Australian of the Year).

And I had tickets. I also had tickets to the After Show Party, to rub shoulders with the rich and famous – the theme this time was ‘Dress for Roman Fun.’ I was going to be rested, relaxed and ready to go out!

I had my Romanesque-style maxi-dress ready. I had my bronze jewellery set out on my dresser and a laurel of ivy next to it; and I was even looking forward to putting on some make-up!

I also had some of the worst pain that I have had in quite a while: walking was excruciating (that broken bone feeling again!); I had to sit on my arms to stop the shooting pains, then move them to get the blood flowing again, then…; the throbbing above my eyes (is there such a thing as eyebrow bones? You know, not at your temples or forehead, but right above your eyes?) was making it hard to keep my eyes open, although closing my eyes made it feel like I was stretching my eyelid muscles too much; and, to make matters worse, I have a huge, blind pimple on the back of my head (I think it’s from sleeping with the electric blanket on and sweating during the night) that is throbbing like my heart beat.

Needless to say, I didn’t go. Instead, I sat on my couch watching ‘What a Girl Wants’ with Colin Firth, followed by ‘The First Daughter’ with Katie Holmes – FABULOUS! (that would be sarcasm)

BUT, I have never run a forum before (then again, I had never written a blog, made a video, or had a Facebook page) so I hope you will join up and help me through the many, many mistakes that I will probably make.

I look forward to seeing you there.

Looks like I insulted a whole lot of people AGAIN!

I shared a quote from Elizabeth Taylor (from the photos of Fibro News and Info) on my FB site:

In my view, the quote expresses what we, as FM sufferers have to do every day. Some days it doesn’t actually work, and we don’t actually get up, but we all try. We have to keep going. We have hurdles (they may last a day, a week, a month, etc) but we struggle to continue with our lives.

This is what I thought the quote expressed – it described our struggles; it wasn’t a direction on how to live life!

Now, how can people be insulted by that, right? Wrong!

One comment: …nice & true, EXCEPT FOR TAKING MY GOD’S NAME IN VAIN…SHOW SOME RESPECT. Please, it is a quote – I cannot change the words in the quote to suit everyone (it wouldn’t be a quote, then!). But I still posted it as I felt it expressed our daily struggle. And the phraseology really got my back up –  ‘MY GOD’ as opposed to my God or your God or any other higher being that some-one may believe in. I do not believe that Elizabeth Taylor meant for anyone to take this as a personal insult.

One message: It is absolutely uncalled for to post anything using God’s name in vain!!! I no longer have ANY respect for this page!!! It is not my quote (or even Fibro News and Info‘s quote). It is a quote by a famous individual. As I said previously, I cannot change the words in the quote to suit everyone. But I still posted it as I felt it expressed our daily struggle. Sometimes I curse and sometimes I use God’s name in vain (and I have trouble believing that there is an individual out there who has NEVER done so), and I am disappointed that a fellow FM sufferer cannot understand the need to express oneself in any way that one can.

This also leads me to think about the way different cultures understand and express themselves.

As you know, I am Australian. I think we (Aussies) tend to see ourselves as very much like Americans. That is, until it comes to cursing (we call it swearing) or using the word ‘God.’ I don’t think the use of any of the words that seem to cause a bit of a ruckus on my FB site, would make an Aussie (or even a Brit) blink an eye. (And the Americans are the ones with a constitutionally protected freedom of speech!)

It is not that we are less religious or less Christian (within the Judeo-Christian concept). Perhaps we are more accepting or realistic? Or we believe that our belief in a higher spirit (whatever you call him or her) does not come down to such minutiae? I can’t say any of this for certain but I can talk about my own beliefs…

I know that my own belief system, which stems from a Jewish upbringing, is based upon knowing there is a higher being (whether that be God, the universe or something else, I am not sure). This higher being has a plan for all of us (but this is not to say that we don’t have some power over our own futures). It is a belief in universal, not relative, morality – ultimately, I answer to this higher being, not to other people. I believe that, in general, I should try to lead a good life. A good life does not mean a perfect life as defined by the Old Testament or the New Testament or the Koran (etc. You get the idea!), or so I believe. It means treating others as you would like to be treated. It means helping others if you have the means and/or ability to do so.

I do not believe this makes me a bad Jew (or Christian or anything else).

For example, as a Jew, I am not supposed to donate my organs (who would want them?) upon my death (although as medical transplantation methods have improved, rabbinical opinions are becoming more accepting) because:

• The needless mutilation of a body is forbidden (hence no tattoos, either);
• Preparing a body of a Jewish donor for transplants delays the burial process and paying respect to the deceased;
• It is forbidden to gain a benefit from a dead body; and
• A person should be buried whole with all their body parts.

However, I have always believed that ultimately the saving of another life (or lives) by donating my organs is a much more moral choice.

Similarly, as a child and young adult, I was taught to never write the word ‘God:’ as a sign of respect, I was taught to write G-d. Now, as an adult, I have decided that the way in which I write the word does not change the way I feel towards this higher being.

I do not believe that cursing (swearing) is going to bring the wrath of this higher being down upon me. Neither do I believe that using the word ‘God’ is going to make very much of a difference to whether I live a good life or not.

But these are my beliefs – you can read about them or not but I will not be forcing them upon anyone. You have the right to your opinion but please don’t force your beliefs upon me.

Firstly, I decide to check if there are any weird drug interactions, so off to http://www.healthline.com/druginteractions to have a look at anything there that could be making me feel this bad.

Hmm…nothing much there (more than normal, anyway).

Could it have been that I am still being affected by my over-doing it all on the weekend?

Could it be this wonderful Spring, Melbourne weather (with one day being a lovely 25 degrees, and the next being 18 degrees)?

Could it be that I’m anxious about my liver MRI results (even though I know there will be no problem because Mr B can cut out whatever it is, whether good or bad)?

Could it be I’m subconsciously stressed by the up-coming surgery (on my gallbladder and, maybe, liver)?

Could it just be?

And, all these questions, could be the reason why I’m still not coping yet (hence the name of my blog)…

Related articles

• Live(r)ly Noises (fibromodem.wordpress.com)
• What Am I? Chopped Liver? (fibromodem.wordpress.com)
• Valium Vapours (fibromodem.wordpress.com)

Do you think Ernest Hemingway (author of the quote in the title) had FM?

As we all know, even if we are lucky enough to sleep 10 hours a night, we are still fatigued and exhausted.

Research shows that with FM, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles may not heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with FM wake up feeling tired and fatigued.

The result: The body can’t recuperate from the day’s stresses – all of which overwhelms the system, creating a greater sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of FM (just in case you hadn’t noticed!).

Insomnia takes many forms — trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Research shows that smoothing out those sleep problems – and helping people get the deep sleep their bodies need – helps fibromyalgia pain improve significantly.

But how?

Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally:

• Enjoy a soothing (warm) bath in the evening.
• Brush your body with a loofah or long-handled brush in the bath.
• Ease painful tender points with a self-massage device (like a tennis ball).
• Do yoga and stretching exercises to relax.
• Listen to calming music.
• Meditate to tame intrusive thoughts and tension.
• Sleep in a darkened room. Try an eye mask if necessary.
• Keep the room as quiet as possible (or use a white-noise machine).
• Make sure the room temperature is comfortable.
• Avoid foods that contain caffeine, including teas, colas, and chocolate.

Therapies to Treat Insomnia When You Have Fibromyalgia

If you’re still having sleep problems, several therapies can help, including biofeedback, relaxation training, stress reduction, and cognitive therapy. A psychologist who specializes in sleep disorders can discuss these therapies with you. The therapies help people handle stress better, which helps control FM episodes, When you’re stressed out, FM tends to flare and you feel worse – that’s when you’re most likely to have insomnia, too.

Medications can also help ease FM pain at night, or directly treat insomnia. Medications to ease pain and improve sleep include certain types of antidepressants, anticonvulsants, prescription pain relievers, and sleep aids.

BUT, as we kept getting told (a lot!), no one therapy will control FM pain 100 per cent. So start to mix it up and use all the tools that are beginning to come to light.

Related articles

• A Magic Pill? Not! (fibromodem.wordpress.com)
• 12 Sleep Tips for Fibromyalgia Sufferers (lifeinthefibrolane.com)
• 32 Solutions for When You Can’t Sleep (greatist.com)

Isn’t it funny, we all go to the toilet, but we don’t like to talk about it, particularly number twos.

Today, I had a ‘normal’ bowel movement – but what is considered to be a ‘normal’ bowel movement?

A bowel movement should be soft and easy to pass, though some people may have harder or softer stools than others. In general, stool should be brown or golden brown, be formed, have a texture similar to peanut butter, and have a size and shape similar to a sausage. In many cases, a stool that varies a bit from this description is no cause for alarm, especially if it is an isolated incident.

It seems that most of us, especially those with IBS issues, never have a ‘normal’ bowel movement. In fact, our ‘normal’ is more likely to be those ‘really difficult to push out rabbit droppings type,’ or the ‘rush to the closest toilet explosion,’ or even the ‘my ass is dribbling type.’

Most of us who live with FM also have IBS. FM and IBS are co-diagnosed in up to 70% of FM patients. IBS (also known as irritable colon, spastic colon, mucous colitis, or spastic colitis) is a disorder of the bowel, or large intestine. It is characterized by severe abdominal pain and cramping, changes in bowel movements, and a variety of other symptoms.

It has been estimated that as many as two-thirds of all IBS patients have FM, and as many as 70% of FM patients may also have IBS. These statistics differ greatly from the corresponding rates in the general population, where only 10%-15% of individuals are estimated to have IBS. It is unknown if the two conditions are related symptomatically or causally, or if their frequent co-occurrence is merely a coincidence.

Adding pain killers to the mix can be frustrating and painful.

Now, the ‘really difficult to push out rabbit droppings type’ tends to be a constipation. Constipation means different things to different people. For many people, it simply means infrequent stools. For others, however, constipation means hard stools, difficulty passing stools (straining), or a sense of incomplete emptying after a bowel movement. This is called fecal impaction, a condition in which stool hardens in the rectum and prevents the passage of any stool.  According to reports in the Journal of Psychosomatic Research, constipation or infrequent stools occur in 30% of FM sufferers.

Constipation also can alternate with diarrhoea. Diarrhoea is an increase in the frequency of bowel movements, an increase in the looseness of stool or both. It is caused by increased secretion of fluid into the intestine, reduced absorption of fluid from the intestine or rapid passage of stool through the intestine. This is the other two types of (what I refer to as) our ‘normal.’

My point to all this crap (Ha! Ha! Lol!) is that I get used to the IBS stuff: I have cramps, I take Buscopan; I have diarrhoea for too long, I take Immodium; and, if I’m constipated, greasy fish and chips seems to do the trick. But when I have a ‘normal’ poo, it feels like it is dragging all my insides out with it. It’s tiring and it’s physically draining. It leaves my body feeling empty (but not in a good way!).

So, is this what ‘normal’ feels like?

Further Reading: 

• Abdominal Pain & IBS
• Intestinal Fortitude
• An Honest Admission

Related articles

• Managing IBS-Related Constipation (everydayhealth.com)
• All About Laxatives (everydayhealth.com)
• Herbal Remedies For Constipation (onlineherbs.com)
• Natural Help To Relieve Irritable Bowel Syndrome Symptoms (smmirror.com)
• Poop Health: Everything You Want to Know But Haven’t Asked (greatist.com)

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.”

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-acupuncture. Both methods are used for FM.

Some 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

• (Acu)Puncturing the Pain

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

• Please, Help Yourself
• Shiatsu Saviour
• The Body Love Reflex

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:

• Fibromyalgia Treatments
• Realistic Expectations with Pain Management
• Treat Your Pain
• Treat Your Pain, Too

Related articles

• Alternative Treatments for Fibromyalgia (everydayhealth.com)
• How Exercise Fits In to Fibromyalgia Treatment (everydayhealth.com)

November 12th will be 6 months to International Fibromyalgia Awareness Day 2013. To continue our AWARENESS momentum, I am running a Feeling Fibro Fotos competition.

Entry: Nov 12,2012 – Nov 22,2012
Voting: Nov 23,2012 – Dec 12,2012

More details to follow…

Luckily (for some of you), low to moderate intake showed little to no association with pain severity, BUT the news is not as good for those individuals who live at their local Starbucks.

“There is a weak but significant relationship between caffeine consumption and pain severity in fibromyalgia patients,” said lead investigator Steven E. Harte, PhD, a research investigator in the Chronic Pain and Fatigue Research Center, Department of Anesthesiology, University of Michigan Health System, in Ann Arbor. “According to our data, there is almost no association between pain and low to moderate caffeine consumption.”

Very few previous studies have looked at high levels of caffeine and chronic pain severity.

This study included 252 patients who met the American College of Rheumatology’s criteria for fibromyalgia. Low caffeine consumption was considered to be 0.25-1.5 cups per day; moderate equalled 2-3.5 cups per day; and high consumption was more than 4 cups per day.  FM patients in the high caffeine-intake group reporting significantly greater pain levels than individuals in the low caffeine-intake group. No difference was seen between low and moderate caffeine consumption.

“This association appears to be driven primarily by those patients drinking eight or more cups of caffeinated beverages a day,” said Dr. Harte. “Thus, like most things, moderation is key when it comes to caffeine consumption.”

However, he also noted that it is possible that patients with worse FM pain and related symptoms (e.g., fatigue and cognitive deficits) “may consume more caffeine … to reduce these symptoms.”

There was no reference to how much sugar each person added to their coffee!

Related articles

• Coffee Concern (everydayhealth.com)
• How coffee reduces pain (thestar.com)
• Caffeine may alleviate sitting pains from office work (onehealthyblog.com)

Nonetheless, up to 20% of visits to a primary health care provider generate a prescription for a narcotic painkiller, or opioid, say Seth Berkowitz, MD, and Mitchell Katz, MD, of the Los Angeles County Department of Health Services write..

The scientists assigned almost 450 patients with chronic widespread pain, some of whom had FM, to get either “talk therapy” by phone, exercise, both talk therapy and exercise, or their usual treatment.

Talk Therapy

Four therapists underwent three days of training to learn how to provide psychological help to study participants receiving talk therapy. Patients chose goals, such as identifying and evaluating unhelpful thinking styles or making lifestyle changes.

After an initial assessment that lasted an hour, those participants receiving talk therapy spoke on the phone with a therapist for 30 to 45 minutes once a week for seven weeks. That was followed by a phone session three months and six months after the study began.

Importantly, evidence suggests that this talk therapy delivered by phone is as effective as face-to-face therapy, researcher John McBeth, PhD, an epidemiologist at the University of Manchester.

Exercise

Those in the exercise group were invited to meet with a fitness instructor once a month for six months. The goal was to improve their fitness by exercising 20 minutes to an hour at least twice a week.

Long-Lasting Benefit

Three months after the study ended, the phone therapy and/or exercise patients showed more improvement than those who’d stayed with their usual care.

The people who engaged in both talk therapy and exercise did only slightly better than those who received one or the other.

The new study is the latest addition to an “extensive” body of clinical trials demonstrating talk therapy’s effectiveness in treating chronic pain and headache, says Russell Portenoy, MD, chair of the department of pain medicine and palliative care at New York’s Beth Israel Medical Center.

“Cognitive behavioral therapy [talk therapy] should be offered to a far larger proportion of patients with chronic pain than currently is done,” Portenoy, who was not involved in the study. He cited several obstacles: Too few therapists trained to provide it, inadequate insurance coverage, a tendency among doctors to focus on medical strategies due to a lack of knowledge about talk therapy, and a lack of reimbursement incentives to offer other treatments.

In Australia, you can establish a GP Management Plan with your GP that, if eligible, will allow you a Medicare rebate for a maximum of 5 visits each calendar year (nowhere near enough but a start in the right direction). This could be any of the following (not a full list):

• Chiropractor
• Dietitian
• Exercise Physiologist
• Mental Health Worker
• Occupational Therapist
• Osteopath
• Physiotherapist
• Podiatrist
• Psychologist

To all: make sure to take advantage of each and every (if there are any) benefit available to you.

Related articles

• Realistic Expectations With Pain Management (fibromodem.wordpress.com)
• Physical Therapy for Pain Management (everydayhealth.com)
• Fibromyalgia and the Fear of Chronic Pain (everydayhealth.com)

In our case, often, being stressed causes pain AND/OR pain causes stress. Psychological therapies – including hypnosis, meditation, and relaxation – may help break the cycle.

For pain therapists, these treatments, which focus on the relationship between the mind and body, are considered mainstream.

For other health professionals, they may be considered alternative or complementary therapies.

And for the layman, they may be considered hocus pocus!

Regardless of how they are labelled, there is evidence that for many people they work.

Hypnosis

For many, hypnosis brings to mind a parlour game or nightclub act, where a man with a swinging watch gets volunteers to walk like a chicken or bark like a dog. But clinical or medical hypnosis is more than fun and games. It is an altered state of awareness used by licensed therapists to treat psychological or physical problems.

During hypnosis, the conscious part of the brain is temporarily tuned out as the person focuses on relaxation and lets go of distracting thoughts. The American Society of Clinical Hypnotists likens hypnosis to using a magnifying glass to focus the rays of the sun and make them more powerful. When our minds are concentrated and focused, we are able to use them more powerfully. When hypnotized, a person may experience physiologic changes, such as a slowing of the pulse and respiration, and an increase in alpha brain waves. The person may also become more open to specific suggestions and goals (such as reducing pain!) In the post-suggestion phase, the therapist reinforces continued use of the new behaviour.

Benefits of Hypnosis

Research has shown medical hypnosis to be helpful for acute and chronic pain. In 1996, a panel of the National Institutes of Health found hypnosis to be effective in easing cancer pain. More recent studies have demonstrated its effectiveness for pain related to other conditions. An analysis of 18 studies by researchers at Mount Sinai School of Medicine in New York revealed moderate to large pain-relieving effects from hypnosis, supporting the effectiveness of hypnotic techniques for pain management.

If you want to try hypnosis, you can expect to see a practitioner by yourself for a course of 1-hour or half-hour treatments, although some practitioners may start with a longer initial consultation and follow-up with 10- to 15-minute appointments. Your therapist can give you a post-hypnotic suggestion that will enable you to induce self-hypnosis after the treatment course is completed

To find a hypnotherapist, speak to your doctor.

More reading on Hypnosis: Look into my Eyes

Find a licensed Hypnotherapist:

The American Society of Clinical Hypnosis

American Psychotherapy and Medical Hypnosis Association

Mind Motivations - For US, UK and Australia

Therapy Tribe - for US, UK, Canada and Australia

Meditation

Meditation involves using a number of awareness techniques to help quiet the mind and relax the body. The two most common techniques are:

• Transcendental meditation. The patient repeats a single word or phrase, called a mantra, and is taught to allow other thoughts and feelings to pass.
• Mindfulness Meditation. The person focuses all of his or her attention on thoughts and sensations. This form of meditation is often taught in stress-reduction programs. Want to give this a try?

Benefits of Meditation

Studies suggest that meditating can increase pain tolerance, activity levels, and self-esteem and decrease anxiety, stress, depression, and use of pain medications.

Mindfulness meditation has been used successfully in programs to reduce pain and improve mood in patients with chronic pain from a variety of conditions, including headache, low back pain, chest pain, and gastrointestinal pain.

Because there are varied forms of meditation and opinions about requirements for training, there is no formal certification or licensing process for instructors. Training requirements differ widely by institution. If you would like to find a meditation instructor, speak to your doctor or a friend, who may be able to recommend one.

To practice meditation, repeated meetings with the instructor may not be necessary. A recent study examining the perception of pain and various mental training techniques has found that relatively short and simple mindfulness meditation training can have a significant positive effect on pain management.

Relaxation Therapies

Relaxation therapies include a range of techniques with the goal of reducing stress. In addition to meditation, the major types of relaxation techniques are:

• Progressive muscle relaxation: Also known as systematic muscle relaxation and Jacobson relaxation, this technique involves slowly tensing, briefly holding, and then releasing each muscle group in a systematic fashion, starting with the muscles in the toes and moving upward. During this exercise, the person should notice the differences between tension and relaxation.

MINI-RELAXATION PROCEDURE (for those on a tight schedule!)

For relaxation to be of the most benefit, you need to learn how to relax and calm yourself instantly upon your awareness of tension or irritability. While a 20-30 minute relaxation period is great, and very pleasant, you cannot escape and listen to your tape or do your long practice when you are tense in traffic or irritated with your family or co-workers.

A mini-relaxation is done as follows:

1. Take a deep breath and raise your shoulders slightly (until you can feel increased muscle tension).
2. Starting at the top of your head, focus on letting go of muscle tension (beginning with the muscles across your forehead). Allow sensations of relaxation, release, and heaviness to flow downward from your forehead, downward through your face, shoulders, arms, torso, and legs and imagine all the muscle tightness and tension draining right out your feet. Exhale as you allow the tension to drain away, and use your “key word” as you do so (this may be Relax, Peace, Calm, Serene, Ocean or any other word or phrase that denotes deep relaxation to you). Be certain that your deep breath was a deep diaphragmatic breath.
3. This whole procedure should take no more than about 30 seconds (and can be done in as little as 10 seconds if that’s all the time you have). At the end of this period, go about your business regardless of how relaxed you feel.
4. Repeat this process many times during the day, at least 20. Use the coloured dot procedure to remind yourself to do a mini-relaxation, preferably several times an hour. Place coloured dots in places you will see them often: your telephone, kitchen faucet, refrigerator, bathroom mirror, the door frame of doors you walk through frequently, your notebook or appointment book that you consult frequently, and even cut a small part of the coloured dot to place on your watchband. Whenever you see the coloured dot that is your reminder to do a mini-relaxation: deep breath, raise shoulders, let go of muscle tension as you breathe out and drop your shoulders, while repeating your ‘key word.’ You will notice that you become better and better at producing sensations of relaxation in a very short period of time, as you practice this over days and weeks. Do not extend your mini-relaxation more than one minute. If you are still tense, continue with what you are doing, and do another mini-relaxation the next time you see a dot, or the next time you are aware of feeling annoyed.

NB: A note of caution regarding relaxation if you are driving your car: Never practice long periods of deep relaxation while driving. Never listen to a deep relaxation tape while driving. Frequency is the key! The more you practice relaxation, or mini-relaxation, the better you will become at releasing stress and tension quickly and effectively.

Autogenic training: This technique uses visual imagery and body awareness to achieve relaxation. The person imagines being in a peaceful place and then focuses on different physical sensations, such as heaviness of the limbs or a calm heartbeat. People may practice on their own, creating their own images, or be guided by a therapist. Patients may also be encouraged to see themselves coping more effectively with stressors in their lives.

Breathing: Breathing techniques teach people to breathe effectively to relieve stress. While placing one hand on the chest and another on the belly, the person is instructed to take a slow, deep breath, taking in as much air as possible. During this, the belly should press against the hand. After holding their breath for a few seconds, patients are instructed to slowly exhale.

Benefits of Relaxing

According to a 1996 National Institutes of Health report, there is strong evidence to support the effectiveness of relaxation techniques for reducing chronic pain related to a variety of medical conditions. Other benefits may include reduced muscle tension and insomnia and increased activity level.

The best way to learn relaxation techniques is with the help of a trained practitioner (although you can find many guided meditations, etc. on the Net). Usually these techniques are taught in a group class and then practiced regularly at home.

There is no widely accepted license for practicing relaxation therapy. However, it is often practiced by therapists and psychologists. Ask your doctor for a recommendation.

More reading on Relaxation: Relax

Risks of Mind-Body Therapies

Although mind/body therapies don’t have the risks of medical or surgical therapies, there have been rare reports of adverse reactions from them.

• If you have poorly controlled cardiovascular disease, experts recommend avoiding progressive muscle relaxation, because abdominal tensing can cause increased pressure in the chest cavity, slowing of the pulse, decreased return of blood to the heart, and increased venous pressure.
• If you have a history of psychosis or epilepsy, you may wish to speak with your doctor before trying meditation. There have been reports of some people having further acute episodes following deep and prolonged meditation.
• Hypnosis or deep relaxation can sometimes worsen psychological problems in people with post-traumatic stress disorders or a susceptibility to false memories. Its use should be avoided in patients with borderline personality disorder, dissociative disorders, or with patients who have histories of profound abuse. Because competent hypnotherapists are skilled in recognizing and referring patients with these conditions, only appropriately trained and experienced practitioners should undertake hypnosis.

Related articles

• Meditation for Headache Relief (everydayhealth.com)
• 6 Breathing Exercises to Relax in 10 Minutes or Less (greatist.com)

Since I’ve been back from Bali, the hours of sleep I have been having have been increasing steadily.

Now, don’t get jealous – I don’t wake up feeling refreshed; in fact, I think I hurt more than ever. I wake up a number of times and try to move but it hurts so much that I end up falling back to sleep. I really don’t know what I’m doing while I’m asleep but…

That is the way my bed looks before I go to bed…
And this is the way my bed looks when I wake up!

You know how sometimes we say that we wake up feeling like we ran a marathon? Maybe I am!

Every night I take 150mg of Lyrica (I don’t think that helps me sleep as I take the same amount in the morning) and just 2mg of Valium, which is supposed to relax my muscles enough for them to rest while I am sleeping. I guess that’s not working.

So I really have no idea why I’m ‘sleeping’ so much. I do know that I keep putting off my bedtime because I really don’t want to wake up…in pain.

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?

Related articles

• Fibro Fog Explained? (fibromodem.wordpress.com)
• What is Fibro Fog? (lifeinthefibrolane.wordpress.com)
• The Curse of Fibro Fog (fibrofella.wordpress.com)

Today I saw my pain management specialist (from Rehab), in hopes that we’d be moving forward with the lignocaine and ketamine infusion. (Remember?)

Much disappointment followed as he wants to wait until I see the surgeon about my liver and gall bladder (just in case he says something like: To the hospital STAT!). It is totally understandable (his reasoning, I mean) but I am SO ready to try this treatment, especially after looking at some of the research done.

In a study completed in Sweden, pain intensity, muscle strength, static muscle endurance, pressure pain threshold, and pain tolerance at tender points and control points were assessed in 31 patients with FM, before and after intravenous administration of morphine, lignocaine, and ketamine.

The three different studies were double-blind and placebo-controlled:

• The morphine test did not show any significant changes.
• The lignocaine test showed a pain decrease during and after the infusion!
• The ketamine test showed a significant reduction in pain intensity during the test period. Tenderness at tender points decreased and endurance increased significantly, while muscle strength remained unchanged.

A-ha! This is what I want! And I want it NOW!

So what is this treatment?

What is the Purpose of the lignocaine infusion?

Nerve pain can occur due to many causes. This can cause burning; shooting pain that is difficult to treat. The circulating local anaesthetic reduces the activity of the damaged nerves and may reduce the pain. Here’s hoping!

What is a Lignocaine infusion?

The treatment involves infusing the local anaesthetic lignocaine into a vein that is usually inserted in the back of the hand. (Uh-oh! Really don’t like that part!)

How is the Infusion Performed?

Multiday (5-7 days) infusions are usually performed in a monitored bed in the high dependency unit.  The infusion is attached to the needle using a piece of tubing attached to a pump.

How long does the Block Take?

The multiday lignocaine infusion for neuropathic pain or headaches is usually run for 7 days.

Will the injection hurt?

The only discomfort will be the small needle being inserted in the hand.

What is ketamine?

Ketamine is used as an anaesthetic agent in high doses both in human and veterinary medicine; it is also known to be abused as a recreational drug. In smaller doses, it can be used to manage acute and chronic pain especially in those where the pain is so severe it is not controlled by other drugs.

How will ketamine help?

• ‘Pain-Relief: In the chronic pain population, ketamine is a useful drug, although it is not effective in every patient. The pain relief that can occur with a “short ketamine infusion” often “breaks the cycle”, and often lasts considerably longer than the infusion.  In the case of nerve pain or complex regional pain syndromes (CRPS), ketamine has been reported to produce remissions in the pain and other symptoms lasting many months.
• Other: Ketamine can reduce withdrawal symptoms and make it easier to cope with reduced doses of other analgesics. There is emerging evidence that ketamine has an antidepressant action and that it can reduce compulsive/obsessive behaviours.

Double bonus on this one – hopefully, it will short-circuit my brain into causing me less pain, while helping me withdraw from codeine (AND while I’m sedated, I figure it might help to quit smoking, too!)

How is ketamine administered?

The ketamine is usually given either by an intravenous (we’re going this one!) or a subcutaneous infusion.

What happens when the infusion begins?

As Ketamine can cause side-effects, you will be given a premedication of clonidine and an anti-nausea medicine. The infusion will be started at a low dose and gradually increased at intervals depending upon your progress and how well you tolerate the drug until the target dose is reached.  A nurse will be checking your breathing, heart rate and blood pressure regularly. The nurse will also be monitoring Pain scores and Sedation (sleepiness).

So, next week, I get to see the liver/gall bladder guy then, the first available appointment with the Pain Management Specialist is November 7^th.

Hello? I’m ready now – I even bought my hospital pajamas already!

*** For some interesting statistics that I discovered while researching, click here.

Related articles

• Looking for a Silver Lining… (fibromodem.wordpress.com)
• Yale scientists explain how ketamine vanquishes depression within hours (news.yale.edu)

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.

Related articles

• Facts and Figures (fibromodem.wordpress.com)

I read this post by Jen Reynolds (Creator and founder of FibroTV.com) in FibroTV Blog and thought it might get you thinking about how YOU manage your pain:

Realistic Expectations With Pain Management When You Have Chronic Pain

Pain management is essential when you have a chronic pain condition. Unmanaged pain can rip your life apart in all areas. When most people think of pain management the first thing that pops in their head is pain medication or medication to control the pain. There are many other options than just medication and you can also use an integrative approach to manage your pain by using medication and non traditional treatments  for pain management. Having realistic expectations with pain management is also very important. When you have chronic pain nothing is going to take away all the pain and if you keep reaching for that you are setting yourself up for a lot of frustration, discouragement, and disappointment. The only way to resolve pain completely is to address the underlying cause if at all possible.

Related articles

• Pain Management Without Drugs (everydayhealth.com)
• Physical Therapy for Pain Management (everydayhealth.com)

On average, the patients with FM displayed inferior performance compared with controls based on accuracy and response time. These differences were statistically significant, due to a lot of medical gobbledygook (as follows, if you can understand it):

During n-back tasks, researchers utilized functional MRI to study activated and deactivated brain regions. The researchers also found significant relationships between the FM group and the controls when using the Beck depression inventory and Beck anxiety inventory as covariates (P<.01 for both).

Between-group analyses showed that within the working memory network, the inferior parietal cortex was associated with pain ratings that were mild (r=0.309, P=.049) and moderate (r=0.331, P=.034). Two-sample between-group analysis showed significantly higher activation in the controls than the FM group in the ventrolateral prefrontal cortex (VLPFC), the thalamus, middle temporal cortex and inferior parietal cortex (P<.05, FDR-corrected for multiple comparisons at the voxel level). The comparison also showed the left dorsolateral prefrontal cortex, right VLPFC and right inferior parietal cortex were related to depression and anxiety ratings.

Basically, FM patients showed reduced activation in several brain regions which may be associated with impairments in maintenance and manipulation of working memory. The working memory deficit may result from both pain itself and depression and anxiety associated with pain.

1. Forty-one women were enrolled in the study — 19 with FM and 22 healthy participants. The mean ages of the patients were 38.73 years and 38.27 years, respectively. The control group included volunteers who were screened for chronic widespread pain, generalized weakness, sleep disturbance and specific tender points. The FM patients were recruited from outpatient rheumatic clinics at five hospitals in South Korea. The mean disease duration for FM was 39.41 months, and those patients showed average tender points of 13.37. Seven FM patients reported taking antidepressants: six on 75 mg pregabalin once daily, and one on 75 mg pregabalin and 25 mg milnacipran once daily.

My stomach is NOT my friend! I am lucky enough to swing from constipation to diarrhoea in less than the blink of an eye.

Research findings from the Walton Centre in the UK report that the small bowel in FM sufferers (and when it comes to IBS, we are definitely sufferers!) shows overgrowth of abnormal bacteria. The study demonstrated an increased intestinal permeability that produces increased hyperactivity of the intestines. Intestinal permeability means abnormal substances gain access to the body and alter its immune function.

Constipation

According to reports in the Journal of Psychosomatic Research, constipation or infrequent stools occur in 30% of FM sufferers. Constipation is defined as having a bowel movement less than three times a week. Some individuals complain of abdominal pain and straining to move the bowels in conjunction with the constipation.

Diarrhoea

Clinical Nurse Specialist describes diarrhoea occurring in up to 90% of FM sufferers. Individuals describe a pressing urge to move the bowels as well as passage of unformed stool. Diarrhoea occurs along with high levels of anxiety. Reports in the Journal of Nutrition indicate ingestion of probiotics decreases the symptoms of diarrhoea.

Fecal Incontinence

The Journal of Psychosomatic Research reports 2% to 7% of individuals with FM report uncontrolled passage of stool. This fecal incontinence transpires frequently in concurrence with diarrhoea and creates major problems in daily life. If it has ever happened to you, you never want to leave the house again (or, at least, without knowing where the closest toilet is!)

gastroesophageal Reflux Disease

According to the Journal of Psychosomatic Research, gastroesophageal reflux disease describes the condition where food travels backward from the stomach into the oesophagus. The oesophagus is the tube connecting the mouth to the stomach. Characteristic symptoms of gastroesophageal reflux disease include epigastric pain, a sensation of fullness, and heartburn. gastroesophageal reflux disease and other intestinal problems occur in 50% of FM sufferers.

I have tried some (very expensive) probiotics without any improvement. Basically, I make sure that I have a constant supply of Imodium, Buscopan and Durolax on hand, at all times.

Has anyone found something that works (not just on symptoms)?

Related articles

• Managing IBS-Related Constipation (everydayhealth.com)
• How Fiber Helps Ease Constipation (everydayhealth.com)
• What Does IBS Pain Feel Like & My Tips For Living With IBS (femaleimagination.wordpress.com)

My friend, Thais, in her own words, is OCD – total neat freak!

Today, after doing some shopping and while I was splayed across the couch trying to recover, we had a discussion. We were talking about how there was too much to do – how bags of different types of shopping are accumulating on the floor of my kitchen or bedroom, after being dumped there at the end of a trip out.

She said to me that, originally, she couldn’t understand how I could handle it. But now, after seeing how I can go out with her all excited and eager, then suddenly watching the life sucked out of me as our day goes on – she gets it (or, in her words, gets it as much as anyone without FM can!)

Thais is going away at the end of the month, for at least 6 months. What ever shall I do without a (non-cyberspace) friend to understand me?

I will miss you so much, Thais. Thank you for all that you do with me (and for me); and for bothering to maintain our friendship – it means more than I can find words for…

I have no idea how or when my Fibromyalgia developed. I do know that halfway through my studies, I developed depression. (Was this the first sign?) The next four years were spent going to doctors because I suffered from joint pain, headaches, exhaustion, insomnia – sound familiar? Finally, in November of last year, my GP sent me to a rheumatologist because my wrists and ankles were killing me and there was nothing wrong (supposedly). I was sick and tired of doctors. I was sick. And I was just plain tired…all the time.

All of this sounds like many stories I have heard from other sufferers. In a patient survey that looked at the impact of FM and a patient’s journey to diagnosis, the average time it took for an actual diagnosis, from the first time the patient presented to a physician about their symptoms, was 2.3 years. The survey involved 800 patients and 1622 physicians in France, Germany, Italy, Mexico, The Netherlands, South Korea, Spain, and the UK. Most countries had an average range of 2.1 to 2.7 years. The exceptions were Spain (3.7 years) and South Korea (0.6 years).

So, what takes so bloody long?

Firstly, patients wait a significant period of time before visiting a doctor, adding to the prolonged time to diagnosis. The average time taken to present to a physician was 11.1 months (range across countries 4.6 months in the UK to 18 months in Mexico). In total, 29% of patients did not present to a physician for their symptoms until at least 6 months after the symptoms were first experienced.

Then, patients typically present with a multitude of symptoms – which many doctors find difficult to correlate with FM, resulting in a delay in diagnosis and eventual management. The survey stated that ‘helping clinicians to diagnose and manage patients with fibromyalgia should benefit both patients and funders of healthcare.’ (And this is the reason we need to work so hard to promote awareness!) Patients had to visit an average of 3.7 doctors before receiving a FM diagnosis.

Overall, 59% of patients agreed that they had found it difficult to communicate FM to their doctors. Patients’ overall perceptions about some aspects of their experiences with physicians and FM were captured. Approximately three-quarters of patients reported that doctors needed to spend more time and to focus more on symptoms to diagnose FM.

Basically, the most significant result of this survey: patients had been experiencing FM symptoms for an average of 6.5 years before diagnosis!

The survey also showed that the association between the duration of symptoms and worse response to treatment confirms that earlier diagnosis and treatment may lead to improved treatment response and reduced impact of the condition.

As such, this kind of delay is unacceptable and frustrating; and further evidence of our need to increase our efforts in spreading awareness of this debilitating condition.

What are you waiting for? Start spreading!!!! 

It’s not unusual for people with any chronic illness to complain about having problems with their sex life. But a healthy sex life is important for many reasons:

1. Not only does sex strengthen an intimate relationship, but sexual intercourse boosts endorphins. Those are the body’s natural opioids that help decrease pain and increase well-being.
2. From my point of view (and many single FM sufferers), you are very lucky to have one – so you need to keep it up!

Talking openly with your doctor and following a few practical tips can help you resolve problems associated with FM, pain, and sex. Then you can begin to enjoy this aspect of your life again.

What Causes Loss of Libido With FM?

Some of the medications, such as Paxil and Zoloft, used in our treatment may cause reduced sex drive. If you take an antidepressant and have problems with libido, talk to your doctor. A simple change of medication or a reduction in dose may improve your sex drive and allow you to enjoy your relationships more.

Further, for some of us, having to deal with the uncomfortable symptoms of FM, including the ongoing pain, fatigue, anxiety, and stiffness, is difficult enough without thinking of being physically active with sexual activity. Learning to self-manage these symptoms with medications, exercise, and lifestyle habits may help to boost your sex life.

How Can I Have Sex if I Hurt all Over?

Some FM patients give up romantic aspirations for fear of further injury and pain. Yet being intimate with your partner is still possible. With FM pain and tender points, you need to work with your partner to find the most comfortable position during sexual intercourse. For instance, if you have FM with low back pain, you may find that having your partner on top or lying on his or her side is most comfortable for you. Or, if you’re a woman who has FM and hip pain, you might use a pillow between your knees to stabilize your body during sexual intercourse.

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(FYI: In the next issue of LIVING WELL with FIBROMYALGIA, there will be a ‘sealed’ Valentines’ Day section, showing specific positions (don’t worry, they are NOT photos of me!) that may help with different pains)

Just because you have always had sex in a particular way does not mean that’s the only way. You need to be patient, take it slowly, and find the best sexual positions that allow you to be intimate without causing further pain. Keep in mind, there is no right or wrong way to be intimate with your partner. It may be time to bring out that 1970s copy of the Karma Sutra that you have hidden at the back of your bookcase or night table – find the positions that work for you.

Can Soaking in a Warm Bath Before Sex Help?

Moist heat, including soaking in a warm bath, can help ease FM pain and may allow you to enjoy sexual intercourse – or any exercise – without added pain. Heat increases blood flow to the site and decreases stiffness.

When using moist heat, make sure it is not too warm or you can burn your skin. You might soak in a warm bath for at least 15 minutes before sexual intercourse or other physical activity to get the full benefit. You may also soak in a warm bath after sexual intercourse or other physical activity. Other popular types of moist heat include a warm shower (sit on a chair, if needed), warm whirlpool or hot tub, heated swimming pool, and a moist heating pad.

Is Stress Linked to Sexual Problems and FM?

Stress may trigger FM symptoms. Yet managing stress may help control your symptoms and balance your daily life, which can boost your libido. Stress management may include a combination of exercises, relaxation techniques (deep breathing or meditation exercises), a good sleep routine, and proper nutrition.

Exercise (including sex) releases endorphins, which are the body’s natural stress-fighting hormones, so any type of physical exercise is a good stress-control measure. Relaxation therapies such as deep abdominal breathing, visualisation or guided imagery, and meditation are also helpful in managing stress.

What Else May Help my Sex Life With FM?

If you have FM, talk to your doctor and see if medications can boost libido and/or sexual performance. Improving your overall health by treating any other medical problems may also help.

Related articles

• What Could Be Hurting Your Sex Life (everydayhealth.com)
• Libido Supplements and Vitamins for Sex – Do They Work? (everydayhealth.com)