The First Time

Many of us think we’re stuck: nothing is going to change, this is it, this is my life!

But why? There are still so many things we can do – and, for those of us stuck at home, perhaps a new opportunity to try something new.

It’s halfway through the year and here’s what I have done for the time:

18 January 2012 – Attended my first burlesque performance

2 February 2012 – Attended my first hydrotherapy class

27 February 2012 – Started my first Facebook page

6 March 2012 – Attended my first Bowen therapy treatment

13 March 2012 – Went to the Doggy beach for the first time

16 March 2012 – Wrote my first Blog post

28 March 2012 – Made my first video

1 April 2012 – Opened my first Cafepress store

4 April 2012 – Attended my first Pilates session

12 April 2012 – Attended my first Yoga session

18 April 2012 – Attended my first Tai Chi class

22 April 2012 – Z sleeps over for the first time

25 May 2012 – Produced my first cartoon character (FibroModem Girl)

1 June 2012 – Published my first newsletter

1 June 2012 – Attended my first Shaitsu treatment

7 June 2012 – Attended my first reflexology session

***NB – dates are from my own diary and may be incorrect as compared to blog posts.

Now I’m not trying to toot my own horn here – what I am trying to do is inspire you into trying something new. It can be absolutely anything – somewhere in all of that, I tried to make vegetable muffins for the first time – massive failure! So you could try baking, meditating, reading a new author, etc.

So tell me, when was the last time you did something new? And what was it?

A Prescription for Exercise

Since stopping work and being diagnosed with FM, I have increased my exercise intake (is that the appropriate word?) Each week, I do two hydrotherapy sessions, a tai chi class and I am testing out different yoga/Pilates classes to fill in two other spots. Along with that, I now walk (to the shops, doctors’ appointments, etc) every day. I have done all of this for two reasons – 1) I’m not driving so I have to walk; and 2) my doctors (as well as all the websites) told me to exercise. No-one told me why.

Has anyone told you why we need to exercise? (other than the ‘normal’ health reasons)

Most of us have much more important things on our minds than exercise, like painful tender points, deep muscle pain, and fatigue, so why is exercise important for fibromyalgia?

  • Studies show that exercise helps restore the body’s neuro-chemical balance and triggers a positive emotional state. Not only does regular exercise slow down the heart-racing adrenaline associated with stress, but it also boosts levels of natural endorphins. Endorphins help to reduce anxiety, stress, and depression.
  • Exercise acts as nature’s tranquilizer by helping to boost serotonin in the brain. Serotonin is a neurotransmitter in the brain that scientists have found to be related to fibromyalgia. While only a small percentage of all serotonin is located in the brain, this neurotransmitter is believed to play a vital role in mediating moods. For those who feel stressed out frequently, exercise will help to desensitize your body to stress, as an increased level of serotonin in the brain is associated with a calming, anxiety-reducing effect. In some cases it’s also associated with drowsiness. A stable serotonin level in the brain is associated with a positive mood state or feeling good over a period of time. Lack of exercise and inactivity can aggravate low serotonin levels.
  • A new study, at the Georgetown University Medical Centre in Washington, D.C., suggests that exercise may improve memory in women with FM. Decreased brain activity, due to aerobic exercise, suggests that the brain is working more efficiently. The researchers suggest that one of the benefits of exercise for fibromyalgia patients is that it may streamline brain functioning. It may help free up brain resources involved in perceiving pain and improve its ability to hold on to new information. The findings may help explain why regular exercise decreases pain and tenderness and improves brain function in people with fibromyalgia. (These findings were presented at a medical conference. They should be considered preliminary as they have not yet undergone the “peer review” process, in which outside experts scrutinize the data prior to publication in a medical journal.)

What Are Other Benefits of Exercise for Those With Fibromyalgia?

Regular exercise benefits people with fibromyalgia by doing the following:

  • burning calories and making weight control easier
  • giving range-of-motion to painful muscles and joints
  • improving a person’s outlook on life
  • improving quality of sleep
  • improving one’s sense of well-being
  • increasing aerobic capacity
  • improving cardiovascular health
  • increasing energy
  • placing the responsibility of healing in the hands of the patient
  • reducing anxiety levels and depression
  • relieving stress associated with a chronic disease
  • stimulating growth hormone secretion
  • stimulating the secretion of endorphins or “happy hormones”
  • strengthening bones
  • strengthening muscles
  • relieving pain

How Can I Get Started Exercising With Fibromyalgia?

If you want to start exercising, it’s important to start slowly. Begin with stretching exercises and gentle, low-impact activity, such as walking, swimming, or bicycling. Muscle soreness is normal when you are just starting an exercise regimen. But if you have any ‘abnormal’ pain, stop and call your doctor. You may have overworked or injured your muscles.

Are There Exercises to Avoid With Fibromyalgia?

There are no particular exercises to avoid if you have fibromyalgia. Aerobic exercise (running, jogging), weight training, water exercise, and flexibility exercises can all help. Golf, tennis, hiking, and other recreational activities are also healthful. If you have other medical problems or if you’re planning more than a moderate-intensity exercise program, discuss your plan with your doctor before you start.

Off to self-help hydrotherapy now…

Treat Your Pain

Many experts believe the best treatment for fibromyalgia is a multifaceted approach that combines medication with lifestyle changes and alternative treatments. And, it looks like Mommy and I have been left alone to learn how to manage/treat/cope/handle/survive (choose the most appropriate verb) my fibromyalgia. Having read lots of your stories and received plenty of advice, I am working on my own treatment plan – do I have a choice?

But what about if you’re new to all of this? Where do you even start?

A treatment plan gives structure to getting from here to there. Be realistic and (yes, you’re already probably sick of hearing this already) small steps! A treatment plan is different from devising goals because of its flexibility and internal exploration. In most clinical settings, a treatment plan review is done quarterly or even monthly. After each review, the plan is rewritten to meet current needs.

Start With a Diagnosis

There are no lab tests for fibromyalgia. Doctors diagnose it by considering criteria such as how long you’ve had pain and how widespread it is, and by ruling out other causes. This can be a long and complicated process because the symptoms associated with fibromyalgia can be caused by other conditions. So it’s best to see a doctor who is familiar with fibromyalgia – which can be easier said than done, sometimes!

Learn About Fibromyalgia Medications – You are YOUR Best Advocate!

Once you’ve been diagnosed with fibromyalgia, your doctor will talk to you about treatment options. Several types of medicines are used to help manage fibromyalgia symptoms such as pain and fatigue.

Three medications are FDA-approved to treat fibromyalgia:

  • Cymbalta (duloxetine): a type of antidepressant called a serotonin and norepinephrine reuptake inhibitor (SNRI). Researchers aren’t sure how Cymbalta works in fibromyalgia, but they think that increasing levels of serotonin and norepinephrine help control and reduce feelings of pain.
  • Lyrica (pregabalin): Lyrica is a nerve pain and epilepsy drug. In people with fibromyalgia, it may help calm down overly sensitive nerve cells that send pain signals throughout the body. It has been effective in treating fibro pain.
  • Savella (milnacipran): Savella is also an SNRI. While researchers aren’t exactly sure how it works, studies have shown that it helps relieve pain and reduce fatigue in people with fibromyalgia.

Antidepressants are also sometimes prescribed to help people manage fibromyalgia symptoms:

  • Tricyclic antidepressants. By helping increase levels of the brain chemicals serotonin and norepinephrine, these medications may help relax painful muscles and enhance the body’s natural painkillers.
  • Selective serotonin reuptake inhibitors (SSRIs). Your doctor may prescribe one of these types of antidepressants by itself or in combination with a tricyclic antidepressant. SSRIs prevent serotonin from being reabsorbed in the brain. This may help ease pain and fatigue.

These medications are also sometimes prescribed for fibromyalgia:

  • Local anesthetics. Injected into especially tender areas, anesthetics can provide some temporary relief, usually for no longer than three months.
  • Anticonvulsants or seizure medications such as Neurontin are effective for reducing pain and anxiety. It is unclear how these medications work to relieve the symptoms in fibromyalgia.
  • Muscle Relaxants are occasionally prescribed to help alleviate pain associate with muscle strain in those with fibromyalgia.

Stay Active

Exercise is an important part of managing fibromyalgia symptoms. Staying physically active can relieve pain, stress, and anxiety.

The key is to start slowly. Begin with stretching and low-impact activities, such as walking, swimming or other water exercises, or bicycling. Low-impact aerobic exercises such as yoga, tai chi, or Pilates can also be helpful. Prior to starting any exercise routine, or if you want to increase the intensity of your exercise, talk with your doctor.

Physical Therapy

Physical therapy can help you get control of your illness by focusing on what you can do to improve your situation, rather than on your chronic symptoms.

A physical therapist can show you how to get temporary relief from fibromyalgia pain and stiffness, get stronger, and improve your range of motion. And she can help you make little changes, such as practicing good posture, that help prevent painful flare-ups.

Alternative Therapies

A number of popular fibromyalgia treatments fall outside the realm of mainstream medicine. In general, there hasn’t been extensive research on complementary and alternative medicine (CAM), but anecdotal evidence suggests that some may work. Always talk with your doctor before starting any alternative treatment.

Popular alternative treatments include:

  • Acupuncture. This ancient healing practice aims to increase blood flow and production of natural painkillers with thin needles inserted into the skin at strategic points on the body. Some studies report that acupuncture may help ease pain, anxiety, and fatigue.
  • Massage therapy. This may help reduce muscle tension, ease pain in both muscles and soft tissue,improve range of motion, and boost production of natural painkillers.
  • Chiropractic treatment. Based on spinal adjustments to reduce pain, this popular therapy may help relieve fibromyalgia symptoms.
  • Supplements. A number of dietary and other supplements are touted as treatments aimed at relieving fibromyalgia symptoms. Some of the most popular for fibromyalgia include magnesium, melatonin, 5-HTP, and SAMe, which may affect serotonin levels. However, results of studies on these supplements are mixed. Be sure to talk with your doctor before taking any supplements. Some may have side effects and could react badly with medication you are taking.
  • Herbs. As with supplements, scientific evidence for the effectiveness of herbs is mixed. A few studies have shown that St. John’s wort can be as effective as certain prescription medication for treating mild depression.

This is just a start – and you will probably need to tweak your plan as you go along, throwing out activities and treatments that don’t work for you, while grasping the positives with both hands. Remember, it may take a while to get where you want to be – it is all about experimentation (and just because something works for me does not mean it will work for you). Lastly, try not to get discouraged (Ha!) but we’re all here to support you.

A Balanced Body

Ahh…BodyBalance:

BODYBALANCE™ is the Yoga, Tai Chi, Pilates workout that builds flexibility and strength and leaves you feeling centred and calm. Controlled breathing, concentration and a carefully structured series of stretches, moves and poses to music create a holistic workout that brings the body into a state of harmony and balance.

The class started with a tai-chi warm-up…cool – I can handle that! Then, into some of the yoga moves that I had done previously. When we hit the downward dog,

I had to dodge Mommy’s dirty looks – what the hell have you gotten me into? Down into the plank – if looks could kill!

The Plank!

And onto the mat for the yucky part – pilates core workout! Guess what? I still haven’t developed any stomach muscles (ummm…and it seems neither has Mommy!) More yoga, some flowing tai chi and finishing with a 10 minute meditation to clear the mind.

(I haven’t gone into great detail because the class was definitely, as promised, a fusion of all three other classes: yoga, pilates and tai-chi as described in previous posts).

I must say that the final meditation was very much appreciated, as I dripped sweat onto my mat and waited to be scraped from the floor.

Earlier in the day, Mommy and I went to visit the doctor (rheumatologist #3). I tried to motivate him with the promise of fame, fortune and untold riches (He could be the One! The One who could show empathy! The One who could publish numerous journal articles! The One that all FM patients would seek!) Erm…it seems he wasn’t interested.

So, the plan is:

  1. maintain Lyrica dosage – 150 mg am & pm (til step 6);
  2. stop taking the Prednisolone (no weaning as I was only on it for a week);
  3. visit GP on Friday to start weaning off Sertraline (anti-depressant actually being used for depression) over the week;
  4. no anti-depressant for one week (should be some interesting posts that week!);
  5. start Cymbalta (until we find correct dose for my depression);
  6. reduce morning dose Lyrica;
  7. reduce evening dose Lyrica.

Of course, steps 6 and 7 will only be attempted if necessary; and step 5 may take quite a while. If at any stage, I find that everything feels better, then I’ll be leaving it as is. I have a follow-up appointment with Rheumatologist #3 in 3 months.

So it looks like it’s up to me and Mommy (and my poor GP – she doesn’t know yet! with as much input from you guys as you feel like giving) to discover the secret (at least, the one that works for me) behind managing the pain, fatigue and fog and returning to work.

Oh! What a Beautiful Morning!

The sun has come through those doggone clouds that have been here all week (and will return soon – Winter is coming!) The sky is blue. And I’m feeling exceptionally positive! (That could be because of the prednisolone, though, because all your warnings were correct and the ups and downs of this drug are berserk!) But everything is better when the sun is shining (except when it is too bright and causes my eyes and head to hurt – can’t I just be happy?)

Today I woke to marvellous comments on all my social media sites – it was almost like it was my birthday…but better – because I didn’t have to get a year older! The total and utter depletion of any energy from my body, that was yesterday, has been replaced with (some) buoyancy.

My Sickness Allowance came in so I was able to pay some money to my VISA. (I don’t even realise how much stress that puts on me until I press the PAY button and I can sigh with (some) relief.)

My wonderful Mommy and her cantankerous (yet loveable) partner, Henry, are going to ambush my previous rheumatologist. I have been waiting 7 weeks for him to complete a medical report so I can continue my appeal for Disability. I’m really glad I’m not going to be there – it will be really loud and embarrassing, but it should scare the shit out of him! There are appropriate times to cause a scene! This is one. If I don’t get that form returned in time, I will miss out on approximately $2000 in back pay. Go Henry!!!!

I am returning to the doctor, armed with all of your drug suggestions, to plot the next path in my course. I was thinking about it yesterday. I’ve decided I want a young, motivated doctor – some-one who is still positive and wants to be the best! some-one who wants to discover new things, who wants to be published, who is willing to experiment with new things! It seems that the older the doctor, the more jaded he has become! We need CHANGE THE WORLD doctors!

This evening, Mommy and I are going to our first BodyBalance class, which is supposed to be a fusion of tai-chi, yoga and pilates. Yay! some-one to come to classes with me! I’m looking forward to it – I can imagine Mommy and I giggling at the back of the room, like schoolgirls, falling and having to help each other up. You know I will let you all know how the class goes.

So, all-in-all, a great (actually, probably really normal – but it’s amazing what a positive attitude will get you) sounding day!

And, in case, you’ve been waiting with bated breath – here are some photos from Z’s party:

Word Association

How cool is this!

This is a Word Cloud from Wordle. I discovered it by visiting Falling Out of the Fog. Wordle is a toy for generating word clouds from text that you provide. The clouds give greater prominence to words that appear more frequently in the source text. In this case, I put my blog through the toy.

It appears that I am great propounder of RELAXATION (although fibromyalgia is not that far behind). But do I practise what I preach?

Today was Tai Chi day – a relaxing hour of moving meditation. Then it was off to a new gym with my Mommy to find out about Body Balance classes – a holistic fitness program combining yoga, tai chi and Pilates. Mommy and I are going to try to go twice a week – and this is from a woman who doesn’t exercise. Although I think I can remember some Jane Fonda Beta videos back in the early 80s.

And now, here is where some relaxation techniques may have been useful…

On the way home, I called my rheumatologist, who has still not returned a finished medical report for my disability claim, for my weekly nag and reminder about this! (Don’t you think 8 weeks is long enough to fill in a form?)

Then, I received a phone call from Centrelink – supposedly I was no longer eligible for Sickness Allowance. What the HELL? Allegedly (oh, look! I’m still a lawyer!), information received from my employer made me no longer eligible. Supposedly I didn’t have a job to go back to – WHAT! I have an office there! I have 10 certificates framed and hanging on the wall there! I have business cards printed with that address! And, more importantly, I had spoken to my boss last week and everything was still okay. Anyway, the lady I was speaking to wasn’t permitted to give me any specific information about what had been said but she put me through (after a 20 minute hold time) to apply for a job seekers (incapacitated) payment application. This process was going to take at least 2 weeks – that’s 2 weeks without ANY money!

I made the appointment then got on the phone to my boss. After a quick discussion, I drafted a fax for him to sign and send to the original lady so that, hopefully, my eligibility will be reviewed and I can get paid. Quick(-ish) phone call back to that lady to make sure she knew that this (really important!) fax was coming through to her; then sit back and take a breath.

But NO! A phone call from my semi sister-in-law (my brother and her are living in sin!) about writing a legal-sounding letter to the supermarket, where two runaway trolleys had taken out the back of her car.

Then, some internet research about making an objection about misleading and deceptive conduct by Metricon (a building company in Australia) who, in my opinion (and the Australian Competition and Consumer Commission agree!), are trying to charge my brother an extra $10 000.00, for something that was supposed to be included.

Finished? Not yet…Another phone call – this time to my medical insurance company. It should have been easy – all I wanted was to know how much money I would receive after ordering my contact lenses. Obviously, not such an easy question.

Big sigh! Gotta say that letting all that out is a great relaxation technique! I feel so much better!

To Do…Or Not to Do?

Just got home from my self-help hydrotherapy class. I have to walk to the hospital for the class (takes about 20 minutes); then it’s an hour class, and a walk home. I’ve stretched out all my sore muscles from the Pilates class yesterday – so they feel elongated, unfolded and able to breathe.

But they are also VERY tired.

I was planning to go to yoga tonight. I haven’t ever done yoga before. I was looking forward to the class; and it is part of my free gym pass, so I can test it (before investing any money) before deciding if it is for me.

But I am severely lacking in motivation right now; not to mention that my body would REALLY like to sit (or lie) on the couch.

The description under the gym’s timetable states that the yoga class is: Floor work and stretching exercises, excellent for improving flexibility, balance, breathing, healing specific ailments and enlightening the spirit.

Yoga is a vast collection of spiritual techniques and practices aimed at integrating mind, body and spirit to achieve a state of enlightenment or oneness with the universe. What is normally thought of as YOGA in the West is really Hatha Yoga, one of the many paths of yoga. The different paths of yoga emphasize different approaches and techniques, but ultimately lead to the same goal of unification and enlightenment.

This sounds exactly like something I would like to do. It sounds wonderfully inspiring, if slight airy-fairy. But, as you may have noticed, I am open to anything that may return me to the energised little bunny that I used to be.

So, you have an hour to vote, do I go to the class or not?

Ten Hours Sleep…and more

I slept 10 hours last night!

Was it the melatonin? Was it the Pilates class (and in case you’re wondering, yes! OW again!)? Was it the afternoon meditation session? Was it babysitting Z for a couple of hours? Was it taking my Lyrica earlier? Was it a mixture of CoQ10, Alpha Lipoic Acid and Eleuthera Root? Was it all my sex and fibromyalgia research? Was it because I had such a bad night’s sleep the night before?

Was it a mixture of all of the above and more?

See? That’s the problem – as FM sufferers, if we hear about something that helps another sufferer, we try it. Nothing wrong with that.*

If we hear about a multitude of things that help, we try them all. Nothing wrong with that.*

The problem arises when we try to work out what actually helps us, and what just happens to be coincidental… You won’t find me having a month in which I take melatonin, then stop to take only the Pilates class for a month, then do a month of Pilates AND melatonin, etc. and recording each result in a methodical and scientific way. I did try this for a short time – but I don’t have the time to waste. I want to feel better NOW!

If something helps some-one, I’m going to try it ASAP – don’t you? If I spent a month trying each ‘remedy’ alone, then a month doing them in pairs, then a month…any-one good at equations?

And, ultimately, it wouldn’t actually help… Somewhere along the line, I would have a night where I slept 10 hours – but this couldn’t be applied to anyone else because, as we all know, everyone’s fibromyalgia experience is different. Lucky us!

My point: don’t give up looking for what might work for you – it might be alternative and wacky, but it might work!

And don’t envy my 10 hours sleep – I woke up still wanting more!

* As long as we consult the appropriate health professional first!

P.S. Can you tell I’m trying to avoid doing the clothes washing? How many posts is that today?

Started One Place…Finished Elsewhere

And back from Pilates

…having first asked them to display some Awareness:

But this post isn’t about the Awareness Campaign, it’s about my lousy night’s sleep last night…you know that sleep where you feel that you’re only ‘drowsing’ (is that a real word?) in and out, where anything can and does wake you, where you open your eyes and you’re still too tired to move or get up but you can’t fall back to sleep properly, where it feels like hours but it’s only been 4 minutes since you looked at the clock, where you never feel refreshed; and where you still have highly vivid dreams.

I am assuming that all of this is because I didn’t take my zolpidem last night and went with the melatonin – but I fell asleep well enough, I just couldn’t stay asleep……And I’m so tired but, at least, I know why.

I have been involved in some very carefully plotted murders, ending up by me running into a court and interrupting, holding a milk carton, and telling them to wait in a very dramatic turn of events.Think black and white movie a la 12 Angry Men, but with loads of action scenes a la NCIS and Criminal Minds; then add strobe.

It’s very difficult to watch and it hurts my head and my eyes, but I can’t really do anything about it as it’s playing on the huge screen in my head.

I always wake up before I know what happens next – no matter how much I fight to get back to that place in the movie. I don’t know if I actually wake up or if I was dreaming in my dream of me dreaming and waking up. All I know is that when I finally wake up (properly), I feel like I have done some big time running and thinking!

It is with that background that I attended Pilates today. On my walk to the gym, my stomach muscles began protesting – how did they know where I was going? It’s been a week since the previous class, so I had thought that any left-over delayed onset muscle soreness would have disappeared – WRONG! the minute I tried to do anything from the table top position (hee! hee! aren’t I the expert?), my transversus abdominus and internal oblique muscles began to scream. I would have thought that I would have been able to do more (as compared the previous class) this week – WRONG again! Not only did everything hurt more but I seemed to be much more uncoordinated. My entire balance was off, way off! And the room was spinning before my eyes after every new movement.

Think this will turn me off it? Not yet, I’m going back Thursday evening – the stretching still felt amazing (at the time, anyway)!

Circuitously Healthy

I have been working on being as pro-active as possible in my battle against FM: I’ve given up Pepsi-Max, I’m exercising my little heart out and I’m alternating therapy. I’ve been trying to change my diet and introduce more vegetables. When I went on that lunch with Thais, I had an absolutely amazing Harvest Pie – loaded with a massive amount of vegetables (you have no idea how hard that is for me to say!) Since then I have been trying to replicate that pie (and I DON’T cook) in both a pie and muffin version. In the process, I would not be under-estimating that I have thrown away about $80 of ingredients. So, that’s it – I am not trying again. I shall stick to the packet cake section of the supermarket (although one version of a pie was not bad)!

Anyway, back to the point, getting healthy. Yesterday I visited the doctor. As a side issue, I asked about melatonin. She was all for it and promptly gave me a script for Circadin. The active ingredient in Circadin is melatonin.

Melatonin is a hormone produced naturally by the human body. However, the amount of melatonin an individual’s body produces decreases with age.

Melatonin is secreted by the pineal gland (a hormone-producing gland in the brain) according to a circadian rhythm – that is, a time pattern that is repeated each day. The pineal gland begins secreting melatonin each day in the evening. Secretion peaks in the early hours of the morning (2–4 am), then diminishes in the remainder of the night and remains low throughout the day, before melatonin secretion commences again the following evening.

Melatonin, both naturally produced and added to the body in medication, functions to control the body’s circadian rhythm (its rhythm over a 24 hour period, including patterns of sleep and wakefulness). It also controls the body’s response to the dark-light cycle. It induces a hypnotic effect and increases sleepiness.

It’s very expensive for a drug that isn’t really a drug ($38.40). In fact, it is more than double the Zolpidem (Stilnox). I have to take it between one – two hours before bed-time, which means a) I have to remember, and b) I have to plan it, rather than just taking it and falling asleep almost immediately. I’ll have to let you know how this one goes.

And, once again, I got side-tracked…getting healthy! Despite all the complaints and pain during the last week, I have not been discouraged and I am about to embark upon my second Pilates class – hmmm…really, really long way to tell you that, huh?