Hidden Pain or Thick Fog?

Now, I get it.

When I was first diagnosed, my doctor put me on Lyrica immediately; and then, it was steadily increased. If you’ve been reading this blog, you’ll know that I’m weaning off it. (If you’re not up to date, check Whatever…Nothing!) Well, I’m up to Week 4: I’m pissed off, short-tempered and in pain.

doses

It has even ruined the best part of my week: my shiatsu massage.

Last week’s massage was fabulous. This week, however, was another story; and, as I said at the beginning, now I understand how some of you can’t stand a massage.

pain 1pain 2The same place (no idea what it’s called) was incredibly sensitive but it got to the stage where if Peter touched my shoulder, that spot hurt; if he touched my arm, that spot hurt; if he touched my knee, (you guessed it) that spot hurt.

pain 3pain 4In fact, by the time the hour was up, if Peter touched anything, that spot hurt!

pain 5

Why the hell am I doing this to myself?

Well, the good news is that the Fibro Fog has lifted. So tell me, which would you prefer: the pain or the fog?

It’s My Life!

Woah! Really busy for me out in the real world – there is actually a life for me beyond Fibromyalgia Awareness…

As you know, last night was my fabulous shiatsu massage; but, before that, I had a very-overdue botox injection (or lots of little ones) across my forehead: Botulinum toxin, commonly referred to as Botox®, is well-known for its cosmetic use to eliminate glabellar lines, the frown wrinkles between the eyes (which is fabulous) frown_lines_beforeyet it can also relieve migraine-type headache, muscle tension headache, or chronic daily headache. Results can be dramatic. Some patients (about a third) who have suffered from daily headaches for years report being free of headaches for two to five months; so I’m hoping (at least) some of my head pain will disappear.

After that, it was an appointment with my lap-band doctor – basically unnecessary because, during this whole month, despite hardly eating because of teeth pain, I only lost 400 grams (that’s a poo!). Hopefully, after this whole ‘Lyrica-weaning’ process, I will start to lose some (much un-needed) weight!

Driving Miss DaisyToday I was lucky enough to receive my very belated birthday present – a matinee performance of Driving Miss Daisy with Angela Lansbury and James Earl Jones. I had seen the movie (a very, very long time ago – after googling it, the movie was around 1989 so I was 18) but I really didn’t remember the entire Jewish storyline, only the black racism. It was pretty damn cool and I had a (very uncomfortable) seat in the second row (that’s from the front!)

And now, tomorrow, it is Z’s 3rd birthday party (so I’ll see my father for the 1st time since The Letter) – he decided to have a gardening party with minimal decoration (BUM!) but I did what I was allowed to:

hungry caterpiller (window)hungry caterpiller

balloons

His real birthday is on Tuesday so I prepared a treasure chest of presents…

chest closed chest opened

and decorated the spare-room at my house for when he sleeps over.

view from door full view

We’re going to the Zoo!

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Resurrection of our (Shiatsu) Saviour

***Please note that no disrespect was intended with the title of this post…I just like to play with words.

I have returned to shiatsu massage. (To tell you the truth, I have no idea why I stopped.)

Shiatsu literally translates as ‘finger pressure’ and is a Japanese therapy originating in Oriental medical theory and traditional Japanese massage techniques.

Shiatsu therapists treat the whole body as well as specific problem areas by addressing both emotional and physical well-being  The aim is to treat the body by balancing the flow of Qi (life energy); applying pressure to obstructed or weak areas. This relieves symptoms and resolves conditions, improving the patient’s strength and vitality. Shiatsu1The patient lies on a thin mattress on the floor, not a massage table which means the practitioner can use his/her body weight to increase pressure where it is needed, often synchronising the pressure with your breathing. Generally it is very relaxing but some acupoints will be more tender than others.

Shiatsu is recognised as being suitable for treatment of most common conditions including musculoskeletal, menstrual, digestive and immune system disorders as well as being one of the most effective therapies for stress management and relaxation.

eastwest_logo_for_WriteUpI go to a student clinic at East West College, which is a school that delivers training for the professional practice of Therapeutic Massage, Shiatsu, Oriental and Complimentary therapies.

Not so excited about students working on you?

Firstly, it is totally supervised. This is not one of those 6 week courses that people do at the local college – these are nationally and internationally accredited courses over 12 -24 months. Does that make the thought more comforting to you?

Next, it is $15 for an hour!!! (that’s introductory – normally $35) You really can’t beat that!

Lastly, it is fabulous!

There’s a new group of students (so my last masseuse/student has graduated) so I have been assigned to Peter. All my previous paperwork and notes were there for Peter so he knew what he was getting into (Poor guy!).

Our first session, last week, was pretty damn good. With a name like Peter, I guess you realise he is male (my last student was female) and his hands are large, strong and really warm. I think he was just a bit tentative with what he could and couldn’t do to my poor, wretched body…but I gotta say that, tonight, the man blew my mind!

This week, I have been suffering with an internal cold – it didn’t matter how high I turned the heating up or how much clothing I put on, I was shivering. And you know how sometimes the application of heat just helps? (Although sometimes it is cold that is necessary…gotta love Fibro, right?)

shiatsu5Well, today I didn’t even know that my muscles and joints were tight and cold but, each time that Peter touched my wrists, arms, calves, shoulders, etc, the warmth of his hands reached deep into my bones. He would touch one place and it was so welcoming that I didn’t want him to move his hands to the next spot…until he got there and, once again, my body welcomed his touch. (Sounds very sexual, doesn’t it? But it isn’t. Both parties are fully dressed and more than circumspect.)

At one point, he laid his hands carefully on the lower right-hand side of my pelvis, just above the bone – I jumped a mile. It seems that I have an energetic blockage in my large intestine meridian.

The function of the Large Intestine (Colon) meridian is eliminating the waste. The large intestine is called the ‘Minister of Transportation’.  It controls the transformation of digestive wastes from liquid to solid state and transports the solids onwards and outwards for excretion through the rectum.  It plays a major role in the balance and purity of bodily fluids and assists the lungs in controlling the skin’s pores and perspiration.

Coupled with the lungs by Metal energy, the large intestine depends on the lungs for movement via the expansion and contraction of the diaphragm, which works like a pump to give impetus to peristalsis by regulating abdominal pressure.

The Colon removes more than just the waste of the digestive process. It removes the waste of every organ and function, as well as mental and spiritual rubbish. If it is functioning properly, rubbish will not collect, stagnate and rot. There will not only be a clean body, but a clear mind – able to let go of old “baggage” of the past and take in new and fresh ideas.

Difficult to understand? Imagine a used-goods dealer: his success depends on the acquisition and sale or exchange of things people want and need, as well as the elimination of what is old, stale or unnecessary. A successful dealer is one who is vibrant and active. There will be no accumulation of rubbish in this guy’s shop. What will be found there will be of the highest quality, impeccably fresh and clean.

The large intestine relationship to the lungs makes it equally affected by the emotions of sadness, grief, and worry.  An energetic imbalance in the large intestine can result in physical weakness and provoke emotional introversion, accompanied by feelings of depression, irritability, discouragement, distress and apathy.  Strong emotions of fear or panic can produce an energetic-stool reflex reaction (such as IBS).

An imbalance of energy in the large intestine meridian is responsible for all abdominal pains. On an emotional level, an imbalance in large intestine energy manifests itself in difficulty with letting go.

So, Peter used his hands and body weight along the length of the meridian. I’m sure that I’m not cured but, for a short while at least, I feel better. While evidence of the efficacy of shiatsu is limited at this point, it is worthwhile to note that the risk is low and there are significant anecdotally reported benefits.

Listed below are links to research related to shiatsu therapy:

Now, I just have to work out a way to get him to come to my house to perform his magic so I can go to sleep immediately afterwards…do you think he’d stay and spoon me with his warmth?

spooning_clicks

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Where, oh Where…?

So, I’ve spent most of the day looking at current research and trying to find something to write about; BUT it’s all so BLAH!

203. acupunctureYes, acupuncture has been found to help those suffering from FM – where’s the new information in that?

Yes, marijuana has been shown to help those suffering from FM – where’s the new information in that?

Yes, dysmenorrhea is especially common in FM – where’s the new information in that?

Obesity, tai-chi, hydrotherapy,  shiatsu, reflexology, yoga – it’s all the same…there is nothing new!

I’ve kept reading, checking Facebook, watching tweets and I can’t find anything! And, obviously, I have done nothing else to tell you about. So, I’m setting you a mission: can you find (somewhere, anywhere) something new about FM?

images

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Can Sudafed Cure Fibromyalgia?

So, I’ve been in hell for the last couple of days with head, neck and face pain that would not quit. No matter how much Panadeine Forte and self-treatment I threw at it, it persisted. I had a reflexology treatment on Wednesday with about an hour of some relief. I hid in my darkened, heated house for the whole day Thursday; and on Friday, I went to physio and hydro – still no relief (except while actually in the pool). Tried a joint – it loosened my shoulders but my face felt like it was about to explode. In the evening, I went to a shiatsu treatment. By the time I drove home with all the lights in my eyes, I was ready to die.

Finally, despite knowing that the pain wasn’t sinus pain, I tried Sudafed PE and Panadeine Forte. Oh my, without jinxing it, relief! But how?

I looked up Sudafed PE and found that the three main ingredients are Guaifenesin, Dextromethorphan and decongestants. Hold on! I’ve seen that word somewhere – Guaifenesin?

Guaifenesin is an expectorant that helps thin and loosen mucus in the lungs, making it easier to cough up the mucus. No, that wasn’t where I’ve seen it…

Aah! The Guaifenesin Protocol: Dr St. Amand claimed that the drug Guaifenesin could treat FM symptoms by removing excess phosphate from the body. These deposits were believed to cause serious impediment of blood flow to these tissues, resulting in an impairment of vital cellular functions throughout the body. Naturally, if this were truly the case, it could explain the widespread pain and body-wide dysfunction that fibromyalgia patients have.  Now I know absolutely nothing about this protocol (other than what I have just looked up) so I do not mean to offend those who are fans/followers with this post. I am only making personal comments from my recent experience.

The removal of the phosphate should supposedly lead to a reversal of all FM symptoms, which would essentially be as close to a cure as possible.  Dr St. Amand claims that he has successfully reversed all FM symptoms in 90% of his patients.  Additionally, Dr St. Amand himself claims to have had fibromyalgia, but that he has been pain-free for decades.

At the 1996, Orlando American College of Rheumatology meeting, Robert Bennett, M.D., presented the results of his one-year placebo-controlled trial of Guaifenesin. The Oregon Health and Science University professor from Portland posed the following question at the opening of his speech: “Why on earth would someone choose to study an expectorant for the treatment of fibromyalgia?” Bennett says: “The answer lies in the realm of popular demand.”

As Dr Bennett explained, the study of Guaifenesin for the treatment of FM had to do with the patient demand for this drug and the frequent claims on the Internet and elsewhere that it was a cure for FM. The proponents of this ‘cure’ often claimed Guaifenesin wasn’t for wimps! Yes, as this drug was drawing the calcium phosphate deposits out of your tissues and into your bloodstream, you would have to go through symptom flare-ups. In the long run, after cycling in and out of severe pain, Guaifenesin would rid your body of the damaging effects of these deposits. As long as you stayed on a maintenance dose of this drug, you would live out the rest of your life pain-free. What an enticement, especially for those patients who are already up to their eyeballs in pain!

The likelihood that Guaifenesin was the cure was slim, but for the benefit of patients who were dumping conventional therapies to try it, Guaifenesin needed to be tested. Dr Bennett agreed to take on the arduous task of a one-year double-blind, placebo-controlled study to get to the truth about Guaifenesin.

Twenty FM patients were placed on Guaifenesin twice a day and another 20 patients took a placebo twice daily. None of the patients knew what they were taking, but all were given the same instructions to not take salicylates (like aspirin) because they interfere with the functioning of Guaifenesin. After a year, the response to Guaifenesin was the same as that for the placebo. Now, what about the claims on the Internet and elsewhere that this study was fatally flawed because patients might have used cosmetics and other topical products that contain salicylates? Dr Bennett provided six scientifically based reasons to toss out this claim:

Lastly, Guaifenesin was not found to increase uric acid or phosphate excretions. Thus the postulated action of Guaifenesin—the reason cited for its effectiveness—could not be demonstrated.

Dr Bennett commented, “We have shown the placebo is just as effective as the placebo!”

Nonetheless, Guaifenesin, also, has a property which is not well-known by many people (including doctors), but is well documented in the medical literature.  It is capable of acting as a skeletal muscle relaxant.  It does this by depressing transmission of nerve impulses in the central nervous system.  The reason that this information is not well-known is because Guaifenesin was a grandfathered drug, so it was never subjected to thorough testing, as later drugs had to be.  And it is not used for this property, by traditional doctors, because other drugs with similar properties were found to be more effective.

Hmm, maybe Sudafed PE is the cheaper alternative to all those expensive FM drugs?

PLEASE NOTE:

  1. I am not really promoting the use of decongestants or cough medicines to get Guaifenesin. There are potential side effects from various additives. I am NOT a medical practitioner and this post, although based on minimal internet research and my own personal experience, is tongue-in-cheek and should NOT be taken seriously.
  2. If any of my readers are actually on the Guaifenesin Protocol, perhaps they would be willing to tell us about their experience.

Rollercoaster Rush

My day was an absolute rollercoaster…

Woke up at 9.20am – not that bad, right? Except I had rehab at 10am! Jumped (as much as someone with totally sore bits can jump) out of bed, threw on some clothes and off I went – good thing that I laid out clothing last night!

 

As you know, I have only recently started driving short distances again – well, it started to rain on the way to rehab. Okay, turn on the intermittent wipers…cool. Then, it started to pour, just when I was trying to indicate and change lanes, between two trucks – AAARGH! Too much, too soon! I arrived at rehab in tears.

 

Had a wonderful hydrotherapy session at rehab. (Hmm, notice how short the UP posts are?)

 

 

 

After rehab, I had the all-important meeting at Arthritis Victoria with the General Manager of Development and Business Services.

 

 

Basically after about 45 minutes of talking about what a great job I’m doing at promoting awareness of FM, he suggested that I continue doing what I am doing or set up a peer support group. He cited all the government rigmarole as a giant hurdle plus the fact that I’m doing it all alone. I understand that BUT there is so much I want to do! Have to have a serious sit-down and think about what I’m going to do…especially as there appears to be less support from Victorian sufferers than the international sector (that’s mostly YOU!)

Exhausted after the meeting but have to make a stop at the post office (to send off another order from http://www.freewebstore.org/fibromodem) and supermarket – where a 90 year old lady asked me if I was alright because she thought that I looked like I was about to collapse – VERY SAD!

 

Finally got home and dumped wet towels, folders, notes from the meeting and shopping on the floor so I could just eat something – notice I haven’t eaten anything yet in this post and it’s about 3pm? Then, idiot that I am (sometimes), I turned on my computer and got side-tracked into reading emails and posts. By the time I had finished all of that, I had no time for a lie down before a 7.30 appointment.

 

7.30pm – Shiatsu. Thank you. Time to lay back, be pampered, be quiet and just get over the day.

 

 

 

 

Home

 

 

 

 

Food

 

 

 

 

Now sleep (hopefully!)

 

 

See? Rollercoaster.

Today is THE Day!

After dragging myself out of bed yesterday to do a round of expensive, yet very necessary shopping (my 20 year old washing machine blew up; the dryer is about to go (it’s not drying clothes after 1.5 hours); and the microwave can hardly heat milk), my AMEX had a workout but, at least, everything is again under warranty; and it’s the end of the financial year, so I got great bargains. And it will all be delivered and attached on Monday.

So today is all for me – it’s the fund-raising day at EastWest College which means my day will start with my friend, Thais, picking me up and both of us will be stretched and moved about with a Shiatsu massage. Then it’s off to brunch – somewhere where I can find strawberry pancakes with chocolate sauce, I think.

Next Thais will drop me back at the College, where Mommy will have been having her shiatsu, so that both Mommy and I can have some reflexology.

The day does not end there, folks. It’s my Dad’s birthday tomorrow, so tonight we’re having a Malaysian feast.

Z knows all about treating yourself.

It’s a very early dinner (5pm) so Z can attend and not be a total sleep-deprived brat. Then, hopefully, Z will return to my house to sleep for the night (giving his mother some well-deserved rest) where he has not been since I put all the glow-in-the-dark stars in his room. I’m hoping to see the delight on his face and sing Twinkle Twinkle ’til he falls asleep. 

There, that will be my magical day. Hopefully all the treat-myself treatments will prepare me for the harder part of time with Z.

The Body Love Reflex

I’m in LOVE!!!


Her name is Amy – no! I haven’t turned – Amy is the student therapist who performed my reflexology treatment. I want her to spend every night with me – then she will be there in the morning to do amazing, mind-blowing things to my feet!

Remember I told you about the ‘reflexology massage’ (and I use that term loosely, now that I know the REAL thing) that I had at one of the little Asian places that have popped up in all shopping centres? Well, it was nothing like that.

I was taken into a warm, womb-like room – absolutely welcoming after the 11 degree temperature outside. Amy gave me a choice of a comfy chair or the practitioners’ bed. I hate those platform things so it was the chair for me. My socks came off and Amy wiped down my feet (not quite as nice as a Balinese foot-wash but still refreshing).

Then three deep breaths as Amy held pressure to my feet, and off we went. I expected to just lie back and relax because I had been feeling very fragile, with a headache that had been hanging on for four days and the decathlon-performance pain that we all know too well; but, instead, very slowly, I became energised and we talked about all the different nerve endings in my feet (did you know there are over 7000?) and what organs and other bits were affected when she touched different parts of my feet.

As a therapy, reflexology is not invasive – only the feet, and/or hands and ears are worked. It is deeply relaxing yet surprisingly energising – while I was lying back in my chair, I was thinking to myself ‘yeah, this is nice but that’s about it!’ You may feel you are being pampered during a reflexology session but do not underestimate the powerful effects this treatment can have on all of your body systems. After going back to reception, I suddenly realised that I felt great. There was still a dull ache in my left shoulder but my head didn’t hurt and I almost bounced back to Mommy’s house (about three blocks away).

I’m booked in Shiatsu tomorrow, reflexology next Wednesday and another Shiatsu on the Friday after. Like I said – I’m in love!

Shiatsu Saviour

Last night, Mommy surprised me by taking me for a shiatsu massage. Almost every day, we pass EastWest College, which is a school that delivers training for the professional practice of Therapeutic Massage, Shiatsu, Oriental and Complimentary therapies. Almost every day, we have said that we should go there. So last night, we did.

Shiatsu literally translates as ‘finger pressure’ and is a Japanese therapy originating in Oriental medical theory and traditional Japanese massage techniques.

Shiatsu therapists treat the whole body as well as specific problem areas by addressing both emotional and physical wellbeing. The aim is to treat the body by balancing the flow of Ki (life energy); applying pressure to obstructed or weak areas. This relieves symptoms and resolves conditions, improving the patient’s strength and vitality. The patient lies on a thin mattress on the floor, not a massage table which means the practitioner can use his/her body weight to increase pressure where it is needed, often synchronising the pressure with your breathing. Generally it is very relaxing and although some acupoints will be more tender than others.

Shiatsu is recognised as being suitable for treatment of most common conditions including musculoskeletal, menstrual, digestive and immune system disorders as well as being one of the most effective therapies for stress management and relaxation.

Currently, there is a randomized clinical trial being carried out by the University of Sao Paulo General Hospital, with the aim of verifying the efficacy of Shiatsu in the improvement of pain, flexibility, quality of sleep, anxiety and quality of life of individuals with FM. (This study is ongoing but no longer accepting participants.)

The EastWest College offers massage and reflexology as well as Shiatsu, so I know that I’ll be going back – in fact, I have already phoned and left a message.

The massage courses offered by EastWest College cover many of the different styles of massage such as Relaxation, Swedish, Sports, Remedial, Shiatsu and Lymphatic.  Particular emphasis is placed on the integration of Oriental and Western Massage, which allows graduates to acquire professional skills in Oriental tactile medicine in combination with the popular musculoskeletal therapy of Remedial and Therapeutic Massage.

I have talked about reflexology before as a healing art that uses acupressure and massage on the feet, hands or ears to promote relaxation, alleviate pain, treat illness, and stimulate the body’s ability to heal itself. Reflexology aims to help the body’s energy circulate effectively without blockages, stagnation or energy loss by manipulating reflex points in the feet, hands or ears. Unlike acupuncture, reflexology is non-invasive.

Not so excited about students working on you?

Firstly, it was fabulous – my masseuse/student explained everything that she was doing, made sure that I wasn’t hurting too much (I had told her about my FM); and, actually built up a sweat working and stretching out my tired and taut body. Maybe I was lucky but Mommy (with sciatica) was thrilled with her massage, too.

Next, it is totally supervised. This is not one of those 6 week courses that people do at the local college – these are nationally and internationally accredited courses over 12 -24 months. Does that make the thought more comforting to you?

And finally, it was $15 for an hour!!! (that’s introductory – normally $35) You really can’t beat that.

I know that this particular college is in Melbourne, Australia but perhaps you may now consider giving the opportunity to students, near you, to learn (and become aware of FM) while receiving the benefit of a great treatment!