Home vs Bali

Remember yesterday, when I left dinner early because my head hurt from all the noise and heat? Well, I got home and took 1000mg of paracetamol (remember, no codeine for 5 days! I had hardly taken any in Bali). Ha! Like that was ever going to touch my pain?

By 10pm, I was in a state of major agitation (slight understatement!) – I had tried my heat pack on my neck with the cooling gel pads on my face, then a frozen eye pack, then some more water (maybe I was just dehydrated?) I was nauseous with the pain, and feeling hot then cold then hot. I took some anti-nausea tablets – almost threw them up. And some Valium – ditto there. I was lying on the couch and I couldn’t move because every movement hurt my head and neck and shoulders. I was literally becoming delirious with pain.

So, I called my Mommy, and I was hardly coherent (so she tells me).

‘Forget the no painkillers. Take some Panadeine Forte now!’ she said. See? I couldn’t even make that decision for myself by this stage. Then she came over (good thing she lives only 15 minutes away) and put me to bed, and rubbed my head and shoulders (softly) until I fell asleep (what a good Mommy!)

‘Good thing you’re not living in Bali,’ she says.

I reply (I can finally speak now), ’This doesn’t happen in Bali!’

I woke up this morning feeling a little more human, although the headache was still there, so I took two more Panadeine Forte. Two hours later, I could function again.

So, now I’m not sure how I’m going to stop the codeine – my doctor said some people need to be hospitalised – but I have definitely begun my search for a villa in Bali!

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Day 2 without Cymbalta (and no other anti-depressant)!

Walking up the street; pause to catch my breath but feels like my body is still moving!

18 degrees celsius and I’m sweating profusely (this had better stop before Bali or I’m in big trouble!)

…

Get back home & sit down – heart pounding throughout my whole body! What is that?

Absolutely boiling to death.  Leave door open to allow cool breeze to come in.

…

Now freezing. Close door and turn up heating.

Call Mommy to give her my reflexology session as there is no way I can drive that far.

Can I make it to Zack’s (restaurant) for dinner? asks Mommy. It’s only a 3 minute drive – Sure, I think.

…

Drive to Zack’s. Make myself carsick – can you do that if you’re the one driving?

Boiling again. Wait outside restaurant, in cool breeze, ‘til Mommy gets there.

Starving! Haven’t eaten all day, due to nausea.

Breathed in a Coke. Felt much better – supposedly, sugar (and chocolate) makes depression slightly better!

Ate dinner – boiling again! And nauseous…thanks for dinner but I have to leave NOW!!!

Drive home. Leave door open to allow cool breeze to come in.

…

Now freezing. Close door and turn up heating.

Want to pull off my face, to get to the pain underneath.

You know how you can put your thumb in that hole-type spot at the bottom of your skull, to relieve the pain emanating from there? Where is that spot under your cheekbones? I NEED that spot.

Swallow a handful of panadeine forte with some water. Rip bra off. Pain patch on my spot between my neck and my shoulder (have no idea what it’s called!)

Feels like my arm is going to tear off – from my clavicle down. Can’t even feel the pain patch.

Pain under my ribcage, like my body has been squished between the thumb and forefinger of a giant.

Pounding heartbeat again. I think I’m dying.

Need to lean back between lines of this post as leaning forward is making me nauseous…

Enough now – please go away.

You get the idea.

Sleep Searching

As most of us are really, really feeling, non-restorative sleep is a core symptom of FM. What would you give to get a good night’s sleep?

While it seems logical to assume that pain leads to disturbed sleep, there is increasing evidence that dysfunctional sleep leads to hyperalgesia (an increased sensitivity to pain) and allodynia (the experience of pain from a non-painful stimulation of the skin).¹ These symptoms are the classical features of FM.²

It cannot be coincidental that FM-like symptoms can be induced in healthy normal people by the deprivation of stage 4 (N3) sleep,³ leading to hyperalgesia, fatigue and bodily hypersensitivity.⁴  As such, it is reasonable to believe that the improvement of sleep patterns will be beneficial to us.

Sodium oxybate (SXB) is thought to reduce non-restorative sleep abnormalities. SXB is another name for GHB, a substance that is often illegally sold and abused. It is prescribed to prevent attacks of cataplexy (episodes of muscle weakness that begin suddenly and last for a short time) in patients who have narcolepsy (a sleep disorder that may cause extreme sleepiness, sudden uncontrollable urge to sleep during daily activities, and cataplexy). Sodium oxybate is in a class of medications called central nervous system depressants. It has been marketed under the name Xyrem, and is approved in the USA, Canada and Europe for the treatment of symptoms in narcolepsy. The way that SXB works to treat narcolepsy is not known.

Results from a recent international phase 3 trial,⁵ combined with findings from previous phase 2 and 3 studies, provide supportive evidence that SXB therapy offers important benefits across multiple symptoms in patients with FM.

573 patients with FM (according to the 1990 criteria) were enrolled at 108 centres in eight countries. Subjects were randomly assigned to placebo, 4.5g or 6g of SXB per night. Assessments were made in the areas including reduction in pain, function, sleep quality, effect of sleep on function, fatigue, tenderness, health-related quality of life and the patients’ impressions of change in overall wellbeing.

The proportion of patients who experienced more than or equal to 30% pain reduction was 42.0% for 4.5g SXB and 51.4% for 6g SXB. Quality of sleep improved by 20% for 4.5g SXB and 25% for 6g SXB. Sounds good, right?

Adverse effects included nausea, dizziness, vomiting, insomnia, anxiety, somnolence, fatigue, muscle spasms and peripheral oedema (the swelling of tissues, usually in the lower limbs, due to the accumulation of fluids) in less than 5% of patients. Nothing we haven’t experienced before, right?

So bring on the clinical trials…

 

 

 

1. Lautenbacher S, Kundermann B, Krieg JC. Sleep deprivation and pain perception. Sleep Med Rev 2006;10:357–69; Kundermann B, Spernal J, Huber MT, et al. Sleep deprivation affects thermal pain thresholds but not somatosensory thresholds in healthy volunteers. Psychosom Med 2004;66:932–7; Roehrs T, Hyde M, Blaisdell B, et al. Sleep loss and REM sleep loss are hyperalgesic. Sleep 2006;29:145–51; and Moldofsky H. Rheumatic manifestations of sleep disorders. Curr Opin Rheumatol 2010;22:59–63.
2. Wolfe F, Smythe HA, Yunus MB, et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum1990;33:160–72.
3. Moldofsky H, Scarisbrick P, England R, et al. Musculosketal symptoms and non-REM sleep disturbance in patients with “fibrositis syndrome” and healthy subjects. Psychosom Med 1975;37:341–51.
4. Roehrs T, Hyde M, Blaisdell B, et al. Sleep loss and REM sleep loss are hyperalgesic. Sleep 2006;29:145–51.
5. Spaeth M, Bennett RM, Benson BA, Wang YG, Lai C and Choy EH. ‘Sodium Oxybate Therapy Provides Multidimensional Improvement in Fibromyalgia: Results of an International Phase 3 Trial.’

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