A Stable, Changeless State

Prior to my wonderful boobie experience yesterday, the Centrelink (Social Security department) appeals lady phoned me for more information. We discussed why ‘they’ decided that my condition was not fully stabilised.

Because Mommy and I begged my third rheumatologist (her almost in tears, me with tears dripping down my face) to refer me to rehab (which is costing me a small fortune) and to experiment a little with my medication (I was started on Lyrica back in November and nobody wanted to try anything different before giving up on me and any improvement), my condition is not considered to be fully stabilised.

Supposedly, it doesn’t help that the doctor’s report (from the first rheumatologist) states that he believes that there will be significant improvement within 3 to 12 months (despite telling Mommy and I that there was nothing else he could do for me – how was this improvement supposed to come about, then?)

Then there was the second rheumatologist who decided that all I needed to do was tidy up my ‘sleep hygiene.’

So, I’m up to my third rheumatologist who also thinks he cannot do anything for me, so Mommy and I decided we had to do it ourselves but we still need him (or my GP) for referrals and their prescription pads.

But it appears that for Centrelink to decide that my condition is fully stabilised, I need to give up. I need to remain on my current medication. I need to continue to feel my current pain. I need to lose my train of thought on a regular basis. I need to feel exhausted every day. I need to recoil from daylight. I need to shy away from bright lights at night (and during the day). I need to endure my restless nights. (You get the idea.)

But this is what it seems Centrelink requires from me. The lady told me it wasn’t quite over yet – but don’t get my hopes up.

Lucky me – after that fabulous conversation, I got to have a needle in my boobie (actually three)!

Poor Sleep = More Pain? Wrong!

So you think that, if you have a shitty night’s sleep, your overall pain will be worse? It seems we’re wrong! (maybe – another study could be released at any time!)

Many FM patients complain about poor sleep, and studies have shown that interrupted sleep experienced by individuals with other pain conditions is predictive of next day clinical pain. Also, sleep duration has been shown to predict clinical pain in healthy adults. In a 2007 study, the researchers concluded that ‘sleep quality was significantly predictive of pain, fatigue, and social functioning.’

Over 75% of individuals with fibromyalgia report disturbed sleep BUT results, in a more recent study of 74 adults with FM, replicate previous research and suggest that spatial extent of pain, pain after-sensation, and negative mood play important roles in clinical pain, but sleep disturbance did not aid in its prediction. The test subjects were observed for 14 days. Subjects rated their clinical pain every evening and completed sleep diaries describing the previous night’s sleep.

None of the four sleep measures evaluated in the study failed to significantly predict clinical pain.

Previous research has shown that variables such as negative mood and the number of localised pain areas are a more significant predictor of clinical pain in FM patients.

Tips for Better Sleep

• Establishing better sleep hygiene can help manage the symptoms of fibromyalgia.

Keep a sleep diary. Write down how you slept each night and triggers that may have interfered with your sleep. Reviewing your notes over several weeks may give you insight into your sleep problems.

Avoid long daytime naps. Extensive napping can interfere with night-time sleep.

Have a regular time to wake up each morning. A regular arousal time helps strengthen circadian cycling and leads to regular times of sleep onset.

 

Curtailing the time in bed seems to solidify sleep. Excessively long times in bed seem related to fragmented and shallow sleep.

• Use relaxation therapies.

A gentle massage and deep breathing are potentially beneficial to managing fibromyalgia and boosting restful sleep.

Lavender bath bubbles in a warm bath about 2 hours before going to bed, or on your skin in the form of a lotion or oil; or lay a sachet of lavender on your pillow

You can also play a relaxation CD before falling asleep and repeat it all night long. Or start it again if you wake up. (Don’t have a CD? try www.soundsleeping.com – yes, I love this site!)

Chamomile tea can be very soothing and relaxing before bed or even in the wee hours of the morning, when you can’t get back to sleep.

Valerian combined with other herbs can help some people get a better night’s sleep (this hasn’t done a lot for me).

Exercise regularly (but avoid exercising three hours before bedtime). Exercise may exert its beneficial effect by promoting better-quality sleep.

• Keep the temperature in your room cool. An excessively warm room disturbs sleep.

• Hunger may disturb sleep; a light snack of carbohydrates (chocolate?) may help sleep.

• Avoid caffeine or alcohol in the evening. They both disturb sleep. (There goes the chocolate idea!)

Sleep Well (please)!

 

References

American Pain Society (2012, April 23). Role of impaired sleep in fibromyalgia pain explored. ScienceDaily. Retrieved April 27, 2012, from http://www.sciencedaily.com­ /releases/2012/04/120423103724.htm.

Anderson RJ, McCrae CS, Staud R, Berry RB, Robinson ME, Predictors of clinical pain in fibromyalgia: examining the role of sleep, J Pain. 2012;13(4):350-8.

FibromyalgiaHope.com. Fibromyalgia and sleep. Retreived April 27 2012, from http://www.fibromyalgiahope.com/fibromyalgia-and-sleep.html

Web MD. Fibromyalgia and Sleep. Retreived April 27 2012, from http://www.webmd.com/fibromyalgia/guide/fibromayalgia-and-sleep.