A Mish-Mash Update Post

You might remember back in January, I wrote Bigger is NOT Better. As part of a recent campaign in Australia, I pledged to lose 30 kilograms (about 66 pounds).

I am reminding Sherri Caudill Lewis, Lara from Live your dream life and sparkle, Kimberley Hatfield- Patty, Valerie Dunlop, Vicki, FibroLogic (all people who commented on the original posting), and all those who didn’t comment but decided they wanted to lose weight, that we are still in this together. How are you all going?

Anybody else trying to lose some weight to feel better?

I have lost 9 kilograms so far and I’m working really hard to try to exercise more and eat less (chocolate, cheese & ice-cream). The new season of BLThe Biggest Loser just started and I decided that it was the perfect time to do sit-ups and crunches each day. I figured that if I was going to lose all this weight, I didn’t want a ‘flappy’ tummy. I knew it was going to hurt; but I hurt everyday so, I thought, let’s make it worth it.

My Pain Specialist vetoed that idea! The more stomach muscle spasms I was having, the less I could do any aerobic exercise (ie: walking).

So, I have just returned from my warm water exercise class (a permitted activity), where I worked as hard as possible (and, I can tell already, was too much). Right now, my body feels all stretched out and fabulous BUT tomorrow I know that my muscles will be screaming!

brilliance-1stIn my shower, afterwards, I test drove a hair colour called Ultra Violet. I thought I may be able to get a great purple (I’m going Purple for the entire month of May!) in one process. I stopped at my hairdresser’s first to check that, if it didn’t give the desired result, we could bleach it out and try another purple. It’s still damp but it’s looking more red than purple – BUMMER!

***AM.02-11.LubesTip of the Day***The exciting news is that I found a new use for lube. I couldn’t find any Vaseline to put around the edges of my hair (to stop my skin going purple) so I tried lube (especially seeing as I’m not having any sex) and it works really well – ***Tip of the Day***

So, that’s all my latest news…have you got any plans for International Fibromyalgia Awareness Day?

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.’

Fibromyalgically Sexy! (bet you haven’t seen those two words in a sentence together before!)

It’s been a long, exhausting day. It’s only 9pm, but you feel like it’s 4 in the morning and you’re ready to fall over. Suddenly your other half looks at you in that way, smiles and strokes your arm, and you know they want to make love, but all you can do is stare at them in shock.

Do you NOT know how I’m feeling?

Decreased sexual interest is not a common characteristic of FM. Nonetheless, a 2003 Brazilian study, involving women in their 40s and 50s, half of whom had FM and half of whom did not, found that the healthy group was likelier to have had a regular sexual relationship in the last six months than those with FM. The FM group members were less satisfied with their sex life, had more pain during intercourse, experienced more fatigue during sexual intimacy, and were less likely to initiate sexual intimacy than healthy women.

We already know that FM is more foe than friend.  While many of us are too tired for sex, it is the muscle pain that leads to pressure and a squeezing of the pelvic area and lower back that ultimately result in muscle cramping during sexual intercourse. This naturally causes a great deal of discomfort for an individual with FM, making it difficult to engage in certain sexual behaviours.

Sex eventually becomes something that is no longer pleasurable (I can’t believe I said that!), but a negative experience. One’s natural tendency is to avoid such physically intimate situations, especially given that one is too tired or sore for sex. So, who can be bothered?

Further, taking a toll on one’s sex life are FM medications that decrease libido and a man’s ability to attain or maintain erection. Anti-depressants can also take a toll on one’s sexual functioning. A person living with FM may react negatively to bodily changes, like weight changes and the loss of muscle mass.

As lovers feel less connected in the boudoir, their sexual relationship takes a hit (ie: unless they take steps to stay mentally and spiritually connected while attempting to be physically intimate). It’s important to realise that the release of hormones and endorphins, natural opioids, during sex can help to relieve FM symptoms, like pain and depression, and boosting well-being. This double-sided sword is that while sex can relieve symptoms of FM, like pain and depression, FM itself results in a decreased libido, fatigue and pain that hinder the individual’s desire and ability to engage in sexual intercourse.

Maintaining your sex life is vital to your health and well-being. In order to have a healthy sex life, why not try some of these pointers:

  1. Practice acceptance. Adapt. Make peace with the fact that you need to deal with this condition, and then allow yourself to reclaim your life in every way.
  2. Maintain a regiment that helps you to feel good about yourself – not necessarily just grooming. Sometimes you need to treat yourself to feel good. Take yourself off for a hot oil massage or a manicure.
  3. Stay physically active, preferably with your partner, as much as possible, as another way to feel better about yourself, possibly boosting your sex drive.
  4. Manage stress with relaxation techniques like meditation.
  5. Talk to your doctor about how your condition is affecting your sex life, including any medications that may be at play.
  6. Arm yourself with information. Become educated about your condition and how FM impacts your sexuality and sexual expression. This is a must in talking to your partner about everything that’s taking place. Being informed can also help to alleviate your lover’s concerns, helping both of you to stay emotionally connected.
  7. Allow your partner to be more active during sex if possible (Absolutely nothing bad about THAT!)
  8. Plan for sex after luxuriating in a warm bath or using a moist heat application, both of which ease FM pain, inflammation, muscle spasms, and stiffness.
  9. Experiment with different sexual positions. There are plenty of activities and positions that are ideal for fatigue; and many ways to avoid painful sex. And have fun trying them ALL out!
  10. Enjoy each other despite flare ups. Part of this is not being so goal-oriented during a love-making session. Allow things to happen as they can.
  11. Stay physically connected by just cuddling (unless such is not made possible by allondynia, where the brain misinterprets neutral or pleasant stimuli for pain).

Finally? Don’t give up. It might feel like you’re never going to want to have sex ever again – but that’s the fibro talking, not you. Lust strikes at the oddest moment, and people can have sex in a myriad of ways. So have fun exploring what works best for you. and you’ll feel IT again. And when you do, take advantage of it, and enjoy it!

N.B. This whole post (and the research involved) developed from me wanting to tell you about the new thongs/g-strings now available in my shop. However, as I looked into it more, it became increasingly difficult to ask if you were feeling unapologetically naughty. Hmm – obviously, I did anyway.