Where Have I Been?

So, I’ve been MIA (Missing In Action)…why?

I have been slowly weaning off my Lyrica (see posts below for previous updates) to see if we can find something else that will allow me to feel less pain but with less side effects.

dose last

And I have finally made it to Week 6…

No! I do not feel miraculously better – in fact, I feel horrible. I didn’t realise what the Lyrica had been protecting me from (although it didn’t feel like much at the time). Let’s work from the head down:

  • No respite from the permanent headache
  • Very lazy right eye
  • Cheekbones growing out of my face
  • (Even more) increased sound sensitivity
  • Everything smells pungeant
  • Sensitive teeth
  • Itchy face
  • Aching neck and shoulders
  • Swollen-feeling wrists and hands (without swelling)
  • Costochondritis
  • Stomach cramps
  • Acid reflux
  • Diarrhea (whether I eat or not!)
  • Taut calf muscles
  • Swollen-feeling ankles and feet (without swelling)
  • Inability to remain asleep
  • No inner temperature control

Sounds like everybody else, right? But it seems that the Lyrica had reduced the impact of some of that. I just hadn’t realised how much. But the Lyrica also brought complete and utter fog.

And now I’m back at square 1; ready to start again, in a couple of weeks, to see if we can find a more effective medication regime, that will still allow me to think like a normal person!

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Scary With You is Better Than Scary Without You

Some-one wrote that I was incredibly honest, shamelessly honest. But right now, I’m about to be shamefully honest – I am full of shame for how I am feeling about the topic that I am choosing to write about today.

I have fibromyalgia (you know that) and, before that, I suffered with 3 years of debilitating depression. It has been a VERY long time since I have felt good, alive, normal. I can’t remember what it feels like to fully enjoy life; and I definitely have no idea how to enjoy life as a grown-up.

Before all of this, I worked on a cruise ship so life was just one big party – now, I’m supposed to be an adult with a career in law. And, I don’t know how to be that kind of normal.

So here comes the shameful part: I’m scared of getting better!

I’ve felt bad for so long, and I don’t know who I am without being sick. It’s almost like a screwed-up safety blanket. In the state I’m in now, I don’t need to deal with real life; I can hide away in the darkness of my bedroom; I can put my head in the sand; and pretend that nothing is going on around me.

And I’ve gotten used to sleeping when my body tells me to (not an alarm clock), spending lots of quality time with my Mommy, meeting my whole neighbourhood.

Doesn’t that sound awful?

In between the depression and FM, I had a short period where I think life was normal (although I was already feeling unexplained pain, fatigue and sensitivities) so I might just be afraid that, if I get better, it won’t stay that way.

I guess what I’m trying to say is I don’t know what to do when I start feeling better, if I start feeling better. It’s terrifying and I don’t understand that. I should want to get better with my whole heart and, in some ways, I don’t.

During this time, I have found I have very few friends, very few people I can depend upon (although a couple of surprises have popped up) and I’m petrified that I will doubt future relationships forever (whereas, right now, it feels like I won’t even make those relationships).

I’m worried that I won’t be able to continue where I left off with my career – I was already an old first-year lawyer; now I’m an even older first-year lawyer, who may not remember anything she learned during her 6 years of study.

I’m scared that I will never get out of this hole of debt that I have accumulated while being sick – but, if I stay sick, I have an excuse.

I’m frightened that I can’t handle normal life – with work, make-up, driving, washing, cleaning, paying bills, social obligations, continuing professional development…oh, and the list just goes on.

I’ve lost SO MUCH time and I feel VERY sad about that.

What we go through each and every day is horrible, but after so long, it becomes normal… And while it seems ridiculous to be afraid of getting better, it may (probably!) just be a fear of change…It doesn’t seem right to feel this way, but I do.

BUT I really don’t have a choice… I have to try to get well and I’m scared.

My Life has the Tendency to Fall Apart When I’m Awake

Do you think Ernest Hemingway (author of the quote in the title) had FM?

As we all know, even if we are lucky enough to sleep 10 hours a night, we are still fatigued and exhausted.

Research shows that with FM, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles may not heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with FM wake up feeling tired and fatigued.

The result: The body can’t recuperate from the day’s stresses – all of which overwhelms the system, creating a greater sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of FM (just in case you hadn’t noticed!).

Insomnia takes many forms — trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Research shows that smoothing out those sleep problems – and helping people get the deep sleep their bodies need – helps fibromyalgia pain improve significantly.

But how?

Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally:

  • Enjoy a soothing (warm) bath in the evening.
  • Brush your body with a loofah or long-handled brush in the bath.
  • Ease painful tender points with a self-massage device (like a tennis ball).
  • Do yoga and stretching exercises to relax.
  • Listen to calming music.
  • Meditate to tame intrusive thoughts and tension.
  • Sleep in a darkened room. Try an eye mask if necessary.
  • Keep the room as quiet as possible (or use a white-noise machine).
  • Make sure the room temperature is comfortable.
  • Avoid foods that contain caffeine, including teas, colas, and chocolate.

Therapies to Treat Insomnia When You Have Fibromyalgia

If you’re still having sleep problems, several therapies can help, including biofeedback, relaxation training, stress reduction, and cognitive therapy. A psychologist who specializes in sleep disorders can discuss these therapies with you. The therapies help people handle stress better, which helps control FM episodes, When you’re stressed out, FM tends to flare and you feel worse – that’s when you’re most likely to have insomnia, too.

Medications can also help ease FM pain at night, or directly treat insomnia. Medications to ease pain and improve sleep include certain types of antidepressants, anticonvulsants, prescription pain relievers, and sleep aids.

BUT, as we kept getting told (a lot!), no one therapy will control FM pain 100 per cent. So start to mix it up and use all the tools that are beginning to come to light.