When Sleep Won't Come

I've been really struggling to sleep for years, and more recently I find myself sleeping really fitfully and (I'm told) snoring loudly, talking and shouting out in my sleep and generally being really restless.

When I wake I feel like I haven't had any sleep at all, yet I can't go back to sleep - so if I wake at 3am I am up at 3am!

I just can't seem to get any restorative sleep - it's no wonder I look like this

In an attempt to combat this ridiculous sleeping pattern I scoured the internet and found this:

Eight Tips for Good Sleep

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• Keep regular sleep habits. Try to get to bed at the same time and get up at the same time every day—even on weekends and holidays.
• Avoid caffeine and alcohol in the late afternoon and evening. If consumed too close to bedtime, the caffeine in coffee, soft drinks, chocolate, and some medications can keep you from sleeping or sleeping soundly. Even though it can make you feel sleepy, drinking alcohol around bedtime also can disturb sleep.
• Time your exercise. Regular daytime exercise can improve night time sleep. But avoid exercising within 3 hours of bedtime, which actually can be stimulating, keeping you awake.
• Avoid daytime naps. Sleeping in the afternoon can interfere with night time sleep. If you feel you cannot get by without a nap, set an alarm for 1 hour. When it goes off, get up and start moving.
• Reserve your bed for sleeping. Watching the late news, reading a suspense novel, or working on your laptop in bed can stimulate you, making it hard to sleep.
• Keep your bedroom dark, quiet, and cool.
• Avoid liquids and spicy meals before bed. Heartburn and late-night trips to the bathroom are not conducive to good sleep.
• Wind down before bed. Avoid working right up to bedtime. Do relaxing activities, such as listening to soft music or taking a warm bath, that get you ready to sleep. (A warm bath also may soothe aching muscles.)

(My apologies as I lost the link to attribute source - just know that it's not mine!)
I'm going to give them a shot - see how it works over the next couple of weeks.

Sharing Achievements - Sunday May 10th

Congratulations to Andy Mac in UK who has shared an achievement:

Drove 3 hours to London night before ..up until silly o clock...extremely bad bed...in lots of pain but I made it outta bed before 8...result!

And to Shirley Armstrong in England who also shares her success...
I have cleaned up done some ironing xx

To sufferers of Fibromyalgia sometimes getting out of bed is a massive achievement.

Well done to Andy and Shirley for sharing their successes.

What have you done today to make you feel proud - share your success here and we'll blog about it.

Didn't We Have A Lovely Time The Day We Went To......

York. Beautiful place - steeped in history and olde-world charm and only forty five minutes by train from home. It was gloriously sunny when we got there. We'd promised E we'd take her again this year and had planned it for early May to avoid school holidays and Summer tourists (the beauty of homeschooling!)

I've been flaring recently and hadn't felt brilliant for a good few days prior to the trip, but I struggled on and somehow managed to get there for 10.30am. I went armed with my walking stick and a bag full of everything I might possibly need for the day (mainly pills - cocodamol, Lyrica and loperamide!)

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York Minster - South Trancept

Petergate, York

We did the usual stuff - visit to the Minster being top of E's list (next to shopping, shopping and more shopping!) where she asked if we could go up the "tower" (That's the square tower on the left of the picture - it has a central spiral-diminishing tread staircase which has worn over the hundred's of years since it was built - and by 'diminishing' I mean that it narrows from two man widths on the bottom tread to less than a child's width towards the top  and you meet people coming down whilst you're going up - I forget how many steps there are but it's a lot. Fifteen years ago I'd done the tower with ease and reached the top to see spectacular views across the beautiful Yorkshire countryside. Yesterday the prospect filled me with abject terror - I had a little panic attack at the thought. I joked to E that it would probably wipe me out after three steps and swiftly moved on to the next attraction. But I really think she'd love to go up there with me. She seemed a bit disappointed but she accepted that it was probably beyond her old Dad's capabilities at present (or ever again if truth be told.)

So, we trundled through the day - me clicking around the cobbled streets with my walking stick - taking frequent rests, and a good day was had by all.......until the rain started and the temperature dropped and my hip pain really kicked in and my reynaud's sent the blood away from my fingers, and today I feel like I'm as old as the Minster itself.

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The Shambles

Struggling with Jerks!

I'm having a bit of a flare at present. It's affected my guts (as usual) and also increased the pain in my lower back, and this time I've noticed sharp stabbing pain in my joints - mainly my knuckles and knees. On top of this the skin around my knuckles has decided to start splitting and cracking open. It's really dry and no amount of creams rubbed in, or drinking of water seems to have stopped it. The thing that's bothering me the most is the stabbing pain in my joints - it's like the joint is cracking or trapping a nerve for the briefest moment, but the pain lingers for a couple of seconds afterwards - a really sharp pain like someone's injected the joint with a needle that's too big for for the job and then slowly removed it. It's disconcerting - especially when you're serving a customer and handing them their change! I've thrown more money at people this week than I've ever thrown at anyone before! And it can happen even when I'm resting - watching t.v with a nice cup of hot tea, one second firmly gripped, next second in my lap. I think I should add 'scalding' and 'blistering of thighs' to the list of fibro symptoms!

I wonder if anyone else has encountered this strange phenomenon?

(BTW - I get stabbing pains in my muscles all the time so I'm used to uncontrollable jerking movements. Just never had them in the joints before.)

Pregabalin (Lyrica) Yet Another Trial!

Because of current flare doctor has decided to try me on Lyrica again, albeit a slightly lower dose than previous attempts; 300mg per day instead of 600mg last time round which caused horrendous dizziness and a "spaced out" feeling.

Here's what I can source relating to Lyrica and how it is used to treat fibromyalgia - oh, and the potential side effects.

*Fibromyalgia pain is believed to be brought on by nerve-related changes, which cause nerve cells to fire off too many signals. This renders a person overly sensitive to stimuli that are normally not painful.

Scientists aren't exactly sure how Lyrica improves fibromyalgia symptoms, but laboratory research suggests Lyrica helps decrease the number of nerve signals, and as a result calms down overly sensitive nerve cells. This appears to alleviate pain in patients with fibromyalgia.

How Do You Take Lyrica?

When used for fibromyalgia, Lyrica is a capsule that is usually taken in divided doses twice a day. Doses range from 150 milligrams to 450 milligrams a day. Your doctor will determine the best dose for you. If you miss taking one capsule, you should take it as soon as possible -- unless it is close to the time when you are supposed to take the next one. Never take two or more at the same time.

You should not suddenly stop taking this medicine. Doing so can give you a headache, upset stomach, diarrhea, and sleeping difficulties. If you wish or need to stop taking the medicine, your doctor will tell you how to slowly reduce your dose over time.

The Benefits of Lyrica
Lyrica can quickly reduce pain, improve sleep, and help some people with fibromyalgia function better and get back to their daily routines. (I can't wait! Where's my first dose!!)  In studies, some patients reported significantly less pain after taking Lyrica for only one week. Lyrica, however, may not help everyone with fibromyalgia.

Side Effects of Lyrica
Side effects appear related to how much Lyrica you take. That means the higher your dose of Lyrica, the more likely you may be to have side effects.

The most common side effects are:

• Mild-to-moderate dizziness
• Sleepiness (Already have!!)

Other common side effects include:

• Blurred vision (Already have!!)
• Dry mouth (Get this already!!)
• Swelling of the hands and feet (Yup!!)
• Weight gain (Could do with bulking up!)

Lyrica may also make it hard to concentrate and pay attention, (Just what we need!!) which can make driving dangerous. Ask your doctor if it is OK to drive when taking this medicine. You should not drive or operate machinery until you know how the drug affects you.

In rare cases, severe allergic reactions occur. Seek immediate medical help if you have:

• Breathing trouble
• Hives
• Swelling of the face, mouth, gums, lips, tongue, or neck (Hmmm!)

Before You Take Lyrica Always make sure your doctor knows about all the other medications you are taking. This includes over-the-counter drugs, as well as herbs and supplements. Some prescription medicines may interact with Lyrica and may lead to dangerous side effects. Such drugs include:

• Blood pressure medicines called ACE inhibitors; taking Lyrica with these medicines increases your chance for swelling and hives.
• Diabetes medicines Avandia (rosiglitazone) or Actos (pioglitazone); if you take these drugs with Lyrica, you may have a higher risk for swelling or weight gain.
• Narcotic pain medicines (such as oxycodone), anxiety medicines (such as lorazepam), and tranquilizers; combining these drugs with Lyrica increases your chances for dizziness and sleepiness.
• Sleep medicines make you nod off, and Lyrica can cause drowsiness. Combining the two can be dangerous.

Do not drink alcohol when on Lyrica. (Bummer!!) Doing so can increase Lyrica's side effects and make you dangerously sleepy. (I haven't slept well for 12 years - surely one can of Stella won't hurt???)

Also tell your doctor if you have any other medical conditions, including:

• Bleeding disorders or low platelet counts
• Heart problems
• Kidney problems or if you receive kidney dialysis (a lower dose of Lyrica is needed if you have kidney problems)

So, a few things to mull over as I start ingesting this particular drug. From memory I don't think I experienced anything other than extreme dizziness last time round.

Has anyone had a really bad reaction to Lyrica? If so, please let me know in the comments below.

*Source: WebMD - http://www.webmd.com/fibromyalgia/guide/lyrica-for-fibromyalgia-treatment