the MIRREN LEE

The 2012 Act Three Journey of an Actress/Coach/Writer.

Day 127 Don’t Stick Me Yet!

Posted by themirrenlee on 06/05/2012

I am one of those whose Fibromyalgia is accompanied by Chronic Fatigue. It wasn’t always so – just seemed to happen when I stopped sleeping about 5 years ago as a result of good ol’ menopause.

Those of us who have both probably do what I do: spend every day wondering which is worse, and if I could choose just one, which would it be?

But wait, there may be hope!

When I’m in pain, I think I’d prefer the fatigue; when I can’t lift my head from the pillow, I think I’d trade it for the pain. When I’m suffering with both I say: “Stick a fork in me – I’m done.”

But wait! Hold that fork. Having suffered both since I moved, I was ready to float out on a Brompton Cocktail, especially since the Chronic Fatigue had me in a tight grip. What kind of quality of life is endless exhaustion and pain, when the only thing that you can do is lie flat on your back, drugged to the eyeballs?

Then, miracle of miracles, a breakthrough last night. I slept ALL NIGHT, WITHOUT DRUGS! OMG, get out the party poppers and annoying noise makers.

The upshot of that amazing occurrence is NO DRUG HANGOVER and a feeling of having slept. Again, OMG.

I ended up getting OUT OF BED, dressing and running errands. Admittedly, I was pretty tired and sore after 2 hours of getting what I needed from the mall (They’re so big now that I sometimes get an electric wheelchair, just to help with the walking, and let me tell you, they are COOL!), but I DID it. I felt like a functioning member of society again. Really helps with the tendency to feeling depressed and frustrated.

Why did it happen? Dunno. Will it happen again tonight? Dunno. I may still need that fork, but I hope not. One of the most terrible things about Fibromyalgia is its total inconsistency, along with so many variable symptoms in each individual. Some find it progresses, some find it doesn’t. I, personally, was controlling it quite well until The Hell of Menopause. We’re talking peri/pre menopause, which went on for about 10 years with me, and I didn’t actually finish until I was 59. A nightmare. Most of the symptoms are better now – especially the sweats – and bio-identical hormones have helped a lot. So did HRT, but bio-identical ones are safer when one has a strong history of breast cancer. (Don’t let doctors tell you there have been no studies done on them. That’s a lie. Just do some research and see. Read Dr. John Lee’s book, “What Your Doctor Won’t Tell You About Hormones”, as well as the most recent ones. There is SO much information about them.)

You can Google “The 35 Signs of Menopause”. I had 28 of them! I’m still suffering from the ravages of the menopause making the Fibro so much worse, particularly with the sleep issues. My advice if you haven’t started with any menopause symptoms yet, and you have Fibro, is to be hyper alert about it and try to treat the symptoms early because it really changed my life completely for the worse. I’m still hoping I’ll regress to how I was before  it all started – still having Fibro but managing it, including continuing my coaching/acting workload.

Men, re menopause, may I say with the greatest respect: You’re just damned fucking lucky!

The thing about chronic pain is that it’s what can lead to chronic fatigue. The body just gets worn out with hurting. Even if you don’t get Chronic Fatigue as a syndrome unto itself, you may find yourself feeling utterly exhausted at the thought of trying to do ANYTHING, because then you have to battle the pain. It’s like if you hit your head against the wall, it hurts, you do it again, it hurts, etc. then someone says to hit your head against the wall – you probably don’t want to!

Then the thing about chronic fatigue is that it clearly can lead to chronic pain. They’ve done many studies of the results of sleep deprivation, and one thing always becomes clear: people’s muscles start to ache after only a few days of no sleep. No wonder it’s a popular form of torture! So obviously, good sleep is a vital factor in helping to control muscle pain, no matter what it’s caused by. The HUGE problem is that I haven’t found a sleep aid yet with a short enough “half life” so that it doesn’t cause a hangover the next day. Except Temazepam, which is wonderful – through your system in about 6 hours – but it lost its effectiveness when my sleep “button” got turned off completely. So you may get some sleep with Stilnox or Lyrica or Mersyndol (the antihistamine is what makes you sleepy) or Phenergan (antihistamine), but you’ll probably feel hungover and tired the next day, so your functioning level will be about the same as getting no sleep. It’s a horrendously vicious cycle.

If you don’t have Valium from your doctor to help relax your muscles, especially in the afternoon as the day wears on, then you should. Doctors are notoriously neurotic about prescribing Valium, worrying about addiction issues, but blithely prescribe Tramadol and antidepressants, which are so horribly addictive that they take weeks to come off of. I have used 5mg of Valium in the afternoon for about 30 years, have never been addicted and haven’t even increased my dosage. That 5mg just helps me to move my muscles while the Tramadol, low dose Cymbalta and 6 hourly Panadol Osteo help with the pain. I’ve never found Valium to help with sleeping.

Circadin is on the market now – expensively – but it’s simply slow release Melatonin and not that effective as a sleep agent. And you can buy regular Melatonin cheaper. One hint: we “grow” Melatonin in the dark, which means if you turn lights on when you get up in the middle of the night – to pee, for instance – that’s when you’re losing it. So try to find your way in the dark if you do have to get up, or increase your intake of Melatonin.

Having said all of the above, everyone is different, and their reactions to medications are different. My best friend can take doses that would knock a horse off its feet, while I have to always start with the lowest dose. My concern is always when I read that sufferers haven’t even been offered the option of the many drugs that are available. There is an actual term for doctors who are afraid to prescribe heavier medications, and it’s “narco phobic”. Tramadol, for instance, is a yucky drug in that it’s so addictive for me if I miss my dose by only a few hours I start to feel it, but it’s been the best for ongoing pain relief.

Here’s where I really have to mention that fighting the pain on a regular routine, proactively, not just throwing things at it, reactively, when you start to hurt, is the recommended way to deal with pain endorsed by chemists (who DO know their drugs) and smart doctors. Chronic pain calls for “chronic medication”.

Okay, I just had to get all that off my chest. I would never presume to know everyone’s individual needs or situations, but I do have a lot of experiences and insights because I am the only 30 year veteran of this condition that I know. I used to wonder why, why, why do I have this, and now I can at least feel that maybe I have something to offer to those who are still getting used to their new “constant friend”.

I’ve never heard of anyone getting rid of it, i.e., going into total remission, but I have heard of it receding a bit, like the tides, the same way that it can flare without notice. Those of you who are still in the “denial” phase (you go through the stages of grief with a chronic illness as your old identity dies and your new one takes shape) of Fibro may need to face the fact that you have it and it’s not going away soon, no matter how much exercise you do, or drugs you take, or specialists you see. It just is what it is. Once you get to the stage of “acceptance”, then you can start to work out how you’re going to live your “new” life.

THERE IS AN EXCELLENT SITE that covers just about every condition/syndrome/mental or physical challenge and disease that you can think of, and it’s like a huge community talking to each other. You choose the areas you’re interested in, and go into to see what people are saying about it – medical advice, breakthroughs, etc. I started there with Fibro and Menopause and it really helped me with information, and comparing myself to other people’s progress/handling of these conditions.

THE NAME IS:    Online Support Groups and Forums at DailyStrength.

I am actually feeling both tired AND sleepy, so maybe I’ll get lucky again tonight. Oh, wouldn’t that be wonderful? I have SO much writing I want to do, and I still have to get to Sydney! Luckily, my friends are looking after me, and I have this haven to wait in until my strength gets back up for the drive.

So, tonight …

I’m just hopin’ …

One Response to “Day 127 Don’t Stick Me Yet!”

  1. I’m so glad you’re feeling good today! Good sleep is a definate plus with this disease. I know, when I’m going through the insomnia phases, I’m hosed for anything resembling decent daytime duties. Just getting out of bed sucks!

    My doctor prescribed Lunesta for me and I tell you what, it’s HEAVENLY getting sleep! I don’t take it every night because he said only when needed but I can DEFINATELY tell the next morning if I didn’t take it! Like last night I didn’t take it and today I’m hurting a bit more than I had for a few days. Then again, it might be the cold front that came through last night, I dunno. So damned many things set off these flares 😦

    Remember not to over do it today. You know how this crap hits us when we do.

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